I am very proud and excited to introduce Wilma! My new, custom wheelchair.
Realizing I needed a mobility aid
It was quite a long process to get approved or a wheelchair. First, I had to get over my own internalized ableism and the stigma surround wheelchair users and admit that using a wheelchair would be so beneficial for me. When I took a steep downturn in health and went from mild to moderate to severe ME within about two months, I cried to my boss saying I don’t think I can do my job and I’m afraid I’m going to end up in a wheelchair if I’ll be able to get around at all. I don’t know why this upset me at the time. I was afraid at the loss of mobility because it was happening rapidly at the time and I was still ignoring the signs and continuing with harmful treatment (physical therapy and pushing through). I remember looking at disability advocates online and thinking, I have those symptoms, maybe if I actually have that diagnosis I can get a wheelchair. It took me many many months to realize that my diagnosis doesn’t determine my need for a mobility aid, my symptoms do.
Navigating insurance and the cost of wheelchairs
A diagnosis doesn’t determine the need for a mobility aid, the symptoms determine the need for mobility aids.
Unfortunately, that’s not how insurance works. I needed diagnostic codes on a referral order for durable medical equipment. Many people with M.E. and other chronic illnesses have such a hard time finding a doctor to believe the symptoms and offer ways to cope with these symptoms, since there is no treatment. Despite the many physical symptoms that I show, such as autonomic dysfunction (tachycardia, bradycardia, high blood pressure, low blood pressure), orthostatic intolerance, exercise intolerance, muscle weakness, swollen lymph nodes, sensitivity to light and sound, painful tender points on the body and more, I have been diagnosed with “syndromes.”
A syndrome is “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.” There aren’t biomarkers for syndromes, so the validity is sometimes questioned. This makes me furious. Another definition of syndrome is “a characteristic combination of opinions, emotions, or behavior,” showing how this word has been bastardized and now it’s used to minimize our symptoms and illnesses. These symptoms are measurable proof and we are still doubted. When I’m laying down and my heart rate is 55 bpm and then I stand up and it goes up to 125 bpm and then I walk up a flight of stairs and it goes up to 170 bpm, that should be evidence of something wrong with my autononomic nervous system. I can’t mentally control my heart rate. Yet we are treated as though this isn’t proof that we have an illness. These physical signs should be proof of the unmeasurable signs like fatigue and exercise intolerance. You would think it would be easy to explain that me standing for ten minutes with a heart rate of 160 bpm is the equivalent of a healthy person who only gets a HR of 160 pm by sprinting for ten minutes. So imagine that you’re sprinting through the store every time you shop instead of standing. Yeah, sounds great, huh.
My doctor used the diagnosis codes for ME/CFS, fibromyalgia and Postural Orthostatic Tachycardia Syndrome (POTS) for my wheelchair order. She wrote that my fatigue and pain prevent me from being able to self-propel and recommended a power wheelchair. She also wrote about how POTS affects my fatigue and how I am unable to stand for long because of the variation in heart rate and blood pressure caused by POTS. My primary care doctor wrote the referral on November 1.
Before my symptoms became moderate to severe, I bought a wheelchair on Amazon (on the left, modeled by my cat, Janet). I bought a Drive Medical brand chair with elevating leg rests. Putting my legs up helps relieve POTS symptoms. The chair was about $180 and I was able to use my FSA card on Amazon. I had a few issues with using this chair. The wheels are positioned too far back for my body, so when I reach back to grab them to propel myself, it causes a lot of pain in my neck and shoulders. I’m tall for a woman, but average height overall at 5 ft. 9 inches, so I was surprised that I didn’t fit well in the chair. I added a seat cushion to lift myself higher, but my knees were still higher than my hips and it caused hip pain. When I used the elevated leg rests, I would flip the foot rest aside, so that my legs could be straight. This chair isn’t really meant for self-propelling, but is a good option if you have someone who can push you. It’s also really important to note that wheelchairs are not affordable. Amazon has the most affordable options that I could find. People who use these wheelchairs are valid wheelchairs users. There is no competition and no need to justify who is more disabled based on how expensive or how fancy a wheelchair is. It’s very important to dismantle gatekeeping within the disability community. Some people don’t have access to doctors who will listen to them and give them a diagnosis. Some people don’t have the financial ability to go through the process of getting a wheelchair through insurance, which is still far more expensive than getting on on Amazon.
I took the referral to a wheelchair company called Numotion and they had me schedule an evaluation with an Occupational Therapist. I got lucky with the OT because initially they were booked 8-10 weeks out, but there was a cancellation and I got in for the first appointment on December 5. This appointment was very helpful because she wrote an extensive report for insurance and I was able to try out various wheelchairs to find one that was best suited for me.
The OT asked questions about how my illness affects my ability to do things like use the bathroom, cook a meal, or take a shower. I hadn’t really realized the extent of my illness until she brought it up. The hallmark symptom of M.E. is exercise intolerance or post-exertional malaise. This is a fancy way of saying that there is a significant worsening of symptoms after even minor physical or mental exertion. A good example is that I need to lay down and rest and sometimes need to nap after taking a shower. I can’t stand up in the shower and either use a shower stool to sit or I take a bath. I usually only bathe twice a week because of my symptoms. I also find myself delaying using the bathroom because of the energy it takes to get to the toilet. I am unable to cook for myself because I can’t stand at the stove in the kitchen. These examples of how my illness affects “activities of daily living” were important to demonstrate my need for a mobility aid to the insurance company.
The OT also measured my strength in my arms, legs, hands, and feet. My left side is still significantly weaker than my right side, following surgery on my left ankle in 2017. She also had me walk down the hall and timed how long until I got dizzy and noted my heart rate when I was sitting, when we started and when I had to stop. We also timed how long it took for my heart rate to come back down to normal when I came back to the room to rest. The OT was very thorough and took the full allotted hour and a half. She didn’t want to rush me trying out chairs so I came back the following week to try out different types of wheelchairs.
I got the wheelchair on January 31. The entire process took 13 weeks. Thankfully the OT and Numotion were able to rush the process and insurance approved me on the first try, so the process was actually faster than it could have been. They told me 12-16 weeks and we hurried it along knowing that I would lose my insurance coverage on February 1 and have to switch to my husband’s insurance. I really didn’t want to wait to start the process in February. Already I’ve been able to do things that I haven’t been able to do for months because of my illness, but I’ve still been taking it slow. I don’t want to overdo it because exercise intolerance is so hard to understand and I made myself so sick by pushing so hard for so long and ignoring the warning signs with that symptom.
I also wanted to be transparent and discuss the cost. Even with what I consider to be “good insurance,” this process wasn’t easy and the cost is exorbitant. I paid just over $1,000 out of pocket for the wheelchair and SmartDrive. The total amount on the invoice was more than $21,000 – $7,000 for the chair and $14,000 for the SmartDrive. That’s almost what my car cost, which is totally absurd. I’m not able to work now, but I am privileged that I was able to save money before my illness, I was covered by a short-term disability plan for 6 months and my husband has a great job. This isn’t what typically happens when someone suddenly loses mobility due to chronic illness. I am the exception, not the rule and I still think it was way too hard and way too expensive even though I had it easier than probably 99.5% of people in this situation.
Choosing a chair and features
The hardest part was prioritizing which features were most important to me. The hardest part with the chair I bought on Amazon was that I could not use it independently. I wanted to find a chair that I could get in and out of my car without much exertion. I have a small SUV, so the chair would have to be lightweight and compact. Many of the power chairs were not suitable because they don’t come apart or I couldn’t lift them into the car. I chose a manual wheelchair with a SmartDrive attachment that turns it into a power chair.
The wheelchair is a helio A6 and is very lightweight. I chose a rigid backrest that is soft and gel-like on my back so that it provides support and is soft. My posture is terrible because I am often too fatigued to even hold myself upright. The back easily slides on and off the chair. I also got elevating leg rests so that I can raise my legs if I am feeling symptomatic. This usually helps lower my heart rate by 10-20 bpm. The leg rests easily detach and swing away so that I can get in and out of the chair. The wheels also pop off easily, but I keep them on because the chair folds and fits in my trunk with them on. [I will add photos of these features later!] It’s light enough for me to lift in and out of the trunk, but usually my husband is with me and he puts it together and takes it apart for me.
Wilma is so much lighter than the amazon chair, which weighed 50 lbs. Since my illness fluctuates, on days when I feel better I am able to self-propel for short distances with Wilma. This is helpful for going crowded places. It doesn’t feel like I am pushing my full body weight plus the chair, like the Amazon chair did. I only struggle if I’m going uphill or if I’m on uneven ground.
I am still getting used to the SmartDrive. It is hard to practice and the hardest adjustment is having to navigate around other people. It has a smart watch where you tap twice to start it, it accelerates and then you tap once to set the speed. Then you tap twice to stop. It can’t abruptly stop, so it was very stressful practicing in a grocery store where people either chose to ignore me or straight up didn’t see me because I’m shorter in a wheelchair. I need to practice more with the settings on the SmartDrive and watch to play with the sensitivity and acceleration speed. I tried practicing outside in my court, but the ground is uneven so it’s very hard to steer while practicing.
I got lifting gloves to use with the chair. There are pads on the palm so that you don’t get any friction burns from the wheel. I need to practice with not trying to grip the wheels to stop them and just applying friction with my palm and an open hand. Getting your fingers hit by a moving spoke while trying to grip a moving wheel and stop it is a bit painful! It’s hard to steer with the SmartDrive because you have to apply pressure to one wheel or the other. If you are on uneven ground, you have to apply a lot of pressure to one wheel to stay straight and I don’t have the strength for that. I didn’t realize this when practicing inside in the indoor environment. I likely won’t be able to be totally independent with the combination of wheelchair and SmartDrive, but I am much better off than I was before. My husband also likes Wilma much better because it’s so much easier to push with the lighter weight and ergonomic wheels.
Stop the Stigma
I am so excited that I now have a wheelchair. I don’t understand why non-disabled people continue to stigmatize wheelchairs. Like a post I saw recently, I’m literally just a person sitting down. Don’t you like sitting down in a comfy chair? I just bring mine with me because I need it wherever I go!
I wonder if I had been involved in an accident and suddenly lost my mobility, rather than this gradual decline, if I would have reacted differently. I think non-disabled people view a wheelchair as something being taken away, rather than something being given back. Yes, I have lost my mobility and I can’t stand up or walk around. My symptom of orthostatic intolerance is just a fancy way to say this lady cannot stand up, her body freaks out. But my wheelchair gives that freedom back to me. I can go to the store now without having to turn around and leave if there are no electric scooters left. I can go have a drink with friends because I don’t have to worry about becoming dizzy and lightheaded because there are no open seats. I can go to a football game again without having to worry about fainting waiting in line at the gate. I can go with my husband and my dog for a walk around the neighborhood and get some sun without needing to take a nap afterwards.
Me using a wheelchair is not “heart-breaking” or “a shame” or “sad to see.” It’s not traumatic or deserving of sympathy or tears. It’s liberating. I have regained some of the independence and freedom that was taken by illness. I can go be in the world instead of stuck in my bed or on my couch. I can spend more time with the people I love and less time recovering from it. I have always found joy in new experiences and new places. Now I can be a part of those spaces again. But at the same time, my wheelchair isn’t here to be an inspiration. It’s just here to help me live my life. Just like your car or your favorite pair of shoes or your new backpack purse that doesn’t hurt your shoulders like all your other bags did. We have so many tools that help with so many things and a wheelchair is just another example of that, so please don’t treat it like it’s some sort of terrible affliction or something that needs to be overcome. I love it and I’m so happy to have it, but it’s just another tool.
Today is ME/CFS Awareness Day. If you’re healthy, please take some time out of your busy day to read this and learn a little bit about chronic, post-viral illness. This next paragraph is for you. If you have ME/CFS or another post-viral chronic illness, you already know this story too well. Your story probably sounds a lot like mine. You can probably skim many parts of this as you’ve lived it. If you’re new to the community, I’m sorry to welcome you here, but my story will show you how great it is that you’re here. This post is for us – the #MillionsMissing who have been fighting this illness and the systemic failures that caused it. This post is for me – a safe place to release of all these hard feelings and contradictions – the hopefulness of new progress and the hopelessness that it’s taken a pandemic and #MillionsMore to finally be getting some attention – with people who understand and support me without an explanation. It’s for ME – a severely neglected and stigmatized illness that deserves funding, research, and support that is decades overdue.
ME/CFS is a neuroimmune condition that is often (though not always) triggered by infection and affects every bodily system. Most doctors do not know what ME/CFS is due to a long history of stigmatization and neglect. This syndrome often gets reduced to one symptom, fatigue, but it is much more than that. Fatigue doesn’t even begin to describe it. Now, we have a better definition for the hallmark symptom of this illness, post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE). This is a delayed worsening of symptoms following minimal activity. Fatigue is a normal response to overworking. PEM/PENE is not. For example: I developed a low grade fever and had to sleep the rest of the day after a 15-minute phone call with my Mother on Sunday. We have no approved treatments and the only option we have for managing symptoms is pacing. I have to be incredibly careful of what activities I do on a given day. I need at least a day of rest before an activity and at least two days rest afterwards – it’s incredibly disabling. Despite 2.5 million Americans with ME/CFS – and an estimated 3 million more with Long Covid that meet diagnostic criteria for ME/CFS, most medical professionals are unaware of this devastating illness and the true meaning of it. Most think it’s just “unexplained fatigue.” However, the diagnostic criteria requires that a patient have a substantial reduction in activity lasting more than 6 months, PEM, and unrefreshing sleep, with these symptoms lasting more than half the time. The criteria also requires one of the two: cognitive impairment or orthostatic intolerance.
Despite having symptoms for a decade, I was not diagnosed with ME/CFS until 2019. Prior to that, I was diagnosed with fibromyalgia, which has many overlapping symptoms but is diagnosed based on pain at certain trigger points. I followed some fibro bloggers but didn’t really think that what they were saying matched my experience. When I was diagnosed with ME/CFS, my doctor told me that this was “a waste bin diagnosis” to capture my symptoms but that I had some mysterious illness that hasn’t been figured out yet. This is false, but I didn’t know that. I was given a one-page flyer and that was it. I also ignored my doctor’s advice to cut back on work hours or find another job. I regret that now. I still blame myself for continuing to push through debilitating symptoms to the point that I’m now disabled, but what other option did I have? Our society constantly pushes the false narrative that I could work through it, I could have a positive attitude and ignore my discomfort and it would go away. That is so wrong and so harmful, but it wasn’t my fault.
A few months after my diagnosis, when I wasn’t improving after a steroid pack and other treatment attempts, I came across a tweet about #MillionsMissing from one of the fibro bloggers I followed who also has ME/CFS. Finally I realized that I didn’t have a mystery illness – I have a neglected, stigmatized and ignored illness. I wasn’t alone. I fell down a rabbit hole of #MillionsMissing posts and found explanations for my symptoms – the payback after minimal activity, the brain fog and cognitive issues, the pain, racing heartbeat, dizziness, and more.
After a decade of doctors telling me nothing was wrong and me desperately wanting to believe them instead of my own experience, I was finally validated. This syndrome explained nearly all of my symptoms. I was motivated to learn everything I could. I have shelves full of medical books now. A bookmarks folder full of medical journal articles. I didn’t have the language to explain my symptoms so I learned medical terms, made diagrams of my symptoms, and meticulously tracked my activity, meals, and sleep to find my triggers. I have binders full of my medical records that I have poured through, looking for evidence from 2009 until now of the onset and the triggers that worsened my condition. I thought I could think my way out of illness, but it doesn’t work like that.
The #MillionsMissing taught me that my illness isn’t a personal failure that I brought on myself. Unfortunately, I also learned that this illness is a tragedy resulting from the systemic failure of our healthcare system, medical research, and culture that marks resting as laziness and failure. However, I am hopeful that we can inspire change in these areas. I didn’t realize the toll that seeing these failures repeated and further exposed by the Covid pandemic and growing numbers of Long Haulers would have on me. My symptoms are edging closer and closer to severe ME and I am realizing that I am not alone and I don’t have to feel like the weight of advocacy and awareness is on my shoulders. It is devastating to see so many more stories similar to the beginning of mine, but I have hope that theirs will end with a happier ending and that maybe mine will too. The #MillionsMissing deserve a happy ending.
We now have #MillionsMore joining our ranks after an acute covid infection became ME/CFS. We have more than doubled in number. We warned of this last year, and I felt ignored and misunderstood as a result. But I guess that’s understandable – healthy people don’t want to believe that you can get sick and never get better.
Now I realize that #MEAwareness Day is not for them. Though we desperately need healthy allies, it’s not my job to convince healthy people to understand and care about my illness (and in turn to understand and care about me). It’s for the people that are in the place I was in two years ago. Alone and unsupported, given a diagnosis without an explanation of what it means, left on their own with no treatment plan, pushing through and declining and not knowing why. #YouAreNotAlone
Instead of feeling discouraged that my healthy friends never interact with posts like this, I feel hopeful that by sharing my story, someone else will have the experience I had in 2019. Someone else will find community, knowledge, support, and maybe even advocacy like I did! I wish I remembered who shared that #MillionsMissing tweet in 2019 that changed my life. The tweet that made me realize there was a biological explanation for what I was going through and that this illness was not my personal failure. The tweet that inspired me to watch the film Unrest and made me realize that the lazy diagnosis of conversion disorder was just that – a lazy explanation that isn’t even based on science and most importantly, a misdiagnosis. The tweet that led me to the film that inspired me to connect with #MEAction and join patient-led advocacy. The tweet that led me to the film that led me to the organization that provided me with friends that provide the support and guidance I so desperately needed, but that can only be given by someone who is going through it. This is what #MEAwarenessDay is for – it’s for us, the ones affected, the ones that deserve support and care and treatment. So even though right now it feels like we’re doing it all on our own – managing our illness and fighting the systems that made us this way from our beds, while we should be focused only on healing our own bodies – we’re doing it so that those that come next don’t have to do it all on their own for quite as long as we did. So that those with Long Covid are diagnosed quickly before their symptoms progress in severity. I may always be resentful and angry that I was undiagnosed and disbelieved while I had mild ME and it took progressing to moderate ME and becoming mostly housebound and often bedbound to be diagnosed and believed. But it doesn’t have to continue this way.
Days like today are for us – so that we can feel safe and supported sharing our stories. I was so fearful to tell people what I was going through because there is so much misinformation about ME/CFS (look up GET and PACE trials) and I didn’t think anyone would believe me and oftentimes, people don’t. I “came out” as a person with ME during the #NotEnough4ME campaign in November 2019. I was able to share other videos of stories like mine to validate my story. That’s the best part of this community. We now have a safe space to share our experiences and be validated and vindicated.
Awareness doesn’t feel like enough to make a change with this illness and it is discouraging that after decades and decades of advocacy, we’re still having to fight for awareness, but if it reaches just one person with ME and they can finally have an explanation and support, it’s worth it. I often feel like I’m just posting my diaries for nobody to read, but just for the purpose of me getting these thoughts out from my spinning mind. How many people will even reach the end of this? Let me know if you did. I will applaud you. As much as I desperately want my friends, family, acquaintances to read this and believe me – this isn’t for them. It’s for me and it’s for everyone with ME to know that we’re not alone, we don’t have to keep fighting this beast alone, and we shouldn’t be doing this all on our own.
My biggest challenge is the feeling that I’m not doing enough. I’m not doing enough to educate others about this illness. I’m not doing enough to advocate for funding. I’m not doing enough to make myself well. These are lies. Just by existing with this illness, we are doing enough. I haven’t been able to participate in planning or events for awareness day due to my symptoms and that is hard. But I’m doing enough. I’m battling this illness every single day. Even on the days when I am stuck in bed, unable to tolerate any light or sound, I am doing enough because I am living with ME/CFS. My friends with ME/CFS – whatever you do today, it is enough. You don’t have to participate in events or share your story – just by being a part of this community, we are enough and I am hopeful that the sheer numbers of us will finally grant us the power and influence we have deserved all along.
I rescued a baby bat today. Sometimes I wonder if my teenaged or 20-year-old self would recognize the woman I’ve become. I’m so different now in a good way. I have boundaries when it comes to other people, but a seemingly limitless spirituality, and unity with my body and the Earth in ways I didn’t know were possible. I kept myself so busy for so long and now I’m so happy with what I’ve discovered in the stillness. I sound like a hippie, but I don’t care.
I used to be scared of bats. When we’d swim in my parents pool in the summer, they would swoop down from the trees to quickly dip beneath the surface and fly away. I remember standing in the shallow end, talking to my cousin, lit by the glow of the pool light, and a bat splashed inches in front of me and I screamed. I remember seeing a bat climb up our neighbor’s house and I was scared of it’s human-like arms, reaching and pulling up the bricks.
Earlier this spring, I gasped and was startled when I saw a bat drop from my neighbors eaves and fly towards the forest. Then I continued watching in awe as others followed. I started sitting on the porch each night at dusk to watch them take the plunge, falling from the eaves, then righting themselves and flying towards the woods. I’d listen to their chattering as the sun started to set and wonder what they were communicating to each other before they took flight one by one into the night.
The bats left as spring turned to summer. The attics of our townhomes provided a warm, quiet refuge for winter hibernation, but now they must venture out into the woods for summer to feast upon the mosquitos, moths, and beetles that have also begun to take flight after the sun goes down each night. But, they left someone behind.
Now, when I see this tiny creature struggling in the dirt in my backyard, I am not afraid. I feel a motherly urge to take it in my hands, share my warmth, and comfort it. For ease, I’ll call it a he because I’m thinking of Batley, the bespectacled bat from Eureeka’s castle that I enjoyed as a child.
I started to overcome my fear of bats and feel a sense of connection with them after reading about white-nose syndrome, which is caused by a fungus that feeds on the skin of hibernating bats, in the Pulitzer prize winning bookThe Sixth Extinction: An Unnatural Historyby Elizabeth Kolbert. The fungus is thought to have originated with greater mouse-eared bats in Europe. They carry it, but aren’t affected by it. Humans brought the fungus to North America, where it has killed an estimated 6.7 million bats since 2006 (source: Pennsylvania Bat Rescue).
I learned that bats cluster in caves in the winter, where the fungus quickly and easily spreads from bat to bat, typically killing 70 – 90% of bats in colonies and sometimes eradicating the entire colony. Bats are social creatures. In the spring, those that survived the winter, then leave to visit other colonies and spread the virus to other bat colonies and species.
I thought about the similarities to humans. The need for companionship and safety these bats must feel within their colonies, coupled with the social aspect of migrating and meeting with new colonies in the spring, and how this fungus exploits that need with deadly results, leaving a few species near extinction.
In the book, Kolbert described traveling to the Aeolus Cave in Vermont to find bat carcasses littering the floor, with the tell-tale signs of white-nose syndrome. The next year, she returned with scientists and they found even more dead bats. The survivors amounted to only 10% of the colony’s former numbers. Now, the floor of the cave is thick with bat bones, as Kolbert also recounts in her 2010 New Yorker article, Batless.
Kolbert also highlights the impracticality of Darwin’s theory of evolution here. Darwin was working with distinct ecosystems, isolated environments, and natural barriers. This theory does not account for the invasiveness and globalization caused by humans.
Right now, I feel a stronger connection with this helpless, baby bat than I do with most of my fellow human beings. I am feeling alone and neglected when it comes to my own species. I feel a sense of kinship and affinity towards this tiny, helpless creature. Many will say he’s ugly, but I think his tiny ears are adorable. His wings are so delicate. HIs fingers and toes are so fragile and small as they grasp for stability.
Many would say this is survival of the fittest. His colony left him behind because he wasn’t strong enough to fly with them. But they didn’t account for all of the ways we can support him. Just like my own species often doesn’t account for the ways we need to support each other and that every life is sacred and valued.
Right now, my own species is being decimated, not by a fungus, but by a virus that, somewhat ironically, originated in bats. We’re not handling it well. Many people are being overwhelmingly inconsiderate and selfish in their day-to-day lives, refusing to take even the simplest precaution to ensure the safety of others by wearing a cloth mask over their mouths and noses. If only COVID caused visible symptoms like white-nose syndrome, then maybe we would do better at limiting exposure.
I have been in a forced self-isolation for nearly a year now. Last July, my symptoms of chronic illness progressed to the point where I became disabled, unable to work, and housebound. The stay at home measures were somewhat of a welcome respite for me. The rest of the world had to experience a bit of the isolation and seclusion I had been experiencing for months and I didn’t feel so alone. The accommodations that so many were unwilling or simply uninformed to make are now easily accessible as friends schedule zoom calls and rely on apps instead of in-person gatherings.
That kinship that comes with mutual suffering was quickly eradicated by what followed. Plenty of social media videos and photos showing people ignoring social distancing, refusing to wear masks, and prioritizing a broken economy over people’s lives. People are so hungry to return to their idea of fun, that they don’t care that I’m left behind and many will be left dead. Once again, I feel like I don’t matter.
Bats don’t know any better. Their survival instinct kicks in and tells them to stay in colonies. I just can’t fathom why our survival instincts aren’t kicking in. We can still be together, we don’t need to give up our colonies, IF we wear masks and practice social distancing. But because people are refusing to do those simple things in order to protect others, hundreds of thousands of people are dead and millions of people are sick. Tens of thousands of people will never recover after this virus and may be left permanently disabled, like me.
I am desperate to make people understand the long-term risks of this virus by showing them the devastating neuroimmune effects of ME/CFS that I am experiencing now. I want to encourage people to protect themselves and others, but they just won’t listen. My fellow humans don’t want my help. But this, hairless, toothless, screeching orphan does, and I will give it to him. I won’t leave him behind, like his colony did. Like my community is doing too.
I haven’t seen any larger bats for weeks, so I know his parents aren’t coming back to carry him to safety. This orphan has been fending for himself in my neighbor’s attic and finally decided to try to make it on his own. Somehow, he survived the fall. I can’t just leave him here.
I googled bat rescues and called a few numbers. The nearby animal rescue people do not handle bats, but I found the Second Chance Wildlife Center to take this little baby in and give him another chance at life. My husband and I put on gloves and carefully scooped him into a small cardboard box with holes for ventilation. He tried to crawl backwards to escape, but wasn’t able to move very easily. They told us to try giving him some “fatty cat food,” but he wanted nothing to do with it and inched his way backwards towards the edge of the box. I don’t think they realized how tiny he is when we first called. I wonder if he is a runt or if he was just born to late in the cycle.
With my illness, I am extremely limited in what I am able to do. I often can’t leave the house. I haven’t been able to drive my car for more than 20 or 30 minutes without my hands and arms being numb and tingling with neuropathy pain for months. But, I got in my car, with the baby in the backseat and drove nearly an hour to the rescue, with no ill effects except for a slight headache. I thought to myself, he may not make it until tomorrow, so I have to take him now. (My husband was tied up with zoom calls at work so I took this upon myself). Thankfully, I started wearing a neck brace yesterday and it seems to be extremely beneficial in stabilizing my neck during the car ride! I started feeling the neuropathy symptoms on the way home, but was pleasantly surprised by how I managed the long drive there and back. We’ll see if I face payback and PEM tomorrow.
As I drove, I worried that he still may not make it and could be dead on arrival. I heard him squeak a few times in succession a few times during the trip. Not the frantic, screeching, cries for help we heard in the backyard, but a few repetitive chirps, like he was telling me he was ok.
I got to the end of a residential street and the sign for the Wildlife Center appeared near a gravel path into the woods. It was beautiful, following the path cut through the woods that opened up to a large clearing with an old farm house and a few structures housing rescued animals. A young woman came out and grabbed the box, asked me questions, and told me to email them if I wanted to check up on his status. I certainly will!
I drove home with a soft smile on my face. I felt calm and peaceful and happy that I could use my time and energy to help another creature in need. I hope that my fellow humans will offer me the same when I inevitably will need their grace in the future.
I got home and thought about everything on my to-do list that I was supposed to accomplish today – the bloodwork I was supposed to fax to a new doctor, the appointment I was supposed to schedule for my next round of immunoglobulin infusions, the referral order from my doctor for the suspicious mole on my back that’s the least of my concerns right now. I said to my husband, ok now what do I do. He replied simply, “You have done enough today. You saved a baby bat. That’s enough.” I want to save the world, but that’s not my responsibility. Saving this baby bat is enough.
One in ten women have endometriosis. It takes an average of 8 – 10 years to be diagnosed if you’re a white woman – longer for BIPOC. It took me 17 years of symptoms and more than 10 years of actively pursuing a diagnosis before I was finally diagnosed with endometriosis December 2019.
Every single year at my OBGYN appointments, I told the doctors how every single month I had 1-2 days where I couldn’t get out of bed and 4-6 days of constant pain. I told them that ibuprofen didn’t relieve it. I showed them photos of the burns on abdomen from desperately seeking some heat relief. I told them how I had to change a super-plus sized tampon every 1-2 hours and sometimes I just sat in the shower while blood poured out of me. I told them how I would experience waves of pain so severe that I could only curl up into the fetal position and try to remember to stop holding my breath. I told them how many sheets and how many pairs of pants I’ve ruined. I told them how the chunks of menstrual blood were sometimes as large as a dime. I told them how menstrual blood starting coming out of my asshole. I showed them photos of how bloated I become and how it looks like I’m 4 months pregnant. I told them how the pain was constant, how it felt like fists were inside my abdomen, twisting the muscles into small, hard knots, pulling and straining my lower back and extending down the back of my legs. I told them how I bled when I ovulated and how it felt like I was repeatedly being stabbed by a burning knife. I told them how the pain was incomparable to any other pain I’d experienced – worse than the pain of norovirus making you explode from both ends at the same time, worse than the pain of walking around with a chunk of my tibia floating inside my ankle, worse than the kind of migraine that leaves you unable to be exposed to any light or sound – worse than anything else I could imagine. I told them the same things over and over for 17 years. They didn’t believe me.
They told me it would get better when I got older – lighter, more regular, less painful. They told me birth control pills would fix the pain and heaviness. They told me an IUD would stop me from having periods. They told me yoga would the pain. They told me my periods would be lighter, more regular and less painful if I lost 15 pounds. They told me diagnosis endometriosis doesn’t matter because there is no cure. They told me I would have pain relief immediately after surgery. They told me I didn’t need opioids after surgery, even though I couldn’t sit up due to pain for two weeks. They told me taking the pill will prevent it from coming back. They told me the side effects I experienced weren’t real. They told me if I won’t take the pill, they won’t treat me. They told me pelvic floor therapy helps some people, but I can’t do it unless I take the pill first and that doesn’t work. They told me it will come back and I’ll need surgery every two years. They told me to get a hysterectomy. They told me my endometriosis symptoms are not related to my ME/CFS symptoms and that they don’t make each other flare.
They told me a lot of lies and fed me a lot of bullshit. And I believed them for 17 years. I still wonder if they’re right and if I should believe them, even though that would mean I was wrong and I’ve never been wrong before when it comes to my symptoms. I believe me.
I believe myself, but it’s nearly impossible to believe what this period feels like. I can’t believe this is what it’s supposed to feel like. I’m on day five and it’s honestly miraculous. I had no fucking clue that this is what periods could feel like.
I’m so happy and relieved to feel this way during my period. But I’m also really pissed off. I’m mad that this is what normal feels like. I’m angry that they thought so little of me, that they thought I couldn’t handle this. This is nothing. This is pleasant. This kind of pain is a friendly reminder that yeah, I’m in pain, but it’s so refreshing that it’s not PAIN. Like when you eat a chocolate-covered pretzel or other salty-sweet snack. The saltiness is a bit shocking and a bit uncomfortable, but it makes the sweet chocolate even more enjoyable. And I’m infuriated that I’ve been forced to deal with so much pain, that I now see slight pain as a fucking treasure. This pain is amusing. No level of pain should be amusing, but that’s how much I’ve numbed myself to this pain.
I have been masking and burying my pain so long, that I am pleasantly surprised and amused when I check in with my body and I’m not met with a massive lump of pain. It’s like I left my dog alone in the dining room with a plate of steak and I come back in and he’s sitting next to the table and the steak is untouched. I totally expected him to eat the steak, but I’m glad he’s just staring at it! I totally expect my abdomen to be twisted into tight knots while being stabbed through with blades of fire, but it’s just a little uncomfortable!
The sad part is, I’m amused by this pain because I know it won’t last. This is the exception, not the rule. There is no cure for endometriosis and the scar tissue will return. The excruciating pain will return. I have this moment now and I know it won’t last.
I’m angry that so many women’s experiences have been invalidated in this same way. Just as these tolerable cramps were unfathomable to me because I never experienced them before, my typical level of pain is unfathomable to my doctors. Pain is subjective, but doctors should be encouraging patients to reframe our pain in a way that helps them understand the severity and to believe us when we do. We shouldn’t have to run down a list of past traumas for doctors to listen to our pain, but apparently a 9/10 makes them think that I’m rating the level 1 of gas pain the same as a level 9 of my internal organs fusing together with scar tissue. My level 9 organ fusing is worse than my level 7 bone fragment floating in ankle is worse than my level 6 migraine is worse than my level 4 sprained wrist is worse than my level 0.2 current period pain. Does that paint the picture for you doctor? More so than just believing me when I told you my bursting cysts and scarred down fallopian tube is a 9?
I’m mad that I had to be a thin, white, cis woman in order to finally be taken seriously when I reported my symptoms. I’m mad because I experienced the doubt due to my weight and I recognize how I’m centering this on me, but I shouldn’t have to battle fatphobia to receive treatment. Black women shouldn’t have to battle racism to receive treatment. Men who menstruate shouldn’t have to battle transphobia to receive treatment. The list goes on. “This isn’t just a thin, cis white woman’s disease!” The thin, cis white woman screams into the void.
It’s so stupid that I have all of this privilege and still felt scared to talk about these issues for 17 years. I’m not scared anymore. I don’t want to hide my experiences anymore. I’m not brave, I’m just tired of feeling like I should be hiding. I’m tired of pretending that periods don’t exist and that periods aren’t extremely terrible for a lot of people.
I sick of hiding how uncomfortable I am physically, because it makes other people (men) uncomfortable. I don’t feel like hiding my bloated belly under baggy t-shirts and covering my laparascopy scars with high-waisted leggings and high-waisted bikini bottoms. I’m tired of hiding the reality of what it’s like to live in this body.
I think it’s cute when I see rail-thin women sharing photos of their bloated endo belly, so why don’t I think it’s cute when I see my own bloated endo belly? It’s cute, dammit! I think if I can practice being ok with the way my endo body looks, I can learn to be ok with the way it feels. That’s probably not true, but I’m using these examples. as tools to practice acceptance.
I recognize the beauty of these pain-free moments, while also recognizing that nothing is permanent. Pain isn’t permanent and neither is pain-relief. This is how I practice acceptance. And I hope I’ll be better at acceptance when this disease returns to ravage my internal organs, but if I’m this angry when I feel good, I don’t think that’s likely.
My anger is justified and valid. My grief is justified and valid. My newfound love for my body is justified and valid. My fear that I’ll be met with skepticism and scorn is valid. My desire to talk about it with people who understand is justified and valid. I’m talking about my endobody because I want to hear you talk about yours and see you write about yours. I’m talking about my strange mix of emotions because I want to hear you talk about yours and see you write about yours. I want to know I’m not alone, so I’m telling you you’re not alone.
So here it is. A list of the symptoms I hate the most. A list of the lies I was told. I list of the ways I’ve been gaslit and ignored. Here’s my bloated belly. Here’s my little scars. Here’s my bruises. Here’s my thinx underwear that can now get me through a whole day! Here’s my pain and my joy. Here’s my endobody and here’s me.
Many disabled people live with guilt and fear that they are not doing enough. I’m working on this. Every session, my therapist reminds me to stop being so hard on myself. She makes an effort to recognize my actions and tell me that I am doing a lot. Managing my chronic illnesses takes a lot of effort and sometimes I don’t have space for many hobbies, friends and activities that I used to love. I am coming to terms with that.
In this moment, white disabled people like me have to recognize our privilege and use it. We have to listen to Black activists, boost their work, decenter ourselves and make time for anti-racism work. While my status as a disabled woman helps me empathize and practice compassion, I am working on ways to be a better ally and decenter myself.
One of the ways in which I can be an ally is to challenge the lies I tell myself, starting with the lie that I’m not doing enough.
My biggest challenge with ME/CFS is that I have the desire and motivation to do so much more than my body allows. I am finally learning to listen to my body. I am finally learning how to stop. In the past, I have continuously pushed myself to do more and more, without recognize the physical, emotional, and mental stress that causes.
For disabled and chronically ill people, we need to be incredibly mindful of when to stop. It’s easy to think that our activism is restricted by our illness and disability, but it’s not restricted – our activism just needs adaptations.
I am so encouraged to see so many Black activists sharing accessible ways to participate in the Black Lives Matter movement. I encourage you to seek out these resources as well.
This list of resources from Rachel Cargle, including a reading list, template to send to your employer for accountability, lecture on unpacking white feminism, a free #DoTheWork course, 75 action items article, racial justice research document, and more.
I am so encouraged and excited to see so many ways that I can participate in this movement while protecting my health and wellness.
I am working on recognizing the work I am doing – not because I want or deserve praise, but so that I can stop being so hard on myself. For so long, I never talked about myself, never shared what I was going through, and I just ruminated on my thoughts, emotions, and pain by myself. This blog is my way to stop doing that and to be open and make space for hard conversations. Here are some things I am doing right now to help support myself as I practice anti-racism:
I reached out to close friends and family to let them know that I care about them, but won’t be able to express it in the ways I have in the past – by reaching out to them and responding to messages. I am making space to focus on my health, wellness, and spirituality, my disability and ME activism, and anti-racism. This means recognizing that I won’t have space for other things, but that doesn’t mean I don’t care about my friendships and family. I let them know that I am here for them to reach out and talk about those things, but that my energy window is very limited and that I am not in a position to be providing them support in other areas right now. I am glad that so many of them were receptive to this.
I am mindfully consuming media. I am unfollowing people that aren’t trying to make these necessary changes in their lives. I am muting some people so that I can focus on online activism. I turned off social media notifications so that I am less likely to become distracted and pulled in by a notification. I engage in social media during a set time period when I am ready and able to participate. I am also being more mindful about what I share and why I’m sharing it. I’m trying to remove ego from it. This isn’t about me; this is about all of humanity.
I am recognizing that I am doing enough and I can participate in this movement in ways that are accessible to me and won’t cause me harm. This is especially important for other people with chronic illness, disability, and trauma. My volunteer work with MEAction has been so helpful in this area. I listen to others when they ask me to check in with my body and see how I’m doing and I listen when they encourage me not to overextend myself. Which brings me to my last point.
I am trusting myself and practicing self-compassion, which is much easier said than done.
I recently read the book Start Where You Are by Pema Chodron and was struck by how applicable these meditation practices are to the current moment. Chodron writes: “If we are willing to stand fully in our own shoes and never give up on ourselves, then we will be able to put ourselves in the shoes of others and never give up on them. True compassion does not come from wanting to help out those less fortunate than ourselves but from realizing our kinship with all beings.”
She focuses on the fact that compassion for ourselves leads naturally to unconditional compassion for others. It’s also vital to recognize that while my experience with ableism and misogyny can help me practice compassion and empathy, drawing comparisons in this way puts myself at the center of the issue and this movement is centered on Black Lives.
Starting with the principle that I cannot compare racism to struggles I experience, I can use this framework to learn about white saviorism. As @wastefreemarie says in her How to Ally post, “You’re not rescuing us from our own situation. You are simply making an effort to lessen the hurt that you have caused.” Making the effort to lessen the hurt that I have caused IS doing enough and it is hard work.
I can use my empathy and compassion by drawing parallels with my experience advocating for disability justice, while understanding that these issues are not the same. I recognize that I’m still learning here and I encourage messages to let me know if I have mis-stepped. I am now in a position to better understand the concept of white saviorism because of my newly-developed disability. I thought I was doing good work advocating for ADA changes in the past, before I was disabled, but now I recognize that I wasn’t truly listening to the people affected, just as I have done with race issues. When I try to recruit healthy allies in my ME activism, it’s not under the expectation that they will rescue us – we are leading the fight but we need all the support we can get. With that perspective, I am better able to understand that I am not a savior, but Black activists deserve my support. I am learning not to be defensive and to listen earnestly. I am learning to give Black people the benefit of the doubt, just as I do with people who are disabled and sick when they ask me to believe their stories. This is hard work and it is important that we recognize that by doing this work for ourselves, we are doing enough.
I am making an effort to talk to other white people about anti-racism. I am creating space for other white people to talk to me about these issues, rather than expecting Black friends to educate us or talking to Black friends about our white guilt. I am guilty of relying heavily on my Black friends for education and emotional support. I am working on decentering myself and instead, honoring and centering the feelings of Black people.
But don’t listen to me – practice this for yourself and learn from Black activists. That’s one of my favorite tenets of Buddhism – that people are encouraged to explore and learn from your experiences and the experiences that others share with you, rather than blindly following. This practice of openness – an open mind and an open heart – is so important.
Practicing mindfulness is so beneficial to me in this moment. One of the tenets of mindfulness is to recognize thoughts without labeling them as “bad” or “good.” A thought it just a thought. A feeling is just a feeling. They are neither good nor bad. But, this framework needs to be put into perspective when it comes to racist vs anti-racist thoughts and beliefs. Racist thoughts are bad, but that does not mean YOU are bad. If I recognize a racist idea or thought, rather than repressing it or ignoring it, I recognize that although this thought is racist, I am working to be anti-racist. This is especially important for white feminists and disability advocates as we unpack our privilege.
Chodron also says, “If you know it in yourself, you can know it in everyone.” This gives me hope. I know that the pain and grief I feel isn’t unique to me – I recognize it in everyone. I know that the progress I see in myself over my lifetime when it comes to anti-racism isn’t unique to me – I can recognize it in everyone. I do have family and friends that I deemed hopeless in this fight and almost all of them are making progress towards anti-racism. This gives me hope.
By recognizing my progress, I can also make space for white people who may be new to this movement without being condescending or angry that they weren’t here until now. I am from Baltimore and I coped by numbing and withdrawing when I didn’t feel safe showing compassion for Freddie Gray when he was murdered by Baltimore Police. I didn’t feel safe, supported, or heard, when I defended players on the Ravens when they knelt in protest of police brutality before a game. I regret that I didn’t feel safe to take a strong stance then, but I recognize that I was doing what I could and I can practice compassion for those that are now joining the movement. I regret that I focused on my own grief and trauma surrounding these issues, rather than centering Black feelings. I was in a position to do more, working for a team and collecting stories from fans, but most of the people buying tickets are older white men and we wrongly centered our response on their feelings. I still strongly feel that I did not do enough then, but I am practicing self-compassion and working to forgive my past self. I messed up, but I was learning.
It also helps me to understand that these reactions are normal and part of being human. The numbness, the anger the grief, the sadness, the guilt, the anxiety, the blame, the feelings of not doing enough – these are all part of the human experience. I can use these feelings to connect with my sense of self and with the idea that we are all interconnected.
I’ll share one more quote from Chodron’s book that resonated with me: “I understood why I practice: we can discover the process of letting go and relaxing during our lifetime. In fact, that’s the way to live: stop struggling against the fact that things are slipping through our fingers. Stop struggling against the fact that nothing’s solid to begin with and things don’t last. Knowing that can give us a lot of space and a lot of room if we can relax with it instead of screaming and struggling against it.”
Yes, this feels like we are in a constant struggle and it sometimes feels like we’re screaming into a void and only being echoed by like-minded people, without being understood by others. But we need to recognize that things are constantly changing – within our physical bodies and within our mind. Just as I am changing, many others are too. Collectively, we are making progress. Yes, it feels like I’m not doing enough, but collectively we are doing so much and it’s important that we each recognize how much of an impact each action has, whether it’s taking time to read and learn, having a conversation about race and privilege with a friend, donating money, signing a petition, sharing content from Black activists on social media, participating in a protest – there are so many ways that we can take action and each action is important.
Stop lying to yourself – you are doing enough. You are enough. We are doing enough. We are enough.
I caught a virus. No, not THE virus. But a virus, nonetheless. And I never recovered.
I remember when it all began, at the start of a new semester of college. I remember dragging myself out of bed in 2009 to attend an anatomy lab where attendance was mandatory, with the thought, “at least it’s right by the health center and I can combine the trip.” I remember the look of surprise on the nurse’s face when she took my temperature and it read over 102 degrees and she replied, “Did you really just come from class?” My test results came back positive for H1N1, the swine flu. I think of the classmates that I put at risk and I wonder if any others fell ill. Do any others remain ill a decade later, like me?
I have Myalgic Encephalomyelitis, also referred to as Chronic Fatigue Syndrome (often condescendingly), a neuroimmune condition with symptoms, including post-exertional malaise, unrefreshing sleep, cognitive dysfunction, orthostatic intolerance, pain, headaches and more. Studies show that 25% of M.E. patients are housebound or bedbound and only about 13% are able to work. Up to 80% of all ME/CFS cases are caused by infection and in my case, my illness was caused by a virus.
But this is not a melancholy tale. Yes, the effects of this illness are devastating. We are angry. We are suffering. We are neglected. We are trapped in malfunctioning bodies and feel helpless. All of these thoughts and feelings are valid.
This is a tale of resilience, strength, and survival; we battle these symptoms day in and day out without necessary support from the medical community. This is a tale of persistence and perseverance; we share our stories in the hopes that we find strength in numbers and will one day receive the knowledge and support we need. This is a tale of hope – that we are not living through these symptoms in vain, that science will provide us an explanation and a solution to reverse the damage of M.E. and hope that by sharing our stories, we can prevent this illness from progressing to severe M.E. in many new cases of M.E.
To COVID survivors – we are here for you. We are ready to welcome you into this community. We are already fighting for you and we will continue fighting for you and everyone else that is healthy now, but who could develop an acute illness and never recover.
Raising Awareness for M.E. & Sharing My Story
May 12 is M.E. Awareness Day. Each year since May 2016, #MEAction has united people with ME, caregivers, and allies to raise awareness and demand action. This year, the fifth anniversary of #MillionsMissing – this mission is more critical than ever. We need to raise awareness, not just for the millions that are currently missing, but for the millions more that will be joining us in the coming months and years.
Those of us in the M.E. community face the stigma of disbelief. We have been given treatment guidelines that actively harm us. We face diagnostic delays and many are undiagnosed. We have relied on each other for mutual aid and advice dealing with dynamic disabilities. We have learned the hard way that doctors don’t always have the answers, researchers don’t always have the funding, and healthy people don’t always stay that way.
My health history is riddled with red herrings, gaslighting, and medical trauma. Many of those wounds are resurfacing during this pandemic. I share with you my M.E. story, with other factors that played a role in the progression of my illness, in the hopes that you understand this can happen to anyone. My symptoms are not a result of poor choices or bad moral character. They are not a result of circumstances that could or should have been avoided. My illness is just something that happened to me, and it’s something that could happen to anyone. I ask that you listen, that you believe me, and that you care, because too many people with M.E. feel ignored, disbelieved, and neglected.
On that fall day in 2009 when I received the test results showing H1N1, the weather was still sunny and warm in Maryland. The trees were still full and green. My surroundings didn’t match with my achy legs, pouty face, fever and chills. I didn’t want to eat soup and sleep while my friends were still going without jackets to the bars. I recovered quickly from the flu, but I had to drop one of my classes because the teacher would not allow me to make up an assignment that I missed while sick. There was no mercy for someone with the swine flu – and I had only missed one class.
I recovered from the virus but never shook the exhausted feeling. I woke every morning feeling as if I had never slept, as if my body had spent all night fighting invisible battles. One of my professors took notice and asked me if I was ok. I remember telling him that I just can’t wake up, I don’t know why, and he suggested that I stock up on Red Bull and push through. So I did.
I spent the next 9 years pushing through. First, I thought my symptoms were caused by my thyroid. I was diagnosed with Hashimoto’s, an autoimmune condition where antibodies attack the thyroid, resulting in hypothyroidism and I was hopeful that thought thyroid medication and diet changes would solve my lingering fatigue issues. My thyroid levels finally stabilized in 2015, but I suffered crashes in 2015 due to mold exposure and in 2017 due to a traumatic ankle injury that was misdiagnosed for months before requiring surgery.
I did a sleep study that came back normal. I did blood tests and urine tests. I had CT scans and MRIs. My symptoms waxed and waned. Nothing showed up on test results, so my doctors kept insisting that I was fine, and I kept pushing through. I see this theme over and over in the stories of the #MillionsMissing.
Finally, in February 2019, I was diagnosed with ME/CFS, more than 9 years after my initial infection and 8 years after I initially sought treatment. This diagnostic delay made my case of mild M.E. become moderate-to-severe. If I had learned about pacing sooner, I would not be housebound and disabled now.
For nearly a year prior to my ME/CFS diagnosis, my primary care doctor had been urging me to reduce my hours at work or find a different job and I refused to listen. Now, my body was forcing me to listen.
Joining the #MillionsMissing
This time last year, I had just returned from a trip to Greece with my husband. The second night there, I slept 14 hours straight. I didn’t even wake to use the bathroom. Still, I did not wake feeling rested. Leading up to the trip, I kept thinking to myself, just get to May, you can relax on vacation, and you’ll be rested to return to work. I struggled to walk from the hotel, up the cliff to the road in Santorini. I could only leave the hotel once per day and when I returned to the room, I was there for the rest of the day. I used to be the one who had a list of sights to see and wanted to venture out until last call at the local pub, but not anymore.
Still, the vacation was amazing. Greece is beautiful. The locals are wonderful hosts. The scenery is unrivaled. The sunsets are spectacular. The history is almost unfathomable. I enjoyed every second of it, even when I couldn’t leave the hotel in Athens, we could climb to the roof and take in views of the Acropolis. I didn’t know it then, but I was learning to be content in the moment.
I returned home from that vacation nearing midnight on May 6, mulling over asking for workplace accommodations, days before #MillionsMissing 2019. I had left my doctor’s office a few months earlier with scant information. I was told that ME/CFS is “mysterious,” and that my new neurological symptoms had to be part of something new and undiscovered (they are part of ME/CFS). My doctor still refers to it as chronic fatigue syndrome.
I came home and saw the #MillionsMissing tweets and posts. I saw my experiences mirrored by countless other people from around the globe. I was captivated.
I felt validated that it wasn’t just me that couldn’t be fixed by endocrinologists, gastroenterologists, rheumatologists, neurologists and infectious disease specialists. They each were focused on one symptom, but nobody could see the full picture. The cognitive issues, post-exertional malaise, orthostatic intolerance, gastrointestinal issues, widespread pain, flu-like feelings and autonomic issues are all symptoms of M.E. This is a multi-systemic, neuroimmune condition. I finally had an answer. I knew I wasn’t alone. I knew I wasn’t some anomaly, a medical mystery, or an extreme case of hypochondria.
I returned to work, unrefreshed from my dream vacation and noticed my cognitive functioning rapidly declining. I couldn’t remember tasks I was supposed to complete at work. I was missing deadlines. I could no longer multitask. I couldn’t finish all of my work. I couldn’t wake up, no matter how early I set an alarm or how much sleep I got the night before. I routinely went to bed as soon as I arrived home from work at 6:00 pm and slept until 8:30 the next morning, showing up late to work. I was skating by, but I knew the time was nearing where I had to disclose to my employer what was happening with my health. I requested accommodations but was unable to work from home or reduce my hours, so I continued to push through until July.
I developed a low-grade fever and my doctor found that I had reactivated Epstein-Barr Virus. I don’t know when my initial infection occurred. Even when I had a diagnostic test to prove that this wasn’t in my head, I still faced disbelief from an infectious disease specialist who said, “I can tell by looking at you that you’re not sick,” and suggested conversion disorder (the modern equivalent to hysteria).
Once EBV reactivated, everything else seemed to fall apart. I felt forced to take short-term disability leave. I couldn’t finish out the planned period of two weeks before the leave would begin and spent days in bed, unable to move or speak, severely impacted by the smallest bits of light and sound.
I improved a bit and I really wanted to return to work. I worked for my favorite NFL team and sacrificed a lot of time, energy, and money that could have been made in a higher-paying profession. I have a huge emotional tie with the city and the team that I grew up watching, so it was exceptionally hard to let that go. My identity was wrapped up in being a sports fan and being a part of that team, but I had to sacrifice that for my health.
I tried going into the office throughout the fall and couldn’t manage more than 2 or 3 hours. I was granted permission to work from home, but couldn’t manage more than 15 hours per week, and that’s all I could do. When I worked for 3 hours a day, I spent the rest of the day recovering from that effort. I had to give it up. I am now among the millions that are missing from careers, missing from school, missing from the lives we used to lead. All because of a virus – or in my case, two viruses.
Living with M.E.
When I say, “I have M.E.” I am received with blank stares. If I say, “I have chronic fatigue syndrome,” I’m met with skepticism and eye-rolling. And this isn’t just from friends and family, it’s from doctors, too. Once, a doctor replied, “What’s N.E.” using the incorrect initial, and then said, “Oh, fatigue is easy to fix, I’ll run some tests.”
I want to live in a world where it truly is that simple – where we can run a test, show M.E. and receive advice for pacing, rest, and other yet to be discovered treatments, rather than a harmful prescription for exercise, positive thinking, and pushing through the fatigue. I want to live in a world where I can say, “I have M.E.” without having to also explain my symptoms every single time. I am hopeful that one day, we will get there. I think back to this time last year when I was one of those people who would have asked what M.E. is and it was in my medical chart.
Throughout my long delayed diagnosis, I became an unreliable narrator of my own health. Doctors couldn’t tell me what was wrong with me, so people surrounding me began to disbelieve me when I couldn’t tell them what was wrong with me. None of the treatments I tried worked, so it seemed that I was making things up. That’s the biggest burden I face with this illness. The stigma and disbelief.
The stigma of chronic illness is all about the fallacy of control. Control is an illusion. Your health is more than just the sum of what you eat and how much you work out. You can make all the right choices and try as hard as you possibly can and still see your health decline. Your health is not a reflection of your value. Your health is not a reward or a punishment. Your health is not a choice.
In my own chronic illness journey, I am constantly reminding myself that I can only control so much. I can’t control what other people do, even though their choices may impact my health. I can’t control many aspects of my health. M.E. is unpredictable. I can do everything right, pace myself, eat well, stay hydrated, and still end up in a flare. Just when I had found some semblance of stability with my symptoms earlier this year, a global pandemic erupted and I have been in a flare since March.
I suspect that I again reactivated EBV, in part due to the stress of this pandemic. My temperature reached 100 degrees for the first time since 2012 and I panicked. I monitor my symptoms daily. I take my blood pressure and monitor my heart rate throughout the day. I monitor my temperature often enough to know that my average is 97.0 and when I woke in a cold sweat and my temperature read 99.1, I was worried.
I have all of the symptoms of COVID on a semi-regular basis, due to M.E. and hypogammaglobulinemia, a type of primary immune deficiency that explains my constant sinusitis. My COVID test was negative, but there is concern about the potential for false negatives, according to research from the Cleveland Clinic. Due to my strictly housebound lifestyle since early March, I think it’s unlikely that I had COVID, but this pandemic has still been disastrous for my health.
While I’m in an active flare, I have about an hour a day where I can function as a somewhat normal human. The rest is spent in a daze, as though I’m constantly peering through a misty fog to try to access my thoughts, words, and memories. I spend 98 percent of my time in my bed or on my couch, but this isn’t a melancholy tale. It’s just my life.
I meditate. I practice breathing and realized that I truly have forgotten how to properly breathe. I snuggle with my dog and my cats. I turn on familiar shows that don’t require my cognitive energy. I write and read (when I can). I sit on my deck when it’s sunny. I message my friends. I video call with my 4-month-old nephew. I drink a lot of water. I truly enjoy doing all of these things. I focus on things I truly want to do. My energy is so limited that I cannot waste it on things that I don’t want to do.
I have to be extremely mindful of my energy buckets and what is being spent on physical, mental, and emotional tasks. I severely limit my physical energy spending so that I have more energy for mental tasks. If I am emotional, I won’t have energy to use for anything else. It’s an extremely delicate balance. Again, it’s also very hard to control.
The hardest part about M.E. is the payback we receive for doing things we enjoy. I love to read and I love to learn. I want to research and learn as much as I can about my illness, about viral pathogens, about COVID, about treatment options. But I can’t. If I have some mental clarity one day and spend some time reading scientific papers, I will pay for it the next day with a migraine, light sensitivity, sound sensitivity, extreme fatigue, muscle pain, and the other myriad symptoms of an M.E. flare. I was a stellar student and now I can’t focus on topics that interest me.
I want to read books and enjoy new shows, but I can’t focus on new stories or absorb new information, so I replay familiar shows and read or listen to the Harry Potter series for the fifteenth time. I want to play Animal Crossing, a video game where I spend time watering virtual flowers and shopping for clothes, but I lose coordination in my hands and fingers, I’m too sensitive to play the sounds, and my vision becomes blurry if I play too long.
I want to write articles like this one and gather stories similar to the ones I shared here. I’ve been working on this for 49 days because the periods where I have the mental clarity to recall words are few and far between. I still feel that I’m not articulating everything I want to say, but such is life with ME.
I want to go out with friends and dance until the bar closes. I want to go out into the woods and hike on a trail with my dog for hours. I want to go into the ocean and have the energy to ride the waves. I want to be careless and reckless and not have to think about my body and my symptoms for just a few minutes. I want to do so much.
Rest and pacing are the only options for managing M.E. I had to learn how to do nothing. I have to force myself to do nothing, without the positive reinforcement of feeling better the next day. I have to do it now, so that I won’t feel so horrible that I can’t speak or move the next day.
How do you manage an illness where idleness is the only treatment? Do you know how hard it is to do nothing when we have been conditioned our entire lives for the opposite?
We caught a virus and we never recovered
Back in March, when COVID was just beginning in the U.S., I took to Twitter and Instagram to ask who contracted a virus and never recovered. The replies were staggering.
More than 250 people replied with stories crossing a spectrum of viruses and bacterial infections and a wide range of chronic illnesses. I learned about some chronic illnesses I had never heard of, like HATS, cyclical vomiting syndrome, and thrombocytopenia. I was surprised to see some well-known illnesses represented, including Type I Diabetes, Crohn’s, ADHD, Vertigo, MS, Lupus, Rheumatoid Arthritis, and Celiac, and to see people with genetic diseases, such as EDS, say that a viral trigger caused their symptoms to present. As I anticipated, some of my comorbid conditions that surfaced after my initial viral trigger were also present: POTS, small fiber neuropathy, urticaria, migraines, fibromyalgia, and Hashimoto’s (autoimmune hypothyroidism). Some remain undiagnosed and their illness is just as valid. I was among them for nearly a decade.
I suspected that I would hear from a lot of people with ME/CFS, but I was shocked that among the 187 people who shared their diagnoses in the replies, 114 were people with ME/CFS. Many people remained ill after an initial infection of Epstein-Barr Virus, which causes mononucleosis. EBV is so common that nearly the entire population carries antibodies, but not everyone develops the acute symptoms of mono, and fewer develop chronic issues.
Many other viral and bacterial infections were cited, including the flu, some specifically citing H1N1, coxsackie, varicella-zoster that causes chickenpox and shingles, viral labyrinthitis, norovirus, typhoid fever, HHV-6, Ross River virus, dengue fever, rubella, parvovirus, echovirus, and more.
Many people who replied shared with me that they feared people not taking COVID seriously. They all experienced a virus changing their lives – some people say ME/CFS is like losing your life without actually dying. With so many different viruses causing such a wide array of chronic symptoms, we should be concerned with the potential long-term effects of COVID-19. This has implications across a wide range of chronic illness and disabilities.
One mother shared the difficulties she and her son Zack faced following a viral infection. “My son lost the use of his left foot,” Heather said. “According to the neurologist, it was certainly the result of the virus we had one month prior to symptoms.” Zack is 13 years old and has been through intense physical therapy. His right leg has recovered, but he is unable to lift his left foot and has chronic pain due to tendinitis in his foot. “He cannot run anymore, he cannot ride a bike,” Heather stated via email. “He has had many falls and once fell down an entire set of stairs. On good days he can walk the dog without the worry the dog will pull him down. People taking this virus lightly make me sick.”
Viruses can cause lifelong damage. Not only can COVID leave healthy people gasping for air, hooked up to a ventilator, or in the grave, it may also leave formerly fit, energetic people trapped in dark rooms, like those with ME/CFS have been for decades. With so many various viruses causing the same set of symptoms, I am encouraged and hopeful to see that the Open Medicine Foundation is initiating research to study COVID-19 patients and track the potential onset of M.E. symptoms.
Danielle Warner wrote that her M.E. was triggered by Epstein-Barr Virus 11 years ago. “I lost everything to this virus – my job, my life, my ability to even stand up or leave the house most days,” Danielle shared. “I couldn’t even get out of bed or feed myself at the beginning. I spend every day in pain because of this virus.”
Emma also remained ill after developing mononucleosis from EBV in 2009. “Eventually I passed the illness, but it took a few months and I never really bounced back. Over time, my schooling really suffered and I started to fall asleep in my classes – in sort of micro-sleeps. I couldn’t stop them,” Emma recalled. She had to leave her polytechnic degree, where she was studying network engineering and became disabled due to M.E. in 2012. Her autoimmune illness and thyroid condition also presented after viral infection.
Alison Atkin developed pericarditis, which led to chronic tachycardia, and ME/CFS following what she describes as “a wicked case of the flu,” in 2017, at the age of 31. “I was a fit, healthy, energetic, young human being. There was nothing to suggest I would be at a higher risk of complications from the flu (or any other virus).” Atkin said.
Sophie fell ill with a flu virus in 2016, which triggered an autoimmune reaction. “This virus caused my immune system to go into overdrive, killing off my cranial nerves on the left side of my face and causing weakness on my left side for 4 months,” Sophie said. She was unable to walk, speak or swallow and had blurred, double vision. “Now, I have ME/CFS and POTS. These may be life long.” Last year, Sophie caught H1N1 and developed thrombocytopenia, very low platelets. That infection caused an M.E. flare that she is still battling.
Lee Blackwood fears the impact that COVID would have on his M.E. symptoms and the likely increase in the numbers of M.E. cases worldwide. “I have moderate/severe M.E. and it was triggered by a nasty viral ear infection 2.5 years ago. I’ve also had swine flu, from which I never 100 percent recovered from. I’m very wary of catching any virus, nevermind this one, because they have left me disabled.” Blackwood added, “I reckon this virus will cause an increase in M.E. cases and I feel the need to raise awareness.”
Oliver has been chronically ill for about eight years. He was initially diagnosed with post-viral chronic fatigue syndrome, then later, with fibromyalgia. “I usually say I have fibromyalgia as I think it sounds better than “chronic fatigue,” which people might take to mean I’m just clinically lazy.”
Oliver’s initial viral infection was so mild, that he didn’t even take time off work from his retail job. In the weeks and months that followed, his physical health gradually declined. “Everyone gets tired and everyone has aches and pains, but mine just kept increasing, without any obvious cause.”
Oliver wrote that after months of diagnostic blood work, the doctor found that he had been infected with Epstein-Barr Virus, issued the diagnosis of post-viral chronic fatigue syndrome, and sent him on his way with no treatment options and no information. This is a common experience for those diagnosed with ME/CFS.
As his symptoms progressed over the next few years, he had to give up work and was only offered pain relief as a treatment option. “Other than that, I’ve been told to exercise and think positively. I’m extremely limited in what I can do. I like to cook. If I spend, say an hour making a meal, then that’s it. I’ll be in an awful lot of pain just from that and can’t do anything else that day. I can walk for about ten minutes before the pain gets too much.”
Oliver also expressed fear surrounding COVID-19. “I’m worried about COVID-19 as a second infectious disease might make my symptoms worse. Or it might not! I know next to nothing about this illness as nobody can tell me anything.” He added, “It’s even occurred to me that this could mark a turning point in a good way, if a huge swathe of people get this illness after COVID-19, maybe people will take it seriously and there’ll be proper funding to find out why this happens and what we can do about it. I’m aware that’s a horrible selfish thought, but there you go!”
I have been ruminating on these topics, like Lee, Oliver, Heather, Sophie and many others. We were all healthy, with no preexisting conditions, before viruses gave us these conditions. It shouldn’t take hundreds of thousands of people dying in a pandemic and millions more remaining chronically ill for those with ME/CFS to get the answers we’ve desired for decades. I feel selfish to think of my own needs and the needs of those with my illness, but while the entire world is focused on COVID-19 and the effects of a novel virus, I am finding a lot of hope in the possibility that this virus could provide the opportunity to study an outbreak of M.E. at the onset. The Open Medicine Foundation wrote, “The likely conversion of thousands of patients to a disease that causes life-long suffering provides an unprecedented opportunity for the world to finally pay appropriate attention to ME / CFS.”
Meeting this moment: COVID-19 & the potential for a new outbreak of M.E.
The CDC lists “new confusion or inability to rouse,” as a symptom of COVID for which you should seek medical attention. I sought medical attention for that symptom for nearly a decade and I still don’t have access to treatment for those symptoms. I am on my own, trying to manage my rest and pacing.
I fear what will happen to COVID survivors, following the CDC guidelines and seeking treatment for these symptoms, which may be attributed to ME/CFS in some cases. It’s disconcerting that many of the symptoms of COVID overlap with my daily symptoms of M.E., including shortness of breath or difficulty breathing, chills, repeated shaking with chills, muscle pain, headache, sore throat, and loss of taste or smell.
I have the privilege of being a middle-class, college-educated, white woman who is generally trusted when speaking about these topics. This issue is even more pronounced in communities of color that have a higher prevalence of ME/CFS, but are least likely to be diagnosed with ME/CFS when they meet the diagnostic criteria.
“Clearly people of color do get this illness, and there are some myths that you have to be white middle class to have ME/CFS,” said Dr. Leonard Jason in his groundbreaking study, which showed that of those youth that screened positive for ME/CFS over the phone, less than 5% had been previously diagnosed.
Couple this with the fact that people of color are bearing the largest impact of COVID-19 and we are facing a massive health crisis in America – and it’s not just a chronic health crisis, it’s a social justice issue.
We need people to understand that public health is everyone’s responsibility. We need people to understand that the impacts of COVID-19 are much broader than the numbers being tracked for cases, deaths, and recoveries. Right now, on May 12, the totals on the Johns Hopkins COVID Tracking Map show more than 1.3 million cases, 80,000 deaths and 230,000 recovered in the U.S. In order to see how many people are sick, we have to do the math ourselves. Right now, 990,000 remain ill with COVID-19. What will happen to those that don’t migrate into a new column?
To COVID survivors, here are some things I wish someone had told me when I first got sick with a virus and noticed that I wasn’t recovering as expected.
The harder you try, the worse you will feel. It goes against everything we are taught as Americans, but you have to slow down, listen to your body, and learn to do nothing. Doing nothing is the hardest thing I’ve had to learn to do.
You didn’t do anything wrong. You don’t deserve to be sick. You don’t deserve to stay sick. This isn’t a choice you are making. This isn’t a moral failure on your part. (Exception: those that were out protesting stay at home orders – you did something wrong. But you still don’t deserve illness, nobody does).
Your value doesn’t lie in what you can do for others, your value lies in just being you. Likewise, your identity isn’t tied to your career. There are many aspects of your identity that already exist and many that you may find in the future. Identifying as disabled has given me a powerful community.
Your work isn’t just what you are paid to do. Especially for women. Unpaid work is extremely valuable and necessary for our society. Our society doesn’t value unpaid labor, but we need to be better.
This is really hard. It’s going to be hard. Try to go easy on yourself, give yourself a break, and show self-compassion as much as you can.
Rest as much as you can. It’s so hard to learn to do nothing, but practice doing nothing.
A message of hope
This illness is brutal, but this is not a melancholy tale. Despite this illness, we rally from our beds. The disabled community shows the power of mutual aid. My experience this past year shows how important online support spaces can be. Even though I may be isolated physically, I feel connected with other people more than I ever have been. This is a valuable lesson now that around the globe people are living in isolation with Stay at Home measures.
Jen Brea made the film Unrest from her bed. We are having 2020 #MillionsMissing virtually from our beds. We are showing how much we can do from bed. Now the world is seeing a glimpse of what happens when a virus disrupts your life and they can look to us to see how to cope when a virus turns your entire world upside down – or in our case, horizontal.
Workplaces and schools are now accessible from home. Telemedicine is becoming the norm and many doctors are embracing it, including a few of mine. I can now have an appointment with my doctor without crashing for two or three days afterwards! Grocery pickup and delivery access is being expanded. The access needs we have been fighting for aren’t just for us – they make life easier for everyone.
I keep hearing people say, we’re all in this together, we’ll get through this together, but that isn’t true. Everyone is experiencing this pandemic differently and many people are being left behind. We might only get through this together if we take those most vulnerable and follow their lead. I ask you, reader, to amplify the voices of disabled people, people of color, people with chronic illness, LGBTQ people, indigenous people, and other marginalized groups at this time. Amplify the voices of people with ME and in turn, we will amplify your voices. Listen to our stories and learn from our struggles so that things will be easier for the next generation of patients that develop chronic illness following COVID.
It’s so hard to remain hopeful when you read the news stories, particularly now, during this crisis, but I still hope. I hope that we can recover from M.E. I hope that researchers can determine the pathology of this illness, find a biomarker, and create treatment options. I hope that scientists quickly find a vaccine and better treatment options for COVID. I hope that states reinforce social distancing guidelines that have been proven to work. I hope that my neighbors keep themselves safe and in turn, keep each other safe. I hope that the accessibility offered by businesses that are allowing employees to work from home will continue when supporting needs of disabled employees. I hope that people will become more empathetic and less selfish. I hope that we can support each other through mutual aid and receive adequate support from our governments. I hope that those that are undiagnosed with chronic illness find the answers and validation they are seeking. I hope they know that they are not alone. I hope that we can all find small moments of peace within the chaos of this global event. I hope that through the interconnectedness this moment brings, we can elevate the voices of those most affected. I hope that we can find ways to manage our symptoms. I hope that we can heal.
I want to be inspiring because that’s what audiences want to hear. What’s inspiring to me is someone who persists. This isn’t a neat story with a beginning, middle, and end with a nice bow and a return to normalcy. That’s not inspiring to me. I’m inspired by the #MillionsMissing who embody resilience, perseverance, and persistence – not because we are being rewarded, but because we must. It’s painful and it’s exhausting, yet we persist – and that’s inspiring and that’s what gives me hope.
Want to help?
We need all of the support we can muster. You can help by following the hashtag #MillionsMissing and by liking, commenting, and sharing our posts on social media.
If you are able, please consider making a donation to the #MEAction Network to support our call for urgent action to mitigate the pending chronic illness crisis. As well, please consider a donation to the Open Medicine Foundation, which raises money and accelerates the research required to tackle the global health crisis that is Myalgic Encephalomyelitis.
Author’s note: I left this article in the form it was in when I last edited it on March 6, 2020. I didn’t post it immediately because I wanted to take time to edit it and get it exactly how I wanted it, which is very difficult with my ME/CFS symptoms. It is now more than a month later and I decided to post it in it’s raw form to capture what I felt after that moment.
Now, everything has changed. The need for action for ME/CFS is more urgent than ever, given the COVID-19 pandemic and the link between viral triggers and ME/CFS. I have been writing on that topic separately for the past month as my symptoms allow. I also watched Crip Camp on Netflix and wanted to include how that documentary has influenced me but that is another post for another time. I think it’s important to keep this post as it was on March 6 in order to highlight how circumstances surrounding COVID-19 have influenced and impacted me and my future activism. I have a lot to learn, but I am trying and I am fighting!
On March 4, 2020, I participated in a peaceful demonstration to pressure NIH Director Dr. Francis Collins to stop ignoring the ME/CFS crisis and take action now.
View the video on Twitter:
Here is the message that I intended to shout:
Stop ignoring the ME/CFS crisis! Over one million Americans are sick, disabled, or bedbound. Congress has asked you to increase funding for years! My life is worth more than $13! Fund ME/CFS Now!
How fitting that I demanded that Dr. Collins stop ignoring us, only to be totally ignored and minimized. After I was taken from the room, Dr. Collins says, “The condition ME/CFS, chronic fatigue syndrome, is of great concern to NIH.” Rep. DeLauro (CT-03) responds, “If you need time to address that, please go ahead and do it.” It’s obvious that Dr. Collins is not prepared to do so, further highlighting that ME/CFS is not important to him. During the remainder of the hearing, Dr. Collins did not address ME/CFS and he was not asked about it by any members of congress on the committee.
I am angry, but not surprised that Dr. Collins minimized and trivialized our illness by calling it a “condition,” and calling it “chronic fatigue syndrome,” rather than Myalgic Encephalomyelitis. I will discuss the stigma surrounding the naming of the disease in this post. It is important to understand that fatigue gets better with rest and happens in response to a typical physical stimulus. It’s normal to be fatigued after running or hiking or lifting weights. With ME/CFS, we have a pathological inability to create and use energy. We become fatigued after reading, speaking, brushing our teeth, preparing a meal, standing for one minute – not typical stimuli – and it takes us days to recover. This is not fatigue, it’s a different beast. The correct term is postexertional neuroimmune exhaustion, which I will discuss later in this post.
Note: I am going to use the term ME/CFS when I talk broadly about our illness, because that is the term that the NIH and CDC use. It’s also the term that’s in my medical chart. However, when I talk about my own experience with this illness, I will use the term M.E.
What happened in the room
The Capitol Police were ready for us. I got too excited and took my sign out too soon and even though I hid it in my lap, under my bag, I think I tipped off a staffer who alerted the guards. Capitol Police were ready and I only got out the first sentence before the officer grabbed me.
I don’t know how I possibly could have been more polite and compliant while performing civil disobedience. The cop that dragged me out of the hearing was excessive and of course, I have to acknowledge my privilege as a white woman in this situation. When police say someone was “resisting,” take that with a grain of salt.
You can see in the video that just after I start speaking, the officer says, “put the sign down or you’ll be placed under arrest,” and then grabs my arm. I immediately put my sign down and started folding it up. The sign was in my bag before I was even out the door. I sat back down in my wheelchair and you can hear me say, “I’m coming, I’m coming,” before I continue with my message. At that point, Matina stood up and took the torch, continuing our message. The officer then pushed my wheelchair out the door while saying that he was putting me under arrest. My wheelchair was stuck on the door jam and he kept trying to push me forward, nearly tilting me out of the chair. He may have thought that I was blocking him, but it was just another example of inaccessibility.
Officer Frederick Kreig pulled me out of the room and said that he was placing all of us under arrest, including the woman who filmed the interaction, April. I calmly asked why I was being arrested and he said, “for resisting arrest.” I replied, “I didn’t resist you, you said put the sign down and I did.” Kreig interrupted, “No you didn’t.” I said, “I told you I was coming with you.” He replied, “I gave you a warning and you resisted.” It’s absurd to suggest that I was resisting when he grabbed me by the arm, I said, “I’m coming,” twice, and he pushed me out of the room in my wheelchair. I don’t know how I possibly could have moved faster since he gave me less than two seconds to heed his warning. Again, it’s important to recognize my privilege as a white woman here. Imagine what things are considered “resisting arrest,” when it’s a person of color. I was just about as non-threatening as you can be – a disabled white woman – and the officer still behaved as though I was a threat.
I can’t believe that he said, “I gave you a warning and you resisted.” I think the correct word here would have been PERsisted and in that case, you’re damn right I did! But the officer never told me to be quiet, so I kept saying my message as he pushed my wheelchair out the door.
There were about 10 officers to manage two ill women. There were two younger officers who were helpful and accomodating. I wasn’t placed in handcuffs because I have an IV catheter in my forearm and they were afraid of damaging it, but they had an officer stand with a hand on my shoulder as if I could escape them. Officer Kreig also tried to arrest April, who didn’t have a sign and didn’t disrupt the hearing. She caught everything on video, but the officers didn’t know that. The other officers said that she didn’t do anything and didn’t have a sign, Matina and I backed her up, and they let her go.
Matina asked for a chair and explained that she is sick and can’t stand for long. Some of the officers rolled their eyes. Officer Kreig said, “You should have thought of that before you got arrested.” He repeated this phrase to Matina a few times when she asked for water and he denied her, when she asked for her coat and he denied her, and when she asked that they loosen the handcuffs because she loses circulation to her hands. The group of older officers kept ignoring a young officer’s request for the cutting tool for the plastic cuffs and finally obliged and he replaced Matina’s cuffs.
Eventually, Matina had to request a nurse, who took more than an hour to respond, because they would not allow her a drink of water. Only the nurse could give her water and get her gatorade from her bag. My hands were shaking and an officer asked if I needed to go to the hospital. I tried to remain calm and say no, hand tremors are a typical daily symptom of my illness. We were subjected to a thorough search by a woman officer and I was handcuffed before we were taken to Capitol Police headquarters.
I don’t think that the officers knew that we had video of the events, because throughout the process, I heard Officer Kreig repeatedly ask if there was video from the hearing room, he was told no, and then ask if there were photos and he was told yes. This must have given him a little power trip to embellish his story that we were noncompliant and resisting. The other officers continued to reiterate that we were being compliant. Officer Kreig yelled at my husband when he came near to ask questions, “You can’t be here.” Andrew explained that he is my husband, asked what we were being charged with, where we were being taken, and other questions so he could help us sort things out. He also took photos while nobody was looking and managed to hand press releases to a few photographers who came out and took our photos while we were handcuffed. I haven’t seen any coverage of our disruption.
Then, Matina and I were taken to Capitol Police headquarters, which is not accessible. Another officer said that my chair is “cumbersome.” Imagine living in it with no hope of the NIH funding any research to get you out of it, dude. He at least had the common sense to ask me before he pushed my chair. Then, I had to sit for 45 minutes and watch Officer Kreig type his report with his two index fingers. Side note: why is typing such an undervalued skill? (I know, because misogyny). He could have dictated his report to me and had it done in 5 minutes and I’m disabled. Another officer came in and said, “You can spend all day typing that report, just give me the number and I can get them out of here.” It took him another 35 minutes after that to get her the numbers. Matina and I just had to pay a $50 fine each for disrupting congress and we were released. I think that the Capitol Police are now excessively enforcing this rule because of the large number of protesters at the Kavanagh hearings. You won’t stop us. You won’t silence us.
Planning this demonstration
As soon as the budget hearing was announced, a small group of activists sprung into action to plan this demonstration, while Matina and I rested to store up the energy that would be required. We were very intentional with the message. We wanted to be clear that we appreciated the efforts Congress has made to increase funding for the NIH and that we were sick of Dr. Collins’ empty promises to the ME/CFS community. A quick aside to praise congress, recently all 27 Florida representatives signed a letter to Dr. Collins urging immediate action for research on ME/CFS.
We were also very intentional that we did not interrupt any members of Congress, only Dr. Collins. We did not want to interrupt while he was discussing important matters such as Coronavirus, other important diseases, gender equity in research, etc. We wanted to address our concerns and demand action without detracting attention from any other important issues.
When the group discussed this action, I knew this was my time to do something. I could manage it with my symptoms and I live close to D.C. Outbreaks of ME/CFS began before I was even born and we still have no scientific proof as to a cause, biomarker, or treatment option. Yes, there has been progress, but not fast enough for the scale of this illness.
Low end estimates say that at least 1,000,000 Americans are sick. High estimates are more than 3,000,000. Dr. Leonard Jason recently found that 95% of children with ME/CFS are undiagnosed. The same study showed that prevalence rates are higher among black and brown youth than among white youth. When the overwhelming majority of the faces of this illness are white women (myself included), this is a huge problem.
Despite the high prevalence, “funding for M.E. needs life support,” as Jennie Spotila writes on her site, occupyme.net. Spotila highlights that funding for individual grants has fallen 25% since 2017, which places investigator-initiated funding at its lowest point since 2012. Funding peaked in 2017 as Collaborative Research Centers were funded and has steadily declined since then. Spotila notes that those three institutions received 57% of ME/CFS funding in 2019. This creates the risk that the research field could narrow down to those three centers as individual investigators have a harder time getting funding and then leave the field. In the 1990s, NIH funded CFS research centers and they were disbanded in 2003 when funding was terminated. If this were to happen again with the Collaborative REsearch Centers, funding for M.E. could drop by 60%.
As Spotila highlights in her yearly NIH funding posts, actual spending for ME/CFS is less than the NIH yearly budgeted amounts. In 2019, actual spending was $12,008,817 but the NIH website lists $16 million. The 2020 budget estimate is $15 million. With more than 1,000,000 patients, is my life really only worth $15/year to the NIH? And that’s being generous. As my fellow protester Matina said, is my life worth the same as a domino’s pizza? The high-end prevalence estimates would put funding at an abysmal $5 per patient. That is not enough money to make an impact on this illness. It’s important not to compare to other diseases, because many many diseases need attention and funding, but to put this in perspective, congress recently approved $8 billion in spending for Coronavirus (yes, billion with a B) and fast estimates still say at least a year and a half for a vaccine. It’s no wonder we have had decades of stifled progress due to this neglect.
Why participate in civil disobedience?
When you look up examples of civil disobedience, there are some LEGENDS. Congressman John Lewis fought for civil rights, marched in Selma and continues with sit-ins now.
Sometimes you have to get in the way. You have to make some noise by speaking up and speaking out against injustice & inaction #goodtrouble
In 1977, Disability Rights activists held protests across the country and protestors occupied the regional offices of the Dept of Health, Education, and Welfare to demand that HEW Secretary Joseph Califano sign Section 504 of the Rehabilitation ACt of 1973, which stated that “no qualified individual with a disability should, only by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.
AIDS activists and the group ACT UP totally changed the game with their methods of demanding a medical breakthrough. Their justifiable anger spurred a movement and their demonstrations resulted in real change for the community. I am so inspired by ACT UP member Ann Northrop and her account of the December 1989 demonstration at St. Patrick’s Cathedral in New York. Northrop describes cops entering the church and carrying protesters out. She was the last one to be carried out and her voice rang through the cathedral, “We’re fighting for your lives, too. We’re fighting for your lives, too.”
When learning about these groups, I always wondered, would I be brave enough to join them if I had been an adult during that time? I hoped so. One thing that always bothers me is that when people don’t agree with the issue, they say, “they’re just doing it for attention.” Of course we’re doing it for attention, but mainly we’re doing it for support. In order to receive the support we need, we have to draw attention to the issue first. I also hate when people say, “I agree with the message, but not the method.” What does that even mean? If the message is that important to you, you will utilize any method to have it heard. See: Colin Kaepernick and police brutality.
There are so many activists that have been fighting for support and recognition for ME/CFS since before I was even born and throughout my entire life. It’s because of them that I even figured out what was wrong with me. I spent 9 years undiagnosed, thinking it was all in my head, blaming myself for being lazy, not realizing that 12 hours of sleep and a couple of red bulls wasn’t going to magically make my body produce and use energy.
How I discovered that I have M.E.
I got the H1N1 virus in college in 2009 and I never recovered. I never woke up feeling rested again. Since then, I have had periods where M.E. was mild and I could function fairly well, periods where I had to drive home from work at lunch time to nap, periods where I couldn’t get out of bed or tolerate any light or sound, and periods like now, where I am unable to work, but I can function for a few hours a day with limited payback. I fluctuated between mild and moderate M.E. for years, testing my thyroid and treating Hashimoto’s thyroiditis, doing sleep studies, testing vitamin levels, and doing every other thing my doctor’s could think of with no relief. Now, I fluctuate between moderate and severe M.E. and I must be very deliberate and mindful of pacing. A virus disabled me.
Without research, we have no idea what causes M.E. and what makes it worse. Did I already have M.E., which made me more susceptible to viruses, which then triggered worsening symptoms? Or did the H1N1 virus trigger M.E. and made it difficult to recover? How come I never recovered from the virus while other people are healthy? Now I also have periods where Eptein-Barr virus reactivates and I have viral symptoms associated with elevated antibodies. This is the virus that causes mono and it can be found in 95% of the population, so why am I so sensitive to it? Am I sensitive because of M.E. or did this virus also contribute to M.E.? With no research, I have no answers.
I am so full of rage because of all that is unknown about M.E. I feel like a lab rat because I just keep trying various treatments to see if I can get even a miniscule improvement in symptoms. The most helpful treatment right now is saline IV infusions and my doctor says that they are short-term and I have to stop them soon. I am afraid that I will relapse after I stop my infusions.
I don’t know if M.E. is something that is inherited or passed down. My cousin has the same symptoms and her doctor will only call it “chronic fatigue” and tell her her test results are “normal,” despite her worsening symptoms – a familiar story for all people with M.E. One of my aunts has similar symptoms and has been diagnosed with Lyme disease. Could I pass this on to any children I may have? Are we genetically predisposed but certain environmental factors flip on the genes and cause them to be expressed? There are cases where family members have M.E. including mothers and children. That makes me very fearful of having children, aside from the fact that I wouldn’t be able to care for them with my current symptom severity. Or is this totally caused by an environmental factor like a virus – but then why do some people get a virus and never recover, while others are fine?
What is Myalgic Encephalomyelitis?
The International Consensus Criteria for M.E. is quite extensive and includes many more symptoms than fatigue. The criteria requires that the patient meet the criteria for (A) postexertional neuroimmune exhaustion, (B) at least one symptom from three different neurological impairment categories, (C) at least one symptoms from three different immune/GI/genitourinary impairment categories, and (D) at least one symptom from energy metabolism/transport impairments.
A. Postexertional neuroimmune exhaustion – a pathological inability to produce sufficient energy on demand. Characteristics are as follows:
Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
Postexertional symptom exacerbation: acute flu-like symptoms, pain and worsening of other symptoms.
Postexertional exhaustion: may occur immediately after activity or be delayed by hours or days.
Recovery period is prolonged: usually taking 24 hours or longer. A relapse can last days, weeks, or longer.
Low threshold of physical and mental fatigability (low stamina) results in a substantial reduction in pre-illness activity level.
B. Neurological impairments (at least one symptom from three of the following four categories)
Difficulty processing information: slowed through, impaired concentration, confusion, disorientation, cognitive overload, difficulty making decisions, slowed speech, acquired or exertional dyslexia.
Short-term memory loss: difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory.
Headaches: chronic, generalized headaches, often involved aching of the eyes, may be associated with cervical muscle tension, migraine, tension headaches.
Significant pain: can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. May meet fibromyalgia criteria.
Disturbed sleep patterns: insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares.
Unrefreshed sleep: awaken feeling exhausted regardless of duration of sleep, day-time sleepiness.
Neurosensory, perceptual, and motor disturbances:
Neurosensory and perceptual: inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch, impaired depth perception.
Motor: muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia (the loss of full control of bodily movements).
C. Immune, gastro-intestinal and genitourinary impairments: at least one symptom from three of the following five symptom categories:
Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion: sore throat, sinusitis, enlarged and/or tender lymph nodes
Susceptibility to viral infections with prolonged recovery periods
Genitourinary: urinary urgency or frequency, nocturia (urinating frequently at night)
Sensitivities to food, medications, odors, or chemicals
D. Energy production/transportation impairments: at least one symptom
Cardiovascular: inability to tolerate an upright position (orthostatic intolerance), neurally mediated hypotension (low blood pressure), postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
Respiratory: air hunger, labored breathing, fatigue of chest wall muscles
Loss of thermostatic stability: subnormal body temperature, marked diurnal fluctuations (I’m not sure what this means, but diurnal means daily, so maybe fluctuations of body temp throughout the day), sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities.
ME/CFS is way more than being tired and I’m furious that Dr. Collins is treating us like lazy, sleepy housewives with nothing better to do but complain. We’re desperate for help and we want to live our lives. In the ICC article linked above, the authors state, “No other fatiguing disease has ‘chronic fatigue’ attached to its name.” This is important to note because fatigue is not an accurate word to describe our symptoms, while it is an accurate descriptor of the fatigue experienced by those with cancer/chronic fatigue or MS/chronic fatigue for example. The authors write, “Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.” With M.E. there is a pathological low threshold, meaning that we experience these symptoms with very minimal physical or mental exertion and then over the next few days, we cannot recover and repeat the same tasks.ME/CFS is not understood by the top scientist at the NIH.
Why I chose to take action and confront Dr. Collins
Every doctor I have seen is unaware of M.E. and continues to treat my symptoms individually. ME/CFS is not taught in medical schools and it’s obvious that Dr. Collins does not understand or care about this illness. I have played by the rules and worked extremely hard my entire life and look where it got me. Disabled and stuck in the house, doing my own research and connecting with other patients to try to find answers for an illness that has been left behind by the NIH and the CDC. There are so many dedicated scientists fighting for us and they don’t have the funding they deserve.
I chose to act because of the careful planning that Claudia, Therese and others put into this demonstration. Because I know how important it is for the community to stand up to Dr. Collins and show how desperate we are and how important the ME/CFS crisis is. Because I knew that my husband would stick by me and take care of me even knowing the stress I would cause him, getting hauled out by police.
I am full of rage and resentment because I thought I was doing everything right – I played by the rules, I got straight A’s, I got a 1470 on my SATs, I went to a great public University and had scholarship money, I held internships and part-time jobs, I landed my dream job within 3 years of graduating, I listened to everything doctors told me, and now I’m disabled by an illness that nobody understands. I’m pissed off that I even feel the need to rattle off these credentials because maybe this will sway more people to believe me. What do I have to lose, now that this illness has taken so much from me? I knew what the risks were and this was worth the risk. This action was worth paying a $50 fine and having a crash and symptoms flare afterwards.
I have been disbelieved by doctors for nearly a decade while my illness became progressively worse. I’m still paying student loans on a college degree that I may never use again. I’m unable to work in my chosen career (that was highly underpaid and undervalued) because I can no longer work 50 hours per week. So I’m sick of playing by the rules.
I keep racking up diagnoses and each one has no treatment option and then people act like I’m malingering. Hashimoto’s thyroiditis and they can’t treat the autoimmune aspect of it, IBS, fibromyalgia, M.E, endometriosis, postural orthostatic tachycardia syndrome, reactivated EBV, chronic sinusitis, peripheral neuropathy, IgG deficiency.
Maybe we won’t get much of a reaction from Dr. Collins. But that doesn’t mean I tried and failed. Even if that’s considered a failure, I’m glad that I tried at all. We would have the same excuses from him either way, so I had to try. I hope that he was embarrassed. Congress has done so much to support the NIH and increase funding, yet we have been neglected and left behind.
I see all of the posts and stories about what we are missing out on because of this dreadful illness. I think of all that it has taken from me. I think of all the potential that I had and how it was stolen. I may have less energy now, but I will harness that small amount to do as much as I can for this movement. For everyone who has severe M.E. and is unable to speak and unable to leave bed. For everyone that pushes through this fog every day, wearing this mask and pretending that we’re ok when we’re in misery every single second of every day. For everyone that tries to have an escape from thinking about this illness for just a moment each day and ME/CFS just won’t loosen that vice grip. For those of you with other illnesses that go undiagnosed, untreated and underfunded (see endometriosis). For those of you that go to a doctor and are ignored, disbelieved and sent home with instructions to “diet and exercise,” and then that make you worse, like me. And for those of you that are healthy – I’m fighting so that science figures this out and you never have to go through what we are going through.
Senator Elizabeth Warren said, after suspending her presidential campaign, “Choose to fight only righteous fights, because then when things get tough – and they will – you will know that there is only one option ahead of you: Nevertheless, you must persist.”
Feeling inspired and want to join me?
Share this post and share the #MEAction social posts.
I like buying shit I don’t need, sue me (in Michael Scott’s voice). Most of the time, it works out really well and I’m glad I did. I compiled a list of things that I definitely do not regret purchasing. Most are low cost, some are a little higher, but I consider them all to be good value buys. The most expensive item on this list is $79.99, but most items are under $25. These are mostly things I consider to be chronic illness and disability hacks – they help me with daily activities in ways that really help with my symptoms and overall functional levels.
Prices listed include what I paid when I purchased and what it’s listed for as of the day I wrote this post. Prices may be lower from other sellers and Amazon prices tend to fluctuate. Sellers also like to put a slash through price and pretend it’s usually sold for higher and is now on sale – that’s how they get ya! Also I know Amazon is evil and Bezos is a criminal for hoarding so much wealth, but it’s the only way I can shop since I’m mostly housebound. I better not see any of my content on BuzzFeed either (unless you ask permission and PAY ME) because I know how they are!
I also want to issue a disclaimer that this is not an ad, these are products that I have bought and that I use, but I did set up as an amazon affiliate so that if you click one of these links and shop, I will get a benefit. Here are some things I love…..
Things that help me do things better while lying down!
You can adjust the holder by bending and shaping it to however you like! I am always lying down and looking at my phone and I have to choose which symptom to exacerbate – do I hurt my neck by holding my phone down on my chest and bending my neck, or do I hurt my arms and lose blood flow to my hands by holding my phone up in the air? This helps solve that problem! If you’re scrolling, it might not work as well, but it’s great for reading or watching videos. It’s helpful for me to keep my neck straight and then alternate which hand I use to navigate my phone screen to avoid the tingles and numbness I would usually get while holding my phone.
Current price is $21.99 and my husband paid $19.79.
My husband bought this for himself and I quickly stole it. This is probably the best-value purchase on this entire list. I mostly use it with my kindle and sit it on my chest or stomach to prop up my kindle while I read. It’s just lovely.
These look hilarious but they function so so so well! I do often have vision symptoms, so I’m not always able to use these glasses, but they help so much when I can use them. Sometimes I get dizzy because I can still see out of the corners of my eyes and that field of vision isn’t matching what I’m seeing through the glasses. If you also experience motion sickness and vertigo symptoms, this might also be an issue for you. When that happens, I just take them off. I love these glasses because I can lay with my neck straight, but still see the book while it’s propped on my reading pillow. This solves the same problem that the phone holder does, but for books! I don’t have to pick which symptom to ease and which to exacerbate – I can be comfortable with both my neck and hands/arms!
I’ll keep in real – one of my ways to ease my endo pain is to apply my hot laptop directly to my abdomen. It’s probably unhealthy, but I need to burn myself in order to have a bit of pain relief, so whaddyagunnado? But when I’m not doing that, I have a lap desk to prop up my laptop and keep it from overheating. This one is also great for filling out my disability paperwork because it has a clipboard to keep it all together! I can’t find the original order (I’ve had this for a long time), but the current price is $19.99.
Things to make daily tasks and responsibilities easier
I take a lot of pills, vitamins and supplements and it’s impossible to keep track of them all with brain fog (my nemesis and most hated symptom). I use the medisafe app to remind me when to take my medicine. Once a week, I divvy up my pills into this organizer so that I don’t have to go searching each day for the correct bottle. In the morning, I grab that day’s pill organizer and I’m good to go! It has spots for morning, afternoon, evening and night. I actually take two rounds of morning medicine – one set before I eat and one set with food, so those labels don’t actually apply to me, but I understand what slots I need at which times. It’s really helpful if I do go out somewhere, I can just take that days pill organizer with me instead of making sure to grab whatever pill bottles I would need for the rest of the day. If you take a lot of pills at varying times of day – this is the way to go.
Current price is $11.89 for a random color. I was happy I got my favorite color purple! I paid $11.56.
Yeah, it’s a water bottle with a pill organizer attached, but I like saying it the other way around because the true function for me was taking medicine. I loved this thing so much when I used it. I just don’t use it anymore because I take too many pills to fit in that organizer. It was so perfect for my thyroid pills though. They need to be taken first thing in the morning, at least 45 minutes before eating breakfast or drinking coffee. Having water and pills right there on my nightstand, ready to take as soon as I woke up was perfect! Especially for me, a person who is fatigued all the time anyway, but who is exceptionally non-functioning in the morning and upon waking.
Current price is $11.99 – $13.99 depending on the color. I have a red one and paid $13.99.
I keep my ID and insurance card in my wallet at all times so that they are easily accessible in case of an emergency. Also, I have frequent doctors office visits, so it’s nice to have them handy at all times. I usually keep one credit card in the wallet as well. I like this one because it’s a great price and it’s leather so it’s very durable. I have a white one and it didn’t even get dirty like white phone cases typically do!
Current price is $13.95 for all color options and that is what I paid.
If your pets are anything like mine, they act like they have never been fed in their entire lives. If you have brain fog like me, you will believe them and just feed them every time they act hungry. I got this and used the big double-sided tape that it came with to stick it to the plastic storage bin where we keep the dog food. That way my husband and I can tick off the morning or night when we scoop out the food. For the cats…..
We received this as a gift, but I wish we had purchased one sooner! You can set the feeder to rotate at a specific time of day so that the cat or dog will be fed portion-controlled dry food. I use it for my cats. Janet loves dry food, so she will sit and wait at the feeder starting at about 8:45, waiting for her 9:00 food presentation. Buster loves wet food, so I still need to figure out a hack for giving him the canned food! I have forgotten to refill the machine once, but Janet was very vocal and I knew when it was empty after 9:00 that it must have rotated to an empty slot. This is great too if you have limited mobility because you refill it every five days instead of every day. I find it beneficial to have my pets to care for, but I do have days when my symptoms are severe and I’m unable to leave bed, so it’s nice to have this feeder (and my husband) to fall back on.
I worked in retail as a teenager and I pride myself in my ability to whip a shirt into a perfect Marie Kondo-style fold…. but that shit is tiring. My arms hurt and get so fatigued from folding a load of laundry. I am not exaggerating and I know my fellow chronic illness pals can relate when I say that doing one load of laundry is a cardio workout – my heart rate goes up into the 160s just from carrying a load up the steps. I can’t stand there and spend a bunch of time whipping my shirts into perfectly folded squares. That’s where this weird block of plastic comes in. Throw it on the bed (or couch, or ground, or wherever you’re folding your shirts), throw a shirt face down on top of it, then just push the various pieces over and the shirt folds! My husband loves it too so that he can finally master the art of the perfectly-folded shirt!
Weed is medicine. Keep your medical supplies clean with this perfect glass cleaner, aptly named 420 cleaner. You don’t have to scrub or let it soak and your glass pieces will look almost brand new after! I’m so fortunate to have access to medical cannabis in my state. It’s the only thing that can even touch my endometriosis pain. Legalize it and expunge the records nationwide – don’t vote for anyone who won’t do this please and thanks.
Current price is $9.95 and that’s what I paid.
Current price is $7.99 plus 8% off coupon applied at checkout. I paid $7.99.
Yes, I know we’re not lazy, we’re the opposite. Do you know how fucking hard it is to muster the energy to prepare, cook, and clean up a meal when you don’t have the energy for ANY of that?? But we do it. When I am able to cook, I throw some chicken in the crock pot with some sauce and one of these liners. It’s fast and easy to throw it in and I don’t have to stand over it to watch it cook. Then, CLEAN UP IS SO EASY AND FAST! Just grab the liner and throw it all away! Game-changer.
Really, I just love how freakin cute this little cat holder is. But this has actually helped me because I put it out as a decoration and then I actually use it when I need to remember something. It’s on my table in an easily accessible place, so I can quickly grab a post-it and write myself a note for later, whenever I need to.
Pricing: I paid $7.99. Current listing price is $12.06.
I got this because it’s cute and I liked the colors, but it’s very practical too! I keep my visit summaries, referrals, test results, receipts, and insurance statements in this folder. It’s a sturdy plastic material. I also got one to store all of my paperwork regarding my disability claims. I was on short-term disability for six months through my former employer and was just accepted for long-term disability through an insurance program that they offered. I began the process of applying for Social Security Disability Insurance (SSDI) while I was waiting to hear about LTD, so I have been keeping all of that paperwork. It’s nice to keep it all organized and somewhere handy so that it’s easily accessible if I need it!
Things to increase comfort and limit symptoms as much as possible
Current price is $19.99 (including the button to click for a $5 off coupon). I paid $24.99.
I am not pregnant and I’m not planning on becoming pregnant, but I am a big fan of this pillow. I have chronic pain in my legs and back, so it is often very challenging to get relaxed and comfortable enough to fall asleep. I picked this one because it’s a C-shape and I can manipulate it for different uses. I am a side sleeper, so the way it’s pictured in the stock photo helps. I also fold it back on itself and put it under my legs if I lay on my back. I mostly use my regular pillow for my head and then I twist this pillow into more of an S-shape, so that I am hugging the top part and then my legs are wrapped around the bottom part. I move around a lot in my sleep, so it ends up on the floor a lot, but that’s ok – it helps me with what is most difficult for me – getting comfortable enough to fall asleep.
I am very sound-sensitive now. When other symptoms are flaring, I am more sensitive to sounds. At the same time, when I’m triggered by loud sounds or grating noises, it causes other symptoms to flare. I have noise-cancelling headphones that are a big help. sometimes I just put them on my head with nothing playing – just the noise cancellation soft white noise or whatever it is. That’s not very cost-effective though, so my backup is earplugs! I have bought these and the same ones in hot pink. I just pop them in and block out the sound of the trash truck outside, kids outside playing and screaming, music the neighbor is playing, or whatever else might be bothering me. These are necessary when I have a migraine or an M.E. flare up.
Before I became a wheelchair user, I used this small chair when I was going somewhere that would have required more standing than I was able to do. It’s small and lightweight and has a strap so you can carry it on your shoulder! It’s very small and not very stable, so be careful when you sit on it and make sure the logo is between your legs. I brought it with me when we were in Seattle and waited in line at the original Starbucks and it was perfect! There was no way I could have stood in that line for 20 – 30 minutes, but I could sit! My backpack has straps too where I just put the legs into the cup holder on the side, then secured it with the straps and easily traveled with it!
Current pricing is $17.59 – $28.09 depending on the color. I paid $19.99 and have a black.
This is more of a comfort thing than a hack, but I’m putting it in here because it helpe me hack the severity of my M.E. symptoms. Since my M.E. symptoms progressed from mild to moderate, I have been mostly homebound. I have had days where symptoms are severe and I am unable to leave my bed. When my symptoms are manageable, I try to get out of bed and get to the couch. For those of us with M.E. pacing is so vitally important. We have to always be mindful of what activities we’re doing and stay within our energy limits because exceeding our limits causes crashes. Since I also have POTS, the best way for me to limit my energy spend is by staying horizontal as much as I can. Anytime I stand up, my heart rate is elevated. I’ve never done an orange theory class, but I imagine I could just stand in the back and be in the orange zone the entire time (or more likely the red zone). This pillow is great for when I get to the couch, but need to be reclined. I like to replace one of the back couch cushions with this guy so that I can be reclined, but still in a resting position. It’s great! I also get migraines that are eased by getting into a better body position. I have to be reclined with my feet propped up, so this pillow combined with the next wedge are a huge help when I’m having a migraine flare.
This isn’t the most comfortable pillow, but it gets the job done. I do wish it was softer or more plush or had a softer fabric. I like to throw a blanket over top of mine or sometimes even another softer pillow on top because it is so firm. This is another one that’s more of a comfort thing than a hack, but I put it in here because of how much it helps my symptoms. With POTS, it’s amazing how much putting my feet up helps my other symptoms. A lot of people with M.E. also have orthostatic intolerance, so while you might not have POTS or a dysautonomia diagnosis, try it out and see if it helps. Somehow it helps my migraines. I think because the blood pressure in my head gets too high and it helps regulate my messed up autonomic nervous system, but who knows.
My hair is dark brown so dry shampoo never used to work for me like you lucky blondes… until I found THIS! I think Batiste is pretty well-known in the UK, but my US friends are not hip yet. It is absolutely perfect. It makes my hair look freshly washed even when it’s been days – and I have oily hair. It has a dark brown tint too so it covers my gray roots! Somehow I’m only 31 years old and have about as many gray hairs as my grandmother (I’m not even kidding her hair is still 75% black).
Here’s a link to the full Batiste Amazon Store so you can get which product is best for your hair type. For a 3-count of dark brown, current price is $21.18. I paid $19.74 last time I purchased.
Having dysautonomia makes showering and bathing very difficult because the heat and changing of postural positions exacerbates symptoms. This OXO suction cup shower bar is a must – I should have bought it sooner. It is very sturdy and helps me get in and out of the tub so much easier. I have fallen getting in and out of the shower before and also while trying to go from sitting to standing in the tub (don’t worry I haven’t hurt myself more than a bruise), so this was necessary.
Currently, it’s only available from third-party sellers. I paid $19.99. There are other options listed as well if you click the link.
An adjustable-height shower stool is a must for someone with dysautonomia or M.E. It’s takes too much energy to stand in the shower and our symptoms are worsening by bending over for shampoo and soap and then standing back up. I love sitting, so I will sit wherever and whenever I can!
I did not purchase our shower stool (my mother-in-law gave it to us after she finished using it following knee surgery recovery). The current price is $24.89 and there are a variety of options at different price points.
I love taking epsom salt baths to ease my aches and pains. I got this caddy to sit on top the tub and I can read a book, light a candle and drink my sparkling water while I relax! I love it. Current price is $34.90 and I paid $30.
Bonus: some epsom salts! I usually get target brand (pictured here) – they smell the best and provide the best pain relief. I like the lavender when I want to relax and I also like the coconut from target. I like eucalyptus when I want to try to be more alert. Here are some options I’ve bought online. Best value & unscented – $27.99 for a whopping 19-pound bag. I paid $23.99 last time I bought and I recommend that one! Name-brand & scented Dr. Teal’s. I like this one too, but for me, it’s not worth the extra cost. Current price is $22.95 for two 3-lb bags. You can get it much cheaper at target, you’re paying for them to deliver it. I paid $17.30 last time I purchased online.
I love drinking coffee, it’s one of my comforts, and there’s just something different about a fancy cup. I wanted a way to make that at home when I am not able to leave my house. This thing is surprisingly easy to use! I just heat up some milk or cream in a mug in the microwave, then put this into it and click the button on top a few times until it’s frothy. Then add coffee! It’s delicious!
Current price is $15.97 and I paid $14.99. I think they have these at IKEA too for a super low price.
My favorite thing about traveling is going into convenience stores and buying all of the candy. I try everything I’ve never seen before. I love candy! I got this for my husband for Christmas (and for myself to share) and it reminded us of our trip to London. You can search for other brands and candies for whatever makes you feel happy and nostalgic! (Just click my link first then search so I can get some credits hehe)
Current price is $10.40, so it looks like I gt ripped off at Christmas time, paying $14.99.
I’ve always said something is different about McDonald’s soda… it’s the bubbles, it just makes it taste so good! I don’t drink much soda anymore and I don’t get out much. My husband bought me a soda stream as a gift and it may be the best gift I’ve ever received. I drink three or four bottles of sparkling water a day. Somehow, it’s helping my symptoms too! I don’t know if it’s just the fact that I’m finally drinking nearly a gallon of water a day or that somehow the bubbles are helping me. I don’t know! I also got Mio flavors with vitamin B and that may be helping as well. It’s expensive, but considering how much I would be spending on sparkling water or soda as an alternative, it’s not that bad in the long run. And it makes me feel like I’m getting something special since soda or sparkling water are usually a treats, not something you can make at home!
Current price is $109.99 and that’s what we paid.
That’s it for now!
I have a whole list of other things I’m going to post about, so keep an eye out for that if you’re interested. I just want to take dorky pictures of myself, so one day I’ll do that! Nex up I’ll include a bunch of stuff that helps me relax and be comfortable and some tools that help me track and manage my symptoms. If you buy anything, comment and let me know how you like it! Hopefully you enjoy as much as I have 🙂
This has been a particularly difficult week for me, with the spread of COVID-19 triggering other issues I have had trouble processing. I have actually started to improve with my M.E. symptoms and was feeling optimistic that maybe I could progress to being a mild case again, rather than being mostly housebound with moderate M.E. The bad part is that this little bit of increased energy seems like it has only opened up space for me to feel the anger and resentment I hadn’t had the energy to feel for months while I was focused on recovery. The coronavirus is also triggering a lot of anxieties and fears for me. Seeing healthy people minimize and joke about the threat of coronavirus is infuriating. They think that their only risk is a cough for a few days. We know better and they just won’t listen or don’t care. All week I have seen people saying things like, “it ONLY affects the elderly and those with other conditions,” as if we don’t matter and are disposable. They don’t seem to care that they could spread illness to us and the effects could be disastrous. They don’t realize what a privilege health is and it is so infuriating. I want to make them listen and I want to make them care, but I need to realize that it’s out of my control.
Here are some reasons why the reactions of healthy people to Coronavirus are so infuriating.
Some of y’all never had to advocate for work or school accommodations in order to protect your health and it shows.
I lost my career due to my illness. I masked my symptoms for years while they were mild. When it started progressing rapidly last May and other comorbid illness began to appear, like POTS, I requested accommodations like working from home and was denied. I was told that was not a “reasonable accommodation,” and continued pushing through my worsening symptoms until I had to take disability leave at the end of July. I’ve been unable to work since. I asked if I could work from home during that time and was told no because I didn’t have a VPN. When they finally agreed to let me do some work from home in November, I only got up to about 15 hours in a week. I think this was just to cover their ass so they could say they did offer an accommodation and I still couldn’t manage the number of hours. I was told that since my FMLA was up and I was unable to return to 40+ hours in the office, that they would have to rehire my position. At that point, I gave up trying to work. It was more important to me to focus on my health and my treatment plans. I had just started seeing a doctor at Johns Hopkins after waiting for months and wanted to focus my energy there, not on trying to work. I don’t regret that decision at all. However, it is very hurtful and enraging to see my employer now immediately make accommodations for staff to work remotely, without VPNs, is infuriating. The excuse for my position was always that I had to be able to answer the phones. If they really wanted to, I’m sure I could forward calls to my cell phone, but that wasn’t an accommodation they wanted to make. In today’s culture, we rely mostly on electronic communication as well, but that office was always resistant to change. I remember how I tried to get them to use slack for months and I’m wondering what they’re doing now and thinking how much easier this period would be for them if they had listened to me and adapted before!
I lost my career and worsened my health by continuing to push through and I see people posting online with their “work partner” pets and kids, while I have been unable to work, homebound for months, and at times completely bedbound. It is incredibly insensitive. On the other side is that people are treating this like it’s a vacation and not taking it seriously. I saw a post that said, “brb cancelling life #housebound” and I know it wasn’t a personal attack on me, but damn it felt like it. Also, don’t use #housebound if you aren’t actually housebound. People like me use it to connect with other people online who share our experience and it is so necessary when we are socially isolated all year round, not just during quarantine. Let us have our space please. We still need to talk to each other in a safe place, with other people who understand what we’re going through and have the same issues we do. We can’t just go to the grocery store right now if we need something and our usual avenues of delivery are swamped by abled people right now and inaccessible to us.
I wanted to work from home, so that I COULD WORK. That may have been the only way I could have kept my job, but I didn’t get a chance to try. Now, people are working from home, but still going out to bars and socializing and not taking any other steps to limit the spread of this virus.
I am so glad that these precautions are being taken and companies that can allow work from home are doing so in order to limit the spread and protect the health of the general population. You have disabled activists to thank for that. But I resent the fact that I asked over and over again for these accommodations and was denied, resulting in the end of my career. It didn’t need to happen that way. I didn’t want to work from home so that I could slack off or relax. I wanted to work from home so that I could WORK. Now I can’t work at all. That’s what I feared and exactly what happened. I feel like I was taken advantage of, so thoroughly and completely and without care. I was a cog in their machine and I wasn’t even worth enough to them to try to perform maintenance – it was easier to just replace me with someone new. I had such an emotional bond with the place that I worked, that started when I was 8 years old, and it was not reciprocated at all and that really really hurts. Accommodations are considered “special treatment” right up until able-bodied people need them, as disability activist Imani Barbarin says. They always COULD have made these accommodations, they just didn’t want to. So many people with disabilities or chronic or mental illnesses have been denied workplace or school accommodations that have now been easily and quickly implemented and it’s hard not to resent that. To see people not taking those accommodations seriously is a slap in the face.
Some of y’all never had to cancel plans because of your health and it shows.
I get it, I really do. The anticipation and excitement of a trip or an event and then the letdown of cancelling it without being able to postpone. I feel this on multiple levels right now and I don’t even have it that bad so healthy people, get some perspective please. I love Maryland Basketball. I have season tickets and it’s one of the very few social things that is worth the payback crash. I don’t go to every game, but I go to them when I can (meaning when I have two days open after to recover because I will be crashed and bedbound after.) I’m sad that I don’t get to see them play in the tournaments. I’m sad for senior point guard Anthony Cowan Jr. who has been an unsung hero his entire career and won’t get to play in his final conference and NCAA tournament.
I booked a trip to London, Paris & Brussels with my parents and my husband before my symptoms progressed to moderate M.E. I had been debating postponing it, but since I got a wheelchair and had started to feel better, I was excited to go and wanted to see how I would do and adjust to living my life with my current level of symptoms. I’m ok with my illness now. It may be restrictive or limiting, but I am now feeling some semblance of freedom and a return to normalcy that my wheelchair has afforded me. I was supposed to leave Sunday, March 15 and I would have been there now. I cried cancelling all of these plans. I have been fighting with companies for days trying to be given exceptions to postpone my trip or be refunded. I was diagnosed with hypogammaglobulinemia (low IgG) on March 11 and my doctor told me I was not allowed to travel due to being immunocompromised and at high risk of infection, so I canceled everything on Thursday and Friday, before many companies had new plans and policies in place. Right now, I have only been refunded $900 of the $5900 spent, but two companies said they will be issuing vouchers. Even if I am out the money, I cannot risk my health and the health of others by traveling during this time.
On top of the fear and anxiety of the virus, there’s all of these cancelled plans and isolation. It sucks. I’m sad. But you know what’s devastating? The rest of my life plans that have been cancelled and postponed because of my illness. My career – cancelled. My plans to start a family – indefinitely postponed. I’m sad about my trip and I’m sad about March Madness, but I grieve my career, my loss of health, and my derailed life where I’m unable to have any plans because of my uncertain and unpredictable health.
PLEASE cancel your St. Patrick’s Day plans, social plans, vacation plans, and any other plans that are not essential right now. They can be postponed and are not worth the risk. Disabled and chronically ill people are excluded from those kinds of things year-round – you can do it for a few weeks.
Some of y’all never lost trust in the healthcare system due to mistreatment and it shows.
To believe that you can go to the doctor and receive care is such a privilege. My experience has not been that way. I have tried so many times to get treatment for illnesses and I’ve been disbelieved and denied care. It took me two years to be diagnosed with hashimoto’s and hypothyroidism when I had clear symptoms, a family history and abnormal blood test results. It took me three doctors and three months to be diagnosed with a fractured ankle, while I kept walking on it, thinking I should push through and it would heal. It took me more than 10 years to be diagnosed with endometriosis. It took me nine years to be diagnosed with ME/CFS. I have had to fight and advocate for myself for years and years and years and it’s so hard and I’m so tired of it. I don’t trust our medical system to be able to help me if I were to get sick with this virus. There is no treatment for M.E. They would have no idea how my chronic illnesses would make this virus present differently in me than a typical patient and I don’t trust them to figure it out. I don’t trust doctors to provide the care I would need if I were to contract this virus – my life is at stake here. Other people with M.E. have become bedbound after a viral illness and I’m not willing to take that risk. Black women are routinely disbelieved and denied basic medical treatment like painkillers. How will that affect the treatment they receive if they go in with symptoms of the virus? These are valid fears and it is so frustrating to see healthy people minimize these fears because their privilege has saved them from these experiences.
I have had access to healthcare, but many people will not be able to access the care they need during this crisis. Healthy people are putting people at risk by exposing themselves. The biggest risk we have right now is the potential strain on the healthcare system and everyone should be doing everything they can to avoid coming into contact with this virus – especially if you are healthy. Make space for those who aren’t.
Some of y’all never had to think about the effects of your actions on someone who isn’t healthy and it shows.
I am so angry seeing people joke about this and not take social distancing and recommendations to cancel events and schools seriously. You may be healthy now, but you can be a vector to spread this illness to someone who isn’t. I am immunocompromised. I’m on the privileged end of the spectrum, with a husband who can telework and keep his stable income. Many people aren’t able to work from home or will lose their income now. Some people have to continue going to work while other healthy people aren’t taking precautions and could spread it to an immunocompromised family member. Public health includes ALL of us. You’re not just taking these precautions for yourself, you’re doing it for all of us. I am disgusted that people have to be convinced that we matter and they should take precautions for us.
I am also afraid of the impacts on those with mental health conditions. For someone with a compulsion towards hand washing who sees the news coverage of people continuously sanitizing or if they see the other side of someone disregarding those hygiene recommendations. My anxiety is heightened seeing people online disregarding social distancing and hygiene recommendations but they don’t think about the impact of their actions on others. I saw a video of friends celebrating a birthday and blowing out candles on a cake and I nearly had a panic attack. My husband helped me ground myself with breathing techniques and was able to calm down. I can’t control what they are going to do, but I can control what I am doing. With everything going on, I cannot believe that someone wouldn’t at least cut their piece of cake first, and then blow the candles out. They really all ate cake that two people blew all over. You might as well have just had a party where you all cough directly into each other’s mouths.
It is horrifying to see that the governor in my state issued a state of emergency, closed schools and recommended that people stay home as much as they can, but then my social media feed was full of people out at bars, taking photos pressed cheek-to-cheek. I don’t understand. I guess it’s selfishness, but it’s also just plain stupid because you are putting yourself at risk too.
Some of y’all never had disastrous effects on your health from “just the flu” and it shows.
This one is really getting to me – All of the people minimizing the impact this virus could have because it’s “just the flu.” I contracted H1N1 and was never healthy again. I don’t know if it unmasked pre existing conditions or if it triggered them, because we don’t have adequate scientific research. We know there is a link between viruses and M.E. but not a definitive relationship. My autoimmune conditions surfaced following that flu. My M.E. presented after that flu. I was healthy and thought I was invincible. I was in college and went to class with a 102 fever. Then I went to the health center and they were shocked when I said I just came from class. I am a machine and a master at powering through, but I never recovered from that virus. I never woke up feeling rested again. I was very high-functioning before, but I had to adjust to a new energy level. My 3.8 GPA dropped to a 3.0 (oh no! lol) and the next semester I had to quit my part-time job and I couldn’t return to my internship in order to focus on finishing school, but I was able to manage well with mild symptoms of M.E. and continued undiagnosed for years. To reiterate my point – I was misdiagnosed three times when I had a fractured tibia and two torn ligaments in my ankle because I kept walking on it and powering through – I am a machine, but I am unwilling to risk the effects this virus could have on my body. This virus could kill me. It could leave me bedbound and unable to speak for the rest of my life. Nothing is worth that risk. I have been working nonstop for the past 8 months on nothing but seeing specialists and trying new treatments in order to manage my chronic illness symptoms – I am not willing to take any risk that may derail that progress.
If you are healthy now, this virus could leave you disabled like me. If you are healthy now but are genetically susceptible to some kind of condition, this virus could unmask that and you may never be the same. I am getting so angry seeing people going out and doing things and ignoring warnings and saying things like, coronavirus can’t stop me! Hey, guess what. It can. Maybe you’re lucky and it won’t… but it can. People think that their immune system is strong and will protect them. A likely cause of my complications is an overactive immune system that went into has been overcompensating for years. Now, it has progressed so that I have hypogammaglobulinemia (low IgG), meaning my body is low on the antibody that protects against bacterial and viral infections, making me highly susceptible to coronavirus. This virus could set off the same reaction for other healthy people. I don’t want anyone to have to go through what I have with M.E. It’s a terrible illness. This week has shown me that I care about people more than they care about themselves and a hell of a lot more than they care about us.
Ignoring advice from the CDC and WHO and state governors does not make you strong, it makes you stupid and irresponsible. You may never see the effect your decision had on others, but you are putting lives at risk. Disabled people are excluded from bars and restaurants all the time because of inaccessibility. Chronic illness patients are excluded from social activities all the time because of symptoms. And you couldn’t take two weeks to protect us and protect yourself? It’s heart-breaking. I am fighting harder for your health and for your life than you are! I realize this sounds self-righteous, but if one good thing comes out of this, maybe people with privilege will finally listen to marginalized groups about our experiences – without risking learning from experience. I’ll talk more about this in the next section.
Some of y’all never lost trust in the government to protect you and care for you and it shows.
There is just so much for me to unpack here. The current administration is handling this so poorly. I’m thankful that the governor in my state and many others stepped up and issued guidelines to protect us by closing schools and cancelling events. It’s amazing to me that the NBA had to be the catalyst to protect our country. The only other time I can remember an entire league cancelling games is after 9/11/01. Now we have the NBA, NHL and NCAA cancelling events. This is serious. The CDC and the NIH have neglected my illness for decades. I hope they don’t do the same if there are people who remain ill after contracting this virus. Activist groups for M.E. have been given so many bullshit excuses about why funding can’t be made available for research, so I was not trusting that these agencies would immediately be able to fund research to develop testing and treatment for COVID-19. Couple that with a senate that refuses to hear any legislation and an executive branch that only cares about the stock market and I am just so full of fear. I am honestly shocked, appalled and disgusted to see that people are still trusting the president and any word he says. I don’t want to hear from anyone who continues to support this president and I don’t care about their reasons why. It is inexcusable to continue to support that man when he shows over and over again that he does not care about people and only cares about money and power for the elite. I don’t want to explain to them why I don’t and I don’t think we should have to continue to explain to them why our lives matter.
I know I still have so much privilege here. So much that what I’m saying here can’t possibly encompass everything I should. I am a white woman who is relatively financially secure, thanks to my husband. Marginalized groups have been telling us this for years – that the government has left them behind and doesn’t do anything to protect them and it will harm us all. Groups like #BlackLivesMatter have made so much progress towards equity, but this is quickly proving what they have said all along. The intersection of race and illness is so important as well. Due to environmental racism, many black Americans are immunocompromised and could be impacted more by this virus. People with privilege have always refused to listen to marginalized groups about how they have been mistreated and this pandemic is another example of that. Marginalized groups will bear the biggest impact from this pandemic and healthy privileged people are going about their normal lives without a care of the impact they may have on others. How many times do they have to beg you to care about them? The ironic thing is, people with privilege may have ignored black people, indigenous people, LGBTQ people and other marginalized groups – but by ignoring disabled and chronically ill people in this instance – you may become one of us and then you’ll finally see what you’ve been willfully ignoring all these years. And to be honest – we don’t want you to have to experience it yourself to join the fight, we just want allies who believe us and fight for us.
My hope is that this is exposing the lies and the corruption. The accommodations that were not feasible for disabled people – they are feasible when everyone’s health is at risk. The money that has never been available for medicare for all, universal child care, and other policies – $1.5 trillion was magically available for Wall Street. Homeless families in L.A. are occupying vacant homes owned by the state in order to self-quarantine. State officials are working with hotels to provide housing for homeless people during this crisis. The Republican governor of my state called the president out today and maybe his party will finally hold him accountable. This has the potential to bring about major changes that we’ve been told were not feasible for decades and that gives me hope.
Some of y’all have never been minimized, ignored, and gaslit and it shows.
This one is really hard for me. It comes from all angles. I do it to myself, doctors do it, employers and colleagues do it, family and friends do it, people on social media do it. I am so fucking sick of the minimization, the ignorance, and the gaslighting. We have seen examples of how to quickly and effectively contain and treat this virus, yet our government officials ignored it. We see healthcare workers and people struggling in other countries and people in America are minimizing their suffering. The gaslighting is already starting with people saying, “if this turns out to be not as big of a deal, we will know the media is lying.” NO, we will know that containment worked. Now, some people are seeing what we disabled and chronically ill people and other marginalized groups have known for a long time. They’re seeing how it feels when you can only rely on like-minded individuals because the privileged group will keep shouting that you’re wrong and making things up, despite the facts right in front of your faces. Friends are telling me their coworkers are mocking them for wanting to telework. People are ignoring guidelines and continuing to shake hands and touch everything without sanitizing. People are going to bars and posting photos with their faces touching. Those same people are saying we’re overreacting. How can I possibly be overreacting when there are people that are doing literally nothing to help limit this? People are deliberately disregarding everything they could do to help, so I think we are not reacting strongly enough to drill this into their minds.
The virus is already killing people in the U.S. and people are mocking us for taking it seriously and trying to slow the spread. I am having a very hard time balancing what I feel is my responsibility to be informed and inform others with my anxiety over what is happening. This virus should not be minimized or ignored. Your anxiety or trauma resulting from it will not be minimized or ignored. We will not allow the misinformation and gaslighting to spread. This is a public health crisis and the only way we can go through it is together, by taking care of ourselves and taking care of each other as best we can. Do what you need to do to self-soothe, to stay grounded, to maintain some control over what you can control.
It is just totally dehumanizing to see people continuing to say “it only affects the elderly” and “it only affects those with compromised immune systems” as if we are disposable and don’t matter. We can hear you. We see you. You all are really exposing yourselves here and showing who you truly are. We do matter. We are not disposable. You should be doing whatever you can to protect us. We shouldn’t have to be begging you to do this for us. You should do it because you would also be protecting yourself. The ironic thing is, this time, by ignoring the marginalized group, the privileged people could join it. Healthy people could get sick and die. Healthy people could get sick and never recover. We’re fighting for them too. Even when some of them won’t support us right now or ever.
One more thing I want to say in closing because I’m having to continuously remind myself of this. Even when I see people posting online, blatantly disregarding social distancing and hygiene recommendations, I do not hope that they come into contact with this virus and develop symptoms. If they do, it isn’t their fault. Illness is never our fault, it’s just something that happens to us. I have to continually remind myself of this when I place blame on myself. I blame myself for not listening to my body, for pushing through my symptoms, for making myself more ill. It was never my fault, and will never be my fault, that I got sick. No individual is to blame for contracting coronavirus and we still must do what we can to take care of ourselves and take care of each other (from a distance) during this pandemic and as we move forward. I am doing whatever I can to prevent myself from contracting this virus and I feel good about my efforts to do so. I am scared for all of the people that could get it and could stay sick from it, but we’ll be here to support you when you join us. I hope that most people won’t be joining us in the sick kids club, but please support us and listen to us – we need it.
This is a guest post by Lori Madeira. Lori is a ME/CFS advocate who posts on social media about a wide variety of topics relating to ME/CFS and other chronic illnesses. You can follow her on Instagram and Twitter “@MECFSWarrior” and Facebook “Lori Madeira | ME/CFS Advocate”
Have you been interested in learning more about Jennifer Brea’s recovery but haven’t had the cognitive ability to read more about it? Below is a condensed timeline of important facts taken from her Medium.com blogs, to help you quickly understand about her illness onset, functionality during her illness, surgeries in 2018, and her recovery from ME. This post takes 12 minutes to read.
In 2008, Jennifer briefly lived in Beijing, China in a house with severe mold infestation, exposing her to massive amounts of black mold over a period of a few weeks. She developed memory and concentration problems. She then collapsed unconscious with a thick, black snot oozing from her nose. She immediately left that house.
After that experience, she started to have hypersensitivity to mold and mildew. She developed food intolerances and a sensitivity to alcohol. These were possibly all symptoms of early Mast Cell Activation Syndrome, which she believes was triggered by her mold exposure. She was otherwise healthy and functional.
Black mold can directly release collagen degrading enzymes. Viruses can trigger collagen degrading enzymes as part of a person’s inflammatory response.
She believes her mold exposure set the stage for a massive inflammatory response in her next major viral infection, by initially causing some connective tissue damage and triggering mild MCAS.
In early 2011, she had a fever for ten days. It peaked at 104.7. She became suddenly ill after this acute viral infection, and developed ME/CFS and PEM.
Tests weren’t done at the time to confirm the virus she was infected with, but Dr. John Chia believes she had Cocsackie B4. She would later test for high titres of autoantibodies.
She believes a hyper-inflammatory response to this acute viral infection damaged the connective tissue and ligaments in her craniocervical junction. This caused brainstem compression and Craniocervical Instability to develop at this point, and was left undiagnosed for seven years.
She became progressively more ill. By 2012, she became bedridden and was incorrectly told she had “conversion disorder.”
She was eventually diagnosed with ME. She met all definitions of ME/CFS, including the ICC and CCC definition of ME/CFS. She prefers the term “ME” even though she thinks ME and CFS are one in the same, see her blogs for more information on her thoughts.
She developed Postural Orthostatic Tachycardia Syndrome. She also developed and was eventually diagnosed with full blown Mast Cell Activation Syndrome.
She had the classic symptoms of ME, POTS and MCAS. As well as those, some of her worst symptoms were sound hypersensitivity, light hypersensitivity, neurological symptoms, and difficulty regulating her body temperature.
From 2011-2018, she lived mostly in her bedroom, only walking to go to the bathroom. At her best, she could leave the house in a power wheelchair, as long as she was careful to pace and not to induce PEM.
She started wearing a fitness watch in 2015. She was averaging 250-300 steps per day between then and 2018. The average for a healthy person is 5,000-7,000.
Life In-between Onset And “Unrest”
During the time she was making Unrest, she spent three years living in tents in her backyard in Princeton from April to October for mold avoidance. She reacted to every building on the East Coast. Before mold avoidance, she was bedbound and able to eat only three or four foods. After, she experienced remission of nearly all food sensitivities, greater cognitive and physical function, and some improvement with ME.
By 2017, the combination of mold avoidance, antivirals- Valcyte and Valtrex, Mestinon, Fludrocortisone, and Ketotifen had improved her overall health. Finding those treatments over the course of a few years took her from very severe, to severe, to moderate, to moderate on the spectrum.
In 2017, she was moderate enough to enable her to travel to promote Unrest with the aid of a power wheelchair and many crashes in hotel rooms.
She included her own MRI taken in 2012 in “Unrest.” In early 2018, a neurosurgeon reached out to her after seeing “Unrest” and told her that her MRI showed an empty sella- an indication of intracranial hypertension. This finding was clear on her MRI but was previously incorrectly considered irrelevant.
She had the symptoms of intracranial hypertension for years: headaches and the feeling of pressure behind her eyes. In hindsight, she now attributes the crash after the parade in “Unrest” to intracranial hypertension.
In March of 2018, she sought diagnosis of intracranial hypertension by getting a type of MRI with contrast to image her veins. She had a high volume lumbar puncture to see if temporarily reducing the spinal fluid volume in her brain would improve her symptoms. It did temporarily, most notably, her ability to read and dizziness improved.
These tests lead to a suspected diagnosis of intracranial hypertension, something she had had since the early stages of her onset, but had gone undiagnosed until then. She needed further testing to confirm this.
These tests and findings also lead to the first doctor to suspect she had Craniocervical Instability, aka CCI, that needed further investigation.
Thyroid Surgery And Aftermath
In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. She had put off having this surgery until after the promotion from “Unrest” was over. During the surgery, her neck was hyperextended to intubate her. She theorizes that this exacerbated a mild to moderate undiagnosed case of CCI that she had had since her ME onset, and turned it into a severe case.
She awoke from the thyroid surgery with excruciating pain in her jaw. She was weaker, now experiencing numbness and difficulty speaking. She couldn’t sit up without falling over. She was possibly experiencing spinal fluid leaks. All of her ME and POTS symptoms got much worse.
She developed the new and disturbing symptoms of stopping breathing (central sleep apnea) while she was completely awake, every time she laid on the back of her head. She had to lie on her side to remain breathing. She became non-responsive and looked like she had passed out every time she turned her head to the left.
All this resulted in a huge crash in July 2018. Coupled with the new symptoms, this was the most symptomatic and debilitated she had ever been.
Between Thyroid Surgery And Her Three Neurosurgeries
On the advice of her friends with Ehlers Danlos Syndrome, she began wearing a hard neck brace: a Philadelphia collar. She found that it relieved some of these new symptoms. It did not relieve her ME or POTS.
Her physician, Dr. David Kaufman, ordered an upright MRI. He was the second doctor to believe she had CCI.
She underwent two invasive tests: cervical traction test and a 24 hour intracranial pressure bolt test. Two bolts attached were surgically implanted to be attached to metal handles. A small hole was drilled into her skull and a probe was inserted to monitor intracranial pressure. She then underwent 24 hours of testing, measuring and monitoring her symptoms.
The invasive cervical traction test was performed, using the two bolts and handles to attach to a weight and pulley system. They used this to lift her head off of her spine. At thirty pounds of traction, she felt all her symptoms lift. She temporarily had complete remission of the agony of ME she had experienced for seven years. She knew then that brainstem compression was the underlying mechanism of her ME.
The intracranial pressure testing monitoring definitively confirmed her intracranial hypertension diagnosis.
She was definitively diagnosed with Craniocervical Instability and Atlantoaxial Instability, aka CCI/AAI, and Tethered Cord Syndrome. Her abnormal breathing was caused by cranial settling.
Starting in November 2018, she had three neurosurgeries over three months. One on her upper cervical spine, a craniocervical fusion, and two more surgeries in her lumbar spine.
On November 28th, 2018 she underwent a craniocervical fusion. The skull is pulled upward and placed into a corrected position, and then the occipital bone on the skull is fused to the upper cervical vertebrae to hold in the corrected position. Essentially, this lifts the head upwards permanently via surgery. This is very serious surgery, typically taking 4-8 hours and recovery from it takes a full year.
She woke up from her craniocervical fusion surgery with her ME symptoms in remission. It corrected her breathing problems/central sleep apnea, numbness, and weakness.
After the craniocervical fusion, she woke up with temporary remission from POTS symptoms. Her POTS symptoms went away and came back repeatedly over the course of a few months, she believes due to post surgical swelling.
In December of 2018, one week after her craniocervical fusion, she had surgery for tethered cord release. She believes she was born with a tethered cord. After that surgery, her POTS temporarily worsened, likely due to swelling.
In January 2019, she had another lumbar spinal surgery to release a hematoma that was compressing her spinal cord, a complication from a prior blood patch.
These three surgeries were brutal and the greatest traumas of her life. While her ME symptoms remitted during her craniocervical fusion, her full remission and permanent remission wasn’t clear at that point because of the impact of these surgeries was so severe. She needed significant recovery and physical therapy. And after seven years mostly in bed and wheelchairs, she was deconditioned.
During the recovery process from her surgeries, she slowly regained her ability to walk. She was able to walk 4,000-7,000 compared to her average of 250-300 pre-craniocervical fusion. By March, physical therapy wasn’t causing PEM, but instead gave her an endorphin rush.
In March of 2019, she went into full permanent remission of POTS and announced this publicly. She could easily stand without her heart rate going over 94. She theorizes that her POTS was caused by brainstem compression.
What was clear to her since receiving thirty pounds of cervical traction and how she felt when she first awoke from craniocervical fusion surgery had held true: ME had gone into remission. In May of 2019, she announced that she no longer had ME.
Since then, she is now well enough to hike, exercise, lift weights, dance, hold a plank for two minutes, drink alcohol, read and write long form, and multi-task.
She has experienced significant complications since undergoing surgery. She has had swelling that recompressed her spinal cord, trouble with recurrent spinal fluid leaks, and jugular vein entrapment by her omohyoid muscles. She has had to deal with the significant emotional trauma from all this.
Now, the only illness she still has is MCAS, which she still takes Ketotifen for. She attributes her mold sensitivity to MCAS and is still reactive to mold, but that seems to be improving. She takes no other of her previous ME and POTS medications. She takes thyroid replacement hormone due to her thyroidectomy.
A growing number of clinicians believe that intracranial hypertension may be an important part of the pathophysiology of ME/CFS and Fibromyalgia.
She theorizes that an acute viral infection made worse by prior mold exposure caused the damage connective tissues and collagen. Infection can damage the cervical spine. The region where her skull connected to the upper cervical spine had “lax” ligaments, causing cranial settling into the brainstem. This caused brain compression. She believes that brainstem compression caused her ME symptoms, POTS and autonomic dysfunction, considering they were relieved upon releasing the pressure on her brainstem when she had the craniocervical fusion lift her skull up off her compressed brainstem.
Craniocervical fusions are not a cure for ME. They are a treatment for people with ME who have CCI.
None of this means that she didn’t have “true ME” or “true CFS.” Jennifer Brea absolutely, factually had ME/CFS and was scientifically confirmed as having it. Her other diagnoses uncovered a previously little-known possible cause, complication, or underlying mechanism of ME/CFS. Her remission proved the factual basis of all this.
A lot of these symptoms, diagnoses, and surgeries are common in EDS. She has some hypermobility but doesn’t meet any diagnostic criteria for EDS. She suspects she has a connective tissue disorder, due to changes brought about after her viral onset. She believes that connective tissue damage and collagen degradation was a part of her ME, and research indicates that this may be true for a large number of PwME as well.
A Swedish study of 234 patients who met the CCC definition of ME/CFS found 49% had hypermobility, and 20% met the criteria for EDS. 67% met Fibromyalgia criteria. Three different signs of intracranial hypertension were found in patients at rates of 83%, 55%, and 23%. Herniation of the cerebellar tonsil was found in 56% of patients. Chiari malformation was found in 13% of patients. This study confirmed that structural neurological abnormalities are present in a significant subset of ME patients.
Jennifer Brea’s recovery has ushered in a new era of discovery and hope for the ME/CFS community. We have a long way to go to understand the mechanisms that caused her particular problems and led to her recovery. We also have a tremendous amount to learn about how these mechanisms may affect the ME/CFS population as a whole. What’s clear now is that connective tissue damage due to viral infection or MCAS may be causing brainstem compression in ME/CFS.
We must keep an open, inquisitive mind as we move forward. We must learn as much as we can, piecing these puzzle pieces together. We must support one another in our journeys to seek answers for our own personal health. And we must not attack one another over disagreements about this topic.
Hopefully more and more answers will become available in the near future. Let’s hope that a clearer path of what PwME should be doing in response to this possible mechanism behind ME/CFS becomes apparent soon. 📸: Jennifer Brea, from her Medium.com blogs
This is a guest post by Lori Madeira. Lori is a ME/CFS advocate who posts on social media about a wide variety of topics relating to ME/CFS and other chronic illnesses. You can follow her on Instagram and Twitter “@MECFSWarrior” and Facebook “Lori Madeira | ME/CFS Advocate”