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Becoming a Wheelchair User

I am very proud and excited to introduce Wilma! My new, custom wheelchair.

Realizing I needed a mobility aid

Whitney is sitting in her helio wheelchair in a parking lot, smiling.

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.

My cat Janet sitting on the wheelchair I purchased from Amazon.

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.

Chronic Illness & the Stages of Grief

Recently, I was talking to my therapist about how much I want to get back to my “old life” and the “old me,” but I don’t think that will ever happen and asked her how can I accept that? How can I make adjustments so that I can still live a good life without feeling restricted and limited by illness? This isn’t something we were able to discuss in one session and is probably something that I will be working on for the rest of my life. We started discussing the stages of grief and that it’s ok to grieve for the life I had and also for the life I thought I would have and the life I expected. 

The stages of grief are different for those of us facing chronic illness than they are for those facing death. It’s not linear for us and will continue to move back and forth between stages. Right now, it seems as unpredictable to me as my symptoms – and also seems highly dependent on my symptoms. 

Stage One: Denial & Isolation

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Chronic Illness & the Stages of Grief. Stage 1: Denial & Isolation. ———————————————————————————— I didn’t realize how much harm I caused myself because I was stuck in denial until it was too late. I ignored my symptoms and kept pushing through, not allowing myself to rest. I kept pushing through, ignoring my symptoms until the big crash, when I couldn’t push any longer. I tried many treatments and was disappointed when I never found a quick fix. I was in denial that chronic illness means chronic and it’s about managing symptoms rather than curing them. ———————————————————————————- Isolation is difficult because it is still hard to talk about chronic illness with friends and family who expect that I’ll wake up one day and be back to the old me. I’m still me, I just need some adjustments now. This online community has been such an invaluable resource to learn about managing chronic illness and avoid isolation. ———————————————————————————- I didn’t get into it on this post, but I also think it’s important to acknowledge how being disbelieved by medical professionals can make you get stuck in this stage. Medical gaslighting creates denial and isolation. Overcoming those issues and finding doctors that listen, believe me and provide treatment options has helped me be able to move in and out of this phase faster now. ID: AT ——————————————————————————— How do you cope when you fall into the denial & isolation stage?

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What denial looks like for me:

  • I ignored my symptoms for years and pushed through, thinking that chronic fatigue and chronic pain were just things that people dealt with all the time. 
  • I visited multiple doctors and multiple specialties looking for a simple solution or a quick cure. 
  • I thought I could find a way to control my illness. 
  • I persisted with my relentless pace and refused to slow down. I continued working and taking on more tasks than I could handle. I never said no to an invitation from friends, even when I knew there would be consequences with worsening symptoms. 
  • I had frequent flare-ups because I refused to acknowledge that my illness required adjustments, which I saw as limitations. 

What isolation looks like for me:

  • I didn’t tell anyone except my husband about the severity of my symptoms because I didn’t want to be seen as weak or dramatic.
  • I have always been one to plan an outing to a sporting event or a get-together among friends, but I no longer have the energy to plan and execute these things. As a result, I don’t see my friends as much. 
  • It takes a lot of cognitive energy to be around people or even talk to someone on the phone and I often don’t have the energy for socialization. 
  • I don’t post on my old social media accounts often and don’t show what life is really like with chronic illness. I set up a separate instagram account to connect with other people with chronic illness that understand. Few IRL friends follow that account. 

How I cope with denial & isolation:

  • Recognize healthy vs unhealthy denial. Healthy denial means I can continue living life without obsessing about my illness and overly restricting. However, ignoring symptoms and warning signs is harmful to my body. I have to be aware of my body and what is going on so that I can better manage my symptoms. Unhealthy denial means that I am ignoring my body and what I need to improve my health.
  • Reach out to friends and family for support. Sometimes I feel embarrassed or ashamed about my symptoms, but the more I share and realize that people can empathize, the more supported I feel. 
  • The chronic illness community online has been so helpful. I feel empowered to share more with them and when they listen without judgment, I then feel comfortable sharing more with the people in my personal life that aren’t experiencing chronic illness. 
  •  I try to avoid comparing myself to others. We all experience illness and symptoms differently. I used to tell myself to push through because I had seen other people with serious illness do it before. I thought to myself, if Mike was able to continue working full-time while undergoing cancer treatments, then I should be able to keep working. This is a form of denial where I deny my illness and hidden disability by comparing it to others. 
  • I try to avoid comparing myself to “the old me.” My symptoms and illness will fluctuate. My illness is not a moral failure. It’s just something that happened to me and something that I will adjust to. 

I was stuck in the denial and isolation phase for a long time. I still jump back to stage one when I see another diagnosis that mirrors my symptoms. I wonder, maybe this is the answer and I can fix it. I am constantly working on focusing on understanding my illness rather than fixing it. Seeing it as something to be fixed creates resistance to my symptoms. Focusing on understanding my illness allows me to accept my symptoms and focus on improving my quality of life while managing those symptoms. Finding adjustments also helps me get back to the things I love. For example, I can go to a football game if I use my wheelchair and earplugs. I can go out for New Years Eve if I use my wheelchair and bonus – I went to the Guinness Brewery in Baltimore and celebrated Dublin New Year at 7 pm local time, was home by 9:30 and asleep by 11pm! 

It’s also important to acknowledge the effects that medical gaslighting and being disbelieved by medical professionals has on this stage. It took me a long time to get out of the denial phase because my symptoms were denied by medical professionals for so long. My endometriosis pain was denied for more than 10 years. My fatigue was denied for three years before I finally found a doctor who tested my thyroid levels and antibodies and treated me. Then, I was back into the denial phase because she continuously said that my levels were fine and that I shouldn’t have fatigue instead of listening. I avoided going to the doctor at all for a long time because I was never believed and misdiagnosed so many times – even for a broken ankle. It took me so long to realize that my pain and my fatigue are real and are having a drastic impact on my life and ability to function daily. If I had been believed from the start, maybe I would not have been in denial for so long that it made my symptoms get this bad. 

Stage Two: Anger

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Chronic Illness & the Stages of Grief: Anger 😡 This might be the stage that I was most excited to write about because it’s the most visible and people see it as negative, when it can be useful! Anger is a rational response to chronic illness! I am so angry that my career has been taken from me, my hobbies, my ability to take care of myself, and so many other things. I’m furious that people treat me and other people with visible and invisible disabilities like shit – and we should be angry! 😡 Anger is useful when it's in response to an injustice and I can remain calm and teach someone about my illness and disability rather than snapping at them. When I can channel my anger into something useful, like this post. There are also many times when anger isn’t useful. Like when my rage adds to my symptoms and raises my heart rate, flushes my face, and makes me sweat. Or when I take my anger out on someone else when they don’t deserve it. 😡 It's normal to be feel anger and it's important to handle it in a healthy way. I have had a hard time learning self-compassion. I’ve always been a perfectionist who is very hard on herself. Learning to think, would I say this to a friend in this situation, has helped me treat myself better. Learning to laugh when I drop something and joke about how my hands don’t work, rather than rage about it, has been a welcome change. It’s also important to talk about the things that make me angry and not let them stew. Even before illness, I was very bad at bottling things up until I exploded. I’ve learned to steel myself for things that will make me angry (like certain politics that take away my humanity), because I need to be calm in order to communicate effectively. Other times I just need to vent! It’s ok to let it all out, scream, cry, make jokes, be sarcastic, let out all the the things you wish you had said, with someone who listens and understands. 😡 Sometimes I just need to redirect and enjoy something great, like a hilarious TV show, a fun song, a yummy snack, warm bath, anything to relax and take time out. 😡 I don't have the answers but I'm trying to learn. How do you manage anger with your #ChronicIllness ?

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It’s natural to become angry when your life changes due to chronic illness. It’s not fair. I remember what it was like to feel good and I haven’t felt that way in years. Everyone gets grouchy when they’re tired – and I’m always tired. I resent having to limit and restrict my activities. It’s frustrating to monitor everything I do and every thing I feel. It’s easy to feel hopeless when I’ve tried so many treatments, diets, and supplements, and have not seen much improvement

What anger looks like for me:

  • I’m not just angry at specific people or situations, I am angry at the world. 
  • The current president, he-who-must-not-be-named, sends me into a RAGE.
  • I have a hard time letting go of incidents that anger or frustrate me. For example, a woman made a rude comment to me in the store about how I shouldn’t be driving the electric scooter down the back aisles. I kept ruminating on it and kept thinking of different ways that I wished I had responded. 
  • LIttle irritants fill me with rage. Some small things that are incredibly irritating – not being able to open something (a jar, a bottle, candy wrappers, etc), tripping on my husband’s shoes that were left out, unsolicited health advice, to name a few. I am getting better at redirecting my thoughts when these things happen and not becoming angry. 
  • Anger towards myself. This is the most destructive and harmful type of anger. I blame myself for my illness and for not getting better. I blame myself for flare-ups, even when they are impacted by things that are out of my control, like weather changes or hormones in my monthly cycle. I feel helpless and weak and I hate myself for it. 

How I cope with anger:

  • Most importantly, I manage self-anger by practicing self-compassion. This is harder than it sounds! When I start thinking of angry thoughts about myself, I try to take a step back and look at myself the way I would look at a friend. I would stick up for my friend if someone was saying mean things to her, so I should also stick up for myself! It’s important to remind myself of the hard work that I am doing to manage my chronic illness and that I don’t deserve anger or rude remarks. It’s important to give myself credit for how far I’ve come. I can recognize the suffering I’ve endured without adding to it with angry thoughts. 
  • Allow myself to be vulnerable and talk it out. I shared a post on instagram about the rude comment from the woman while I was shopping with a scooter. Just the act of putting it out there deescalated my anger and made me see the humor in it. Then I received many reassuring comments from others with chronic illness or hidden disabilities and heard similar stories from a lot of people! While I am frustrated and angry that we all have endured these terrible experiences, it helps to know that it’s not personal and it’s not a reflection on me personally. It’s more of a reflection on the other person, who was also acting out of anger. It’s also ok to admit that it’s not all sunshine and rainbows all the time! Showing vulnerability and honesty helps me connect with other people and know that I’m not alone. 
  • Take a time-out. Sometimes when my anger fuse is particularly short, I have to avoid twitter and avoid the news because I know something small may set me off. I love to wind down and relax with a relaxing vanilla-scented candle and a funny tv show. Broad City, 30 Rock and Fleabag are my current obsessions. I can watch them over and over and over and still find something new to laugh at, while still rolling at the obvious jokes. 
  • Wear my suit of armor. Part of this is also recognizing my anger-triggers and preparing myself to react to them appropriately. I know that when I go out using a mobility aid, I will probably get some stares and might get some remarks. When I know that may be coming, I brace myself for it and let it roll off my back, rather than letting it get to me. I also bought some information cards and buttons to wear for when I don’t want to have to answer any questions! 
  • Recognize that anger can be useful. What is my anger trying to tell me? Sometimes I am angry about things that are out of my control, but sometimes I am angry because I want to change something and have been passive about it. For example, I was angry after my father said, “You aren’t one of those people that uses the motorized scooter in Wal-Mart, are you?” I calmly said, “Yeah I am because that is the only way that I am able to shop. And even with the scooter, it takes everything out of me and I crash afterwards.” It is natural to be angry because my dad was being judgmental of me and other people that need scooters while also minimizing our need for mobility devices by insinuating that “those people” use them because they’re lazy, not because they need them. This type of anger can be useful if I react to it properly, by using the tactics above, rather than by snapping at him. I was able to explain why people might not look sick but will need mobility devices and he understood. 

I find myself back in the anger stage frequently and it tends to coincide with symptoms flares. I once said, “everything bothers me when I’m tired and I’m tired all the time, so everything bothers me all the time.” I felt as though I had a new threshold for anger, like my default level was now so close to the top that any little thing that piled on would send me over the edge. It has been hard work trying to reset that anger level. My symptoms made me so angry and I had to learn to be compassionate towards myself and my body. I am a work in progress, but I am trying to laugh more and roll my eyes where I used to let anger simmer and I like it better this way. 

Stage Three: Bargaining

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Chronic Illness & the Stages of Grief. Stage 3: Bargaining. 💵 Maybe I’m weird, but this stage seems like the fun one to me. The excitement of a new treatment or new doctor and the hope of seeing some improvement. But it was also a really harmful stage to accepting my illness and accepting my diagnosis. I used bargaining as a way to fuel the belief that I wasn’t as sick as I really am, that I could “beat it” if I tried hard enough, that all I needed was a good mindset. None of that is true when it comes to chronic illness. If it were, there would be no chronic illness. 💵 When I was in this stage, I was excited about every new doctor and every new treatment. I thought that every new thing was going to be the solution that fixed me. Then when I realized I was still struggling, I would cry and panic and become depressed that things would never change. 💵 I will always continue trying new things, after all, that’s all we can do – trial and error. Since the government doesn’t want to fund research on the conditions that I have like #MECFS and #endometriosis I will have to try everything out myself. But I won’t make that bargain that this one thing will cure me or fix me. I will hope to see improvement, but not put all of my hope into being totally 100% back to my old self. 💵 The important thing I have learned about bargaining is that I can’t rely on one thing to be my everything when it comes to chronic illness. People love to recommend things like yoga, vitamins, juices, supplements, protocols, but no single thing is the answer. That’s the only way I can accept my chronic illness and move forward. By knowing that my body is constantly changing, my symptoms are constantly fluctuating, and I will always be looking for new ways to manage my chronic illnesses. I can remain hopeful without putting all of my hope into one person, one treatment, one pill, one thing. 💵 The truth is, I don’t need anyone or anything to “fix" me. I am amazing just as I am. Pale skin, dark circles, brittle hair, shaky hands, tired eyes, racing heart, achy legs, painful pelvis, foggy brain and all. And you are too, babe. 💜 ID:AT

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Bargaining is kind of the last chance at denial. It’s grasping at straws rather than accepting your chronic illness or hidden disability. If I do this one thing, I will recover. Or if I don’t do this anymore, I’ll recover. It’s a desperate attempt to have control over your illness, but it’s really just hoping for a magical intervention. 

What bargaining looks like for me:

  • If I go gluten-free, or dairy-free, or soy-free, or sugar-free, or [insert fad diet here], I will be cured. 
  • If I see this specialist, they will figure it out and I will be cured. 
  • If I get my good health back, I promise I will be a better person. 

How I cope with bargaining:

  • This one is pretty simple – the bargain doesn’t work and the illusion fades away. My illness persists, no matter what promises I make, so I stopped making hail-mary attempts at a cure. 
  • Remain hopeful without getting my hopes up. This is a delicate balance. I saw a neurologist who said, “fatigue is easy to treat, we just figure out what’s causing it and treat it.” I didn’t tell her that I’ve been working with many doctors for years and haven’t been able to figure it out and properly treat it. If she figures it out, AWESOME. But I’m not putting all of my faith into this one person and her ideas because I have been let down many times before. I will continue trying to find answers without letting myself lose hope or become discouraged if the tests all come back normal. After all, I don’t want bad news from a test result. I just want an explanation and treatment options.  

I find myself moving in and out of this stage rather quickly. I used to have hope that some treatment or change in activity or demeanor would totally cure my symptoms. I thought, I’ll go gluten free and these symptoms will go away. Didn’t happen. I’ll start this thyroid medicine and in two weeks, I’ll be back to the old me. Didn’t happen. I’ll monitor my heart rate and practice pacing and I’ll be cured. Didn’t happen. I’ll use this TENS unit and a hot water bottle and go to acupuncture and I won’t have chronic pain. Didn’t happen. Now, these things do help improve my symptoms, but they haven’t cured me. I no longer expect a cure or a total relief of symptoms, but I continue trying new things to see what will improve my symptoms and improve my quality of life. I no longer find myself in the bargaining stage because I have accepted that there is no simple cure for my chronic illness, but I remain hopeful that there are treatments that will improve my symptoms and improve my quality of life. 

The truth is, I don’t need anyone or anyone to “fix” me. I am amazing just as I am. Pale skin, dark circles, brittle hair, shaky hands, tired eyes, racing heart, achy legs, painful pelvis, foggy brain and all. 

Stage Four: Depression

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Chronic Illness & the Stages of Grief. Stage 4: Depression. 💙 This one took the longest and is the hardest to write about. It’s easy to become depressed when you’re battling chronic illness, especially when you’re exhausted and in pain all of the time and people disbelieve the severity of your experience. 💙 Depression is deeper than sadness and harder to relieve. Depression can be mild or severe, depending on the level of your illness or disability, other life circumstances, your personality before illness, your support system and more. Depressio is difficult to talk about because so many of us have had our physical symptoms written off as psychosomatic and been told “it’s all in your head.” Antidepressants are often used to treat chronic pain, but that doesn’t mean that pain is psychosomatic. These pills restore chemicals in the brain that both chronic pain and depression deplete. 💙 I would like to acknowledge that depression looks different for everyone and I recognize my privilege that I don’t have to worry about money right now, taking care of children or parents, I have access to medical care and I don’t face discrimination based on my race or sexual orientation. Managing depression and chronic illness is hard without those factors at play and it’s important to acknowledge the effect that race, gender, age, sexual orientation, gender identity and other factors have. My experience isn’t great, but it’s easy compared to that of womxn, POC, LGBTQI and their intersections. 💙 My depression strongly correlates with my symptoms. I still have a high level of motivation and I am easily depressed when my energy doesn’t match my motivation. Of course I’m depressed now that I can’t work and I often can’t leave my house, but I have made adjustments and find joy in many things. It’s not as easy as just deciding to change your mind. It takes constant work, noticing when I’m stuck in a negative cycle and reframing my thoughts. Depression isn’t a moral failure and it’s not a choice. It’s a normal part of grieving and part of the process of moving towards acceptance. How do you manage depression as part of chronic illness? ID: AT Full Post up on my blog, link in bio

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Depression is deeper than sadness and harder to relieve. Depression can be mild or severe, depending on the level of your illness or disability, other life circumstances, your personality before illness, your support system and more. Depression may increase when your symptoms flare. Being in constant pain may make you feel hopeless. The debilitating level of fatigue associated with many chronic illnesses may be confused with depression. 

If you are experiencing severe depression or suicidal thoughts, please contact a mental health professional. In the US, you can call the suicide hotline for help at 1-800-273-8255. 

Depression is difficult to talk about in relation to chronic illness because so many of us have had our physical symptoms written off as psychosomatic and been told “it’s all in your head.”  Antidepressants are often used to treat chronic pain, but that doesn’t mean that pain is psychosomatic. These pills restore chemicals in the brain that both chronic pain and depression deplete. 

Blaming physical illness on mental health has a murky past. This stems from Freud’s theories on a patient that he didn’t even see, labeled Anna O. Bertha Pappenheim was the woman behind the pseudonym. She suffered from “trance-like states, hallucinations, spasms of coughing, sleeplessness, a refusal to eat or drink, a rigid paralysis of the extremities on the right side of her body, severely disturbed vision, outbreaks of uncontrollable anger, a failure to recognize those around her, and finally a failure of language.” (Scull, Hysteria). Physician Josef Breuer, a friend of Freud’s, claimed to have cured Pappenheim by helping her trace her symptoms to traumatic events in her past, but this was a lie. Pappenheim was not cured and was institutionalized after being treated by Breuer from 1880 – 1882. She remained ill for years and recovered in 1890, becoming a social worker, writer and feminist (Jackson, Pain and Prejudice). In 1895 Freud and Breuer published their book, Studies on Hysteria, which claims that hysteria is the physical manifestation of repressed memories. It just seems so ridiculous that doctors in 2020 would believe one case study, of one woman, with clear physical symptoms, who obviously didn’t recover from this treatment! 

I would like to start by saying that depression looks different for everyone and I recognize my privilege that I don’t have to worry about money right now, taking care of children or parents, I have access to medical care and I don’t face discrimination based on my race or sexual orientation. Managing depression and chronic illness is hard without those factors at play and it’s important to acknowledge the effect that race, gender, age, sexual orientation, gender identity and other factors have. My experience isn’t great, but it’s easy compared to that of womxn of color. I wish I knew how to address it, but I’ll start by acknowledging it.

What depression looks like for me: 

  • My depression did not cause my illness. My illness caused my depression. 
  • I am more depressed when my symptoms flare. This is an understandable response to the pain and anxiety of a flare. 
  • I become depressed if I become too overwhelmed by my symptoms, my illness or other life stressors. 
  • I live with chronic pain and chronic fatigue. I feel helpless and this causes me to feel depressed as well. 
  • I was high-strung and anxious before I developed chronic illness and I have a difficult time with the loss of control and the unpredictability of chronic illness. 
  • I spend a lot of time ruminating on things I didn’t have the energy or time to do. 
  • I long for the past and fear for the future. 
  • I feel worthless and have an inappropriate level of guilt for things I feel like I should be doing. 

How I cope with depression:

  • I am so lucky that I have a disabled therapist. I really wish that this was accessible to everyone with a disability, but I know that it’s hard to find. She recommended the book that inspired this post: Living Well with a Hidden Disability by Stacy Taylor. Having someone to talk to who is empathetic and has experienced similar situations is such a huge help. Reading books, blogs, and instagram posts from people who are also experiencing chronic illness helps me navigate depression. 
  • Let it out. Watch a sad movie, listen to a sad song, just cry. We don’t have to be happy smiling rainbows all the time. I get sad and ignoring it or burying it will just make it resurface later, with even more strength. With sadness, this is easier and the feeling comes and goes. With depression, it’s harder to move past it, but it helps to remember that the feeling is temporary, like all feelings. 
  • Help others. I was very depressed when I was no longer able to work and wanted to find something I could do to keep active while still resting. Starting this blog and joining the chronic illness online community has helped me process my difficult emotions like anger and depression. I don’t wish these feelings on others, but it is a tremendous help to know that you’re not alone and to have someone to talk to that understands. I also started volunteering with #MEAction, which has given me purpose. 
  • Focus on what I can do, not on what I can’t do. I was depressed because I could no longer take my dog on hikes. When my symptoms are manageable, I can take him for a short walk around the neighborhood or to the dog park, where I can sit while he plays. Focusing on taking a walk rather than missing out on a hike is hard, but it has helped so much. I think that my massive crash has helped with this change of mindset because there was a quick drop-off in what I was no longer able to do and that made it easier to accept that I needed to make adjustments. Redirecting my thoughts and reframing things so that I don’t focus only on the negative is important.
  • Show self-compassion and don’t be biased! I am often overly harsh on myself. I often feel overly guilty and can’t stop thinking about what I “should” be doing even though what I really should be doing is resting. The dishes can wait until tomorrow if it means not putting myself in another flare. 
  • Remember that I’m not alone. Everybody feels sad sometimes and a lot of people are depressed. Thoughts and feelings are temporary. It’s important to notice them, acknowledge them, and let them pass through. I try to notice things that make me depressed without dwelling on them. Talking to someone else who has felt the same way or is dealing with a tough situation like I am helps to process the feelings and move through the depression. 
  • This may not be the healthiest way to cope with depression, but indulging in guilty pleasures helps lift my mood. Snuggling with my pets, eating ice cream or reese’s peanut butter cups, watching broad city, listening to nsync or jonas brothers. Sometimes I just need a quick reminder that I can still enjoy many things.

My depression strongly correlates with my symptoms. I still have a high level of motivation and I am easily depressed when my energy doesn’t match my motivation. Of course I’m depressed now that I can’t work, I often can’t leave my house, I can’t read or learn new things as well as I used to, I can’t be spontaneous, I can’t stand in line shopping, I can’t have a few drinks with friends, I can’t travel easily, the list goes on. But there are many things I can do and I find joy in discovering new ways to enjoy the things I love, like books on tape, going to games in my wheelchair, drinking flavored sparkling waters instead of beers, volunteering when my symptoms allow on a flexible schedule instead of working 50 hours per week, resting and getting cozy when I need to! It’s not as easy as just deciding to change your mind. It takes constant work, noticing when I’m stuck in a negative cycle and reframing my thoughts. Depression isn’t a moral failure and it’s not a choice — it’s a normal part of grieving and part of the process of moving towards acceptance. 

Stage 5: Acceptance

Acceptance is being at peace with your life, chronic illness and all. I think of that warm feeling, laying on the beach, glowing in the sun, the sound of the waves calming me, with a soft smile on my face. That’s what acceptance feels like for me – everything feels nice, warm, peaceful, and happy. 

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Chronic Illness & the Stages of Grief. Stage 5: Acceptance 🌅 I always looked at my goal as remission. Then I realized chronic means chronic. Then I had a goal of acceptance. But that’s not so easy either. It’s not a pathway with an end goal and no going back. Like my first post, it’s a wheel that keeps on spinning and anything can set it in motion again. Being mindful of the changes helps me manage them easier and move towards acceptance quicker. 🌅 I am finding it easier to accept that my symptoms will always be fluctuating and that I need to adjust accordingly. My life has changed a lot. I can no longer work. Some days I am only awake for a few hours. I have a hard time cooking, cleaning, and shopping. I have had to make a lot of adjustments in order to be able to do things that used to be easy – like bathing. But I don’t wish for someone else’s body or someone else’s life. I accept my illness and appreciate what does work for me and what I can do. My body is working for me. My heart is beating (just way too rapidly sometimes), my lungs are breathing, my eyes are seeing, I am alive. 🌅 If grief is a cycle, it’s a vicious one. When my symptoms flare, I’m likely to fall back into the stages of anger and depression and when I’m angry or depressed, it’s likely to make my symptoms flare. If I’m at peace and accepting of my illness, my symptoms are less likely to flare, but it’s all so unpredictable. I used to think of all the things I could have done differently to prevent this, but there isn’t anything I could have done to control it. Knowing that it’s not under my control has helped me accept my illness and realize it's not my fault. I accept that I need to make adjustments and don't see them as restrictions. It's hard to release control when I've been type-A my whole life, but it's also like releasing your breath when you've been holding it for too long. The tension escapes and it just feels good to let go. 🌅 Acceptance is being at peace with your life, chronic illness and all. I think of that warm feeling, laying on a beach, glowing in the sun, the calming sound of waves crashing, with a soft smile on my face. What does acceptance look like for you?

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With chronic illness, you have to move through the anger and depression to get to acceptance. If you’re like me, you will go back and forth between the five stages many, many times. The stages aren’t linear, with acceptance as the end goal and you’ll never go back. It’s a wheel that keeps on spinning. When my symptoms flare, I’m going to end up back in one of the other stages of grief and that’s ok. I can tolerate my illness more when the symptoms are mild and I am more prone to anger or depression when my symptoms flare. As I’ve been working through these feelings, I have found myself spinning through those stages faster and landing on acceptance quicker. I am finding it easier to accept that my symptoms will always be fluctuating and that I need to adjust accordingly. My life has changed a lot. I can no longer work. Some days I am only awake for a few hours. I have a hard time cooking, cleaning, and shopping. I have had to make a lot of adjustments in order to be able to do things that used to be easy – like bathing. But I don’t wish for someone else’s body or someone else’s life. I accept my illness and appreciate what does work for me – getting a wheelchair so that I will be able to go shopping, using dry shampoo instead of washing my hair as often, doing IV treatments and drinking lots of water. My body is working for me. 

What acceptance looks like for me: 

  • Acceptance doesn’t mean giving up. It means working with my body instead of fighting against it. 
  • I find joy in the big picture – the people (and pets) who love me, the simple pleasures of life, the parts of my body that do work
  • I live well in the present, I don’t wish for the past or fear for the future
  • I connect with others who are living well with chronic illness
  • I recognize that my chronic illness is part of who I am but not all of who I am 
  • I recognize that acceptance may come and go. It will fluctuate just like my symptoms and I won’t berate myself when it goes. 

Why I have trouble with acceptance: 

  • My symptoms fluctuate and flare
  • Some doctors are not understanding or helpful with my conditions
  • My illness is progressive
  • I spent many years undiagnosed with no treatment and have low trust in doctors
  • I develop new symptoms and have no definitive treatment
  • I am exhausted and in pain all of the time
  • I can hardly function at home and am unable to work
  • I don’t know if I’ll ever improve
  • I feel like others don’t believe the severity of my symptoms 

If grief is a cycle, it’s a vicious one. When my symptoms flare, I’m likely to fall back into the stages of anger and depression and when I’m angry or depressed, it’s likely to make my symptoms flare. If I’m at peace and accepting of my illness, my symptoms are less likely to flare, but it’s all so unpredictable. I used to think that I could control my body by eating salads and protein, by exercising and stretching. I thought I could do anything if I worked hard enough. Then I worked so hard that I worked myself into a health crisis. I used to think of all the things I could have done differently to prevent this, but there isn’t anything I could have done to control it. Knowing that it’s all out of my control has helped me accept my illness. I listen to my body now rather than trying to train it. I rest when it tells me to rest. I give it water and food that it wants. I know that my symptoms will fluctuate and that there is nothing I can do to control them, but that I can monitor them and try to ease them. I accept that I need to make adjustments and I don’t see them as limitations. It’s hard to release control when I’ve been Type-A my whole life, but it’s also like releasing your breath when you’ve been holding it for too long. The tension just goes and it feels so good to just let it go. 

Believe Patients!

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Too often I see videos of my #ChronicallyIll friends crying in the car after leaving a doctors appointment, frustrated, angry, upset, and hopeless because they were ignored and invalidated yet again. I love that they show the raw reality of what often happens when you have #ChronicIllness but I hate that we have all experienced being ignored and invalidated by doctors when we just want an explanation and some help managing symptoms. 😥 We all grew up thinking that if something was wrong, we could go to the doctor, they would listen and provide treatment. This is not our reality. Healthy people sometimes can't imagine that this could be true and that adds to the disbelief and stigma that we face. I had no idea that it was possible to wake up sick one day and never get better. I had no idea that doctors would try to blame symptoms on my mental health, tell me that my labs were fine so I couldn't possibly be feeling fatigued, tell me that my pain couldn't be that bad and just to be concerned if it caused nausea and vomiting. I could go on and on. 😥 It has taken years of explaining symptoms and seeing doctors to find one that actually listens – and that's only available to me because of my privilege as a middle-class, white woman with decent health insurance. 3+ years for hypothyroidism (that clearly showed up on labs), 10+ years for endometriosis, I could go on. Not everyone has the resources to continue searching for one. I acknowledge my privilege and how it shapes the way I experience these issues and I would love to learn from any friends from marginalized groups about how your identities shape your experience. 😥 Patients that are more likely to be disbelieved and ignored are also more likely to not have access to other doctors for a second opinion or alternative treatments. Race, gender, social class, sexual orientation, other diagnoses, and many other factors (and their intersections)  are at play here. It needs to stop. 😥 Continued in comments:

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Too often I see videos of my chronically ill friends crying in the car after leaving a doctors appointment, frustrated, angry, upset, and hopeless because they were ignored and invalidated yet again. I love that they show the raw reality of what often happens when you have chronic illness but I hate that we have all experienced being ignored and invalidated by doctors when we just want an explanation and some help managing symptoms. 

We all grew up thinking that if something was wrong, we could go to the doctor, they would listen and provide treatment. This is not our reality. Healthy people sometimes can’t imagine that this could be true and that adds to the disbelief and stigma that we face. I had no idea that it was possible to wake up sick one day and never get better. I had no idea that doctors would try to blame symptoms on my mental health, tell me that my labs were fine so I couldn’t possibly be feeling fatigued, tell me that my pain couldn’t be that bad and just to be concerned if it caused nausea and vomiting. I could go on and on. 

It has taken years of explaining symptoms and seeing doctors to find one that actually listens – and that’s only available to me because of my privilege as a middle-class, white woman with decent health insurance. 3+ years for hypothyroidism (that clearly showed up on labs), 10+ years for endometriosis, I could go on. Not everyone has the resources to continue searching for one. I acknowledge my privilege and how it shapes the way I experience these issues and I would love to learn from any friends from marginalized groups about how your identities shape your experience.

Patients that are more likely to be disbelieved and ignored are also more likely to not have access to other doctors for a second opinion or alternative treatments. Race, gender, social class, sexual orientation, weight, other diagnoses, and many other factors (and their intersections)  are at play here. It needs to stop.  

All we ask is for someone to listen, BELIEVE US, and offer a possible explanation and treatment options to ease it manage the symptoms. We deserve to be heard and we deserve to be believed. It’s ridiculous that the doctor see my tears and frustration as confirmation that I’m hysterical, not that as a sign that they aren’t doing their job. 

If you are frustrated during a doctors appointment, let it be known. If you are feeling hopeless after being ignored yet again, let the tears flow. If you want to scream in the car, let it out. If you want to vent after experiencing this, drop a comment or message me on instagram @invisiblyillfox. We shouldn’t leave a doctors appointment feeling this way, but that’s on them, not on you. 

My Chronic Illness Origin Story

Looking back, I think that my chronic illness began when I was in college, back in 2009. It took me 9 years to be diagnosed with ME/CFS and 10 years to be diagnosed with endometriosis, but their origins were tied to one event. I am writing this as a stream of consciousness, getting it all out of my system, so excuse me if I ramble or go astray.

One night in college in the fall of 2009, I woke up with intense, stabbing pelvic pain. It felt as though I had my period and I was about to have diarrhea and that those two types of pains combined and took a bunch of steroids to amplify their effect. I had just started dating my husband and was unsure what I should do, or even if I should ask his opinion. I wondered if I should ask him to take me to the hospital or if I should wait to see how I felt in the morning. I didn’t think I was dying, just in massive pain, so I decided to wait until morning and avoid an ER visit. I didn’t want to worry anybody and I didn’t want to have to pay for an expensive ER visit.

The pain kept coming and going. I would be hit with that intense, stabbing feeling and it would gradually intensify and worsen for 15-30 seconds, then it would go away. When it hit, I couldn’t focus on anything else. I couldn’t breathe. I couldn’t see. Everything was eclipsed by the pain. It kept happening, so I went to the University Health Center. Now, looking back, I realize how dismissive they were of my pain, something that happens far too frequently for women. I was 21 years old and I didn’t know how to navigate the healthcare system on my own yet.

They asked me to rate my pain. I said at worst it’s a 9, but right now it’s a 3. The nurse replied, “If it was a 9, why didn’t you go to the hospital?” Me, being young and naive, interpreted this as, “You should have listened to your body and gone to the hospital, despite your worries about cost.” Now, I realize that her sarcastic tone meant, “You can’t be hurting that bad, you’re being dramatic.” I was hurting that bad and I wasn’t dramatic. And going to the hospital didn’t help either (but I’ll get to that later). They asked some basic questions, but sent me on my way, saying to go to the hospital if the pain came back.

The pain returned and my roommate took me to the hospital. We wore masks in the waiting room because there was an outbreak of swine flu and everyone else in the lobby seemed to be sick with the flu. At the hospital, they did an ultrasound and told me that I didn’t have any ovarian cysts. They told me it was gas pains and sent me home. I’ve had gas pains before. And I don’t hold in my farts, I let them rip (growing up with two brothers has some perks). It wasn’t gas pains.

The pain continued for two more days, so I went back to the University Health Center. They ordered a CT scan and said that there was inflammation in my abdomen and that I may have gotten some sort of bacterial infection. They gave me a shot in my butt and hoped it would help. I attributed my improvement to the shot at the time, but it wasn’t the shot. Four days had passed by this point and I had moved just enough in my cycle that the pain stopped. When the pain returned a few months later, in the same part of my cycle, I wasn’t afraid of it anymore, but I knew I wouldn’t get any answers from doctors, so I just turned on my heating pad and dealt with it.

I went back for a follow-up a week after the shot in the bum. I had a fever of 102. They said, “did you know that you have the flu?” I felt lethargic, but didn’t have the other typical flu symptoms. They wrote me a note and told me not to go to class, work, internship, or anywhere in public for a week. I never fully recovered from that flu and I think that was the trigger for my ME/CFS.

After that bout of flu, I never woke up feeling refreshed again. I remember what that felt like, but now the memories seem nostalgic, like remembering what it felt like to be a kid and wake up on Christmas morning.

I attributed it to overworking myself in college. I graduated with a 3.7 GPA while working and doing three different internships. My lowest GPA ever was during this semester that I fell ill and missed classes – it was a 3.0. I was taking a full course load, doing an internship with the Ravens three days a week (plus sometimes pulling all-nighters editing footage after games), and on top of that I was working about 20 hours per week as a tutor. Even with all of that, I still kept a very active (probably too active) social life, going to basketball games with friends and going out to the college bars. It seemed normal that I would be tired while doing all of that. One of my professors took notice and asked if I was ok one day after class. He said that he missed my active participation and implored me to “get some sleep, grab a red bull before class, and be ready.” But sleep and red bulls didn’t make me feel any better.

A photo my roommate took of me in college in 2009, when I was drinking a red bull while I walked into Starbucks to buy a coffee.

Fast forwarding through the next decade with highlights. I sprained my ankle and it seemed to worsen all of my symptoms in the spring semester following illness. I couldn’t return to my internship my final year in school, but I continued helping on game days. I couldn’t continue working, so I focused on my coursework. I took some time off after earning my degrees.

The GreenJackets squad after a game. I am in the black polo and grey shorts, fourth from the left.

I worked some for my mom’s company and then got a job in ticketing for a minor league baseball team. I moved to Georgia and worked an insane amount of hours for extremely measly pay. I was surrounded by wonderful people that made working fun. They would tease me for going home to take naps at lunch so that I could make it through the rest of a 14-hour day. I worked 80 out of 81 home games that season, often working 80-90 hour weeks when the team was playing at home. We’d go out to the bars on a Saturday night after a game and then wake up Sunday and keep working. I don’t know how I managed, but we had fun.

A group photo of the Maryland ticketing group. In the back row, six men and three women are standing. Two men are crouching down in front with helmets on. Everyone is wearing a black Maryland shirt for college colors week.

I missed home and applied to work in ticketing at my alma mater. I got the job and moved back to my college town to sell football and basketball tickets. The hours weren’t as long as baseball, the seasons weren’t as long, but the pay was just as measly. And I still got teased for going home at lunch to nap.

Me, speaking to an audience of premium ticket holders at an annual event at the Ravens training facility.

I continued working Sundays logging tape for the Ravens (still pulling the occasional all-nighter) and the timing worked out perfectly when a position opened in ticketing. I got my dream job, working for my favorite team. I continued working in a fast-paced environment and fatigue continued to plague me. At this point, I thought that I had a thyroid issue and that getting on thyroid medicine would fix it. It took me three years to finally find a doctor to test my thyroid levels, but she wouldn’t prescribe medication because she said that my TSH of 7 wasn’t high enough and I didn’t need to worry unless it was over 10. Then, I found an endocinologist who said TSH should ideally be around 2.5 but needs to be under 4.5. Thyroid issues are fairly common and it should not have been that hard to find routine medical care. For the next few years, I battled with that doctor when she asked about my symptoms and I continued complaining of fatigue even when my thyroid hormones were high. I cried in many doctor’s appointments, wondering why I couldn’t find any relief. But I kept pushing through until I couldn’t anymore. I worked in ticketing for the Ravens for 6 years until my health significantly declined and left me unable to fulfill my job responsibilities.

I believe that my ME/CFS was triggered by the swine flu virus that I contracted at the hospital in 2009. I wonder if I had gotten proper treatment at the health center, or if they had even considered endometriosis and offered that explanation, would I have avoided catching the virus and avoided becoming a person with ME. I don’t think so. I believe that my illness was caused by a combination of environmental triggers and maybe some genetic predisposition that caused a cumulative effect to get me where I am now.

I had the swine flu. At some point I contracted Epstein-Barr virus (mononucleosis) and was never treated for it. My immune system continues to reactive against EBV and retriggers viral symptoms. I sprained my ankle and didn’t have health insurance so I limped around for three months (this was maybe 9 months before the Affordable Care Act went into place and I would have been able to stay on my parent’s insurance, that’s my luck). I overworked myself and didn’t allow my body time to recover. I continued pushing through my symptoms in the fight for my career in sports. I lived in an apartment that was infested with black mold for months while I fought with the apartment company to waive the transfer fee and let me move units. I won that battle and got them to pay for a moving company after the apartment flooded and they ripped up the carpet to expose the mold. I broke my ankle and was misdiagnosed three times, again limping for months until someone found the fracture on a CT scan and I got surgery. I went back to walking 15,000 steps on a gameday after healing from surgery and woke up the next day with leg pain that has persisted since that day in August 2018. I went through two years of extreme stress at work, performing countless hours of emotional labor trying to make people understand why players on the team protested. I kept pushing through each of these things, setting deadlines for myself, like just get to July when you have time off and you’ll be ok. But I continued getting worse.

My ME symptoms are exacerbated by my menstrual cycle and my endometriosis symptoms. Now, I have my period for about a week, then I feel better for about a week, then I feel terrible again as the pain returns when I ovulate and the hormones change. Then my period comes and puts me in a crash. After that initial bout of pain, I complained of your standard endo symptoms at my check-up: pain in the abdomen, lower back and legs, extremely heavy periods, irregular periods, pain during sex, diarrhea every time I ovulate and every time I begin my period. None of the doctors thought that any of this was a problem until 2018. I was still in a boot from ankle surgery and she said, “sounds like endometriosis, but the only way to diagnose is surgery and there isn’t any treatment anyway.” That wasn’t encouraging and I really didn’t want to undergo another surgery. I got an IUD to see if it helped with the symptoms. It helped decrease the heavy bleeding, but the pain continued to worsen. She then referred me to a colleague who diagnosed me based on the symptoms. I have a laparoscopy scheduled later this month.

Over all of these years, my illnesses multiplied with new symptoms arising. Now, I have dysautonomia and cannot stand or walk for longer than about 10 minutes at a time. I get dizzy and my heart races as if I’m sprinting every time I stand up. My blood pressure is never regulated, it’s all over the map, high sometimes, and extremely low sometimes. I still push myself to do things that I know are too much, but sometimes it’s worth it. I have to live my life.

Me, sleeping in the car, trying to block out all light with a hat pulled over my eyes and sunglasses overtop of the hat, and trying to block all sound with noise-cancelling headphones on..

I can still participate in social activities, but only if I rest for days before and after. It takes me 2-3 days to recover from 3-4 hours of activity. I can’t manage more than 3-4 hours of activity per day. Whether that’s reading, writing, working, walking, grocery shopping, talking on the phone, etc. I can’t go outside in the sun or into a store with bright fluorescent lights without dark glasses on because of light sensitivity. I can only use apps that have dark mode on my phone. I can no longer shower because I can’t stand up long enough, but that’s ok because I like baths better anyway. I can only manage two or three baths a week though and I have to lay down afterwards. I never thought that I’d be exhausted just from washing my hair. I can’t drive anywhere that takes longer than 20 or 30 minutes. I lose the ability to focus and I have trouble holding my arms up to the wheel because of the fatigue.

The hardest symptoms I experience are the cognitive difficulties. I used to be so smart. I picked up on new things so easily. I was very good at organizing and streamlining processes. I was extremely efficient, quick to complete tasks, and an expert multi-tasker. I could think quickly on my feet and come up with great responses on the fly during difficult conversations. These traits are the reason why I was able to cope with my illness for so long without letting on that I was unwell. I can’t do any of that anymore and I feel like I have lost my identity.

I was always the smart one in my family while my brothers were the athletic ones. I was always the leader in a group project in school. I was always the most efficient worker, always multitasking and doing everything myself. I was always the responsible one, put in charge of planning things. Most of my friends and family still try to get me to fulfill this role and it’s so difficult now. I often mess things up.

Sometimes I feel like the words are in my brain, but I can’t make the connection to my mouth to voice them. I substitute similar words that don’t have the same meaning. I completely miss words when typing a sentence. I stare for too many moments after someone says something to me, because it takes longer for my brain to process the sentence and form a response. Sometimes people think that I’m not listening to them because of this. I am listening, I’m just slower now. Sometimes I forget the word and describe it in an odd way. For example, “that thing in front of the house where people sit and drink iced tea,” is how I expressed the word, “porch.” I try to read and learn about my illness, but I have to read my doctor’s notes ten to fifteen times and still can’t fully understand them. I am still motivated to do so much, but my brain and my body can’t keep up.

On average, I sleep for 9-12 hours at night. One time I slept for 18 hours straight. A bad night for me is 6-7 hours. If I have anything less than 9, I’ll need a nap during the day. My naps are usually 2-4 hours long. When I do wake up, I feel so much worse than when I went to sleep. It’s like I have to pull my consciousness out of molasses every morning. It’s like sleep is quicksand and the harder I try to get out of it, the faster it pulls me under. But that’s only in the morning. At night, I often can’t fall asleep due to pain and a wandering, wondering mind. As a result, I only have about 6-8 usable hours in the day.

When I say usable hours, I mean hours where I am functional enough to do anything. Not that I can do anything during that time. I only have about 1-2 hours where I can do physical activity, like standing at the dog park or walking around the grocery store. I will crash and fall asleep after those activities. Even vegging out activities take up a lot of energy for me – I have to limit my binge-watching time and social media scrolling time. I can read, but only for about an hour before my brain starts having trouble absorbing content. I often don’t have the energy to feed myself and it’s very frustrating when people tell me, “You look good, you’ve lost so much weight,” because it’s caused by illness.

Making decisions has become extremely difficult. When it comes to eating, I don’t have the energy to complete a meal from the start: 1, deciding what to eat, 2. shopping for the ingredients, 3. preparing it and cooking it. I rely on my husband to help, or we use a meal service kit to make the decision and provide the ingredients, or we order food.

Working is now impossible. I took short-term disability and FMLA leave during the summer. I tried building back up to being able to work, but was never able to get in more than 15 hours in a week. Now, I am a professional patient, because that’s all I have the energy to do. When I have a doctor’s appointment, I almost always crash when I get home and need to nap. I try to always have a rest day between appointments, but that’s not always doable.

I have tried countless treatments. Some didn’t help. Some did, but they won’t cure me, they just make my symptoms more tolerable. I’ve accepted that my illness is chronic and I will never be cured. I don’t see that as pessimism. It’s important to recognize that my illness will always be there. I may go into remission, but I will always need to be mindful of causing another crash or relapse. Even though I’m chronically ill, I am actually chronically thinking about my wellness and working towards it!

Me and my husband on a trip to Iceland.

Before I woke up in the middle of the night with the pelvic pain that I know so well now, if you had told me this is how I would end up, I probably would have been horrified. What would that young woman think if she knew that she would study and work for 13 years towards a career in sports, just to have to give up her dream. She probably wouldn’t believe it if I told her that she would go to work a game one day, wake up with leg pain the next morning, and that the pain would be there every single day afterwards. What would she think if she couldn’t go to a basketball game and football game after going to dozens of games each year. That she would have to skip birthday parties, bachelorette parties, games, concerts, even just dinner with friends because she would often not be well enough to attend. I think part of her knew that she had to cram in as much as she could possibly muster. She went to birthday parties even when she had to leave at 5 am for her internship the next day. She bought tickets for three shows in the same tour so that she could see her favorite singers. She went to countless sporting events and never turned down invitations from friends. She traveled the world and walked through new cities rather than getting an uber because she wanted to explore while she still could.

Me on the couch, with my dog Titus at my side and my cat, Buster perched on my legs, keeping me resting.

Even now that the young girl who didn’t know what was wrong is gone, I can still be thankful for this journey. I don’t have to be thankful for my illness; I hate it so much and I don’t want to be your inspiration. I would give my voice to a sea witch if she could rid me of my illness. But if that girl knew all of these great things she would do and great things she would have, she would be happy, as I am now. Now I know that the guy she just met would stick by her side for the next 10 years (and hopefully forever). I’m glad young me recognized that he would always take care of me, just like that first time I got sick and he brought me honey and soup during that flu. I know that the sleepless nights I spent with my puppy and hours I spent training him would give me a constant companion who sticks by my side when I’m stuck in bed. I know that the cat I got to help with my loneliness when I moved to a new city with no friends would be a gauge for my flares. If Buster lays on my legs, do not get up. He knows when I need to rest and forces me to do it. If she knew all of the countries she would visit and experiences she would have, she would be grateful. If she knew that she would work for her favorite team and be able to share that sense of community and joy with so many other football fans, she would be happy, no matter how long it lasted.

One day last spring, I was exhausted while driving and was on autopilot. All of a sudden, I noticed the trees and the full, lush, green leaves. I remembered the bony brown limbs that were jutting in every direction all winter, but I never noticed when buds formed and life returned. Now, it was all around me. I couldn’t notice anything around me because I was so consumed with one thing – work. I couldn’t focus on my health or my family or my home or my hobbies. I was drowning at work as well. I realized that I needed to take notice of what was going on within my body and around me. Now, I make an effort to notice the changes in the trees, the migrating birds, the subtle changes in the air when the temperature changes. I appreciate the world more now that my participation in it is limited. I’ve learned that I love being able to slow down and I don’t need to be on the go all the time.

I’m still a work in progress. My illness still leaves me with many unanswered questions. But I am now equipped with tools, support, and a community to help me manage. I continue to rack up diagnoses, but am no closer to being cured. I’m ok with that and will continue trying new things to make my symptoms more manageable and tolerable. I am a person with myalgic encephalomyelitis, endometriosis, dysautonomia, postural orthostatic tachycardia syndrome, orthostatic hypotension, fibromyalgia, hashimoto’s thyroiditis, hypothyroidism, depression, anxiety, Raynaud’s syndrome, and autoimmune disease. But I am also so much more than my diagnoses and my symptoms. I’m a professional patient, no longer a career woman, but I was always so much more than my occupation. I am a wife, daughter, sister, friend, and pet-mom, but I was always much more than the relationships that surround me. I’m a Maryland girl, but I am also a world citizen. My illness takes up a lot of space in my world, but there is still space for so much more.

An Open Letter to Dr. Koroshetz – The NIH Response is #NotEnough4ME

Sign & Share the petition here: https://act.meaction.net/page/13656/petition/1?chain&ea.tracking.id=web
My video response to Dr. Koroshetz’s letter.

I have myalgic encephalomyelitis, more easily known as ME.

Dr. Koroshetz – this is my response to your letter to ME action regarding the NIH’s failure to provide real, meaningful funding and action for ME.

The NIH is failing people with ME. Your response to ME Action’s demands isn’t enough.

I used to work in a fast-paced career that I loved. ME has taken that from me. I used to travel and walk around new cities for hours. ME has taken that from me. Now I’m confined to my bed and my couch. It takes me days of rest to build up the energy for an outing and then days of rest to recover. Most of these outings are to doctor’s appointments where I’m not making any forward progress and my ME symptoms are progressing.

I miss my family. I miss my friends. I miss being able to walk. I miss going shopping. I miss being able to read and learn new things and use my brain. I miss going to work. They miss me. The only one who might be happy about this illness is my dog, who never leaves my side.

And still I am thankful because I am better off than many other patients. There are millions of us, suffering needlessly and the NIH is not doing enough. I live in constant fear that one small thing I do will trigger an increase in severity of my symptoms. And because you aren’t doing enough for us, I think that is much more likely than a reduction in my symptoms.

In your letter, you say:

“We will prioritize and coordinate the implementation of the strategies that were outlined in the [working group] report a quickly as possible.”

  • How are you going to do that without sufficient funding?

“To increase funding in this field, there must be an increase in the number of investigators doing research on ME/CFS and the number of meritorious research applications submitted to NIH.”

  • The opposite is true. The number of researchers is declining because you are refusing to fund them

“We have previously encouraged advocacy organizations to take a rold in research by funding pilot, or seed, grants, which can serve as the basis of applications to NIH.”

  • We have been doing that for years.
  • This is the only way we have seen any progress.
  • We’re advocating and raising money from our beds, providing hours, weeks, years of unpaid, emotional labor because you refuse to do what you are actually paid and expected to do.

“We agree that identifying biomarkers will be critical to advancing the field and helping move toward clinical trials.”

  • How are you going to find biomarkers if there isn’t appropriate funding for ME?
  • You are leaving it up to us to fund research, but even if that does yield a biomarker, how are we supposed to believe that you will then change your tune?
  • You will just come up with more excuses and move on and say that funding clinical trials will be left up to us.

“A concern in ME/CFS research is the heterogeneity and variability in the way data has been collected, the small number of cohorts, and the lack of transparency in reporting the clinical characteristics of the study participants.”

  • How can you possibly address that without an increase in funding?
  • This is an effect of being forced to fund our own research through advocacy.

The mission of the NIH is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lenghten life, and reduce illness and disability.”

  • This is where you are failing us most. You are reducing our health, shortening our lives, and increasing our illness and disability because you are not doing enough for ME.

Using the disability adjusted life year measure (DALY) from the World Health Organization, ME is estimated to have a higher burden than HIV/AIDS, MS, Parkinson’s Disease, Brain Cancer and many more debilitating illnesses.

Source: https://usawg.files.wordpress.com/2018/09/funding_burden_graphs_o_text.pdf

When you compare the disease burden to the funding received, ME is grossly underfunded, even when compared to other underfunded diseases. ME is the most underfunded disease in the NIH portfolio, relative to disease burden.

Source: https://usawg.files.wordpress.com/2018/09/funding_burden_graphs_o_text.pdf

I also compared the 2020 funding numbers to DALY scores and the trend continues. Many diseases cluster near the bottom left (these were removed), but few have such a high DALY and such low funding. The few diseases with higher DALY scores receive much higher levels of funding.

Data Sources: https://www.researchgate.net/profile/Leonard_Jason/publication/312027462_Estimating_the_disease_burden_of_MECFS_in_the_United_States_and_its_relation_to_research_funding/links/586a72d608ae329d62101b11.pdf
https://report.nih.gov/info_disease_burden.aspx
https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full#B26

If the NIH were to fairly fund ME based on a model that uses the DALY score, we would need between $175M – $190M in additional funding. On the low end of the estimate, you are providing 7% of the funding that is needed relative to the disease burden.

Data Sources: https://www.researchgate.net/profile/Leonard_Jason/publication/312027462_Estimating_the_disease_burden_of_MECFS_in_the_United_States_and_its_relation_to_research_funding/links/586a72d608ae329d62101b11.pdf
https://report.nih.gov/info_disease_burden.aspx
https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full#B26

This is not a rare disease. There are millions of us. You are only spending $12 per patient. How is that going to have an impact?

The worst way in which you have failed us is by taking away our hope. We continue to advocate adn volunteer from our beds, but we can’t do it alone and you are refusing to help us.

A 2016 study estimated that suicide rates among ME patients are 17-18 times the national average. Depression is 6 times. People are dying of this disease and you aren’t doing enough. Their deaths aren’t even properly attributed to ME when suicide happens. These deaths are entirely preventable.

You can do something about this crisis. Just a little bit of hope can help us manage our illness and disability. But right now, we are hopeless – as we have been for decades – because the NIH is failing us. More and more people are falling ill with ME and we are becoming sicker and more disabled by this illness.

So please, I beg you. Do something. Fund the research. So we can end this health crisis. We won’t stop until our demands are met.

Please Sign & Share the #MEAction Petition Here: https://act.meaction.net/page/13656/peti

What do I know about pain?

Pain is subjective. 

Pain is measured on a scale of 1 – 10 when you go to the doctor. 

Pain isn’t always taken seriously. 

Pain is frustrating. 

Pain can be described in many different ways: throbbing, deep, burning, aching, chronic, acute, debilitating, sharp, dull. 

Everybody experiences pain. If you don’t you could seriously hurt yourself. For something that we all encounter, why do we have such a hard time understanding pain?

For something that we all encounter, why do we have such a hard time understanding pain?

I have difficulty describing pain in a way that other people understand and believe. When my hands are cold, I can touch my friend and they can feel the temperature. I can’t hand them my pain to feel for a few seconds before they hand it back. 

Sometimes I wonder what would happen if it were possible to hand your pain over to someone else for a minute, for them to experience. Would I want to inflict this pain on a friend or family member, even for just a few seconds? Maybe it’s selfish, but I would. After all, if I can carry this pain with me every day, they can withstand a few moments with it. 

Would I want to inflict this pain on a friend or family member, even for just a few seconds? Maybe it’s selfish, but I would.

I do feel guilty wishing for this, only because I know that I have had practice with pain. If I were to hand it over to someone inexperienced, they wouldn’t know how to handle it. I don’t think that I have a high pain tolerance – I know when things hurt very badly – I just have learned to wait for it to pass and not let it show. 

I’m sure many people with chronic illness can relate to this – feeling something and not letting it show on the outside. We often look very well. When others would grimace or cry out in pain, we are stoic, even smiling. 

I want to share a story where this ability to look calm when in pain caused more damage to my body. This is a story about how I looked fine and acted fine, when things were very very bad. So many doctors have minimized and trivialized my pain and I followed their lead. This is a story about how I initially minimized a severe injury. This is also a story about how that hardship has taught me to be mindful of physical pain, express that pain and advocate for myself. 

So many doctors have minimized and trivialized my pain and I followed their lead.

Some background information, before we dive in. I have had many injuries. I’ve broken both ankles, both elbows, and one wrist. I’ve sprained both ankles multiples times, sprained my knee, and sprained the other wrist. I broke both arms at the same time (pictured) and waited for about 16 hours before deciding to go to the doctor. I sought treatment for chronic neck and back pain for years. I sought treatment for debilitating menstrual pain for years (and I’m still seeking it). My ankle sprains took months to heal on two separate occasions. Doctors treated me as if I were exaggerating or even lying, so I thought that maybe I just couldn’t handle pain as well as other people and that maybe nothing was really wrong. Spoiler alert: I was wrong. 

From left to right, my husband Andrew, Whitney (me), and my friends, Denee, Jen, and Alex in Thingvellir National Park in Iceland (one of the the filming locations for Game of Thrones).

In the summer of 2017 I took a trip with four friends to Iceland, England, and Scotland. We crammed a lot of beautiful sites into a few days. At that time, I was experiencing symptoms of chronic fatigue and chronic pain, but I didn’t have a diagnosis or a doctor that believed me. I pushed myself pretty hard to go on hikes, go out for drinks, and cram as much as I could into each day. 

We packed A LOT of fun into our trip. On day 13 of the trip, we reached the Isle of Skye in Scotland. The weather was perfect, with the sun shining, the sky was clear and blue, the ground was lush and green. We’d heard of midges swarming in the summer, but didn’t have any in our way. We dropped our bags off at the hostel and immediately got back in the car to find more excuses to be outside. 

Enter the Old Man of Storr.

The Old Man of Storr rock formation in Scotland.

It was the 13th day of our trip and I continued pressing on, despite my fatigue. It was easy to ignore my distress when I could look all around me and see such beauty. We parked the car and started the trek up to see the Old Man. 

The legend says that a giant was buried there and the massive rock formation is his thumb protruding from his grave. There is a grouping of massive stone formations (called the Storr)  jutting from the hillside, surrounding the Old Man, who looms above them all. You can see the stones looming from the base of the hillside and they just keep getting larger and larger as you walk the 45 minutes to the base of the formations. It seems unfathomable that people have actually climbed the face of the Old Man and stood at the top. 

With all of the wonder and mythology surrounding the stones, the view of the view of Loch Leathan and the sea were even more magical. We continued our hike in order to see the Storr against the backdrop of the sea. We were not disappointed. 

My husband Andrew and I took a photo at the top of our hike, just before starting our descent back to the car. The old man of Storr is in the background to the right.

We rested at the top and then began our descent. I was excited to get back to the car and see what other dreamy sights lay in store for us. We were all walking downhill at a brisk pace. I took a step forward and as I shifted my weight onto the front foot, I slipped on the gravel pathway. My front foot continued sliding forward, while my back ankle rolled in and I landed with it beneath my bum. I didn’t think much of it when it happened, except that I needed someone to lift me up in order to untangle my leg from beneath me. An older couple looked shaken and asked if I was okay, but I smiled back, reassured them, and then my husband ran over to lift me to my feet and I kept walking. 

My friends asked if I was ok and I said I was fine. That’s what I’m used to saying. I kept walking and it kept hurting. I was worried, being in another country without cell phone service and not understanding how the medical system worked, but I knew I just had to get back to the car. 

Whitney gives a thumbs up and shows a bag of frozen peas tied to her foot with plastic bags.

My friends were waiting at the car for my husband and I to make the slow descent. I walked for about 45 minutes with my ankle hurting. When we got to the car I said, “I think I broke it,” in almost a joking manner. My friends thought I was kidding because of my light tone, but I wasn’t. Listening to their advice, I put my ankle up on the dash and waited to see if there would be any improvement. My husband stopped and got frozen peas to ice my ankle and I still managed to smile in the car with my foot wrapped in vegetables. 

We dropped my friends off so that they could pick up their car and continue on their way. My husband found a doctor’s office, but we were in a small town with no x-ray. The doctor thought it was a sprain, wrapped it in a compression sock and sent me on my way after laughing when I asked if I needed to pay. (This was the highlight of my medical experience – receiving attentive care at no cost). 

So, looking back, the first part of this story sounds pretty crazy. Hiking for 45 minutes on a sprained ankle. Just wait. 

We had 2 more full days left in the trip and I smiled through the pain the entire time.  The next day, I walked to the fairy pools, which was about a mile each way, using hiking poles. A young boy saw me struggling and yelled, “you’re superwoman!” Yeah, I kinda am! 

Whitney smiles while using walking sticks to hike back from the fairy pools. She is wearing a compression sock on her left leg.
Whitney uses crutches to make her way around London with a broken ankle.

The next day, we were back in London for one more day before we flew home – it was also my 29th birthday. I got crutches and walked around the Tower of London. As I was gazing at some pretty spectacular diamonds, someone pushed past me and stepped on my swollen foot. I didn’t cry out, despite excruciating pain. Despite my fake smiles, the puffy, wincing eyes show my pain. 

Denee, Whitney (me), and Andrew visit the Tower of London.

I made it back to the states and saw another doctor after I landed for an x-ray. Then after two more weeks with no improvement, I saw another doctor. Both said sprain. When I saw these doctors, they asked me to rate my pain on a scale of 1-10 and I said 6-8 depending on the day. I was in a boot for three months and my foot wasn’t healing. 

An x-ray of Whitney’s ankle after surgery.

Finally, I saw a third doctor who did an MRI and CT scan. We found that the ligament had pulled on the bone so hard, that a fragment of bone had detached and was floating in my ankle. I had surgery in November to remove the bone fragment, repair three ligaments, and install a plate and pins to stabilize the joint. 

Part of me is proud that I withstood that pain for months and months and nobody knew exactly how bad the injury actually was. Part of me thinks that I’m an idiot for staying calm instead of crying and screaming every chance I got – maybe that would have made people understand what I was going through and the amount of pain I felt. Part of me thinks it doesn’t matter how I behaved or how I looked, because pain (particularly women’s pain) is never taken seriously anyway. 

We can express our pain emotionally by crying, moaning, or yelling out, but we’re seen as hysterical. We can remain calm and stoic, but then the pain can’t really be that bad. How do we communicate pain in a meaningful way?

How do we communicate pain in a meaningful way?

Sometimes I use this injury as a basis for comparison. Everyone knows a broken bone is supposed to hurt. Somehow, I found that pain more manageable than my menstrual pain. When I was walking around in London,with a broken and sprained ankle, I thought to myself, “this injury can’t be that bad, it doesn’t hurt as bad a my period cramps.”  I found that pain more manageable than my fibromyalgia pain. I continued walking around on a broken ankle, but some days I can’t turn my head because of neck pain. Some days I can’t drive because of back pain. Some days I can’t take my dog for a walk because of leg pain. Some days I can’t look at my phone because of light sensitivity and eye pain. Some days I can’t hold my phone or text because of joint pain in my wrists and fingers. 

The worst part is – I had no idea how bad my chronic pain really was until I sustained that injury and I had to see four doctors before I received appropriate care. I received a diagnosis of fibromyalgia about a year after the surgery because I kept complaining of muscle pain in my legs. I first attributed it to deconditioning and getting back in shape, but it has never gone away, and it’s now been more than two years since my ankle injury.

The best part is- this injury gave me experience navigating multiple doctors until I finally received a correct diagnosis and the care that I needed. I know that my pain is valid and I know that I deserve a provider that will help me find treatment and manage my pain.

We need a better language to describe pain and we need doctors to believe us when we describe our pain. There’s a lot about my experience that I want to unpack and I can’t untangle the threads. Why did it take so long for me to get what should have been an easy diagnosis of a broken bone? Why didn’t I believe my own pain was bad enough, just because I had other pain that was worse? What else is wrong with me since these other types of pain are worse than a broken bone? When you’re in pain all the time, what warrants a doctors visit? 

We need a better language to describe pain and we need doctors to believe us when we describe our pain

I don’t have the answers. Maybe there isn’t one right answer, but many possibilities. For now, I just want a better way to communicate my pain to my doctors, friends and family so that I can finally find some relief from the pain.

In My Head – How Dumbledore Helped Me Accept Chronic Illness

“Is this real? Or has this been happening inside my head?”

“Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?”

Harry Potter & Albus Dumbledore
Harry Potter and the Deathly Hallows by J.K. Rowling

Lately, I’ve been thinking about this exchange between Harry and Dumbledore in Harry Potter and the Deathly Hallows. In this chapter, Harry has chosen to die and meets Dumbledore at King’s Cross Station, where he learns more about his connection to Voldemort. Harry chooses to board a train and return and he wakes up in the forest, just after this exchange. I think that when J.K. Rowling wrote this dialogue, she was reaching out to her readers to acknowledge the impact that this story and these characters had on her and on her readers. When you have an invisible illness, you often hear, “it’s all in your head.” But like Dumbledore said, why on earth should that mean that it is not real?

What bothers me most about the saying, “it’s all in your head,” is that it’s intended to minimize symptoms and place blame on the individual for not getting better. Saying “it’s all in your head,” implies that the physical symptoms are not real. The pain you feel is not real, it’s a figment of your imagination. The debilitating fatigue isn’t real, it’s a lack of motivation. If it’s in your head, it’s under your control.

This is simply not true. Not only is it false, it’s very harmful and upsetting to someone struggling with chronic illness. Our symptoms and our illness are not under our control, despite our intense, constant efforts to manage our illness.

Harry pits the two options as being opposite. If something is going on inside your head, then it must not be real. If that were the case, would anything be real? Your consciousness cannot leave your physical being, so are you real or are you just in your head? It’s a stupid saying when you think of it literally.

Looking at it literally, isn’t everything we experience happening inside our head? Our brain processes every external stimulus we face. That’s how we experience the world around us. Our brain processes pain, language, sound, smells, emotion, the passage of time, the list could go on and on and on. Even things that can’t be mentally controlled, like heart rate, blood pressure, and digestion, are technically controlled “in your head.”

The autonomic nervous system consists of the brain, spinal cord and nerves and is controlled by areas deep in the brain stem. This part of our brain is not under our control. This is why someone with a terrible head injury can be alive and breathing in a vegetative state. The brain stem is constantly shifting between the sympathetic “fight-or-flight” state and the parasympathetic “rest-and-digest” state. In the colloquial sense, physical responses like an increased heart rate or dilated pupils would not be considered to be “in your head,” but the reality is, they are initiated in the brain stem and are out of your mental control.

The disconnect comes from the belief that things are under our control if they’re in our head and they’re out of our control if they’re in our body. The saying “it’s all in your head,” is an idiom. The meaning of the saying is not discernible from the individual words. Yes, it’s in your head, but that’s not what they’re saying. They’re saying that it’s not real. That you can’t possibly be feeling those symptoms. That you’re making things up.

The saying also refuses to define what “it” is. My fibromyalgia pain is all in my head. My exhaustion and debilitating fatigue from ME/CFS is all in my head. My dizziness and elevated heart rate from POTS is all in my head. My illness is weakness and it is all in my head.

By defining what IS in your head, it sounds much harsher, right? Yet, we allow friends, family, doctors, to diminish our experience by saying “it’s all in your head,” without asking them exactly what they mean or what “it” is that is in our head.  

I always think of a better response or comeback long after a conversation has ended. I ruminate on interactions and wish I had handled them better. Here’s a list of things I want to say next time someone tells me “it’s all in your head.”

  • What do you mean?
    • Nice and simple. Make them say what they really mean instead of using this idiom.
  • What is in my head?
    • Make them define which symptoms or aspects of your illness are not legitimate to them.
  • Why is it in my head and not anywhere else?
    • Make them explain why they don’t believe you.
  • What is the alternative to being in my head and why do you think it’s not there?
    • Make them see that the saying is stupid.
  • Of course it’s in my head, but why would that make it not real?
    • Dumbledore’s wisdom and his response to Harry shows that being “in your head” is not the opposite of being real.

At the root of it all, I just want to be believed. But even if they don’t believe me, that doesn’t make my experience any less real. My chronic illness is real and my symptoms are real, even if you can’t see them. I want to feel better and I am doing everything I can to feel better, but it’s not simply about my choices and actions.

ME/CFS isn’t just being tired. I’m not lazy, bedbound and sleeping 12 hours without feeling rested because I want to. I am taking supplements, resting, stretching, and pacing myself to improve my symptoms.

Fibromyalgia isn’t just a low pain tolerance. I’m not inventing pain in my legs or my back. I am stretching, meditating, doing tai chi, doing acupuncture and taking medicine to alleviate my symptoms, but they’re still there.

POTS has measurable physical effects like changes in blood pressure and heart rate and is still treated like it’s “all in your head.” I take medicine, monitor my heart rate and blood pressure throughout the day, wear compression socks, avoid heat and recline or lay down whenever possible.

I didn’t choose to become ill and I can’t simply choose to become well. If illness and wellness were simply a choice, like you imply when you say it’s all in your head, we wouldn’t be ill at all. Like Dumbledore says, even if my pain or my fatigue can’t be measured and is considered to be in my head, that doesn’t make it any less real.

In My Head – How Dumbledore Helped Me Accept Chronic Illness

“Is this real? Or has this been happening inside my head?”

“Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?”

Harry Potter & Albus Dumbledore
Harry Potter and the Deathly Hallows by J.K. Rowling

Lately, I’ve been thinking about this exchange between Harry and Dumbledore in Harry Potter and the Deathly Hallows. In this chapter, Harry has chosen to die and meets Dumbledore at King’s Cross Station, where he learns more about his connection to Voldemort. Harry chooses to board a train and return and he wakes up in the forest, just after this exchange. I think that when J.K. Rowling wrote this dialogue, she was reaching out to her readers to acknowledge the impact that this story and these characters had on her and on her readers. When you have an invisible illness, you often hear, “it’s all in your head.” But like Dumbledore said, why on earth should that mean that it is not real?

What bothers me most about the saying, “it’s all in your head,” is that it’s intended to minimize symptoms and place blame on the individual for not getting better. Saying “it’s all in your head,” implies that the physical symptoms are not real. The pain you feel is not real, it’s a figment of your imagination. The debilitating fatigue isn’t real, it’s a lack of motivation. If it’s in your head, it’s under your control.

This is simply not true. Not only is it false, it’s very harmful and upsetting to someone struggling with chronic illness. Our symptoms and our illness are not under our control, despite our intense, constant efforts to manage our illness.

Harry pits the two options as being opposite. If something is going on inside your head, then it must not be real. If that were the case, would anything be real? Your consciousness cannot leave your physical being, so are you real or are you just in your head? It’s a stupid saying when you think of it literally.

Looking at it literally, isn’t everything we experience happening inside our head? Our brain processes every external stimulus we face. That’s how we experience the world around us. Our brain processes pain, language, sound, smells, emotion, the passage of time, the list could go on and on and on. Even things that can’t be mentally controlled, like heart rate, blood pressure, and digestion, are technically controlled “in your head.”

The autonomic nervous system consists of the brain, spinal cord and nerves and is controlled by areas deep in the brain stem. This part of our brain is not under our control. This is why someone with a terrible head injury can be alive and breathing in a vegetative state. The brain stem is constantly shifting between the sympathetic “fight-or-flight” state and the parasympathetic “rest-and-digest” state. In the colloquial sense, physical responses like an increased heart rate or dilated pupils would not be considered to be “in your head,” but the reality is, they are initiated in the brain stem and are out of your mental control.

The disconnect comes from the belief that things are under our control if they’re in our head and they’re out of our control if they’re in our body. The saying “it’s all in your head,” is an idiom. The meaning of the saying is not discernible from the individual words. Yes, it’s in your head, but that’s not what they’re saying. They’re saying that it’s not real. That you can’t possibly be feeling those symptoms. That you’re making things up.

The saying also refuses to define what “it” is. My fibromyalgia pain is all in my head. My exhaustion and debilitating fatigue from ME/CFS is all in my head. My dizziness and elevated heart rate from POTS is all in my head. My illness is weakness and it is all in my head.

By defining what IS in your head, it sounds much harsher, right? Yet, we allow friends, family, doctors, to diminish our experience by saying “it’s all in your head,” without asking them exactly what they mean or what “it” is that is in our head.  

I always think of a better response or comeback long after a conversation has ended. I ruminate on interactions and wish I had handled them better. Here’s a list of things I want to say next time someone tells me “it’s all in your head.”

  • What do you mean?
    • Nice and simple. Make them say what they really mean instead of using this idiom.
  • What is in my head?
    • Make them define which symptoms or aspects of your illness are not legitimate to them.
  • Why is it in my head and not anywhere else?
    • Make them explain why they don’t believe you.
  • What is the alternative to being in my head and why do you think it’s not there?
    • Make them see that the saying is stupid.
  • Of course it’s in my head, but why would that make it not real?
    • Dumbledore’s wisdom and his response to Harry shows that being “in your head” is not the opposite of being real.

At the root of it all, I just want to be believed. My chronic illness is real and my symptoms are real, even if you can’t see them. I want to feel better and I am doing everything I can to feel better, but it’s not simply about my choices and actions.

ME/CFS isn’t just being tired. I’m not lazy, bedbound and sleeping 12 hours without feeling rested because I want to. I am taking supplements, resting, stretching, and pacing myself to improve my symptoms.

Fibromyalgia isn’t just a low pain tolerance. I’m not inventing pain in my legs or my back. I am stretching, meditating, doing tai chi, doing acupuncture and taking medicine to alleviate my symptoms, but they’re still there.

POTS has measurable physical effects like changes in blood pressure and heart rate and is still treated like it’s “all in your head.” I take medicine, monitor my heart rate and blood pressure throughout the day, wear compression socks, avoid heat and recline or lay down whenever possible.

I didn’t choose to become ill and I can’t simply choose to become well. If illness and wellness were simply a choice, like you imply when you say it’s all in your head, we wouldn’t be ill at all. Like Dumbledore says, even if my pain or my fatigue can’t be measured and is considered to be in my head, that doesn’t make it any less real.

An Introduction to ME and me!

My name is Whitney Fox. I have myalgic encephalomyelitis and I want to talk about it.  

It’s a big word. It’s difficult to understand, whether I’m trying to pronounce it or manage it. I just think, myalgic enceph≈≈≈≈≈≈≈≈≈itis. It’s myalgic encephƣƪƱɯˠɝɭȋʧϨ.

For now, we’ll call it ME.

That’s “em – ee,” the first letter of each word. Not ME like I’m really excited to talk about myself. Sidebar: I guess since I’m starting a blog, that means I actually am excited to talk about ME!

The defining symptom of ME is post-exertional malaise. This means that after minimal activity, I am often left bed-bound and sleeping for hours. No matter how long I sleep, I never wake up feeling refreshed and often feel worse than I did before falling asleep.

It’s more than just being tired. It’s the kind of exhaustion that doesn’t get better with rest and sleep. Where you wake up with no idea where you are or what time it is. Like jet lag after an overnight flight and a time change. Or like the crashing feeling after you finished pulling an all-nighter to study, finished your exams, and finished your shift at work. It’s a new kind of tired that makes it so that I can’t function they way I did before – mentally, physically, and emotionally.

There is an easier name for ME. It’s also referred to as chronic fatigue syndrome. Chronic – it is constantly recurring. Fatigue – it is extreme tiredness. But that name has a bit of a stigma, doesn’t it? That’s why I prefer to call it ME or ME/CFS.

I want you to take me seriously, believe me when I share my symptoms, and respect this diagnosis. According to the patient advocacy group #MEAction, 75% of those affected are unable to work and 25% are homebound and bedridden. It is very serious and debilitating illness that does not receive the funding and research that patients deserve.

My goal with this blog is to connect with others who have chronic illness so that we can celebrate and commiserate. I also want to spread knowledge of my chronic illnesses to those of you that don’t have them, so that you might understand what we go through on a daily basis.

As I learn to adjust to my illness, I hope that you’ll be understanding. I will complain, so if you want to listen, thanks for letting me vent. I will also find things to improve and I hope you’ll celebrate with me and share my happiness. I am a highly-motivated, Type-A perfectionist, so adjusting to my illness and managing my symptoms is difficult.

The first step is taking myself seriously. As of today, September 17, 2019, I have been experiencing these symptoms for more than 8 years. I received a diagnosis in late-2018. Months later, I have finally stopped googling symptoms trying to find anything else that might be causing my symptoms – something that’s easier to treat, with a known cause, and less stigma. Something that isn’t chronic and won’t be lifelong. Now, I have accepted my diagnosis. I’m going to treat myself with kindness. I’m not going to blame myself because I am not my illness.

I hope you will treat me this way too. It’s going to be hard for me to maintain, so I understand that it might be difficult for you too. I hope I can just ramble through a bunch of metaphors, get it off my chest, and know that somebody understands and thinks it sucks and is on my side.

In this blog, I’ll talk about my symptoms and ways I am treating them. I’ll try new things and complain when I fail and celebrate when I succeed. I’ll talk about my journey with ME/CFS and my other diagnoses – hypothyroidism, autoimmune thyroiditis, irritable bowel syndrome (yeah, we’re going there), fibromyalgia, and POTS.

Thank you for joining me!

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