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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.

25 things you can buy on Amazon that make life a little bit easier if you're disabled or chronically ill

I like buying shit I don’t need, sue me (in Michael Scott’s voice). Most of the time, it works out really well and I’m glad I did. I compiled a list of things that I definitely do not regret purchasing. Most are low cost, some are a little higher, but I consider them all to be good value buys. The most expensive item on this list is $79.99, but most items are under $25. These are mostly things I consider to be chronic illness and disability hacks – they help me with daily activities in ways that really help with my symptoms and overall functional levels.

Prices listed include what I paid when I purchased and what it’s listed for as of the day I wrote this post. Prices may be lower from other sellers and Amazon prices tend to fluctuate. Sellers also like to put a slash through price and pretend it’s usually sold for higher and is now on sale – that’s how they get ya! Also I know Amazon is evil and Bezos is a criminal for hoarding so much wealth, but it’s the only way I can shop since I’m mostly housebound. I better not see any of my content on BuzzFeed either (unless you ask permission and PAY ME) because I know how they are!

I also want to issue a disclaimer that this is not an ad, these are products that I have bought and that I use, but I did set up as an amazon affiliate so that if you click one of these links and shop, I will get a benefit. Here are some things I love…..

Things that help me do things better while lying down!

  1. A phone holder for when your arms just aren’t cutting it.

You can adjust the holder by bending and shaping it to however you like! I am always lying down and looking at my phone and I have to choose which symptom to exacerbate – do I hurt my neck by holding my phone down on my chest and bending my neck, or do I hurt my arms and lose blood flow to my hands by holding my phone up in the air? This helps solve that problem! If you’re scrolling, it might not work as well, but it’s great for reading or watching videos. It’s helpful for me to keep my neck straight and then alternate which hand I use to navigate my phone screen to avoid the tingles and numbness I would usually get while holding my phone.

Current price is $21.99 and my husband paid $19.79.

2. A pillow to hold your books or tablet

My husband bought this for himself and I quickly stole it. This is probably the best-value purchase on this entire list. I mostly use it with my kindle and sit it on my chest or stomach to prop up my kindle while I read. It’s just lovely.

Current price is $11.84 and I paid $14.69.

3. Funny glasses for reading while laying down

These look hilarious but they function so so so well! I do often have vision symptoms, so I’m not always able to use these glasses, but they help so much when I can use them. Sometimes I get dizzy because I can still see out of the corners of my eyes and that field of vision isn’t matching what I’m seeing through the glasses. If you also experience motion sickness and vertigo symptoms, this might also be an issue for you. When that happens, I just take them off. I love these glasses because I can lay with my neck straight, but still see the book while it’s propped on my reading pillow. This solves the same problem that the phone holder does, but for books! I don’t have to pick which symptom to ease and which to exacerbate – I can be comfortable with both my neck and hands/arms!

I paid $17.95 but the ones I got are currently unavailable. The ones I linked are listed at $11.95!

4. A laptop desk so that you can do work while lying on the couch or in bed.

I’ll keep in real – one of my ways to ease my endo pain is to apply my hot laptop directly to my abdomen. It’s probably unhealthy, but I need to burn myself in order to have a bit of pain relief, so whaddyagunnado? But when I’m not doing that, I have a lap desk to prop up my laptop and keep it from overheating. This one is also great for filling out my disability paperwork because it has a clipboard to keep it all together! I can’t find the original order (I’ve had this for a long time), but the current price is $19.99.

Things to make daily tasks and responsibilities easier

5. A daily and weekly pill organizer, separated into time of day.

I take a lot of pills, vitamins and supplements and it’s impossible to keep track of them all with brain fog (my nemesis and most hated symptom). I use the medisafe app to remind me when to take my medicine. Once a week, I divvy up my pills into this organizer so that I don’t have to go searching each day for the correct bottle. In the morning, I grab that day’s pill organizer and I’m good to go! It has spots for morning, afternoon, evening and night. I actually take two rounds of morning medicine – one set before I eat and one set with food, so those labels don’t actually apply to me, but I understand what slots I need at which times. It’s really helpful if I do go out somewhere, I can just take that days pill organizer with me instead of making sure to grab whatever pill bottles I would need for the rest of the day. If you take a lot of pills at varying times of day – this is the way to go.

Current price is $11.89 for a random color. I was happy I got my favorite color purple! I paid $11.56.

6. A pill organizer with a water bottle attached so you’re always ready to take your meds!

Yeah, it’s a water bottle with a pill organizer attached, but I like saying it the other way around because the true function for me was taking medicine. I loved this thing so much when I used it. I just don’t use it anymore because I take too many pills to fit in that organizer. It was so perfect for my thyroid pills though. They need to be taken first thing in the morning, at least 45 minutes before eating breakfast or drinking coffee. Having water and pills right there on my nightstand, ready to take as soon as I woke up was perfect! Especially for me, a person who is fatigued all the time anyway, but who is exceptionally non-functioning in the morning and upon waking.

Current price is $11.99 – $13.99 depending on the color. I have a red one and paid $13.99.

7. A phone wallet so that you always have your important stuff with you, wherever you go (because let’s be real – your phone is always in your hand)

I keep my ID and insurance card in my wallet at all times so that they are easily accessible in case of an emergency. Also, I have frequent doctors office visits, so it’s nice to have them handy at all times. I usually keep one credit card in the wallet as well. I like this one because it’s a great price and it’s leather so it’s very durable. I have a white one and it didn’t even get dirty like white phone cases typically do!

Current price is $13.95 for all color options and that is what I paid.

8. A reminder that tells if you’ve fed the dog (or cat or other pets!)

If your pets are anything like mine, they act like they have never been fed in their entire lives. If you have brain fog like me, you will believe them and just feed them every time they act hungry. I got this and used the big double-sided tape that it came with to stick it to the plastic storage bin where we keep the dog food. That way my husband and I can tick off the morning or night when we scoop out the food. For the cats…..

Current price is $9.95 and that’s what I paid.

9. An automatic pet feeder so you have one less thing to do each day

My cat Janet licking her chops waiting on the food to dispense on her feeder

We received this as a gift, but I wish we had purchased one sooner! You can set the feeder to rotate at a specific time of day so that the cat or dog will be fed portion-controlled dry food. I use it for my cats. Janet loves dry food, so she will sit and wait at the feeder starting at about 8:45, waiting for her 9:00 food presentation. Buster loves wet food, so I still need to figure out a hack for giving him the canned food! I have forgotten to refill the machine once, but Janet was very vocal and I knew when it was empty after 9:00 that it must have rotated to an empty slot. This is great too if you have limited mobility because you refill it every five days instead of every day. I find it beneficial to have my pets to care for, but I do have days when my symptoms are severe and I’m unable to leave bed, so it’s nice to have this feeder (and my husband) to fall back on.

This was a gift, but the current rice is $44.95.

10. A piece of plastic that pretty much folds your shirts for you

I worked in retail as a teenager and I pride myself in my ability to whip a shirt into a perfect Marie Kondo-style fold…. but that shit is tiring. My arms hurt and get so fatigued from folding a load of laundry. I am not exaggerating and I know my fellow chronic illness pals can relate when I say that doing one load of laundry is a cardio workout – my heart rate goes up into the 160s just from carrying a load up the steps. I can’t stand there and spend a bunch of time whipping my shirts into perfectly folded squares. That’s where this weird block of plastic comes in. Throw it on the bed (or couch, or ground, or wherever you’re folding your shirts), throw a shirt face down on top of it, then just push the various pieces over and the shirt folds! My husband loves it too so that he can finally master the art of the perfectly-folded shirt!

Current price is $16.99 and that is what I paid.

11. A cleaner to keep all of your glass medicinal supplies sparkling

Weed is medicine. Keep your medical supplies clean with this perfect glass cleaner, aptly named 420 cleaner. You don’t have to scrub or let it soak and your glass pieces will look almost brand new after! I’m so fortunate to have access to medical cannabis in my state. It’s the only thing that can even touch my endometriosis pain. Legalize it and expunge the records nationwide – don’t vote for anyone who won’t do this please and thanks.

Current price is $9.95 and that’s what I paid.

Current price is $7.99 plus 8% off coupon applied at checkout. I paid $7.99.

12. Slow-cooker liners for the lazy chef like me!

Yes, I know we’re not lazy, we’re the opposite. Do you know how fucking hard it is to muster the energy to prepare, cook, and clean up a meal when you don’t have the energy for ANY of that?? But we do it. When I am able to cook, I throw some chicken in the crock pot with some sauce and one of these liners. It’s fast and easy to throw it in and I don’t have to stand over it to watch it cook. Then, CLEAN UP IS SO EASY AND FAST! Just grab the liner and throw it all away! Game-changer.

Current price is $7.99 and that’s what I paid.

13. An adorable little kitty to give yourself reminders when brain fog is a bitch

Really, I just love how freakin cute this little cat holder is. But this has actually helped me because I put it out as a decoration and then I actually use it when I need to remember something. It’s on my table in an easily accessible place, so I can quickly grab a post-it and write myself a note for later, whenever I need to.

Pricing: I paid $7.99. Current listing price is $12.06.

14. A file folder with divisions for all of your medical shit and disability shit

I got this because it’s cute and I liked the colors, but it’s very practical too! I keep my visit summaries, referrals, test results, receipts, and insurance statements in this folder. It’s a sturdy plastic material. I also got one to store all of my paperwork regarding my disability claims. I was on short-term disability for six months through my former employer and was just accepted for long-term disability through an insurance program that they offered. I began the process of applying for Social Security Disability Insurance (SSDI) while I was waiting to hear about LTD, so I have been keeping all of that paperwork. It’s nice to keep it all organized and somewhere handy so that it’s easily accessible if I need it!

Things to increase comfort and limit symptoms as much as possible

Current price is $19.99 (including the button to click for a $5 off coupon). I paid $24.99.

15. A pregnancy pillow for EVERYONE – not just those with child

I am not pregnant and I’m not planning on becoming pregnant, but I am a big fan of this pillow. I have chronic pain in my legs and back, so it is often very challenging to get relaxed and comfortable enough to fall asleep. I picked this one because it’s a C-shape and I can manipulate it for different uses. I am a side sleeper, so the way it’s pictured in the stock photo helps. I also fold it back on itself and put it under my legs if I lay on my back. I mostly use my regular pillow for my head and then I twist this pillow into more of an S-shape, so that I am hugging the top part and then my legs are wrapped around the bottom part. I move around a lot in my sleep, so it ends up on the floor a lot, but that’s ok – it helps me with what is most difficult for me – getting comfortable enough to fall asleep.

Current price is $39.95, which is what I paid.

16. Ear plugs to block out all the noise when you just need some silence

I am very sound-sensitive now. When other symptoms are flaring, I am more sensitive to sounds. At the same time, when I’m triggered by loud sounds or grating noises, it causes other symptoms to flare. I have noise-cancelling headphones that are a big help. sometimes I just put them on my head with nothing playing – just the noise cancellation soft white noise or whatever it is. That’s not very cost-effective though, so my backup is earplugs! I have bought these and the same ones in hot pink. I just pop them in and block out the sound of the trash truck outside, kids outside playing and screaming, music the neighbor is playing, or whatever else might be bothering me. These are necessary when I have a migraine or an M.E. flare up.

Current price is $7.64. I paid $8.99.

17. A small travel chair with a strap so that you have a seat wherever you go

You can barely see the leg of the chair, but here I am sitting in line!

Before I became a wheelchair user, I used this small chair when I was going somewhere that would have required more standing than I was able to do. It’s small and lightweight and has a strap so you can carry it on your shoulder! It’s very small and not very stable, so be careful when you sit on it and make sure the logo is between your legs. I brought it with me when we were in Seattle and waited in line at the original Starbucks and it was perfect! There was no way I could have stood in that line for 20 – 30 minutes, but I could sit! My backpack has straps too where I just put the legs into the cup holder on the side, then secured it with the straps and easily traveled with it!

Current pricing is $17.59 – $28.09 depending on the color. I paid $19.99 and have a black.

18. A backrest pillow with arms for when you want to get out of bed, but not really

This is more of a comfort thing than a hack, but I’m putting it in here because it helpe me hack the severity of my M.E. symptoms. Since my M.E. symptoms progressed from mild to moderate, I have been mostly homebound. I have had days where symptoms are severe and I am unable to leave my bed. When my symptoms are manageable, I try to get out of bed and get to the couch. For those of us with M.E. pacing is so vitally important. We have to always be mindful of what activities we’re doing and stay within our energy limits because exceeding our limits causes crashes. Since I also have POTS, the best way for me to limit my energy spend is by staying horizontal as much as I can. Anytime I stand up, my heart rate is elevated. I’ve never done an orange theory class, but I imagine I could just stand in the back and be in the orange zone the entire time (or more likely the red zone). This pillow is great for when I get to the couch, but need to be reclined. I like to replace one of the back couch cushions with this guy so that I can be reclined, but still in a resting position. It’s great! I also get migraines that are eased by getting into a better body position. I have to be reclined with my feet propped up, so this pillow combined with the next wedge are a huge help when I’m having a migraine flare.

It’s hard to see, but the mittagong pillow is behind me! I’m just too relaxed and chill for you to see it.

Current price is $32.79. I paid $29.99.

19. A wedge to keep those legs up #FeetUpClub

This isn’t the most comfortable pillow, but it gets the job done. I do wish it was softer or more plush or had a softer fabric. I like to throw a blanket over top of mine or sometimes even another softer pillow on top because it is so firm. This is another one that’s more of a comfort thing than a hack, but I put it in here because of how much it helps my symptoms. With POTS, it’s amazing how much putting my feet up helps my other symptoms. A lot of people with M.E. also have orthostatic intolerance, so while you might not have POTS or a dysautonomia diagnosis, try it out and see if it helps. Somehow it helps my migraines. I think because the blood pressure in my head gets too high and it helps regulate my messed up autonomic nervous system, but who knows.

Current price is $26.25. I paid $25.49.

Things that make self-care easier

20. Batiste dry shampoo so nobody else will know that you haven’t showered in days

My hair is dark brown so dry shampoo never used to work for me like you lucky blondes… until I found THIS! I think Batiste is pretty well-known in the UK, but my US friends are not hip yet. It is absolutely perfect. It makes my hair look freshly washed even when it’s been days – and I have oily hair. It has a dark brown tint too so it covers my gray roots! Somehow I’m only 31 years old and have about as many gray hairs as my grandmother (I’m not even kidding her hair is still 75% black).

Here’s a link to the full Batiste Amazon Store so you can get which product is best for your hair type. For a 3-count of dark brown, current price is $21.18. I paid $19.74 last time I purchased.

21. Accessibility features that can be easily added to your bath or shower

Having dysautonomia makes showering and bathing very difficult because the heat and changing of postural positions exacerbates symptoms. This OXO suction cup shower bar is a must – I should have bought it sooner. It is very sturdy and helps me get in and out of the tub so much easier. I have fallen getting in and out of the shower before and also while trying to go from sitting to standing in the tub (don’t worry I haven’t hurt myself more than a bruise), so this was necessary.

Currently, it’s only available from third-party sellers. I paid $19.99. There are other options listed as well if you click the link.

An adjustable-height shower stool is a must for someone with dysautonomia or M.E. It’s takes too much energy to stand in the shower and our symptoms are worsening by bending over for shampoo and soap and then standing back up. I love sitting, so I will sit wherever and whenever I can!

I did not purchase our shower stool (my mother-in-law gave it to us after she finished using it following knee surgery recovery). The current price is $24.89 and there are a variety of options at different price points.

22. A three-for-one of bath supplies to really up your relaxation

I love taking epsom salt baths to ease my aches and pains. I got this caddy to sit on top the tub and I can read a book, light a candle and drink my sparkling water while I relax! I love it. Current price is $34.90 and I paid $30.

Behind my back – a pillow to rest your beautiful head while you enjoy some luxury. Current price is $13.50 and I paid $12.50.

Between my feet – a clear cover to stop bath overflow so that you can fill your tub with even more water! Current price is $6.49 and I paid $8.99. Rip off! Haha.

Bonus: some epsom salts! I usually get target brand (pictured here) – they smell the best and provide the best pain relief. I like the lavender when I want to relax and I also like the coconut from target. I like eucalyptus when I want to try to be more alert. Here are some options I’ve bought online. Best value & unscented – $27.99 for a whopping 19-pound bag. I paid $23.99 last time I bought and I recommend that one! Name-brand & scented Dr. Teal’s. I like this one too, but for me, it’s not worth the extra cost. Current price is $22.95 for two 3-lb bags. You can get it much cheaper at target, you’re paying for them to deliver it. I paid $17.30 last time I purchased online.

Things to bring the outside world home

23. A milk frother to get that Starbucks-like latte at home

I love drinking coffee, it’s one of my comforts, and there’s just something different about a fancy cup. I wanted a way to make that at home when I am not able to leave my house. This thing is surprisingly easy to use! I just heat up some milk or cream in a mug in the microwave, then put this into it and click the button on top a few times until it’s frothy. Then add coffee! It’s delicious!

Current price is $15.97 and I paid $14.99. I think they have these at IKEA too for a super low price.

24. A collection of British candy that can be dropped off at your doorstep!

My favorite thing about traveling is going into convenience stores and buying all of the candy. I try everything I’ve never seen before. I love candy! I got this for my husband for Christmas (and for myself to share) and it reminded us of our trip to London. You can search for other brands and candies for whatever makes you feel happy and nostalgic! (Just click my link first then search so I can get some credits hehe)

Current price is $10.40, so it looks like I gt ripped off at Christmas time, paying $14.99.

25. A soda stream because there’s just nothing like fresh bubbles

I’ve always said something is different about McDonald’s soda… it’s the bubbles, it just makes it taste so good! I don’t drink much soda anymore and I don’t get out much. My husband bought me a soda stream as a gift and it may be the best gift I’ve ever received. I drink three or four bottles of sparkling water a day. Somehow, it’s helping my symptoms too! I don’t know if it’s just the fact that I’m finally drinking nearly a gallon of water a day or that somehow the bubbles are helping me. I don’t know! I also got Mio flavors with vitamin B and that may be helping as well. It’s expensive, but considering how much I would be spending on sparkling water or soda as an alternative, it’s not that bad in the long run. And it makes me feel like I’m getting something special since soda or sparkling water are usually a treats, not something you can make at home!

Current price is $109.99 and that’s what we paid.

That’s it for now!

I have a whole list of other things I’m going to post about, so keep an eye out for that if you’re interested. I just want to take dorky pictures of myself, so one day I’ll do that! Nex up I’ll include a bunch of stuff that helps me relax and be comfortable and some tools that help me track and manage my symptoms. If you buy anything, comment and let me know how you like it! Hopefully you enjoy as much as I have 🙂

Coronavirus & Marginalized Communities: We shouldn’t have to beg for you to care about us

This has been a particularly difficult week for me, with the spread of COVID-19 triggering other issues I have had trouble processing. I have actually started to improve with my M.E. symptoms and was feeling optimistic that maybe I could progress to being a mild case again, rather than being mostly housebound with moderate M.E. The bad part is that this little bit of increased energy seems like it has only opened up space for me to feel the anger and resentment I hadn’t had the energy to feel for months while I was focused on recovery. The coronavirus is also triggering a lot of anxieties and fears for me. Seeing healthy people minimize and joke about the threat of coronavirus is infuriating. They think that their only risk is a cough for a few days. We know better and they just won’t listen or don’t care. All week I have seen people saying things like, “it ONLY affects the elderly and those with other conditions,” as if we don’t matter and are disposable. They don’t seem to care that they could spread illness to us and the effects could be disastrous. They don’t realize what a privilege health is and it is so infuriating. I want to make them listen and I want to make them care, but I need to realize that it’s out of my control.

Here are some reasons why the reactions of healthy people to Coronavirus are so infuriating.


Some of y’all never had to advocate for work or school accommodations in order to protect your health and it shows.

I lost my career due to my illness. I masked my symptoms for years while they were mild. When it started progressing rapidly last May and other comorbid illness began to appear, like POTS, I requested accommodations like working from home and was denied. I was told that was not a “reasonable accommodation,” and continued pushing through my worsening symptoms until I had to take disability leave at the end of July. I’ve been unable to work since. I asked if I could work from home during that time and was told no because I didn’t have a VPN. When they finally agreed to let me do some work from home in November, I only got up to about 15 hours in a week. I think this was just to cover their ass so they could say they did offer an accommodation and I still couldn’t manage the number of hours. I was told that since my FMLA was up and I was unable to return to 40+ hours in the office, that they would have to rehire my position. At that point, I gave up trying to work. It was more important to me to focus on my health and my treatment plans. I had just started seeing a doctor at Johns Hopkins after waiting for months and wanted to focus my energy there, not on trying to work. I don’t regret that decision at all. However, it is very hurtful and enraging to see my employer now immediately make accommodations for staff to work remotely, without VPNs, is infuriating. The excuse for my position was always that I had to be able to answer the phones. If they really wanted to, I’m sure I could forward calls to my cell phone, but that wasn’t an accommodation they wanted to make. In today’s culture, we rely mostly on electronic communication as well, but that office was always resistant to change. I remember how I tried to get them to use slack for months and I’m wondering what they’re doing now and thinking how much easier this period would be for them if they had listened to me and adapted before! 

I lost my career and worsened my health by continuing to push through and I see people posting online with their “work partner” pets and kids, while I have been unable to work, homebound for months, and at times completely bedbound. It is incredibly insensitive. On the other side is that people are treating this like it’s a vacation and not taking it seriously. I saw a post that said, “brb cancelling life #housebound” and I know it wasn’t a personal attack on me, but damn it felt like it. Also, don’t use #housebound if you aren’t actually housebound. People like me use it to connect with other people online who share our experience and it is so necessary when we are socially isolated all year round, not just during quarantine. Let us have our space please. We still need to talk to each other in a safe place, with other people who understand what we’re going through and have the same issues we do. We can’t just go to the grocery store right now if we need something and our usual avenues of delivery are swamped by abled people right now and inaccessible to us.

I wanted to work from home, so that I COULD WORK. That may have been the only way I could have kept my job, but I didn’t get a chance to try. Now, people are working from home, but still going out to bars and socializing and not taking any other steps to limit the spread of this virus. 


I am so glad that these precautions are being taken and companies that can allow work from home are doing so in order to limit the spread and protect the health of the general population. You have disabled activists to thank for that. But I resent the fact that I asked over and over again for these accommodations and was denied, resulting in the end of my career. It didn’t need to happen that way. I didn’t want to work from home so that I could slack off or relax. I wanted to work from home so that I could WORK. Now I can’t work at all. That’s what I feared and exactly what happened. I feel like I was taken advantage of, so thoroughly and completely and without care. I was a cog in their machine and I wasn’t even worth enough to them to try to perform maintenance – it was easier to just replace me with someone new. I had such an emotional bond with the place that I worked, that started when I was 8 years old, and it was not reciprocated at all and that really really hurts. Accommodations are considered “special treatment” right up until able-bodied people need them, as disability activist Imani Barbarin says. They always COULD have made these accommodations, they just didn’t want to. So many people with disabilities or chronic or mental illnesses have been denied workplace or school accommodations that have now been easily and quickly implemented and it’s hard not to resent that. To see people not taking those accommodations seriously is a slap in the face.

Some of y’all never had to cancel plans because of your health and it shows.

I get it, I really do. The anticipation and excitement of a trip or an event and then the letdown of cancelling it without being able to postpone. I feel this on multiple levels right now and I don’t even have it that bad so healthy people, get some perspective please. I love Maryland Basketball. I have season tickets and it’s one of the very few social things that is worth the payback crash. I don’t go to every game, but I go to them when I can (meaning when I have two days open after to recover because I will be crashed and bedbound after.) I’m sad that I don’t get to see them play in the tournaments. I’m sad for senior point guard Anthony Cowan Jr. who has been an unsung hero his entire career and won’t get to play in his final conference and NCAA tournament.

 I booked a trip to London, Paris & Brussels with my parents and my husband before my symptoms progressed to moderate M.E. I had been debating postponing it, but since I got a wheelchair and had started to feel better, I was excited to go and wanted to see how I would do and adjust to living my life with my current level of symptoms. I’m ok with my illness now. It may be restrictive or limiting, but I am now feeling some semblance of freedom and a return to normalcy that my wheelchair has afforded me. I was supposed to leave Sunday, March 15 and I would have been there now. I cried cancelling all of these plans. I have been fighting with companies for days trying to be given exceptions to postpone my trip or be refunded. I was diagnosed with hypogammaglobulinemia (low IgG) on March 11 and my doctor told me I was not allowed to travel due to being immunocompromised and at high risk of infection, so I canceled everything on Thursday and Friday, before many companies had new plans and policies in place. Right now, I have only been refunded $900 of the $5900 spent, but two companies said they will be issuing vouchers. Even if I am out the money, I cannot risk my health and the health of others by traveling during this time. 

On top of the fear and anxiety of the virus, there’s all of these cancelled plans and isolation. It sucks. I’m sad. But you know what’s devastating? The rest of my life plans that have been cancelled and postponed because of my illness. My career – cancelled. My plans to start a family – indefinitely postponed. I’m sad about my trip and I’m sad about March Madness, but I grieve my career, my loss of health, and my derailed life where I’m unable to have any plans because of my uncertain and unpredictable health.

PLEASE cancel your St. Patrick’s Day plans, social plans, vacation plans, and any other plans that are not essential right now. They can be postponed and are not worth the risk. Disabled and chronically ill people are excluded from those kinds of things year-round – you can do it for a few weeks.

Some of y’all never lost trust in the healthcare system due to mistreatment and it shows.

To believe that you can go to the doctor and receive care is such a privilege. My experience has not been that way. I have tried so many times to get treatment for illnesses and I’ve been disbelieved and denied care. It took me two years to be diagnosed with hashimoto’s and hypothyroidism when I had clear symptoms, a family history and abnormal blood test results. It took me three doctors and three months to be diagnosed with a fractured ankle, while I kept walking on it, thinking I should push through and it would heal. It took me more than 10 years to be diagnosed with endometriosis. It took me nine years to be diagnosed with ME/CFS. I have had to fight and advocate for myself for years and years and years and it’s so hard and I’m so tired of it. I don’t trust our medical system to be able to help me if I were to get sick with this virus. There is no treatment for M.E. They would have no idea how my chronic illnesses would make this virus present differently in me than a typical patient and I don’t trust them to figure it out. I don’t trust doctors to provide the care I would need if I were to contract this virus – my life is at stake here. Other people with M.E. have become bedbound after a viral illness and I’m not willing to take that risk. Black women are routinely disbelieved and denied basic medical treatment like painkillers. How will that affect the treatment they receive if they go in with symptoms of the virus? These are valid fears and it is so frustrating to see healthy people minimize these fears because their privilege has saved them from these experiences.

I have had access to healthcare, but many people will not be able to access the care they need during this crisis. Healthy people are putting people at risk by exposing themselves. The biggest risk we have right now is the potential strain on the healthcare system and everyone should be doing everything they can to avoid coming into contact with this virus – especially if you are healthy. Make space for those who aren’t.

Some of y’all never had to think about the effects of your actions on someone who isn’t healthy and it shows.

I am so angry seeing people joke about this and not take social distancing and recommendations to cancel events and schools seriously. You may be healthy now, but you can be a vector to spread this illness to someone who isn’t. I am immunocompromised. I’m on the privileged end of the spectrum, with a husband who can telework and keep his stable income. Many people aren’t able to work from home or will lose their income now. Some people have to continue going to work while other healthy people aren’t taking precautions and could spread it to an immunocompromised family member. Public health includes ALL of us. You’re not just taking these precautions for yourself, you’re doing it for all of us. I am disgusted that people have to be convinced that we matter and they should take precautions for us.

I am also afraid of the impacts on those with mental health conditions. For someone with a compulsion towards hand washing who sees the news coverage of people continuously sanitizing or if they see the other side of someone disregarding those hygiene recommendations. My anxiety is heightened seeing people online disregarding social distancing and hygiene recommendations but they don’t think about the impact of their actions on others. I saw a video of friends celebrating a birthday and blowing out candles on a cake and I nearly had a panic attack. My husband helped me ground myself with breathing techniques and was able to calm down. I can’t control what they are going to do, but I can control what I am doing. With everything going on, I cannot believe that someone wouldn’t at least cut their piece of cake first, and then blow the candles out. They really all ate cake that two people blew all over. You might as well have just had a party where you all cough directly into each other’s mouths.

It is horrifying to see that the governor in my state issued a state of emergency, closed schools and recommended that people stay home as much as they can, but then my social media feed was full of people out at bars, taking photos pressed cheek-to-cheek. I don’t understand. I guess it’s selfishness, but it’s also just plain stupid because you are putting yourself at risk too.

Some of y’all never had disastrous effects on your health from “just the flu” and it shows.

This one is really getting to me – All of the people minimizing the impact this virus could have because it’s “just the flu.” I contracted H1N1 and was never healthy again. I don’t know if it unmasked pre existing conditions or if it triggered them, because we don’t have adequate scientific research.  We know there is a link between viruses and M.E. but not a definitive relationship. My autoimmune conditions surfaced following that flu. My M.E. presented after that flu. I was healthy and thought I was invincible. I was in college and went to class with a 102 fever. Then I went to the health center and they were shocked when I said I just came from class. I am a machine and a master at powering through, but I never recovered from that virus. I never woke up feeling rested again. I was very high-functioning before, but I had to adjust to a new energy level. My 3.8 GPA dropped to a 3.0 (oh no! lol) and the next semester I had to quit my part-time job and I couldn’t return to my internship in order to focus on finishing school, but I was able to manage well with mild symptoms of M.E. and continued undiagnosed for years. To reiterate my point – I was misdiagnosed three times when I had a fractured tibia and two torn ligaments in my ankle because I kept walking on it and powering through – I am a machine, but I am unwilling to risk the effects this virus could have on my body. This virus could kill me. It could leave me bedbound and unable to speak for the rest of my life. Nothing is worth that risk. I have been working nonstop for the past 8 months on nothing but seeing specialists and trying new treatments in order to manage my chronic illness symptoms – I am not willing to take any risk that may derail that progress.

If you are healthy now, this virus could leave you disabled like me. If you are healthy now but are genetically susceptible to some kind of condition, this virus could unmask that and you may never be the same. I am getting so angry seeing people going out and doing things and ignoring warnings and saying things like, coronavirus can’t stop me! Hey, guess what. It can. Maybe you’re lucky and it won’t… but it can. People think that their immune system is strong and will protect them. A likely cause of my complications is an overactive immune system that went into has been overcompensating for years. Now, it has progressed so that I have hypogammaglobulinemia (low IgG), meaning my body is low on the antibody that protects against bacterial and viral infections, making me highly susceptible to coronavirus. This virus could set off the same reaction for other healthy people. I don’t want anyone to have to go through what I have with M.E. It’s a terrible illness. This week has shown me that I care about people more than they care about themselves and a hell of a lot more than they care about us.

Ignoring advice from the CDC and WHO and state governors does not make you strong, it makes you stupid and irresponsible. You may never see the effect your decision had on others, but you are putting lives at risk. Disabled people are excluded from bars and restaurants all the time because of inaccessibility. Chronic illness patients are excluded from social activities all the time because of symptoms. And you couldn’t take two weeks to protect us and protect yourself? It’s heart-breaking. I am fighting harder for your health and for your life than you are! I realize this sounds self-righteous, but if one good thing comes out of this, maybe people with privilege will finally listen to marginalized groups about our experiences – without risking learning from experience. I’ll talk more about this in the next section.

Some of y’all never lost trust in the government to protect you and care for you and it shows.

There is just so much for me to unpack here. The current administration is handling this so poorly. I’m thankful that the governor in my state and many others stepped up and issued guidelines to protect us by closing schools and cancelling events. It’s amazing to me that the NBA had to be the catalyst to protect our country. The only other time I can remember an entire league cancelling games is after 9/11/01. Now we have the NBA, NHL and NCAA cancelling events. This is serious. The CDC and the NIH have neglected my illness for decades. I hope they don’t do the same if there are people who remain ill after contracting this virus. Activist groups for M.E. have been given so many bullshit excuses about why funding can’t be made available for research, so I was not trusting that these agencies would immediately be able to fund research to develop testing and treatment for COVID-19. Couple that with a senate that refuses to hear any legislation and an executive branch that only cares about the stock market and I am just so full of fear. I am honestly shocked, appalled and disgusted to see that people are still trusting the president and any word he says. I don’t want to hear from anyone who continues to support this president and I don’t care about their reasons why. It is inexcusable to continue to support that man when he shows over and over again that he does not care about people and only cares about money and power for the elite. I don’t want to explain to them why I don’t and I don’t think we should have to continue to explain to them why our lives matter. 

I know I still have so much privilege here. So much that what I’m saying here can’t possibly encompass everything I should. I am a white woman who is relatively financially secure, thanks to my husband. Marginalized groups have been telling us this for years – that the government has left them behind and doesn’t do anything to protect them and it will harm us all. Groups like #BlackLivesMatter have made so much progress towards equity, but this is quickly proving what they have said all along. The intersection of race and illness is so important as well. Due to environmental racism, many black Americans are immunocompromised and could be impacted more by this virus. People with privilege have always refused to listen to marginalized groups about how they have been mistreated and this pandemic is another example of that. Marginalized groups will bear the biggest impact from this pandemic and healthy privileged people are going about their normal lives without a care of the impact they may have on others. How many times do they have to beg you to care about them? The ironic thing is, people with privilege may have ignored black people, indigenous people, LGBTQ people and other marginalized groups – but by ignoring disabled and chronically ill people in this instance – you may become one of us and then you’ll finally see what you’ve been willfully ignoring all these years. And to be honest – we don’t want you to have to experience it yourself to join the fight, we just want allies who believe us and fight for us. 

My hope is that this is exposing the lies and the corruption. The accommodations that were not feasible for disabled people – they are feasible when everyone’s health is at risk. The money that has never been available for medicare for all, universal child care, and other policies – $1.5 trillion was magically available for Wall Street. Homeless families in L.A. are occupying vacant homes owned by the state in order to self-quarantine. State officials are working with hotels to provide housing for homeless people during this crisis. The Republican governor of my state called the president out today and maybe his party will finally hold him accountable. This has the potential to bring about major changes that we’ve been told were not feasible for decades and that gives me hope.

Some of y’all have never been minimized, ignored, and gaslit and it shows.

This one is really hard for me. It comes from all angles. I do it to myself, doctors do it, employers and colleagues do it, family and friends do it, people on social media do it. I am so fucking sick of the minimization, the ignorance, and the gaslighting. We have seen examples of how to quickly and effectively contain and treat this virus, yet our government officials ignored it. We see healthcare workers and people struggling in other countries and people in America are minimizing their suffering. The gaslighting is already starting with people saying, “if this turns out to be not as big of a deal, we will know the media is lying.” NO, we will know that containment worked. Now, some people are seeing what we disabled and chronically ill people and other marginalized groups have known for a long time. They’re seeing how it feels when you can only rely on like-minded individuals because the privileged group will keep shouting that you’re wrong and making things up, despite the facts right in front of your faces. Friends are telling me their coworkers are mocking them for wanting to telework. People are ignoring guidelines and continuing to shake hands and touch everything without sanitizing. People are going to bars and posting photos with their faces touching. Those same people are saying we’re overreacting. How can I possibly be overreacting when there are people that are doing literally nothing to help limit this? People are deliberately disregarding everything they could do to help, so I think we are not reacting strongly enough to drill this into their minds.

The virus is already killing people in the U.S. and people are mocking us for taking it seriously and trying to slow the spread. I am having a very hard time balancing what I feel is my responsibility to be informed and inform others with my anxiety over what is happening. This virus should not be minimized or ignored. Your anxiety or trauma resulting from it will not be minimized or ignored. We will not allow the misinformation and gaslighting to spread. This is a public health crisis and the only way we can go through it is together, by taking care of ourselves and taking care of each other as best we can. Do what you need to do to self-soothe, to stay grounded, to maintain some control over what you can control.

It is just totally dehumanizing to see people continuing to say “it only affects the elderly” and “it only affects those with compromised immune systems” as if we are disposable and don’t matter. We can hear you. We see you. You all are really exposing yourselves here and showing who you truly are. We do matter. We are not disposable. You should be doing whatever you can to protect us. We shouldn’t have to be begging you to do this for us. You should do it because you would also be protecting yourself. The ironic thing is, this time, by ignoring the marginalized group, the privileged people could join it. Healthy people could get sick and die. Healthy people could get sick and never recover. We’re fighting for them too. Even when some of them won’t support us right now or ever.

One more thing I want to say in closing because I’m having to continuously remind myself of this. Even when I see people posting online, blatantly disregarding social distancing and hygiene recommendations, I do not hope that they come into contact with this virus and develop symptoms. If they do, it isn’t their fault. Illness is never our fault, it’s just something that happens to us. I have to continually remind myself of this when I place blame on myself. I blame myself for not listening to my body, for pushing through my symptoms, for making myself more ill. It was never my fault, and will never be my fault, that I got sick. No individual is to blame for contracting coronavirus and we still must do what we can to take care of ourselves and take care of each other (from a distance) during this pandemic and as we move forward. I am doing whatever I can to prevent myself from contracting this virus and I feel good about my efforts to do so. I am scared for all of the people that could get it and could stay sick from it, but we’ll be here to support you when you join us.  I hope that most people won’t be joining us in the sick kids club, but please support us and listen to us – we need it.

Some things I’ve done to ease my anxiety about all of this!

  1. Talked to my therapist (who switched to having all sessions online!)
  2. Made a list of places I’ve been that took my breath away and made me feel at peace
    1. The Grand Canyon
    2. Kauai, Hawaii – seeing the stars at night from Waimea Canyon State Park
    3. The sunset in Naxos, Greece
    4. Sitting on the roof of a hotel in Athens and seeing the Acropolis in the distance
    5. Secluded at the dog beach with my pup on a sunny day
  3. Puzzles
  4. Ate cookies and milk
  5. Practiced meditation (I love the headspace app)
  6. Grounded myself with my breathing
  7. Played words with friends with other people with M.E. that I met on twitter
  8. Talked to healthy friends and family about why social distancing is important
  9. Wrote this post to get my anger and frustration out
  10. Watched the Office
  11. Watched the Good Place
  12. Pet my cats
  13. Snuggled with my dog
  14. Sat outside on my deck
  15. Washed and changed the sheets on my bed
  16. Disinfected the doorknobs around my house
  17. Tidied up the living room
  18. Lit a relaxing vanilla candle
  19. Took an epsom salt bath
  20. Put on fun, bright-colored clothes to lift my mood
  21. Made this list 🙂

How To Make Sense Of Jennifer Brea’s Recovery

This is a guest post by Lori Madeira. Lori is a ME/CFS advocate who posts on social media about a wide variety of topics relating to ME/CFS and other chronic illnesses. You can follow her on Instagram and Twitter “@MECFSWarrior” and Facebook “Lori Madeira | ME/CFS Advocate”

Have you been interested in learning more about Jennifer Brea’s recovery but haven’t had the cognitive ability to read more about it? Below is a condensed timeline of important facts taken from her Medium.com blogs, to help you quickly understand about her illness onset, functionality during her illness, surgeries in 2018, and her recovery from ME. This post takes 12 minutes to read.

This information is taken directly from 21 of her blogs from “A New Diagnosis To Add To The List” to “Health Update #4: Recovery Is A  %*#*&$@!” This information is condensed and arranged sequentially by Lori Madeira. The closing remarks are by Lori Madeira. All other information is owned and originally written by Jennifer Brea. Please check out her full blogs on Medium.com for more detail if you are able.

Pre-Onset

In 2008, Jennifer briefly lived in Beijing, China in a house with severe mold infestation, exposing her to massive amounts of black mold over a period of a few weeks. She developed memory and concentration problems. She then collapsed unconscious with a thick, black snot oozing from her nose. She immediately left that house.

After that experience, she started to have hypersensitivity to mold and mildew. She developed food intolerances and a sensitivity to alcohol. These were possibly all symptoms of early Mast Cell Activation Syndrome, which she believes was triggered by her mold exposure. She was otherwise healthy and functional.

Black mold can directly release collagen degrading enzymes. Viruses can trigger collagen degrading enzymes as part of a person’s inflammatory response. 

She believes her mold exposure set the stage for a massive inflammatory response in her next major viral infection, by initially causing some connective tissue damage and triggering mild MCAS.

Onset

In early 2011, she had a fever for ten days. It peaked at 104.7. She became suddenly ill after this acute viral infection, and developed ME/CFS and PEM. 

Tests weren’t done at the time to confirm the virus she was infected with, but Dr. John Chia believes she had Cocsackie B4. She would later test for high titres of autoantibodies. 

She believes a hyper-inflammatory response to this acute viral infection damaged the connective tissue and ligaments in her craniocervical junction. This caused brainstem compression and Craniocervical Instability to develop at this point, and was left undiagnosed for seven years.

She became progressively more ill. By 2012, she became bedridden and was incorrectly told she had “conversion disorder.” 

She was eventually diagnosed with ME. She met all definitions of ME/CFS, including the ICC and CCC definition of ME/CFS. She prefers the term “ME” even though she thinks ME and CFS are one in the same, see her blogs for more information on her thoughts.

She developed Postural Orthostatic Tachycardia Syndrome. She also developed and was eventually diagnosed with full blown Mast Cell Activation Syndrome.

She had the classic symptoms of ME, POTS and MCAS. As well as those, some of her worst symptoms were sound hypersensitivity, light hypersensitivity, neurological symptoms, and difficulty regulating her body temperature.

From 2011-2018, she lived mostly in her bedroom, only walking to go to the bathroom. At her best, she could leave the house in a power wheelchair, as long as she was careful to pace and not to induce PEM.

She started wearing a fitness watch in 2015. She was averaging 250-300 steps per day between then and 2018. The average for a healthy person is 5,000-7,000.

Life In-between Onset And “Unrest”

During the time she was making Unrest, she spent three years living in tents in her backyard in Princeton from April to October for mold avoidance. She reacted to every building on the East Coast. Before mold avoidance, she was bedbound and able to eat only three or four foods. After, she experienced remission of nearly all food sensitivities, greater cognitive and physical function, and some improvement with ME.

By 2017, the combination of mold avoidance, antivirals- Valcyte and Valtrex, Mestinon, Fludrocortisone, and Ketotifen had improved her overall health. Finding those treatments over the course of a few years took her from very severe, to severe, to moderate, to moderate on the spectrum.

In 2017, she was moderate enough to enable her to travel to promote Unrest with the aid of a power wheelchair and many crashes in hotel rooms. 

After “Unrest”

She included her own MRI taken in 2012 in “Unrest.” In early 2018, a neurosurgeon reached out to her after seeing “Unrest” and told her that her MRI showed an empty sella- an indication of intracranial hypertension. This finding was clear on her MRI but was previously incorrectly considered irrelevant.

She had the symptoms of intracranial hypertension for years: headaches and the feeling of pressure behind her eyes. In hindsight, she now attributes the crash after the parade in “Unrest” to intracranial hypertension.

In March of 2018, she sought diagnosis of intracranial hypertension by getting a type of MRI with contrast to image her veins. She had a high volume lumbar puncture to see if temporarily reducing the spinal fluid volume in her brain would improve her symptoms. It did temporarily, most notably, her ability to read and dizziness improved.

These tests lead to a suspected diagnosis of intracranial hypertension, something she had had since the early stages of her onset, but had gone undiagnosed until then. She needed further testing to confirm this.

These tests and findings also lead to the first doctor to suspect she had Craniocervical Instability, aka CCI, that needed further investigation.

Thyroid Surgery And Aftermath

In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. She had put off having this surgery until after the promotion from “Unrest” was over. During the surgery, her neck was hyperextended to intubate her. She theorizes that this exacerbated a mild to moderate undiagnosed case of CCI that she had had since her ME onset, and turned it into a severe case.

She awoke from the thyroid surgery with excruciating pain in her jaw. She was weaker, now experiencing numbness and difficulty speaking. She couldn’t sit up without falling over. She was possibly experiencing spinal fluid leaks. All of her ME and POTS symptoms got much worse.

She developed the new and disturbing symptoms of stopping breathing (central sleep apnea) while she was completely awake, every time she laid on the back of her head. She had to lie on her side to remain breathing. She became non-responsive and looked like she had passed out every time she turned her head to the left.

All this resulted in a huge crash in July 2018. Coupled with the new symptoms, this was the most symptomatic and debilitated she had ever been. 

Between Thyroid Surgery And Her Three Neurosurgeries

On the advice of her friends with Ehlers Danlos Syndrome, she began wearing a hard neck brace: a Philadelphia collar. She found that it relieved some of these new symptoms. It did not relieve her ME or POTS.

Her physician, Dr. David Kaufman, ordered an upright MRI. He was the second doctor to believe she had CCI.

She underwent two invasive tests: cervical traction test and a 24 hour intracranial pressure bolt test. Two bolts attached were surgically implanted to be attached to metal handles. A small hole was drilled into her skull and a probe was inserted to monitor intracranial pressure. She then underwent 24 hours of testing, measuring and monitoring her symptoms. 

The invasive cervical traction test was performed, using the two bolts and handles to attach to a weight and pulley system. They used this to lift her head off of her spine. At thirty pounds of traction, she felt all her symptoms lift. She temporarily had complete remission of the agony of ME she had experienced for seven years. She knew then that brainstem compression was the underlying mechanism of her ME.

The intracranial pressure testing monitoring definitively confirmed her intracranial hypertension diagnosis.

She was definitively diagnosed with Craniocervical Instability and Atlantoaxial Instability, aka CCI/AAI, and Tethered Cord Syndrome. Her abnormal breathing was caused by cranial settling.

Three Neurosurgeries 

Starting in November 2018, she had three neurosurgeries over three months. One on her upper cervical spine, a craniocervical fusion, and two more surgeries in her lumbar spine.

On November 28th, 2018 she underwent a craniocervical fusion. The skull is pulled upward and placed into a corrected position, and then the occipital bone on the skull is fused to the upper cervical vertebrae to hold in the corrected position. Essentially, this lifts the head upwards permanently via surgery. This is very serious surgery, typically taking 4-8 hours and recovery from it takes a full year.

She woke up from her craniocervical fusion surgery with her ME symptoms in remission. It corrected her breathing problems/central sleep apnea, numbness, and weakness.

After the craniocervical fusion, she woke up with temporary remission from POTS symptoms. Her POTS symptoms went away and came back repeatedly over the course of a few months, she believes due to post surgical swelling.

In December of 2018, one week after her craniocervical fusion, she had surgery for tethered cord release. She believes she was born with a tethered cord. After that surgery, her POTS temporarily worsened, likely due to swelling.

In January 2019, she had another lumbar spinal surgery to release a hematoma that was compressing her spinal cord, a complication from a prior blood patch.

Remission

These three surgeries were brutal and the greatest traumas of her life.  While her ME symptoms remitted during her craniocervical fusion, her full remission and permanent remission wasn’t clear at that point because of the impact of these surgeries was so severe. She needed significant recovery and physical therapy. And after seven years mostly in bed and wheelchairs, she was deconditioned. 

During the recovery process from her surgeries, she slowly regained her ability to walk. She was able to walk 4,000-7,000 compared to her average of 250-300 pre-craniocervical fusion. By March, physical therapy wasn’t causing PEM, but instead gave her an endorphin rush.

In March of 2019, she went into full permanent remission of POTS and announced this publicly. She could easily stand without her heart rate going over 94. She theorizes that her POTS was caused by brainstem compression.

What was clear to her since receiving thirty pounds of cervical traction and how she felt when she first awoke from craniocervical fusion surgery had held true: ME had gone into remission. In May of 2019, she announced that she no longer had ME.

Since then, she is now well enough to hike, exercise, lift weights, dance, hold a plank for two minutes, drink alcohol, read and write long form, and multi-task.

She has experienced significant complications since undergoing surgery. She has had swelling that recompressed her spinal cord, trouble with recurrent spinal fluid leaks, and jugular vein entrapment by her omohyoid muscles. She has had to deal with the significant emotional trauma from all this.

Now, the only illness she still has is MCAS, which she still takes Ketotifen for. She attributes her mold sensitivity to MCAS and is still reactive to mold, but that seems to be improving. She takes no other of her previous ME and POTS medications. She takes thyroid replacement hormone due to her thyroidectomy.

Theories

A growing number of clinicians believe that intracranial hypertension may be an important part of the pathophysiology of ME/CFS and Fibromyalgia. 

She theorizes that an acute viral infection made worse by prior mold exposure caused the damage connective tissues and collagen. Infection can damage the cervical spine. The region where her skull connected to the upper cervical spine had “lax” ligaments, causing cranial settling into the brainstem. This caused brain compression. She believes that brainstem compression caused her ME symptoms, POTS and autonomic dysfunction, considering they were relieved upon releasing the pressure  on her brainstem when she had the craniocervical fusion lift her skull up off her compressed brainstem.

Craniocervical fusions are not a cure for ME. They are a treatment for people with ME who have CCI. 

None of this means that she didn’t have “true ME” or “true CFS.” Jennifer Brea absolutely, factually had ME/CFS and was scientifically confirmed as having it. Her other diagnoses uncovered a previously little-known possible cause, complication, or underlying mechanism of ME/CFS. Her remission proved the factual basis of all this.

A lot of these symptoms, diagnoses, and surgeries are common in EDS. She has some hypermobility but doesn’t meet any diagnostic criteria for EDS. She suspects she has a connective tissue disorder, due to changes brought about after her viral onset. She believes that connective tissue damage and collagen degradation was a part of her ME, and research indicates that this may be true for a large number of PwME as well.

A Swedish study of 234 patients who met the CCC definition of ME/CFS found 49% had hypermobility, and 20% met the criteria for EDS. 67% met Fibromyalgia criteria. Three different signs of intracranial hypertension were found in patients at rates of 83%, 55%, and 23%. Herniation of the cerebellar tonsil was found in 56% of patients. Chiari malformation was found in 13% of patients. This study confirmed that structural neurological abnormalities are present in a significant subset of ME patients.

Closing Remarks

Jennifer Brea’s recovery has ushered in a new era of discovery and hope for the ME/CFS community. We have a long way to go to understand the mechanisms that caused her particular problems and led to her recovery. We also have a tremendous amount to learn about how these mechanisms may affect the ME/CFS population as a whole. What’s clear now is that connective tissue damage due to viral infection or MCAS may be causing brainstem compression in ME/CFS. 

We must keep an open, inquisitive mind as we move forward. We must learn as much as we can, piecing these puzzle pieces together. We must support one another in our journeys to seek answers for our own personal health. And we must not attack one another over disagreements about this topic. 

Hopefully more and more answers will become available in the near future. Let’s hope that a clearer path of what PwME should be doing in response to this possible mechanism behind ME/CFS becomes apparent soon. 
📸: Jennifer Brea, from her Medium.com blogs

This is a guest post by Lori Madeira. Lori is a ME/CFS advocate who posts on social media about a wide variety of topics relating to ME/CFS and other chronic illnesses. You can follow her on Instagram and Twitter “@MECFSWarrior” and Facebook “Lori Madeira | ME/CFS Advocate”

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.

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