I am very proud and excited to introduce Wilma! My new, custom wheelchair.
Realizing I needed a mobility aid
It was quite a long process to get approved or a wheelchair. First, I had to get over my own internalized ableism and the stigma surround wheelchair users and admit that using a wheelchair would be so beneficial for me. When I took a steep downturn in health and went from mild to moderate to severe ME within about two months, I cried to my boss saying I don’t think I can do my job and I’m afraid I’m going to end up in a wheelchair if I’ll be able to get around at all. I don’t know why this upset me at the time. I was afraid at the loss of mobility because it was happening rapidly at the time and I was still ignoring the signs and continuing with harmful treatment (physical therapy and pushing through). I remember looking at disability advocates online and thinking, I have those symptoms, maybe if I actually have that diagnosis I can get a wheelchair. It took me many many months to realize that my diagnosis doesn’t determine my need for a mobility aid, my symptoms do.
Navigating insurance and the cost of wheelchairs
A diagnosis doesn’t determine the need for a mobility aid, the symptoms determine the need for mobility aids.
Unfortunately, that’s not how insurance works. I needed diagnostic codes on a referral order for durable medical equipment. Many people with M.E. and other chronic illnesses have such a hard time finding a doctor to believe the symptoms and offer ways to cope with these symptoms, since there is no treatment. Despite the many physical symptoms that I show, such as autonomic dysfunction (tachycardia, bradycardia, high blood pressure, low blood pressure), orthostatic intolerance, exercise intolerance, muscle weakness, swollen lymph nodes, sensitivity to light and sound, painful tender points on the body and more, I have been diagnosed with “syndromes.”
A syndrome is “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.” There aren’t biomarkers for syndromes, so the validity is sometimes questioned. This makes me furious. Another definition of syndrome is “a characteristic combination of opinions, emotions, or behavior,” showing how this word has been bastardized and now it’s used to minimize our symptoms and illnesses. These symptoms are measurable proof and we are still doubted. When I’m laying down and my heart rate is 55 bpm and then I stand up and it goes up to 125 bpm and then I walk up a flight of stairs and it goes up to 170 bpm, that should be evidence of something wrong with my autononomic nervous system. I can’t mentally control my heart rate. Yet we are treated as though this isn’t proof that we have an illness. These physical signs should be proof of the unmeasurable signs like fatigue and exercise intolerance. You would think it would be easy to explain that me standing for ten minutes with a heart rate of 160 bpm is the equivalent of a healthy person who only gets a HR of 160 pm by sprinting for ten minutes. So imagine that you’re sprinting through the store every time you shop instead of standing. Yeah, sounds great, huh.
My doctor used the diagnosis codes for ME/CFS, fibromyalgia and Postural Orthostatic Tachycardia Syndrome (POTS) for my wheelchair order. She wrote that my fatigue and pain prevent me from being able to self-propel and recommended a power wheelchair. She also wrote about how POTS affects my fatigue and how I am unable to stand for long because of the variation in heart rate and blood pressure caused by POTS. My primary care doctor wrote the referral on November 1.
Before my symptoms became moderate to severe, I bought a wheelchair on Amazon (on the left, modeled by my cat, Janet). I bought a Drive Medical brand chair with elevating leg rests. Putting my legs up helps relieve POTS symptoms. The chair was about $180 and I was able to use my FSA card on Amazon. I had a few issues with using this chair. The wheels are positioned too far back for my body, so when I reach back to grab them to propel myself, it causes a lot of pain in my neck and shoulders. I’m tall for a woman, but average height overall at 5 ft. 9 inches, so I was surprised that I didn’t fit well in the chair. I added a seat cushion to lift myself higher, but my knees were still higher than my hips and it caused hip pain. When I used the elevated leg rests, I would flip the foot rest aside, so that my legs could be straight. This chair isn’t really meant for self-propelling, but is a good option if you have someone who can push you. It’s also really important to note that wheelchairs are not affordable. Amazon has the most affordable options that I could find. People who use these wheelchairs are valid wheelchairs users. There is no competition and no need to justify who is more disabled based on how expensive or how fancy a wheelchair is. It’s very important to dismantle gatekeeping within the disability community. Some people don’t have access to doctors who will listen to them and give them a diagnosis. Some people don’t have the financial ability to go through the process of getting a wheelchair through insurance, which is still far more expensive than getting on on Amazon.
I took the referral to a wheelchair company called Numotion and they had me schedule an evaluation with an Occupational Therapist. I got lucky with the OT because initially they were booked 8-10 weeks out, but there was a cancellation and I got in for the first appointment on December 5. This appointment was very helpful because she wrote an extensive report for insurance and I was able to try out various wheelchairs to find one that was best suited for me.
The OT asked questions about how my illness affects my ability to do things like use the bathroom, cook a meal, or take a shower. I hadn’t really realized the extent of my illness until she brought it up. The hallmark symptom of M.E. is exercise intolerance or post-exertional malaise. This is a fancy way of saying that there is a significant worsening of symptoms after even minor physical or mental exertion. A good example is that I need to lay down and rest and sometimes need to nap after taking a shower. I can’t stand up in the shower and either use a shower stool to sit or I take a bath. I usually only bathe twice a week because of my symptoms. I also find myself delaying using the bathroom because of the energy it takes to get to the toilet. I am unable to cook for myself because I can’t stand at the stove in the kitchen. These examples of how my illness affects “activities of daily living” were important to demonstrate my need for a mobility aid to the insurance company.
The OT also measured my strength in my arms, legs, hands, and feet. My left side is still significantly weaker than my right side, following surgery on my left ankle in 2017. She also had me walk down the hall and timed how long until I got dizzy and noted my heart rate when I was sitting, when we started and when I had to stop. We also timed how long it took for my heart rate to come back down to normal when I came back to the room to rest. The OT was very thorough and took the full allotted hour and a half. She didn’t want to rush me trying out chairs so I came back the following week to try out different types of wheelchairs.
I got the wheelchair on January 31. The entire process took 13 weeks. Thankfully the OT and Numotion were able to rush the process and insurance approved me on the first try, so the process was actually faster than it could have been. They told me 12-16 weeks and we hurried it along knowing that I would lose my insurance coverage on February 1 and have to switch to my husband’s insurance. I really didn’t want to wait to start the process in February. Already I’ve been able to do things that I haven’t been able to do for months because of my illness, but I’ve still been taking it slow. I don’t want to overdo it because exercise intolerance is so hard to understand and I made myself so sick by pushing so hard for so long and ignoring the warning signs with that symptom.
I also wanted to be transparent and discuss the cost. Even with what I consider to be “good insurance,” this process wasn’t easy and the cost is exorbitant. I paid just over $1,000 out of pocket for the wheelchair and SmartDrive. The total amount on the invoice was more than $21,000 – $7,000 for the chair and $14,000 for the SmartDrive. That’s almost what my car cost, which is totally absurd. I’m not able to work now, but I am privileged that I was able to save money before my illness, I was covered by a short-term disability plan for 6 months and my husband has a great job. This isn’t what typically happens when someone suddenly loses mobility due to chronic illness. I am the exception, not the rule and I still think it was way too hard and way too expensive even though I had it easier than probably 99.5% of people in this situation.
Choosing a chair and features
The hardest part was prioritizing which features were most important to me. The hardest part with the chair I bought on Amazon was that I could not use it independently. I wanted to find a chair that I could get in and out of my car without much exertion. I have a small SUV, so the chair would have to be lightweight and compact. Many of the power chairs were not suitable because they don’t come apart or I couldn’t lift them into the car. I chose a manual wheelchair with a SmartDrive attachment that turns it into a power chair.
The wheelchair is a helio A6 and is very lightweight. I chose a rigid backrest that is soft and gel-like on my back so that it provides support and is soft. My posture is terrible because I am often too fatigued to even hold myself upright. The back easily slides on and off the chair. I also got elevating leg rests so that I can raise my legs if I am feeling symptomatic. This usually helps lower my heart rate by 10-20 bpm. The leg rests easily detach and swing away so that I can get in and out of the chair. The wheels also pop off easily, but I keep them on because the chair folds and fits in my trunk with them on. [I will add photos of these features later!] It’s light enough for me to lift in and out of the trunk, but usually my husband is with me and he puts it together and takes it apart for me.
Wilma is so much lighter than the amazon chair, which weighed 50 lbs. Since my illness fluctuates, on days when I feel better I am able to self-propel for short distances with Wilma. This is helpful for going crowded places. It doesn’t feel like I am pushing my full body weight plus the chair, like the Amazon chair did. I only struggle if I’m going uphill or if I’m on uneven ground.
I am still getting used to the SmartDrive. It is hard to practice and the hardest adjustment is having to navigate around other people. It has a smart watch where you tap twice to start it, it accelerates and then you tap once to set the speed. Then you tap twice to stop. It can’t abruptly stop, so it was very stressful practicing in a grocery store where people either chose to ignore me or straight up didn’t see me because I’m shorter in a wheelchair. I need to practice more with the settings on the SmartDrive and watch to play with the sensitivity and acceleration speed. I tried practicing outside in my court, but the ground is uneven so it’s very hard to steer while practicing.
I got lifting gloves to use with the chair. There are pads on the palm so that you don’t get any friction burns from the wheel. I need to practice with not trying to grip the wheels to stop them and just applying friction with my palm and an open hand. Getting your fingers hit by a moving spoke while trying to grip a moving wheel and stop it is a bit painful! It’s hard to steer with the SmartDrive because you have to apply pressure to one wheel or the other. If you are on uneven ground, you have to apply a lot of pressure to one wheel to stay straight and I don’t have the strength for that. I didn’t realize this when practicing inside in the indoor environment. I likely won’t be able to be totally independent with the combination of wheelchair and SmartDrive, but I am much better off than I was before. My husband also likes Wilma much better because it’s so much easier to push with the lighter weight and ergonomic wheels.
Stop the Stigma
I am so excited that I now have a wheelchair. I don’t understand why non-disabled people continue to stigmatize wheelchairs. Like a post I saw recently, I’m literally just a person sitting down. Don’t you like sitting down in a comfy chair? I just bring mine with me because I need it wherever I go!
I wonder if I had been involved in an accident and suddenly lost my mobility, rather than this gradual decline, if I would have reacted differently. I think non-disabled people view a wheelchair as something being taken away, rather than something being given back. Yes, I have lost my mobility and I can’t stand up or walk around. My symptom of orthostatic intolerance is just a fancy way to say this lady cannot stand up, her body freaks out. But my wheelchair gives that freedom back to me. I can go to the store now without having to turn around and leave if there are no electric scooters left. I can go have a drink with friends because I don’t have to worry about becoming dizzy and lightheaded because there are no open seats. I can go to a football game again without having to worry about fainting waiting in line at the gate. I can go with my husband and my dog for a walk around the neighborhood and get some sun without needing to take a nap afterwards.
Me using a wheelchair is not “heart-breaking” or “a shame” or “sad to see.” It’s not traumatic or deserving of sympathy or tears. It’s liberating. I have regained some of the independence and freedom that was taken by illness. I can go be in the world instead of stuck in my bed or on my couch. I can spend more time with the people I love and less time recovering from it. I have always found joy in new experiences and new places. Now I can be a part of those spaces again. But at the same time, my wheelchair isn’t here to be an inspiration. It’s just here to help me live my life. Just like your car or your favorite pair of shoes or your new backpack purse that doesn’t hurt your shoulders like all your other bags did. We have so many tools that help with so many things and a wheelchair is just another example of that, so please don’t treat it like it’s some sort of terrible affliction or something that needs to be overcome. I love it and I’m so happy to have it, but it’s just another tool.