This is a picture of the outfit that I wore to my most recent doctor’s appointment. My thoughts in choosing this were that I wanted to be dressed up so I wouldn’t look “slobbish,”  but I didn’t want to look so nice that they’d think I had the time and energy to put lots of effort into my outfits. I wanted to look young enough that they would see me as someone who needed help but also not too young, so that they would know I was mature enough to relay my medical information accurately.

Because this appointment was for joint pain, I was also sure to wear jeans that I could roll over my knees in case they needed to do tests. If I had been going to an appointment for my Complex Regional Pain Syndrome (CRPS), which is located in my left quadriceps, I would have worn pants that can easily be removed so that the doctor could see the upper part of my leg.

In a backpack, I packed my computer, a book, a water bottle, my folding cane, my medications, headphones, a bag of crackers, and a notebook and pen in case I needed to take notes during the appointment. I made this bag the night before, right after I had mapped out my two-hour journey to the doctor’s office and written a timeline of my symptoms. I also spent the two days prior to the appointment not using any mobility devices or heating pads so that if there were any visible symptoms then they would be all the more obvious to a doctor looking at them (I do not recommend doing this. Not only was it painful, but it can be extremely dangerous. If you need a mobility aid, you absolutely should use it). Then, when I stepped in the elevator going up to the office, I was sure to pull out my folding cane, so that they would see my symptoms were bad enough that I had to use one.

Before this trip, I was telling one of my nondisabled friends about all of the preparations that I needed to undertake prior to the appointment, like packing and choosing my outfit. My nondisabled friend, clearly surprised, assured me that this was not their experience with doctor’s appointments. They viewed appointments as a chore, but not like the stone of Sisyphus I sometimes feel like I am pushing.

I have been doing extreme prepping for doctor’s appointments since I was 12 years old when I started the journey to get my CRPS diagnosed. My mother and I found that we could make the hours spent in waiting rooms a bit more tolerable by packing snacks, books, headphones, and other things to pass the time. If my memory serves me correctly, we even packed a card game for an appointment we knew would have a particularly long waiting period. We also kept detailed records to present to the doctor, including a journal with information about all of my appointments, symptoms, and other things relating to my medical history.

We also realized that the way we dressed affected how seriously my pain was taken. When my mother dressed up, she was seen as put-together and worth the doctor’s time. The same went for my clothes. Despite being a twelve-year-old without the capacity to create an elaborate, months-long lie about being in excruciating pain, I started dressing in things that I knew would make me seem like someone who was reliable and truthful about what I was experiencing. Because CRPS created extreme sensitivity in my leg, my outfit choices were limited and often consisted of soft, wide-cut yoga pants and a nicer shirt (and yes, this combination did look  incredibly odd most of the time).

Something that goes frequently unrecognized is the sheer amount of time that goes into being disabled. Taking days to prepare to do basic tasks has become second nature, to the point where I often forget that nondisabled people don’t experience this. After this most recent appointment, I talked to a variety of disabled people who have confirmed that they have pre-appointment routines similar to mine, both in the work that goes into it and the effort that it takes. 

Isabel Hessler recounted spending hours practicing what she was going to tell the doctors and nurses. Izzy Laderman, among others who wished to remain anonymous, emphasized criteria for choosing outfits such as comfort, appearance of maturity, and ease of movement. Harper McKenzie touched on the importance of what happens after the appointment, saying that she “always has to rest afterwards and if the appointment didn’t go well (and let’s be real, that’s most of the time) my mood is affected for the rest of the day.”

While all of the routines varied in some way, often depending on the person’s disability and how much practice they have had with these preparations, the common thread was the considerable amount of time, energy, and thought that goes into medical appointments. 

I wish I had an answer to this problem or some profound conclusion to draw from this information, but the unfortunate reality is that I do not. What I do know is that this is yet another issue that disabled people must face on a regular basis that the nondisabled do not, and that it is yet another example of how the 24 hours in a disabled person’s day must be spent vastly differently from those of nondisabled people. I know that each one of the disabled people I talked to had a similar experience, and yet all expressed some degree of surprise to finding out that others also had these routines. I know that myself and others often feel that there is a never-ending struggle of hoop-jumping and boulder-pushing to simply have our experiences believed. 

I know that, no matter my exhaustion, this is what I have to do to be believed. Perhaps that is all this piece is: a way to express my anger and exhaustion at this system, and an acknowledgement that for the time being, this is the reality of being disabled.