I didn’t get diagnosed with EDS until my early 20’s. I cried, I felt validated, and it felt like I could finally, FINALLY, get some help.
I saw a number of physios who were experts in treating hypermobile patients, but really struggled because it felt like I wasn’t listened to. I was often being forced to do exercises that I knew would harm me. And did. Grr.
One thing that stands out to me from that time was that I was really concerned about degeneration. I was terrified of losing my ability to walk, and was terrified of needing to use a wheelchair.* My physio told me that I was ‘too stubborn’ and that would never happen because I’d keep working too hard.
I internalised that to the point that whenever my health got worse or my pain levels increased, I blamed myself. Perhaps I wasn’t trying hard enough to be better. Were there other exercises I could have done?
My health has declined dramatically as I’ve got older, and I’ve had to spend more and more time in bed. Obviously, this is incredibly difficult and frustrating to deal with, especially when the times I do go out feel almost impossible because my pain levels are so high in my knees that walking feels impossible, and all my other joints feel like they may pop out. Now add the population of Central London to that and I became too scared to leave the house.
Over the years, I started to use my grandma’s old wheelchair when my parents would just try to help me get out of the house when I was depressed. They’d take me to look around the shops and push me around. I felt so uncomfortable and embarrassed and it just felt weird. People would look at me, people would talk to my parents instead of me. I’d have no control over where I went. I was learning what it was like to be a wheelchair user.
It took several years to build up confidence. I started getting wheelchairs at airports even when I wasn’t flying home with an injury. I started renting them at museums. Every time I couldn’t believe how much less pain I was in and how much lower my fatigue levels were.
I started to use the chair more and more, and I started to wonder if I should start using one whenever I went out.
I was scared of deconditioning (a big problem for EDS), but whenever we went out into London, I was causing myself so much physical and emotional damage, that not using a chair wasn’t having any therapeutic benefits.
I was scared that getting a chair meant that I was giving up on my ‘pursuit of health’. But over the years, I realised that instead of fighting AGAINST my body, I needed to work with it. I’ll never be able to fully accept that this is my lot, but I can try and do the best that I can with it.
Getting a chair no longer felt like a failure. It didn’t feel like I was giving up. It felt like I was finally doing something for my body that would help when nothing else has. And so after a year of thinking about it (and the pressure of having a Real Job), I took the plunge. And several months later I am still so in love with it, I can’t even tell you.
My chair gives me freedom to go out a bit more than I could, and to choose where I bloody well want to go when I’m out instead of screaming at my boyfriend to run me away from the pigeons.
It saves me so much hurt (I can’t even get to the road outside my flat without being in severe pain and now I can get to Paris by tube and Eurostar and have more energy than I would usually spend going to the bus stop).
Even though just being out of bed causes fatigue, it means that I’m less likely to have a fatigue crash. And one of the unexpected wins? I’m not scared of being around people and getting injured because now they’re scared of getting run over when I fly by. Winning.
I got my chair for my health. And I’m damn proud of that.
*I think it’s important to note that while there’s a lot of totally important and necessary activism around the positives and freedoms wheelchairs bring, for many people who have been able bodied (even kinda able bodied in my case), losing that can be absolutely heartbreaking. I’ve seen disabled people being attacked by other disabled people for talking about their struggles with using a wheelchair. Just because you’ve come to terms with it, doesn’t mean everyone just will. Often it’s not about the wheelchair, it’s grieving for the ability you had before, and that’s bloody scary. Give people time and a break, ffs.