To start things off, I am an ambulatory wheelchair user. This is something that has been very difficult for me to come to terms with. In my younger days, I was an athlete, riding horses competitively, playing softball and soccer, and just generally a very active kid.
When I was in middle school, I was diagnosed with postural orthostatic tachycardia syndrome (POTs) and Ehlers Danlos Syndrome. I was always exhausted, couldn’t control my blood pressure or heart rate, and had fairly regular subluxations, but I was able to have a normal life as a whole, which put the conditions out of my mind.
Sure, I needed extra water and salt and compression gear, but I was still me. In the last two or three years, my conditions have gotten much worse, and added a few more, such as gastroparesis and mast cell activation syndrome (MCAS). I've become dependant on crutches more and more as my instability gets worse. In the last 18 months, I had to come to terms with the fact that me being very mobile is dangerous for me, because I was passing out quite a bit and having falls from subluxations in my hips, knees, and ankles.
Don’t get me wrong – I love my chair. It's given me back a ton of freedom, but it’s also made my previously invisible illnesses much more visible. When people see a chair, they immediately think that I’m paralized, and I’ve been berated many times for using a chair and/or handicap parking spot because people have seen that I CAN walk/stand and don’t understand that I can only do it for very very short periods of time safely.
I feel trapped in a no-mans land between the able-bodied and full time non-ambulatory chair users. I’ve heard from other ambulatory wheelchair users that they’ve felt the same way many times, and it’s something that needs to be addressed. We are a small subset, but we deserve to feel like we fit in somewhere.
Disabled bodies are beautiful, and disabled bodies come in all sorts of different configurations, which is something I think tends to get forgotten, especially for those of us with rare diseases that the public—heck, even many doctors—aren’t familiar with. Just because someone doesn’t fit into the boxes we’ve been enculturated to identify doesn’t make their disability any less valid. So next time you see someone standing to get their wheelchair out of a vehicle, or someone who “looks fine” using a handicap space (with appropriate tag of course), don’t jump to conclusions that they’re faking. Their disability just works differently.
I've also discovered that not only does the public need to be educated about invisible disabilities, I need to fully embrace it myself, about myself. In a short period of time, everything in my life changed, and I didn't handle those changes particularly well. I lost most of my friends (because...faking...), as well as the things I did that, in my mind, made me who I am. No more riding. No more music photography because it's too much on my body. Add using a chair into that and I've had to completely revamp how I see myself, how I present myself, and how I feel about myself.
I can't expect to help educate the public and to find where I fit if I can't accept myself first, and that will be a long journey, but one I won't be making alone!