So I’m sure many of you have wondered, what’s it like to live with EDS?
It’s a little difficult to describe, because I can never make up my mind whether I should include my secondary conditions. You see, the correllation between some of them and EDS seems to suggest there is some connection – so do I talke about EDS before I developed the secondary conditions, or after?
If I talk about it before, the main thing is that you’re constantly getting injured and the injuries don’t heal all that well. People think you’re terribly clumsy because you get hurt doing perfectly normal things like, oh, walking. At this stage, a lot of us don’t get diagnosed – I sure didn’t! You have to start getting careful about what you do, and listening to your body. In terms of preventing injuries, the best thing I ever did for myself was to take a yoga class. It strengthened my muscles (which helps prevent the kind of injuries we’re prone to) and improved my awareness of where my body was. By the time I had taken ballroom dance classes, if I was paying attention, I had a kind of precision that is quite rare. The only problem is that when I’m not paying attention, I don’t have it! So I still got injured walking around obstacles, bumped into tables and doorways, and the like. You get used to your body aching, because when your muscles have to hold your joints together, they get fatigued. And then there’s all the injuries. They linger, and ache, and create muscle aches because of the way the muscles get jerked around when your joints move out of place. But other than the low-level pain you have all the time, and the frequent injuries, you don’t seem that odd. I always had bruises, scrapes, and cuts from something, but everyone including me assumed it was just because I was a clutz. Yeah, I could do parlor tricks like touch my thumb to my forearm, or touch my foot to my opposite shoulder with ease. But that’s all, really, when you’re dealing with a comparatively mild case of EDS like mine.
When I got older, I started getting secondary conditions. At about 19, I had irritable bowel syndrome (IBS) show up, and suddenly I’d get diarrhea or constipation, or more often gas and cramps, for no apparent reason. I’ve dislocated about 3/4 of the joints in my body over the years. When I was 23, I developed fibromyalgia, leaving me with chronic pain everywhere. Fibro acts as a kind of amplifier of the nervous system. When something hurts, it REALLY hurts, at about three times the rate it did before. I have a hiatal hernia, which is to say that part of my stomach sits above my diaphram, which makes it easy for me to cough or laugh myself into vomiting. It also has given me acid reflux, so that I have to take pills to stop my stomach from producing so much acid and watch what I eat. My annoying bladder leaks all the time. My migraines are at least partially involved with my EDS, because the tension and instability in my neck and shoulders triggers most of them. I faint in the heat, or any time my hydration, salts, or blood sugars dip. I’m supposed to wear a whole pile of braces, but I have trouble with them – either they’re so hard to put on that I dislocate fingers doing it, or they cut into my easily torn skin, or they overheat me and make me more prone to fainting!
Now, I know that sounds like a pile of things gone wrong. And it is. But the thing is, I’m still happy. I can still go to law school, and I pursue my hobbies like spinning yarn, knitting and crochetting, painting, making jewelery, and sewing. Because of my disabilities, I have a wonderful service-dog partner. Because of my disabilities, I met some of my closest friends. I also have an awesome boyfriend, though meeting him wasn’t directly because of my disability (though I’ll tell you guys the story sometime, if you’re curious).
The big thing about living with EDS is that I could wish for a bit more undertanding from the world at large! I HATE being asked by strangers why I wear braces or have a service dog (though I explain the latter because having a service dog makes you kind of a de facto ambassador for service dog programs, not to mention the fundraising for your service dog program that you can do by educating). I’d really love if people wouldn’t assume that the girl with the dog must be blind. It would be great if people would ask me if I need help, or ask how they can help. I love when people open doors for me, even though I know many folks with disabilities don’t like it. I wish there were seats in more places, so I could sit down and take a rest when I’m out shopping. And for crying out loud, if you don’t know me, don’t tell me that you’ll pray I get healed! I was made this way, and I’ll stay this way thankyouverymuch. If you believe in a creator, then you ought to believe that their creations are intended to be the way they were made. I wish that doors everywhere had electronic openers, so that all I have to do is have the dog push a button and I no longer have to rely on the kindness of strangers to get in or risk hurting my joints. It would really be nice if the world was more willing to accomodate me without blatent signs of my need – no operators on our local public transportation would give me the disabled rate before I got my service dog, but nobody denies me that right now. And oh…oh do I hate being stared at. I’m not a show, I’m not a circus freak, I’m just somebody going about her day just like you. I’m tired of buildings that send me in a back or side entrance instead of having an accessible entrance right up front so I can walk in with everyone else. That, more than anything, is what I want – to be treated like everyone else. To have the same opportunities and the same access, to be viewed as just as valuable and just as welcome.
Phew, that got long.
In conclusion…if you want to know about EDS, about living with it, about being disabled…listen. Don’t disregard my voice. Don’t call me ‘too sensitive’. Don’t claim that no one could possible treat me the way I’ve been treated. Don’t deny my personhood, my existance, my life.
If you want to ask questions about anything I wrote here,or living with EDS, or being disabled, or specifics about how my body deals with things, or…well, anything at all, I’m officially opening the floor here. This is a get out of jail free, all questions accepted invitation.