This is probably the blog I’ve been most interested in writing since I agreed to write here, in this medium, for all of you. I’ve needed to write this here for two reasons:
- For those of you who understand and need someone who feels it, too
- For those of you who DO NOT understand and needs someone to break it down for you
If I had to list the most frustrating things about having Ehlers-Danlos Syndrome, the first one would be that there is no cure/easy fix. The VERY CLOSE second thing would be that you cannot see at all that I am dealing with this very harsh reality. Unless I have literally dislocated a joint in front of you, you have no idea that I deal with this condition or what I am handling on a daily basis.
So, here is me. If you know me personally, you’ve probably seen a few photos like this. I enjoy doing my hair and makeup. I love picking out clothes and finding jewelry to match. I even paint fingernail art, because it calms my anxiety and it’s actually something I taught myself how to do during my many major leg surgeries in high school.
The problem is, that people who don’t know me, also see this person daily. The problem is, when I park in a handicap parking space because I wear braces on both of my legs under my clothes and regularly dislocate the joints that connect my legs to my back, people see a blonde, well-dressed, make-up 20-something–and let me tell, they are NOT quiet about their thoughts on it. I regularly hear from people that I don’t look ill. I regularly hear that I don’t look like “anything is wrong with me.” I read a meme once that said “When you say I don’t look sick, I’m not sure if you’re insulting me or asking what concealer I use.” It made me smile, because for a second it took away the hurt of realizing people are judging me every day without understanding what is happening with my body, without understanding the sort of pain that can come with my multiple chronic conditions.
People with EDS also struggle because we don’t always have consistency in our reliance on mobility aids or our need for assistance. If I had a dime for every time someone made a crack about me “faking it” because I was no longer using a cane or crutches after working my butt off in physical therapy and having a “good day,” I would be a retired 27-year old. Some days, I have visible braces on multiple parts of my body. Some days, I need my crutches. Some days, I use a cane. Some days, I can’t really walk at all and I need to stay home. If you think the inconsistency is become I’m faking it and not because my body is inconsistent, I will happily trade you!
I think the problem is two-fold because sometimes, when I explain the condition, I’m told that if I’m dealing with that, I couldn’t really look nice or put the effort into my appearance. I’m told I couldn’t be working or doing what I’m doing with my life. It becomes a situation where it is impossible to win, because I’m seeking attention if I don’t make the effort to conceal how poor I feel and I don’t feel poorly if I do conceal it.
I enjoy putting together outfits and wearing makeup. For me, when I look better, I feel better–if only psychologically. When my body feels like it is absolutely falling apart and nothing is in my control, I see no harm in still feeling good about how I look.
There is no uniform for the chronically ill. You are NOT required to conform to someone’s expectations of what a “sick” person should look like. You do not need to justify to yourself or anyone that you do not “look sick” enough so therefore, your struggles are not as real or not as valid as those more visible. There is nothing fair about this situation–it is particularly unfair that it regularly includes providing context for who you are and how your body is simply because its outward appearance doesn’t match its internal composition.
You owe neither an apology nor an explanation for that.