One thing that’s both particularly difficult as well as sometimes wonderful about Ehlers-Danlos syndrome (EDS) is that, for the most part, it’s invisible. Except for my bruising, if you look at me, there’s nothing that would stand out and make someone realize that I have a rare genetic disorder.
Often, my bruising isn’t visible because I’ve become pretty adept at clothing styles that cover them. I cover my bruises not because I care what people think — I had to get over that a long time ago — but because I get so tired of strangers and people I know asking me what in the world happened. Uh … I don’t know?
I have no problem with people who are genuinely curious asking me about my EDS; in fact, I prefer it that way. In my experience, people are curious by nature, particularly when something is unfamiliar. I don’t mind them asking thoughtful questions.
What I do mind is the people who see my bruises and say something like “Oh my goodness, what happened to you? That looks just awful!” It’s often said as if I’m part of a side show or as if my presence is distressing to them, which I think we all in the rare disease community can agree is a pretty crappy feeling. I typically brush the comments off because to an average person, it may sometimes look like I’ve had some terrible accident, but that doesn’t mean people have to speak about my bruises as if they’re offensive.
Then there are those who know the reason for my EDS, yet repeatedly continue to ask me what happened whenever they see a bruise on me. More so than remarks from strangers, this really irks me. Do they expect my answer to be different than it was the last time they asked me, or the time before that? Do they not listen or care when I tell them the first time they ask, so they feel the need to continue asking? More than anything, when people know the reason and still feel the need to question me about my bruising, it often makes me feel like they’re being inconsiderate and nosy.
As a result, unless I’m around people who know me well, I tend to wear clothes that cover my bruising. It’s just easier than dealing with the awkward questions or grossed-out stares. What bothers me the most about this, however, is that this is how people react to me as someone who appears outwardly “normal” and can minimize people’s reactions by my clothing choices. How much more difficult it must be for my fellow rare disease community members who don’t have the luxury to fly under the radar as much as I do.
I may have moments when I get irritated or frustrated by how people react to me on occasion, but when I think about how less frequently I have to deal with these issues than many others in our community, I try my best to acknowledge my feelings and then let them go. There are much more important things in life to focus on!
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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