My Double Life as a Person With Ehlers-Danlos Syndrome

Many who know me are aware of Ehlers-Danlos syndrome. They know it seems like it causes dislocations and bruises even if I just look at something the wrong way. But often times they don’t realize the face I put on is hiding behind tears and disappointment. I work full time and put on my brave face and act as if nothing is wrong. But when I go home, I deal with the pain from that day at work and also make sure I have everything in order regarding my health.

What many of them don’t realize is I work two full-time jobs. The one where I make a living and the one that keeps my health (the best I can) in check. I spend my two days off a week either at medical appointments or calling doctors to make sure I get referrals, medications and test results.

All I want at one point is to be “normal person.” I want to be able to go out when I want to and not have to worry about making sure I have enough medications with me. I don’t want to have to worry about knowing where the nearest hospitals are. I don’t want have a book in my car about my medical issues. If I go out and have a fun time, I don’t want to have to pay for it the next day. 

I live a double life. I’m a “normal” 28-year-old who works, but I’m also a medically complex patient. And while I often attempt to make sure these two lives don’t cross paths, they often do.

Well, this double life is getting to me. When I’m outside of work and being social, I am indeed very different. I have hard time talking about it, so here’s what I want you know:

It’s OK to ask, “How are you?” and to pressure me if I just say, “I’m fine,” when I am clearly not. It’s OK to ask how things are going, and often times just an ear and a cry session is all I need. I am scared to show the other side of me. I’m scared that one wrong misstep will land me in the hospital.

It’s OK to ask about Ehlers-Danlos syndrome. It’s a complicated disorder that even some doctors don’t fully understand. (And to be honest, often leave me wondering.) It’s OK to admit you don’t have a clue how to help me because if you aren’t facing the same battle, you’re probably scared you may say the wrong thing. There is no right or wrong question as long as you aren’t questioning my battle.

So please understand I am living a double life.

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