When Ehlers-Danlos Syndrome Keeps Me From Being Who I Really Am


I am in a constant struggle with who I am and who I want to be. I want to appear normal, I don’t want to be “the sick girl.” I don’t want to be the one who always must do things differently due to having a painful and debilitating chronic illness. I don’t want to have Ehlers-Danlos syndrome, but I do. Sometimes I try so hard to pretend I am “normal” that I end up doing more harm to myself in the long run.

I recently started dating someone new. I really like him, and he really likes me – it should be as simple as that, but it isn’t. When we are together I am constantly in a battle to control symptoms of my various chronic illnesses. I don’t want him to see me in pain, I don’t want him to look at me and see a burden. I want him to see who I am as a person and I know that Ehlers-Danlos syndrome often doesn’t allow this to happen. I am afraid that if I let my guard down in this regard, he will think being with me is too much of a hassle, and the saddest part is I wouldn’t even blame him.

I often disregard what is best for my health when I am with people who haven’t known me all my life, people I am so desperate to impress. If I am in pain due to sitting in a certain position, I ignore it in the moment and then later pay for that choice in tears and days to weeks of recovery time. If someone wants me to exert myself by doing an activity that requires much more stamina then I will ever have (such as walking up what to others is a small hill), I will pretend that I can do it and then end up feeling terrible once I’ve attempted it, sometimes even getting dizzy and passing out. I am a stubborn fool who should know better.

I don’t do this for the sole purpose of impressing others, I do these things because I am trying to be the person who I truly am on the inside. My body does not allow me to be who I really am. I must always be extremely careful, as if I am a delicate flower that will be crushed under the pressure of a gentle spring rain. I can’t be a vivacious 27-year-old woman when my body feels like it is decades older than it should be and it is beyond frustrating.

I must learn to reconcile this, I must learn to not be ashamed to listen to my body. When I am in pain or know that something will cause me to feel worse later, I should do something about it instead of suffering in silence. I should realize that if someone wants to be with me, then they will just have to accept and be understanding about my disability, and if they choose not to be in my life for that reason, they weren’t the right people to surround myself with in the first place. I need to stop being so stubborn and learn to bend with my circumstances.

Getty Image by Remains


Find this story helpful? Share it with someone you care about.