How Am I Doing With My Ehlers-Danlos Syndrome? I'm 'Fine.'

I’ve written before about having Ehlers-Danlos syndrome. It’s a connective tissue disorder that affects my collagen and it causes chronic pain. For some reason the last part of that sentence is hard for me to write. Maybe it’s because I’m still coming to terms with my illness. Maybe it’s because I feel like I’m complaining. Maybe it’s because I feel like people will feel sorry for me and I don’t want that. Maybe it’s all of the above.

Except for with a select few people, I tend to minimize my pain. I say, “It’s OK,” and, “It’s manageable,” even when it isn’t. Even in physical therapy, I push myself through the pain because I feel like I have to – even though I know it’s bad for me.

I understand that when I come out and talk about hard topics on such a public platform I’m going to get questions. I understand when I’m walking with crutches, but there’s no cast on my leg, so people are going to take a second look. I should be used to questions, and most of the time I am, but I need people to understand that they need to accept my answers and accept that they fluctuate.

Last semester I made a friend with one of the ladies who works in the cafeteria at school. She is as sweet as she could be and I honestly believe she does everything she does from a place of love, but every day when I see her, she asks me when I’m going to be better. I’ve tried to explain that it’s a chronic, life-long illness, and that I’m not going to get better. That day I made her cry. The next day she asked when I was going to be feeling better. This was taxing to me. I can go through most days not thinking about the fact that I’m not going to get better, until someone reminds me.

I’ve just started telling her that I am doing good. Everyday when she asks I say, “Oh, I’m doing good today. How are you?” Even when I’m not doing good. Even when I’m in pain, or am dizzy, or fatigued, I’m always doing good.  This extends beyond her as well.

I’ve found it easier to just tell people I’m “fine,” rather than explain how I’m not. Even with my friends who know about my diagnosis I do this. No one wants to hear that you’re sick or in pain all the time. Unlike a short-term injury, spread it out over a lifetime and I’m just complaining.

I understand not all people are like this. Some really want to know how I’m doing, but it’s too difficult to weed out the few from the many. Ultimately it’s just easier to keep my answers to, “I’m fine. How are you?”

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