What Ehlers-Danlos Syndrome Takes From Me (and Teaches Me)

Dear Ehlers-Danlos syndrome,

I don’t mean to be rude, but I just can’t stay silent anymore. I’ve tried to be nice, I’ve tried to be aggressive and I’ve tried to coddle you, but nothing has worked. I feel like I just haven’t gotten through to you.

You’ve taught me a lot, don’t get me wrong, but sometimes I really get sick of you. Sometimes I wish I could walk away or something, but deep down I know it doesn’t work that way. I’m stuck with you, whether I want to be or not. And when I say that, I really don’t know how it makes me feel.

You do add a lot to my life. You add a lot of bad things and a lot of good things. You add splints, subluxations, casts and exhaustion. You give me postural orthostatic tachycardia syndrome (POTS), Raynaud’s and other gems. When I think about all the negative things you add, I get overwhelmed.

The thing is, you add so much more than that.

When you test my relationships, you teach me what a true friend is.

When you exhaust me, you teach me how to function with less.

When the doctors don’t know what’s best, you teach me how to persevere and fight for my own best interest.

When you cause me immense amounts of pain, you teach me the true meaning of strength.

When you depress me, you teach me coping mechanisms.

When you interrupt my goals, you teach me to be patient and that no matter what, I will find a way.

When you make me feel alone, you give me a community to reach out to.

So, although it may not always be easy in the moment to see all the positive things you add to my life, I guess it all works itself out. I may want you to leave me alone at times, but it’s true. Whenever you take, you do teach.


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