{NHBPM Day 8} Come on, Eileen: A Letter to My EDS

I’ve recently decided that giving my EDS a name will help me focus my energy on combatting it in any way I can. Instead of being frustrated at the vast array of symptoms I experience in a vague, unproductive way, I’ve been able to sigh and say, “Come on, Eileen! Cut me some slack!” in an exasperated tone of voice, and even if the symptoms don’t let up, I’ve emotionally separated my disease from my self. As this flare rolls on and on, I’m finding it ever more helpful to give Eileen a good talking to, and then getting on with my life–leaving her by the wayside. Thus, a letter to my friend (frenemy) Eileen, my Ehlers Danlos Syndrome.

Dear Eileen,

It’s been a long road for the two of us. I’m not quite sure how to say this, but Eileen, my dear, I’m breaking things off. You should understand that it’s me, not you–I feel like I’ve grown up enough to go along on this road without you, and you’ve begun to hold me back.

When we first met 11 years ago, I don’t think anyone could have predicted the way things would go between us. I wasn’t quite sure what kind of friend you’d be, but you seemed persistent in trying to get to know me, and I couldn’t say no. I have to tell you that you’re kind of clingy (don’t take it personally). You started off only mildly annoying, I’ll give you that; you only made me stop writing every few minutes in class throughout middle school to snap my wrists back in place, but the only other option was to fuse those tiny bones together so I didn’t mind terribly much.

It was only until I hadn’t grown for two years but was still getting growing pains at night, crying as my mom smoothed Sore Muscle Rub over my aching body, that I began to understand just how attached to me you really were. Now that you’re threatening to take even more of my mobility and freedom, it’s time to get off my back.

You and I both know that this is a destructive relationship, and things just aren’t working out between us. You’re keeping me from living my life to the fullest, and I think it’s time you moved on.

What I’m about to tell you is so sixty years ago, but humor me for a sec: I think what you really need is a man. Yeah, that’s right, I’ve said it. You need a man who understands you, who completes you! This man– let’s call him Trey for short (though one day we’ll all know him not as Treatment but as Cure)– this Trey will suit you much better than I ever could. You don’t just need a friend to cling to for support, you need a rock who will be there for you when I never could.

Trey has to be strong and comprehensive, much more sophisticated and understanding than the 5% management kind of friendship I can give you. At any given time, I can only really help you about 5%: I can get up to 30% with pain medications, then another 5% with a heating pad, maybe 10% more with some magical Biofreeze or Tiger Balm, and if I have to move any body part I can help you another 25% of the way by adding some armor! But you deserve more. You deserve a man who can take you by the hand and make you completely satisfied–and I mean really satisfied: this Trey would give you effective collagen.

I know, I know, you don’t believe it can happen, but I do! I have faith that in our lifetime, the power of science will discover a way to give you exactly what you want and precisely what you need, and you won’t need me anymore.

So that’s it, Eileen. I’m declaring our 11-year frenemy-ship over, though I imagine you’ll try to hang around for a while, at least. It’s ok, I’m patient.

All my love,

Rachel