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Dear Ehlers-Danlos Syndrome, Here's What You've Overlooked

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Dear hypermobile Ehlers-Danlos syndrome (hEDS),

You came to me embedded in my DNA. You didn’t show yourself right away, you lurked in the background; silently chipping away at my collagen, leaving a bewildered kid wondering why she’s always the one getting hurt.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

You didn’t want to be recognized too easily though. You wanted blood tests, ultrasounds, X-rays, MRIs, orthopedic surgeries, and me sitting up all night questioning whether there was really anything wrong with me at all. You wanted 37 years of my life before you’d give up your name.

I’ve got your name now, but as your last one finger salute, you don’t have a cure. You and me hEDS, we’re stuck together for the foreseeable future. There’s one thing that you overlooked when you decided to slip into my DNA – you failed to realize that you’d chosen a fighter.

Do you scare me? Hell yes you do, not that I’d ever admit that to you. You scare me every time I’m reminded that you’re trying really hard to destroy my body. You scare me when I am reminded that you are degenerative. You scare me when my ankles, hips or knees sublax when I’m walking, because you’ve made my body prone to falls and injury. You scare me when I consider that the man I married, the love of my life and the father of my child will someday have to become my caretaker, much sooner than we’d ever thought. You scare me when you make my son deal with way more than a 14-year-old should have to deal with. You scare me when I stand up too fast and my vision greys out because all of my blood is now located in my feet. You scare me when you make me feel utterly useless. You scare me when my doctor gently reminds me that I will eventually lose much of my mobility to you. You scare me when you make me question, even for a single moment, if giving up would just be easier. You scare me in a dozen different ways, every single day. You sometimes make me fear my future.

Even though you scare me, I need you to know that I refuse to let you be my master. I’m going to live my life on my terms. You can make my life difficult, and you can make me feel defeated when I fight the same battle day in and day out, seemingly with no progress. When you kick my feet out from under me, you can tempt me to just stay on my knees – but you can’t stop me from getting up again, even if you sometimes make wanting to get up really freaking hard. 

You think that you can control me – and oftentimes you do. There are many times that you get to dictate what happens with my day. You can derail the best laid plans. You can make sure that I’m almost bedridden for days, and sometimes weeks if you’re feeling particularly snarky. You can make sure that there is not a day in my life when I’m not in pain. You make sure to remind me that you’re there when I sneeze and pop a rib, or my special favorite, when the bones in my feet sublax. What you don’t realize, is that you can only control my body, and I am so much more than just a body.

There are loads of things that you can’t take from me. You can’t take away the pride that I have in my son, or the joy that I get watching my little boy grow into a wonderful, loving young man. You can’t take away the mile wide grin that my nephew gets whenever he sees his “Teetee,” which means auntie, just in case you can’t speak toddler. You can’t take away my love for my husband, and you definitely can’t take away the way that that man still makes me fall in love with him more and more every single day, even after two decades together. You can’t take away the way that I can talk to my sister about anything, or the pleasure I get from seeing my parents. You can’t take away the bond that I have with my brother, or the enjoyment of having a glass of wine with my aunt. You can’t take away the love that I have for my in-laws. These are intangible things, and no matter how much you try to take from me, these are things that you don’t get to have.

I’d like to claim that I’m not scared of you anymore, but we both know that that’s a lie. You’ll continue to scare me, every time you show a new symptom, like that time that you took away my ability to eat for a couple of weeks. Only one of us had fun that time, and it definitely wasn’t me. What I can tell you is that I look at this as an ever escalating battle. For every thing that you throw at me, I struggle to adapt and overcome. I liken myself to the quote from “Lilo and Stitch,” but paraphrased – my body may be weak and broken, but I’m still good.

Ehlers-Danlos Syndrome, you will continue to try to take my body, but you can’t have my spirit – that is mine, and mine alone.

Enjoy ravaging my body while you can hEDS, because one day, we’ll have better ways to manage you, and eventually a cure. It might not be today, or tomorrow, but someday the people whose lives you’ve tried to take over will have the last laugh, and everyone knows that the last laugh counts the most.

Until then, you may win some battles, but I’m bound and determined that you won’t win the war.

There is one thing that I can genuinely thank you for. Thank you for galvanizing me in the fires of pain. You’ve unwittingly given me a purpose. You’ve rekindled my love of writing. I no longer dream of writing the next great American novel. Now I dream of being a freelance writer, who writes about you – who writes to educate people and spread awareness. This is the balance to what you continuously try to take from me. Even in this, you’ve made a mistake.

Once you’ve given me something, it’s mine to use how I see fit – and I intend to continue to spread awareness, and continue writing about you, until we take you down. 

Until we part ways,


Getty image by Igor-Kardasov

Originally published: February 21, 2018
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