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Why It's Important for People With Ehlers-Danlos Syndrome to Speak Their Truth

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“What is Ehlers Danlos Syndrome?” the nurse asks.

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

“Oh, it just means I am really flexible.” I say quickly so the procedure can begin. Immediately as the words escape my mouth I cringe and berate myself. How do I expect to make a difference for fellow EDS Mighties if I can’t be more in-depth like we deserve when I explain what it is?!

The world fades to black as the anesthesia blissfully knocks
me out.

Hours later at home I think of all the things I could have said.

“I also dislocate 20 times a day.”

“And I have really severe GERD because of it.”

“It means I wake up in the middle of the night vomiting.”

“Everything is flexible too, organs and all. Sure it sounds great but it is not.”

“Popping 50 times a day.”

“Acid reflux, acid reflux, acid reflux.”

“I also dislocate limbs as I sleep. Ankles, wrists, all the way to ribs and neck.”

“Wearing a bra = constant rib dislocations as I breath in and out.”

“Basically constantly feeling like you rolled or sprained all your joints to put it simply.”

There I was with the perfect opportunity to enlighten someone
to this incurable thing that many of us with it will have to live with not only for the rest of our lives, but also pass down to our kids and I had blown it!

So much of getting the recognition we need for people to be
understanding as we struggle throughout this life is all because one of us had the courage and follow-through to teach someone who has no relationship to Ehlers Danlos Syndrome what it all entails.

“Why do I do that?!” I ask myself.

Simply because I am used to living this way.

For 23 years I dealt with all of the symptoms, plus a lot more from my 10 other conditions. I just did it. Nobody understood and I never asked them to. Nobody questioned me because I didn’t let them. I knew what I felt and that was that. Life goes on, and you have to too.

At the delicate age of 6 I was waking up in the middle of the night with leg pain so excruciating and sharp, I would alternately sob and scream, waking frantic parents and annoying my sister as she tried to sleep.

“Growing pains.” The doctor declared.

But they kept happening. And I clearly was not getting any taller. With the length and amount of pain I should have been 6’6”! “Rolled ankles” happen weekly in elementary and middle school to the extent that the nurse and I had a system worked out; I go in in the morning as soon as I get off the bus and she wraps my ankle and I go about my day like usual. Being in pain was all I knew. We both just assumed I was one of those people who was prone to constantly roll ankles (not wrong technically).

My Ehlers Danlos Syndrome was even more exacerbated because of the fact I was born with twisted leg bones from the waist down. No doctors caught it so I was considered an extremely fussy baby because I would not stop crying. Now we know it was because of the pain of learning to move and then walk with bones that were twisted top to bottom. I had surgeries to correct them at 15 and after the second surgery where everything went wrong, was diagnosed with AMPS that was rare full body pain that only ever got worse. There was no treatment or medicine to fix or even help, so I went on my merry way learning to deal with all the pain that slowly increased and caused me to cut out more and more daily activities. So many things I loved gone overnight as I slept tossing and turning, unaware of where my life was leading.

It was only when I was diagnosed a year ago that all of it
clicked. With all of my new eye-opening diagnoses I was soon able to put each pain and miserable struggle into boxes, so I could better minimize future pains caused by various activities.

On the brilliant recommendation from my mom I did some
occupational therapy where the incredibly life-savingly-knowledgeable therapist had read and knew all about Ehlers Danlos Syndrome. That was where I learned how to not just walk and move in a way that I wouldn’t dislocate with each movement, but I also learned  more detailed things such as learning how to shower and dress a certain way to save myself energy and pain. There was even a whole book on how to work through Ehlers Danlos Syndrome to make it better and get back some of your life!

Because of my other diagnoses the book wouldn’t actually work for me, but with the knowledge I gained from my appointments I started to retrain myself how to walk differently, pick things up differently, and even how to sleep differently! I now sleep with arm splints so my wrists dislocate as little as possible. It has been life-changing!

Reducing certain movements and knowing the how, when, where,
and why of it all has given me that power to work through it and change my thinking completely. Now, worrying about how to move so I don’t cause extra dislocations is muscle memory. I have the knowledge but of course, life still happens and I am always in a flair so it is still a gamble how I will feel each second let alone each day.

That is why it is so vital that we teach and share our knowledge with each other about what we deal with. No more of this nonsense of keeping a stiff upper-lip where we keep all our pains and struggles to ourselves until we end up in a hospital. No more accidentally caused pain by medical personnel because we don’t want to sound like we are complaining when mentioning our diagnoses and proneness to over-extending. No more of that.

Because from here on out I am going to open my mouth and stand up for my fellow Ehlers Danlos Syndrome survivors and warriors! For all of our ancestors who suffered in silence not knowing, and for all those next generations who will show symptoms but no one around them knows enough to help, I will speak for them!

Will you?

Photo credit: simonapilolla/Getty Images

Originally published: February 23, 2020
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