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A Page From My Life With Ehlers-Danlos Syndrome

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I have often imagined what a story with someone like myself as the main character would look like. How would living with Ehlers-Danlos syndrome (EDS) be portrayed? How could someone take a reader into the painful and complicated world of EDS? After asking myself these questions, I had a thought: Why not try to display a “normal” moment of my day in that very way? And so, I did.

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

Weakness plagued my body.

Move, arms. Move.

Quivering, my muscles made a valiant effort and my arm made a spastic and uncontrolled flail to the side. That was not exactly what I was aiming for, but the fact that they still could move was good enough.

Searing pain was spreading from the base of my skull to the top of my head.

What did I even do to cause this?

The likely answer was simple: nothing. I did very little yesterday in terms of movement, but I’m paying for it big time now. Lying on my side, I tried once again to move my lifeless arms to adjust my neck brace. Comfort in a hard collar was something of a foreign concept, but not for lack of trying.

I shifted the front piece over, happily relieving the pressure off of my sternum. A small victory, but a victory nonetheless. Days like this, which at one time were few and far between, are becoming a frequent occurrence as I get older.


For most, 25 is around the age of peak physical condition — a concept I could hardly grasp in the deepest areas of my imagination. To move and live without pain consuming your entire body seemed impossible. Yet for most, that was normal.


I stared at the closet doors, the piles of clothes strewn nearby that I hadn’t felt well enough to put away.

Why is this my life? What will I ever accomplish?

Fear plagued me more fiercely than pain or weakness ever could. The reality is, I will only get worse. This day, which feels like a bad day, could in fact be a day I look back on in the near future as a good day.

Pain throbbed throughout every area of my head now. With each heartbeat, waves of fire and knives flowed through every vessel in my skull.

Come on, neck. Just hold up my head properly for once.

As I did my best to continue to shift into a less painful position, I felt it. With a crunch that rivaled the sound of walking on broken glass, a wave of pain raged through every inch of my body and consciousness. For the first few moments, I was frozen. Darkness clouded my vision and the world went quiet as pain seared through me so deeply I felt as though I may implode.

My breathing stopped. Breathing took too much mind power. Every part of me had to focus on the task ahead. I had to find a way to put my hip back into the socket or the pain would never end.

Mentally bracing myself, I slowly began to shift, allowing the displaced hip to slide to the proper direction and…crunch.

Silent screams swam through my mind and body as my hip found its way back to the place it so frequently escapes. Finally, able to breathe again, tears poured from my eyes, slipping through the small openings between my jaw and the padding of my neck brace.


As the pain began to decrease in my hip, the frustration within me started to grow. The tears streaming down my face changed from pain to defeat pouring out of me.

I’m 26. I’m 26. I’m 26…

the author laying in bed with her cat

The desire to be normal built up in me, and I let myself cry. The more I cried, though, the more pressure built up in my head, causing what felt like an ice pick wedged in my brain to advance further in.

Focusing on my breathing, the crying stopped and the pressure lessened.

I can either be mad, or I can carry on.

I can let this consume me and allow it to win, or I can choose joy in the midst of it all.

Choosing joy was the only option, I decided. As I carefully settled onto my side, I stared at the photos I strategically placed beside my bed. Friends and family smiled back at me from their places in frames. I could feel my strength and willpower forming once more.

Even though my body was against me, the world was not. My loved ones were not. God was not. With so much to be thankful for, my body only had the power to bring me down for a moment before the good that overflowed in my life raised me  up again.

Originally published: June 10, 2019
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