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Admitting I’m Scared of My Future With Ehlers-Danlos Syndrome

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In the last couple of years as I’ve learned more about Ehlers-Danlos syndrome, I have considered myself lucky. I’m in my 30s and up until the past year I’d never experienced a dislocation. My chronic pain only became worse in the past few years. Not to say I didn’t have some aches and pains throughout my life, but it wasn’t daily constant pain until the last few years.

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

I’ve read in posts on The Mighty or in Ehlers-Danlos groups on Facebook where people just roll over in bed and dislocate a rib or a hip; I counted myself lucky that I didn’t have that problem… yet. That “yet” is always there. And that “yet” is getting closer. And if I’m honest, I admit that it scares me.

I’ve had subluxations many times throughout my life, even before I knew that’s what it was. It’s a common occurrence now for a joint to slip, sometimes painfully. I have dislocated my shoulder three times in the past year. I dislocated something in each foot in the last few months. I am now having trouble with feeling like I’m about to dislocate something when I stretch and often become scared to stretch even when I feel I need to. I’m starting to have trouble with my knees or hips subluxing in bed and being unable to find a position that will keep them in place. I’ve had that problem with my shoulders for quite some time but it scares me now that it’s happening with other joints.

I recently gave in on using braces when needed, to hold my body together. I bought a rollator walker not long ago because I realized it would be more helpful than my cane sometimes and would put less stress on my shoulder than my cane does. I haven’t used the rollator yet but I’m starting to accept that I need it sometimes.

it's ok to be scared sometimes nobody is brave all the time written on paper on woman's legs

Tonight I admitted to my boyfriend that it scares me, how it’s been progressing more over the last year. Not that I sit and stress over it constantly, but I can’t help noticing whenever something new happens, when a joint that never misbehaved starts misbehaving, when I have to be more and more careful with my movements to avoid injury.

I have no way of knowing if the progression will stay slow or if it will speed up. It has seemed fast over the past year. They say to “face your fears.” Well, I have no choice in the matter, I have to face this fear because this is part of my life. I’ve become so used to pushing through, keeping positive, not letting my illness control my life, not letting others see the worst of it.

To admit fear, even to someone who does see my worst days, I guess was a step toward acceptance, a step toward facing my fears. I can only take it one day at a time, and no amount of worry will change the future, but I have to remember it’s OK to be scared sometimes. No one can be strong and brave all the time.

Originally published: January 7, 2018
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