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What My Ehlers-Danlos Syndrome Feels Like as I Type This Blog Right Now

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Right now as I write this, the words are morphing across my vision as they’re added to the page; a dizzying tango alternating from being blurry, to doubled, then perhaps wavy, almost as if they’re sitting out on the pavement in the hot, summer sun. I often have to close my eyes to give them a break and also make sure their little muscles are tracking properly.

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

In addition to that, as I reach for each key, I often have to retrace my steps, hit the delete button, and then stop again when I realize I missed that key entirely. Instead of correcting my typo, I just added to it since my depth perception and proprioception are always a bit off. At least typing this story doesn’t have the consequence of running into the occasional wall, mistaking it for the doorway I thought I was walking through.

But I digress.

Back to the troubles of typing: I’m wearing my finger splints, but even with their help I have to keep in mind how frantically I’m typing, how much pressure I’m applying, what position I’m holding my hands in — I don’t want to dislocate a finger or some other bone in my hand.

If I sneeze or hiccup, I wince with pain and make sure I haven’t dislocated a rib. I can’t remember the last time I made it a day, or even a few hours, without a dislocation or subluxation (partial dislocation). I hardly ever sit at a desk because that simply doesn’t provide enough support for my back. I prop pillows all around me and keep thinking of what core muscles I need to engage to keep my spine aligned and my hips in place. My muscles spasm from the effort and I ache all over.

I am aware of a warmth and throbbing in almost all of my joints, a pain that feels like it’s spreading across every fiber of my tissue and muscles, because it is. There’s a defect in my collagen, the protein that acts as a major building block in the human body, and this makes all of me extra stretchy, which causes micro-tears to form and get bigger with every slip of every joint. The joints get more aggravated, the bones knock together and get bruised, tiny fractures start to appear, you name it. And the nerves nearby aren’t really fans of all that. The pain is always there, at various strengths, throughout my entire body.

Guess what?

All of that is background noise compared to my most prominent symptom. My head is too heavy. I can barely hold it up. And when I do, I am drastically more dizzy and lightheaded than when I don’t. I feel this weird empty feeling at the back of my head and near my forehead — an odd sense of pressure — almost like I’m really far underwater, or in a big, echoing chamber. I feel disconnected from my limbs. I feel like I’m falling backwards, or floating upwards, or a bit like there’s an accordion in my head, stretching and squeezing unpredictably.

That little bump right at the base of my neck, you know that place where it stops being your neck and turns into your back? It feels like someone has their hand placed there, and they are pushing down on me as hard as they can, applying all of their weight. On bad days, it also feels like two nails nearly the size of railroad spikes are being driven between my shoulder blades, right along each side of my spine. At the same time, I have that “fingernails on a chalkboard” sensation shooting up and down my entire spine, a sickening, inescapable sensation.

After each sentence I have to pause and support my neck with my hands to offer slight and temporary relief. I might need my neck brace to help me out for a bit. Even sitting for the time it takes me to write a few paragraphs can be too long sometimes, and I opt to lie on my side. I might try to continue typing with one hand — because I’m on a roll, dammit, and I don’t want to stop just yet!

Eventually I have to decide whether or not I’m physically capable of continuing with my writing today. Or maybe I’m feeling too distracted by all of this and can’t seem to get a proper train of thought out, and lay it aside for that reason.

This is what Ehlers-Danlos syndrome feels like to me on a typical day. There are other days where writing simply isn’t an option, where getting out of bed seems like a painful, impossible task (and sometimes it is, depending on whether or not I can move the left side of my body). Sometimes I have massive headaches and more prominent neurological symptoms and I need to make sure that I’m not leaking any spinal fluid. But even on bad days, I end up doing between 30 minutes and 2 hours of physical therapy, just to keep my body from falling apart so quickly.

Despite all this, I write. Because of all this, I write. I am not my Ehlers-Danlos syndrome. It is, however, a huge part of me. It is a part of me that’s been an uphill battle to accept. It’s something that has really shaped who I am as a person, what my career options are, what my free time activities are. It is something I’ve had since I was born. And it is something I will have until I die. It is also something that has always been a huge question mark to me, as well as most of my doctors.

But I want people to know what I’m dealing with. I want people to understand, or at least notice that there is a lot going on in my body that the untrained eye (or even the trained one) cannot see. That despite that, the struggle is real. Writing gives me this platform, this stage where I can let out my emotions, portray something, move people, get them thinking.

I want there to be a day where I don’t have to explain my genetic connective tissue disorder to a new doctor, but rather where more doctors will be able to identify it in other people and help them sooner than they were able to help me. It took over five years of actively searching for a diagnosis before I find out about my EDS, and that needs to change.

If I have to think about that much while simply typing on my laptop on a good day, imagine what it’s like for me to stand. To walk. To lift something that weighs kind of heavy (or kind of light even). To open a door. To pick something up off the floor. To climb stairs. To do laundry. To cook.

Are our definitions of an easy task different? Are our definitions of “lazy” different? All of those things take a massive amount of effort for me, and some days I simply can’t do them.

I’ve been called strong by many, and I thank them for their compliments, I truly do. I feel like I’m only as strong as I am because I have so many people supporting me and telling me what an awesome job I’m doing. But the number of times I’ve been called strong is practically non-existent in comparison to how many times I’ve been called other not-so-nice things.

I’ve been called lazy and weak by countless numbers of people. Crybaby. Attention-starved. Liar. Drama queen. Master exaggerator. The list goes on and comes from an arrangement of strangers, acquaintances, colleagues, friends, and even family. But all of these people have one thing in common regarding me: misunderstanding. And perhaps a lack of empathy. They have not felt what I feel. Maybe they don’t know my story yet. Maybe they can’t see my pain because I’ve learned to hide it with a smile. My experience is not what they experience, so maybe they simply didn’t know it exists.

I’d like to fix that. I want people to know it exists. A few other things would be nice as well: Acknowledgement. Acceptance. Respect. All I ask is that you just try and step into my orthotically enhanced shoes and see things from my perspective before you make a judgement of me and my character. I will do the same in return.

Thank you for reading, and 10,000 more thanks you’s for taking the time to look at life through my eyes for a moment.

Originally published: July 12, 2016
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