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Despite the Frustrations of EDS, I Still Have Hope for 'One Day...'

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The thing about having a condition like mine, Ehlers-Danlos syndrome, is that you find yourself perpetually frustrated. There isn’t a moment when you are not exhausted, in pain and struggling to focus. But with that comes the perpetual desire to do the things that healthy individuals are able to do – especially when you’re in college. You are constantly aware of the state of your body, but you cannot just stop and not do anything. You cannot have an exhausting day of classes and decide, “OK, well, I can’t do that again” when all you did was walk to one or two classes and listen and take notes.

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

To many other healthy students, that’s not a big deal. But with chronic illness and chronic pain, there is nothing, not one thing that is not a lot of work, doesn’t take up a lot of your limited energy and won’t contribute to the pain you will feel haunting you as you try to get a good night’s sleep. Those don’t really exist for you anymore, because on the nights when you are lucky enough to have your medication work, your pillows in the right spot, not get suddenly dehydrated in the night – those rare nights when you truly sleep all night, you wake up in the morning stiff, achy and sometimes mysteriously swollen because you stayed in a single position for too long and now your joints and muscles are fighting back.

And see, you can never really get used to these things. You can never truly become numb to your body. This constant presence of nagging little aches and shooting pains only motivates you to do even more research. You want to find out if there have been any new developments in treatment/care or even just plain understanding of your illness since the last time you researched it.

But, as you go from just searching “ehlers danlos syndrome” to “how many people in the US have EDS?” to “treatments for chronic pain,” each time moving in and out of specificity to generalization searching everywhere for answers, you come to realize, you’ve read this all before. Several times. You could recite this word for word if someone asked you to. “There is currently no specific treatment for Ehlers-Danlos syndrome.” “Some with Ehlers-Danlos syndrome benefit from physical therapy, concentrating on strengthening exercises.” “Illnesses associated with EDS are…” It’s all the same information you’ve read a thousand times over, from the day you were diagnosed to today – it’s the same searches every time.

At first you searched every day, then only when the pain and discomfort was really bad. But there comes a point where you just need answers. You need to know that someone, somewhere with EDS is benefitting from an EDS-conscious doctor. A doctor who is willing to work with them and try things out and improve their quality of life. Because even if it’s not you, and the treatment is miles away and the doctor doesn’t work with your insurance, there is something over there that is working. There is someone with the expertise you are desperately seeking who is fighting in your corner. There is a hope that the burden will be lightened for yourself and your loved ones.

I hope that hope never diminishes, no matter how many times I read that my illness still confuses many, no matter how many times a doctor tells me there is nothing they can do. It’s all the same information, but one day, it might be different. And on that day, maybe I will be able to relax. Maybe, on that day, I will feel confident to walk further than yesterday, I will be more assured in my motions and my daily decisions. Maybe, on that day, I will be able to say, “Mom, so I read this article…” and have it not follow with the ways in which my body may continue to degrade. Maybe, on that day, I won’t wince at my laughter, feeling the pain of my jaw as it pops and slides out of place. Maybe, on that day, I can find peace.

Thinkstock photo via AntonioGuillem.

Originally published: October 21, 2017
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