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by Erin W.
I was diagnosed with hypermobile Ehlers Danlos syndrome (hEDS) when I was about 22 years old. This diagnosis came after years and years of frequent injuries, unbearable pain, and diagnostic mystery. At the age of 27, I continue to battle chronic pain due to joint subluxations and micro-movements, which have resulted in early joint degeneration. I write this article as a way to bring awareness to this seriously misunderstood illness as well as the numerous pain syndromes that are often comorbidities of Ehlers Danlos.
EDS has an impressively wide array of symptoms and associated diseases/illnesses, though to each sufferer it affects them quite differently. This makes medical diagnosis and treatment much trickier; most aren’t properly diagnosed until their late teen or early adult years (if at all). For me, my biggest challenge with Ehlers Danlos is stability or rather lack thereof. Throughout each step I take, each task I perform, and each movement I make, my body is fighting to keep my joints stable – to keep my bones and muscles together and to keep my body in proper alignment. My knees, spine (cervical, thoracic, and lumbar), hips, shoulders, and elbows are my greatest issue and source of pain. Because my body is fighting so hard every day to stay together, I’m exhausted nearly every second of every day.
The effect of this chronic pain, fatigue, and instability have had on my mind and each and every day is profound. It affects my overall quality of life. Over the last three to four years I have gone from chronic pain several days per week to daily chronic pain. I honestly cannot remember the last time I wasn’t in pain. Due to the instability of my joints, I regularly battle chronic dislocations, subluxations, and early degenerative joint disease. To the outside world, and even my own family, I look like a happy and well-adjusted woman. I have a good job, a wonderful marriage, a beautiful daughter, a house and the list continues on. I certainly have a lot to be grateful for and I am.
What those around me don’t see is my daily, chronic internal struggle.
At a time in my life when I want to be focusing on my family and career mobility, I am worried about whether I should bother continuing my education or searching for a new career because of the likelihood of early disability. I also have to set aside my passion and desires in regards to a career because I have to consider what’s realistic – for me and my health. Regardless of what my mind is capable of, when considering a new job or career move I have to consider: 1) will my insurance be enough to cover the copious amounts of specialists I see; 2) will my new boss/company be flexible and allow me to leave work for appointments; 3) will this job be close enough to my specialists; and 4) how will this job affect my back – does it require sitting for the majority of the day? This always leaves me feeling defeated and utterly hopeless.
Every day, and several times during the day, I have the thought of whether or not it’s all worth it. I think about where my body will be in 2, 5, 10, or even 20 years and I want to cry – often times I do. I honestly don’t wish to end my life, but I often wonder if I can really live like this much longer. The thought crosses my mind at least three to four times a day. This frustration leads to more appointments with more specialists who all say the same thing: “you have Ehlers Danlos – this is just how your life will be.” Getting through each and every day is a struggle in and of itself, so looking into the future for me isn’t possible. It quickly becomes overwhelming and feels just so unrealistic.
To make matters more difficult no one else understands what it’s like. Sure, my family tries to understand but based on their positive, upbeat attitudes you can clearly see they don’t. They don’t understand that I’m not being a pessimist when I question whether spending money to continue my education is practical or really worth it. I’m not being a pessimist when I consider moving to a new house with living all on one level. I’m not being a pessimist when I go to bed early because I say I just can’t handle life right now. I’m not depressed, I’m not moping, and I’m not looking for sympathy. The struggle of life is something that typical, healthy individuals just don’t understand.
I will say that I am fortunate to be as “high functioning” as I am living with EDS. Some of my peers are hospital-bound for weeks and even months at a time battling infections and starvation, and some use wheelchairs or are unable to leave the house due to physical limitations: all caused by EDS. Despite having this horrible disease, we are all motivated to keep ourselves moving, educating medical providers for early diagnosis and treatment, and to keep living the best lives we can. It’s almost never sunshine and rainbows, but we make it work; we make it happen. Every day we fight gravity, our doctors, and our bodies just to keep going. That’s why we call ourselves EDS warriors. We are some of the strongest and toughest people you will ever meet.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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