My name is Deanna Brownlee, and I have a de novo case of Ehlers Danlos syndrome. Despite what people assume, this isn’t my fault. I didn’t cause this disease, and I don’t do anything to make it worse. It’s not the result of a terrible diet, and I can’t exercise it away. I don’t need a more positive attitude, and it’s not “mind over matter.” It’s not a psychosomatic illness, it’s not somatization disorder, and it’s not depression. So many are determined to demonize me and blame me. Why isn’t my illness enough punishment for doing nothing wrong?
I was born with this disease, and I will die with it. It is with me every single day in an unrelenting quest to destroy me. It haunts me while I sleep and pursues me when I wake. It contaminates every breath and permeates every moment with a futile struggle.
To describe Ehlers Danlos syndrome is to reveal a creature that wears many hats.
In its most prominent role, EDS is an imposter. The brain fog and constant fatigue make me feel drunk . . . but I didn’t consent to it, and I can still feel all the feelings that people drink to forget.
EDS is also a thief. In the wake of this disease, I’ve lost friends, my financial independence, my education, and any hopes at a career. I have lost housing, I have gone hungry, and it has broken me again and again. Ignorance has permanently damaged my relationships, and my sanity is hanging by a thread. I’m too sick to function, so I can’t earn an income, get an education, or afford health insurance. For 12 years I couldn’t even get a diagnosis because I couldn’t afford medical care. But I couldn’t get disability, either, because I had no diagnosis. But you can’t get a diagnosis without health insurance, which I couldn’t afford, because I’m too sick to work. It took 12 years to get a diagnosis, and during that time, I applied to every indigent program, called every number, sent every email, and scoured every corner of the internet in search of help, and there was none. All I could do was try and fail while my life crumbled around me.
EDS is busy. EDS alone has an entire army of formidable enemies that work together to make life difficult. EDS patients deal with dysautonomia, MCAD, gastroparesis, CVID, lipedema, heart issues, dental issues . . . the list is endless. If one issue dares to abate, five more issues are more than happy to pick up the slack. I don’t get a break, and I can’t take a vacation. Ever.
EDS is ambiguous. EDS varies from patient to patient, and from moment to moment. EDS curriculum in medical schools is inadequate at best, and I have to fight a constant uphill battle just to get appropriate care . . . if I can afford it. If I manage to receive medical care, doctors either don’t believe me, have never heard of it, or don’t understand the disease at all.
I’ll never forget the day I finally got my diagnosis. It was August 29, 2017. A crowd fund donation enabled me to see a renowned geneticist. My friends provided the driving, and it was hands down the best day of my life.
And now, when I see other doctors, I have that official diagnosis. They can’t so easily minimize me, dismiss me, or doubt me. My diagnosis is both my weapon and a badge that I wear proudly. And now, after 12 years, I have a fighting chance at stability.
And that means I have to apply for disability. My first two attempts yielded years and years of waiting, mile-high stacks of paperwork, and endless hours of phone calls, all while I had no way to make any money. And without a diagnosis, it was all completely futile. But now that I have a diagnosis, lawyers actually want to take my case, and I have solid evidence. I used crowdfunding donations to try and get my comorbidities diagnosed, but the doctors near me were no help. Then I decided to use what evidence I had and apply for disability a third time. I officially hired a lawyer last month, and ever so slowly, I am moving forward. I’ve been fighting for stability for 13 years, and I’m daring to hope that i could actually make this happen. Finally.
Much of my life now is more of the same: I still don’t have an income or health insurance, and I’m still drowning in paperwork and research. And I still have no idea what my future holds. It kind of feels like walking a mile just to gain an inch.
I recently attempted to apply for CarePartners for the third time in three years. During my first two tries, no one could even tell me how or where to apply. But I figured it out, no thanks to anyone else. I battled with a 12-page application and 25 pages of documentation. If I qualify, I’d have precious access to a few specialists - and it would be free. Here’s to hoping.
This is my life with a rare disease. This HAS been my life with a rare disease. I’m still making stabs in the dark. I’m still clinging desperately to remote possibilities. And I still don’t know if it will ever be worth it.
My life takes me through cycles. There are times when I can’t cope with a life sentence of bureaucracy. There are times when I dare to hope. And there are times when I don’t even know how I feel. At the end of the day, I can’t afford EDS, but I’m stuck with it. This is all I’ve ever known.
But I always keep going. Even if I shut down for a little while, I always move forward. My only other option is to give up, and I’d rather risk failure than ensure it.
But is it ever going to pan out? Will my effort ever yield results? Am I ever going to have the stability I’ve needed for so long? After 13 years, I’m tired.
The truth is that I’m going to fight this to the death. I’m going to go down swinging. I’m going to succeed, even if it’s the last thing I ever do. What other choice to I have?
The opinions expressed here are not the opinions of Dysautonomia Support Network but of the authors themselves.