My story is one that spans thirteen years and counting. It is a story of desperation, destitution, and near homelessness. They say “whatever doesn’t kill you makes you stronger.” The truth is that it scars you at your core.
My earliest memory of Ehlers-Danlos syndrome was when I was in eighth grade. This was before the disease had a name: before the beast was fully grown.
I was late to school every day because I was too exhausted to get out of bed. Every day that I walked in, I could feel all the other kids staring at me, judging me. It was a rotten way to start each day. But how could I have known that the difficulty was only beginning?
As the years passed, it became harder and harder to sustain my education. This continued throughout college until the college had to ban me because I just couldn’t pass my classes.
At this point, I still had no idea what was happening to my body. I was determined to make something of myself, however, so I decided to try my first full-time job. I also knew that, as long as I had this job, I had my precious health insurance. Unfortunately, it was just more of the same struggles. I retained thirty pounds of fluid. I started having heart palpitations. I was so exhausted that I would fall asleep sitting at my desk with my hand on the mouse. Sometimes I would just sit in a bathroom stall and weep because I felt so terrible. Eventually, they fired me because I simply could not function.
And so began the struggle to keep a roof over my head. I bounced from house to house, unable to help with bills, and surviving only as long as the latest “landlord” would tolerate me. I lived out of my suitcases for years and narrowly avoided homelessness. I applied to every indigent care program and financial assistance program I could find, including the Affordable Care Act. All of them were blatant failures.
Unfortunately, the Affordable Care Act uses tax credits to offer subsidized health care. But because I cannot work, I cannot pay taxes, so the ACA has nothing to offer me. I tried to appeal, but it didn’t work. What’s more, the ACA allows each state to choose whether or not it would expand Medicaid. My state chose not to expand. So I had to either win my disability case, which is almost impossible, be blind, or get pregnant in order to get the help I needed. And I refuse to bring a child into this world just to get the help I need. The way to solve one problem is not to create another.
When my best friend’s husband kicked me out, I went to live with a friend from college. I’ve been here for 7 years, thankfully. In 2017, a GoFundMe donation enabled me to see a geneticist, who diagnosed me with hypermobile EDS (hEDS). But I’m not back on my feet yet. I have been fighting for disability for thirteen years. This is the fourth time I have applied. I’m amassing medical evidence however I can in order to substantiate my case, but it’s not enough. I am currently living on donations.
I have gotten a lot of help in the past, but my work is still not done. Donations have enabled me to also get diagnosed with gastroparesis, IgG Subclass Immunodeficiency (a primary immune deficiency), and I am working on more diagnoses still. There are talks of Cushing’s disease, POTS, lipedema, and more. Every day requires intense planning to make the most out of my donations and my healthcare.
What I need most now are health insurance and an income. That’s what I’ve always needed. But I also need empathy, compassion, and emotional support. Having people on my side goes a long way, too. Throughout my diagnostic odyssey, others have mocked and belittled me at every turn, all because my disease once did not have a name. Just a few of those pleasantries:
* “You’re not sick! You’re just a lazy b****!”
* “IT’S MIND OVER MATTER!!!”
* “Why don’t you just GET A JOB!?”
* “You just need to get out more.”
* “Well, if you would quit sleeping so much . . . ”
* “All you have to do is go for walks.”
* “If you wouldn’t eat so many cheeseburgers and pizzas . . . ”
Friends, family members, and medical providers alike have added their two cents. It’s no wonder so many zebras experience depression and trauma!
