So as many of you are probably aware (and are unfortunately hearing this for the zillionth time), I was undiagnosed for 13 years. Throughout the vast majority of that time, I had no health insurance and no income. This was due to several factors:
- My symptoms prevented me from working despite my VERY best efforts
- ObamaCare used tax credits to provide discounted health insurance rates. Because I can't work, I am unable to pay taxes, thus ObamaCare has nothing to offer me.
- My state also chose not to expand Medicaid.
- I was unable to get disability without a diagnosis. Lawyers refused to touch my case, and without health insurance, I couldn't even amass a list of symptoms that might qualify me.
- I don't have credit cards, so I can't just charge a bunch of medical bills to a card and worry about it later.
- My friends are almost as indigent as me, as is my family . . . or they just refuse to help.

Needless to say, this caused my efforts to be agonizingly difficult at best. There were times when I stared homelessness in the face. There were times when I lived out of suitcases. There was a time when I was suicidal. There were times when I had to choose between living in abusive, unsafe homes or being homeless. There was a time when I cried myself to sleep every night for 6 months. I moved around so much that I lost count. The more I fought, the deeper underwater I sank. It all felt so incredibly dark and hopeless.

This continued for over a decade. I lost a decade of my life to futility and despair. I still don't know how I did it.

Then, a few glimmers of hope started to trickle through. I published something online about a movie documenting several undiagnosed patients. The producer saw it, and told me about CrowdMed and U. R. Our Hope. As the years dragged on, I slowly gained access to things like the Marfan/TAAD panel, 3Billion, The Discover Program, and more. Individually, none of them truly panned out. But together, along with my sparse medical records, i began to build my case.

Then it was time to see a geneticist. The closest one was 2 hours away. I have no car and can't afford the gas. My 3 roommates and I all share one car, and they all work. The logistics of this kind of plan was mind-boggling. But I pressed on.

I researched three geneticists in my state. A smaller practice won me over. From there, two EXTREMELY generous friends donated their time and money, and drove me there and back for FREE.

At the appointment, Dr. K noticed things about me that NO other doctor had ever taken the time to notice. She was knowledgeable, friendly, humble, and she was my hero.

She diagnosed me with hypermobile Ehlers Danlos syndrome that day. I just barely fit the criteria, she said.

I'll take it.

She is sending me to another doctor soon, who will be able to diagnose me with all the EDS comorbidities. Her diagnosis, along with the comorbidities, will give me a strong disability case.

My fight is not over yet, and there's still much to do. But the worst of it is behind me. I am finally on the right path. I am ready to completely move past this chapter of my life and start living again.

Thank you all for the support.

Edit: wording