Sometimes, hindsight is 20/20. And when I think back on my life, I realize that I’ve always been sick. I just didn’t see it at first.

When I was growing up, I was always the sick one. When I was two, I had a bowel obstruction that nearly killed me. I had chronic ear infections well into my 20s, and I still have chronic bronchitis, even though I’ve never even touched a cigarette. I also struggled throughout my entire academic career. My siblings sailed through school without an issue. I, on the other hand, struggled with the material every single day. Everyone around me thought I had a learning disorder, but they had no idea how wrong they were.

Then it became a daily struggle just to get out of bed. By the time I was in 8th grade, I was late every day. It’s not that I was lazy; I was just that tired. No matter what time I went to sleep the night before, every morning was the same futile struggle. It continued throughout high school, and I just barely graduated.

College was no better. My brain was not absorbing any of the material, and I constantly dropped classes or barely passed them. I was constantly sick, I was exhausted mentally and physically, and I was completely overwhelmed. There were times when I was so exhausted that I could barely even walk to class . . . but I pressed on. I wasn’t going to go down without a fight.

I started to realize that something was really wrong, so I decided to go to the doctor. I was a full-time student, so I was on my mother’s HMO health insurance plan. But most of the doctors in the small college town only accepted PPOs. I managed to find one doctor, but he was unhelpful. He barely even listened, and did nothing more than throw pills at me. When he stopped accepting HMOs, I could no longer afford the visits. That moment marked the beginning of my 11-year undiagnosed journey.

I continued to struggle throughout college, but my grades and my health only got worse. Eventually, the college banned me. I lost my health insurance and my chance at a better life. I had no idea what to do.

At this point, I had no money, no health insurance, and a mysterious disease. The only way I could get health insurance was to try working one last time. After a few months of searching, I found a simple desk job. I felt a glimmer of hope for the first time in a while. But within a week, I felt my body shutting down. I wasn’t learning the training material, I wasn’t getting any faster, and my body was retaliating. My legs and feet retained 30 pounds of fluid, I started experiencing heart palpitations and dizziness, and I was so exhausted that I started falling asleep at my desk. There were moments when I had to go to a bathroom stall to weep because I was so exhausted.

But I pushed on, because I had my precious health insurance. And I went to the doctor every chance I had. I had CBC blood tests, a sleep study, an EKG, an echocardiogram, an exercise stress test, and more. The only issue that any of these tests showed was mitral valve prolapse, tricuspid valve regurgitation, and elevated platelet levels. No one seemed concerned, and no one knew why I was having these issues. And they still didn’t account for all of my symptoms.

Eventually, my boss saw that I was struggling, so she asked for a note from my doctor that would explain my poor performance. So I went back to the doctor. When I asked for a note, the doctor tested me for mono, which was negative, and because of that, refused to write the note. After 4 months, my boss fired me.

I lost my health insurance once again, so I applied for disability. It has been an endless headache involving red tape, paperwork, phone calls, and appeals. I applied back in 2008, and the fight is still not over. In the mean time, I moved around constantly, living out of suitcases and staying with people as long as they would have me. It was also during this time that I started making phone calls to see what my options were. I needed in-depth diagnostic care, but no one could help me. I called every hospital, clinic, and charity program in the state. But it was all futile. As one lawyer explained it, “Without a diagnosis, you have no hope of getting disability.”

I had no health insurance, so I couldn’t get a diagnosis. But I couldn’t get a diagnosis without health insurance. But I couldn’t get health insurance, because I couldn’t work. So I applied for disability, but I couldn’t get disability, because I had no diagnosis. It was a brutal catch-22 with no solution. I was hopelessly stuck. My whole life was on hold, and there was nothing I could do about it. I collapsed into a deep depression and sobbed myself to sleep every night for six solid months.

To make matters worse, I told my family that there was something wrong with my health. but instead of being supportive, they dismissed my concerns.

“It’s mind over matter!” insisted my mother.

“You’re just a fat, lazy bitch!” yelled my mother’s boyfriend.

“You just need to learn to drive,” suggested my father.”

“You just need to quit sleeping so much,” offered one aunt.

“You just need to exercise,” said my uncle.

“You’re not going to get free healthcare,” concluded my aunt. “You just need to go to a clinic,” she said later on.

“It’s all in your head,” one friend decided.

“You just need to get out more,” said another friend.

I didn’t have time be hurt. though. I remembered a program called GradyCare from Grady Memorial Hospital. In order to qualify, however, you have to be a resident of one of two nearby counties. I did not live in one of those counties, but one of my college friends did. So I called her and explained everything. After several months of delays, I moved in. But it wasn’t the fairytale ending that I thought it would be. My friend resented me because I wasn’t unable to help pay for anything, and we fought constantly. She even kicked me out several times. But I managed to go to Grady for two years. I saw primary care doctors, gastroenterologists, dermatologists, hematologists, rheumatologists, cardiologists, and everything in between. I had an endless list of tests, and none of them ever provided an answer. Eventually, we lost the apartment. I had to move once again, and I lost my health insurance yet again.

Some months later, I found out about another indigent patient program. I submitted over 30 pages of documentation and fought for well over a month. In the end, they rejected my application because “you already had all that testing done at Grady.

Then, the President enacted the Affordable Care Act. I was sure this new law was going to save the day. The very second the website went live, I was at my computer, ready to register for health insurance. I fought for several months to get health insurance under the new law, but I fell through the cracks again. Ultimately, I learned that the new laws used tax credits to offer discounted health insurance rates to Americans. I was too sick to work, so I didn’t pay taxes. What’s more, the laws allowed each state to choose whether or not it wanted to expand Medicaid. My state chose not to, and I had reached another dead end. When that idea didn’t pan out, my roommates gave up and couldn’t afford to let me stay there any longer. So I had to go.

At that moment, I almost became homeless. I contemplated a life on the street, and wondered how long I would survive before someone raped or killed me. At the last minute, another college friend of mine and her husband agreed to take me in. They drove several hours one way to pick me up. We packed the car with all of my possessions, and we drove to a new city. When I got there, it was the first time I felt safe and wanted.

For many more months, I fought to get back on my feet. Eventually, I found a specialized hospital in Atlanta that works with the Mayo Clinic. I used my entire life savings plus a GoFundMe donation to purchase health insurance on my own so that I could see a doctor there. I was able to afford just one month of health insurance, and there was just one appointment available during that time. My roommates and I drove several hours one way, and I saw the doctor. She was unable to diagnose me.

I continued to struggle through the pain and sickness for months. There were emergency room visits, sleepless nights, and pain medications. Through the good times and the bad, I marched on, undeterred.

While everything else was happening, I continued to research my symptoms and scour the internet for possible leads. One disease kept showing up: vascular Ehlers-Danlos syndrome (vEDS). It stayed in the back of my mind, and the more I researched, the more it seemed to be the correct diagnosis.

Then I found a local doctor’s office that gives discounts to uninsured patients. Within a few weeks, I had all the paperwork I needed to apply for the discount program. I submitted it as as soon as I could and saw the nurse that same day for my baseline assessment. But when I explained what was happening, it all fell on deaf ears. She just kept mumbling things like, “We aren’t equipped to deal with this,” and “You need a specialist,” and “I don’t even know where to start.” I pleaded my case as best I could, and she reluctantly agreed to schedule me with the doctor for my next visit.

In the mean time, I applied to two medical studies from Rare Genomics Institute that would provide genetic sequencing to participants at no cost. After initially accepting me into the first medical study, they revoked the acceptance because “a doctor has to submit the request for the genetic sequencing first.” I got the very same result when I applied to the other study.

After two months, it was time to see the doctor. She listened to everything I had to say, and I must have talked for an hour.  She was so welcoming and so helpful that I couldn’t wait to see her again. Ultimately, she agreed that I might have vascular Ehlers-Danlos syndrome. But when I checked out at the front desk, I found out that she was moving to a different facility. I scheduled my next appointment with a different doctor and hoped for the best.

Two months later, I met my new doctor. He turned out to be just as kind and just as helpful as my last doctor. At our first appointment, we discussed my case for two hours. He told me that I did need a specialist, but I came prepared. I told him about genetic sequencing, about the Undiagnosed Diseases Program, and about a specialized skin biopsy, which could diagnose vEDS. He decided to pursue the skin biopsy. But because it was a specialized test, he wanted specific instructions and more details. He said he would look into it, but I vowed to find out as much as I could about the test.

A few days later, I called one of the few labs that offer the skin biopsy. A technician there faxed instructions to my doctor’s office, and from there, I followed up almost daily. For four months, I went back and forth between the lab and my doctor’s office. My doctor’s office insisted they never got the fax, while the lab insisted that they had the confirmation fax in their hands.

Then, I hit another road block. The technician informed me that the skin biopsy is now obsolete, and labs now use a blood test instead. GeneDx and Emory are the only two labs that offer it, so I called Emory first. They wanted $1,600 up front. So I called GeneDx. They charge $1,500, and they want half up front, which is still $750. If you will recall, I have no income.

From there, I sent a message to U. R. Our Hope, an organization that helps uninsured patients. They agreed to pay $250. From there, they negotiated with GeneDx, who then agreed to reduce the cost of the test down to $950. That means I still have to come up with $700.

I am $700 away from potentially changing my life forever. if the test is negative, I will be back at square one, with no direction and no new leads. If the test is positive, I most likely will not live to see my 50th birthday. I am now 32.

A few days ago, a nurse called to let me know that my doctor is discussing my case with some higher-ups in an attempt to help me. U. R. Our Hope also recently held a fundraiser, and I am still waiting to find out how much money the organization raised. In addition, I was a guest speaker on a podcast a few days ago, and the host has donated to U. R. Our Hope in my name. I still don’t know if I have the full $700. And I still don’t know if this test will diagnose me.

And that’s where I stand today. I’m making every possible effort, but I have no definite solutions. My 11-year journey is not over, and I have no choice but to continue stumbling forward.

People with undiagnosed illness have precious few options. We need more people in our corner. When no one listens, when doctors won’t help, and when we are stranded within the medical community, we need support. We need an ally. We need the Rare and Undiagnosed Network.