My Story

During the summer of 2009 while home from college and working in a research lab, I woke up one day with a fever, headache, body aches, and nausea and emailed my boss to say that I thought I had a 24-hour bug. I had been healthy all my life and I had no reason to believe this illness would be unlike all the others I’d had before. Surely I would be better in a day or two. The next day, I felt worse and the day after that worse still. I started to get sick at my stomach and quickly became so dehydrated I could barely stand.

I was 20 years old and still seeing my pediatrician, but it quickly became clear that I was going to need a bigger team of doctors. I started seeing an adult provider who sent me to various specialists, and the barrage of testing began. With each new test and new doctor, the possible diagnoses got scarier and scarier. First it was flu, then mono, lupus, HIV, and cancer. I was CT scanned, echoed, stress tested, holter monitored and MRIed. I had more blood drawn than I can remember. I was terrified and confused. Just weeks ago I was a happy, healthy 20 year-old and now I was barely able to walk without my heart pounding and getting extremely short of breath. I had to sit in the shower, I could barely eat, and I hurt all over.

Over the next several weeks, I lost 20 pounds and realized that this illness was here to stay (which at that time I honestly thought meant a month or two). It was scary to be sick, but even scarier that none of my doctors had any idea what was wrong with me or why my heart was beating so fast. This went on for a couple months until I saw Dr. Raj at Vanderbilt. He was the first and remains the only doctor who could offer any kind of explanation for my symptoms. He told me that he thought I had POTS but that I had not been sick long enough to officially have it. He gave me salt and propranolol, but I was too sick for my stomach to tolerate the salt and I only took one propranolol and gave up on it. I felt relief at knowing what was going on, but fear at knowing that this was a CHRONIC illness.