I always say to others with a chronic illness that getting diagnosed is half the battle. But what if that battle takes 31 years? What does it take to motivate yourself to seek out a diagnosis for most of your life, and is it worth it? I believe the answer to that is yes!
I grew up in a suburb of Chicago, and when I was 16, I worked as a camp counselor across the street from the Sand Ridge Nature Center. It was a forest preserve we would take our campers to a few times a week, and we spent the rest of the time at our day camp site.
At the end of that summer, I was entering my senior year of high school. And that September is when I started noticing a slowly growing number of symptoms and deficits that no one else around me seemed to be experiencing.
I could barely get up in the morning or stay awake in my 1 p.m. class. I had random stabbing pain in my shoulders, and I could barely walk home after school. I would fall asleep as soon as I got home. I couldn’t work and go to school. I got lost driving to places I had known all my life.
In college, I could barely stay awake during my first and last classes. Every time I went to the library to read, I would read the same paragraph over and over and have to fight to stay awake. Each afternoon, I would take a nap before dinner.
After graduating and moving to Chicago to first work in journalism, then advertising, and finally broadcasting, these symptoms were gaining strength and making it nearly impossible to work and support myself, but I had to keep going to pay my rent.
I was in my 20s when I finally started seeing a variety of doctors for my symptoms. Every test was negative, which was disappointing because you want to know what is wrong with you. The problem was, I had so many random symptoms by then — including weakness, fatigue, aching pain all over, headaches — that nobody could apply them to one condition.
I kept looking for answers. In my 30s, all my tests came back negative. In my 40s, I was married and living in Connecticut. I saw every kind of doctor in Connecticut and New York I could think of, and all my tests came back negative. I had been diagnosed with fibromyalgia in my late 30s and that was fine for a few years, but it didn’t explain why I felt like I was dying and why I would sometimes sleep for a month.
A rheumatologist at NYU Medical Center in Manhattan said you may have something they haven’t discovered yet — and may not in my lifetime. He sent me across the street to the Hospital for Orthopedic and Joint Diseases for physical and occupational therapy, even though I had no diagnosis.
One evening in the spring of 2007, I was standing in the upstairs office of my townhouse and thinking to myself — what was I doing right before I got sick in the fall of 1976? What was I doing that summer? And it came to me. I was a camp counselor that July and August. I wanted to make sure I had that right, so I turned around and went to an expandable file where I had kept one W-2 from every job I’d ever had. And there it was at the bottom of the paper-clipped stack. The first job I’d ever had was as a day camp counselor in South Holland, Illinois in the summer of 1976, just one month before I got sick.
There was one type of doctor I had not been to yet, so I made an appointment to see an infectious disease doctor less than one mile from my house. By this time I was having all my symptoms, plus migraines at least five out of every seven days. In other words, I spent days on end in bed, weak and in excruciating pain.
At my appointment, I told the doctor my symptoms and that I had been a camp counselor before I got sick. Then I looked her straight in the eye and said the thing that made all my previous doctors so uncomfortable — I said, “There is something wrong with my brain.”
The doctor got together with my neurologist down the street I had been seeing for pain management, and together they ran about 20 tests. And for the very first time in 31 years, one of those 20 tests came back positive. I was positive for Babesia microti, which is spread by deer ticks. Did the doctor treat me? Yes. Did I get better? Yes! Am I cured? Nope. I have chronic babesiosis (Babesia), which has symptoms similar to malaria.
Like I said, getting diagnosed is half the battle. It changed my life. I responded to treatment. The point is that I never gave up searching for a diagnosis, because regardless of what everyone else said — I knew there was something terribly wrong with me. And I was right.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.