The first time I remember having a Still’s disease flare, I was 16, and my family doctor told me I had carpal tunnel syndrome in both hands, at the same time I developed severe pleurisy (inflammation of the sac that lines the lungs) and pneumonia, severe fatigue, and general malaise. I was lucky that after a few months it disappeared.
Five years later at 21, I woke up from a nap feeling as though I had run a marathon and then been hit by a truck. I was lucky enough to find an amazing rheumatologist, though she was only able to diagnose me with “inflammatory arthritis” as she couldn’t determine a clear causation. As it turns out, neither were any of the other PCPs or rheumatologists I saw over the next 11 years. It was not until I was 32 that I, fueled by anger and frustration, finally sat down and determined the most appropriate diagnosis and presented the evidence to my current rheumatologist, who fully agreed with my assessment.
Diagnosing myself was one of the most difficult things I’ve ever had to do. I started by teaching myself how medical diagnosis, especially of chronic diseases, works. I have a big interest in the history and philosophy of medicine and science, so much of this wasn’t entirely new territory, but it was entirely new applications of things like Baynesian logic.
I have a B.S. in Anthropology, which included enough biology, genetics, and statistics to ground me in an evidence-based approach, but I think most people underestimate the incredible complexity and nuance of the art of diagnostics. And, as much as I adore House MD as wonderful television, the I do think the show does a disservice to the many patients for whom finding a diagnosis is a long odyssey.
Once I discovered Still’s disease, I quickly realized that I might finally have a name for what was going on. I read everything I could on the disease, which was all medical literature, as there was nothing comprehensive at the patient level.
Since the literature on Still’s disease isn’t what anyone would mistake for comprehensive, I moved from a focus on Still’s disease specifically to passionately researching everything I can about human immunology, and the pathogenesis of autoinflammatory diseases in general. I am currently applying for Master’s of Public Health programs as the next step in my education.