I was in my early 20s when I first began experiencing symptoms of what was eventually diagnosed as lupus. Because my most pronounced symptom, especially at first, was extreme exhaustion, I speculated I might have chronic fatigue syndrome (also known as myalgic encephalomyelitis). When I mentioned this to my doctors, I was swiftly dismissed. They had a laundry list of reasons I wasn’t suffering from a real physical illness: I was a young, stressed-out perfectionist working long hours at a competitive corporate job in New York City. I had been diagnosed with anxiety disorder and PTSD in my teens and continued to cope with both illnesses.
Putting these things together, doctors told me, it was no wonder I was so tired. I was wearing myself out by worrying and working hard, and it was as simple as that. For five years, my symptoms gradually worsened, and I was finally diagnosed with lupus by an autoimmune specialist — but my doctors believe I may have a dual diagnosis of either chronic fatigue syndrome or fibromyalgia. (There is no definitive test for either of the two latter illnesses.) Many people are shocked to learn that I waited five years to get a diagnosis and begin treatment, but my story isn’t uncommon. On average, it takes 4.6 years to be diagnosed an autoimmune illness like lupus. And although the CDC estimates that anywhere between 836,000 and 2.5 million Americans have chronic fatigue syndrome, the organization believes the majority have not been diagnosed at all.