Hoping for Grey’s Anatomy, getting shrugged off instead: Diagnosis Part I

For years, I dealt with pain flares that I assumed were fibromyalgia related. At first, they came and went, but eventually the space between flares got shorter until I was in pain all the time. On top of that, I was exhausted—like bone-deep, can’t-function exhaustion—and my memory, which had always been sharp, started failing me. I even had to write down when I took my meds on a sticky note, so I wouldn’t forgot.

Then, in November 2021, I came down with covid. After that, everything went into overdrive. I found a large lipoma, a fatty benign tumor, under my thigh, which I jokingly named “the whopper” because of the similarity in size. Then lipomas started popping up everywhere. When I showed them to my primary care doctor, she felt the lumps and shrugged, saying they were “just fatty tumors.” It didn’t make sense to me, though. How could it be normal to have this many “fatty tumors” that hurt all the time? I left that appointment so disappointed.

I told myself okay—on to the next doctor. So I went to a rheumatologist, convinced this was finally the person who would put the pieces together. Instead, after hearing my symptoms, he asked If I had a therapist. That was it. No tests, no curiosity…nothing.

I walked out of that office feeling completely invisible. I had pictured this beautiful, Grey’s Anatomy moment where an intrigued doctor takes on my case, runs test, does a full work-up, and treats my symptoms like a mysterious puzzle to solve. But instead, it felt like no one was willing to even try.

Little did I know, that was only the beginning—and the road to finally getting answers would be much longer, and much harder, than I ever expected.