After leaving that rheumatologist’s office, I felt completely gutted. I had gone in with hope—maybe too much hope—and left with less than nothing. Not only did I not have answers, I had been reduced to a stereotype: the “anxious patient” who just needs therapy.
But deep down, I knew what I was experiencing wasn’t in my head. The pain was real. The exhaustion was real. The growing lumps under my skin were real. And the longer I went without answers, the worse everything got.
Chasing Specialists
So, I kept pushing. I scheduled more appointments, bouncing from specialist to specialist like a pinball: dermatologist, neurologist, endocrinologist, even a second rheumatologist. Each time, I rehearsed my “script” in the car—making sure I had my symptoms lined up, dates, even a completed pain journal. I thought, if I just present my case clearly enough, someone will finally take me serious.
But appointment after appointment, the result was the same: shrugging, dismissal, and disinterest. Some said it was “just part of normal aging.” Others told me I just needed to lose weight.
The Symptoms Keep Stacking Up
Meanwhile, my body was in full rebellion. The lipomas kept showing up. I’d find a new one, then another, then another. They weren’t cosmetic; they burned, ached, and throbbed in ways that made simple things like walking, sitting, or even wearing certain clothes painful.
The exhaustion deepened, too. It wasn’t “tired.” It was the kind of fatigue that made climbing stairs feel like running a marathon. My memory issues worsened—I’d forget words mid-sentence. Sticky notes, phone alarms, pill organizers…all became mandatory.
The Emotional Toll
By this point, I felt like I was unravelling. Every failed appointment chipped away at my confidence. I started to question myself: am I being dramatic? Am I wasting everyone’s time. But then the pain would spike, or another lump would appear, and I’d snap back to reality, “no!” Something is wrong.
The hardest part was trying to explain all this to the people around me. On the outside, I didn’t look “sick.” Inside, my body was screaming. That disconnect made me feel like I was living a double life—one where I plastered on a smile in public, and one where I collapsed behind closed doors.
The Turning Point
It was around this time that I stumbled upon something online that made my heart stop: Dercum’s Disease. A rare condition, often misunderstood, marked by painful lipomas and widespread pain. For the first time, I saw my experience reflected back at me in black and white.
Could this be it? I didn’t know yet. But I did know one thing: if doctors weren’t going to connect the dots, Then I was going to start connecting them myself.
So I dug deeper, reading every medical publication and patient story I could find. That’s when I discovered something almost unbelievable: the top Dercum’s Disease specialist—the one people travel across country to see—was right here in Arizona. In Tucson. Just a few hours from me!
It felt too good to be true. The possibility of finally being seen, finally being diagnosed, was right in front of me. But a new fear crept in: could I afford to see her?
