Finally Having a Name for It: My First Year After Diagnosis

My diagnosis

For about six years I thought I just got boils. They would show up under one arm, sometimes both, swell up over a few days, and eventually settle — until the next one. I was told to keep the area clean, to lose weight, to stop shaving. None of it changed the pattern.

What finally moved things was a dermatologist who looked at the scars from old lumps and asked how long this had been happening. When I said years, she nodded like she had heard it many times. She explained it was hidradenitis suppurativa, a chronic inflammatory condition — not an infection, and not something I had caused. Hearing that took a weight off me I did not know I was carrying.

Living with HS

The honest part is that a diagnosis did not make the flares stop. What it changed was how I related to them. I stopped treating every new lump as a personal failure. At work, the hardest days were the ones where sitting still or reaching for things hurt, and I had not told anyone what was going on. I eventually mentioned it, in general terms, to one manager I trusted. That made scheduling around bad days a little easier.

What helped me cope

Personal experience. Two things helped me most in the first year. The first was keeping a simple record of when flares happened, which I brought to appointments — it made conversations more concrete. The second was giving myself permission to rest on flare days instead of pushing through and making the pain worse. What helped me is not a treatment plan, and I know other people’s experiences differ.

What I wish I had known

I wish I had known the name earlier. Not because a name fixes anything, but because it would have stopped years of blaming myself. If you are reading this in the confusing phase before a diagnosis, being persistent with a dermatologist was the thing that finally changed my direction.