About this story
- Years since diagnosis
- 6
- Stage (self-reported)
- Hurley II (self-reported)
- Diagnosis
- Diagnosis journey
- Treatments discussed
- Antibiotics, Biologics
- Body locations
- Multiple areas
- Topics
- Pain, Flares, Confidence, Work
Personal experience
My diagnosis
By the time I was diagnosed, I had already been through a lot of antibiotics. They would calm things down for a while, then a new area would flare. Over about six years the pattern spread — under the arms first, later other areas too. My dermatologist described it as moderate and said we had options beyond the ones we had already tried.
Living with HS
Living with flares in more than one place changes small things: how I sit in a meeting, what I can carry, how much I plan around a bad week. I work a desk job, which helps, but there were stretches where the discomfort was hard to hide. What wore me down most was the unpredictability — feeling fine one week and cancelling plans the next.
What helped me cope
Personal experience. When my dermatologist raised the idea of a biologic, I was nervous. It felt like a bigger step than a tablet. What helped me decide was asking a lot of questions: what it was for, what to watch for, how we would know if it was working, and what happened if it was not. Writing those questions down before the appointment meant I did not forget them in the moment. This is what worked for me in a conversation with my own clinician — it is not advice about whether any treatment is right for someone else.
What I wish I had known
I wish I had known that a treatment decision is not a one-time verdict — it is something you revisit with your care team. Going in with questions, rather than expecting a guarantee, made the whole thing feel less overwhelming.