If you are newly diagnosed with HS or still trying to understand what is happening to your body, this is
what I wish someone had told me early on.
When my HS symptoms first started around the age of 18, I thought it was just really bad acne. Doctors
and dermatologists thought the same and reassured me it was temporary. What I wish I had known then
is that HS is often misdiagnosed, and that not having answers right away does not mean what you are
experiencing isn’t real. It wasn’t until I was 20 that I finally received the correct diagnosis.
One of the biggest things I wish I had known earlier is that HS is not your fault. For a long time, I blamed
myself. I thought it was caused by sweating, my weight, what I ate, how I dressed, or not being clean
enough. I showered multiple times a day and used excessive deodorant and body spray. If I enjoyed food
and later had a flare, I felt guilty. I looked at my entire life under a microscope, convinced I was doing
something wrong. I wish I had known sooner that none of this caused my HS.
I also wish I had known that flares affect far more than just your skin. They drained me physically and
mentally. Even small movements could be painful, and I constantly felt exhausted. I learned the hard way
that it is okay to slow down during flares and that pushing through pain does more harm than good.
Walking, getting dressed, sleeping, and staying focused became daily challenges, and the mental toll was
just as heavy as the physical pain.
Another thing I wish I had known is how deeply HS can affect daily life, and that struggling does not mean
you are weak. HS impacted my ability to work, attend school, sleep, and socialize. Employers often didn’t
understand. I missed classes, had to leave university midway through the day, and struggled with sleep
because of pain. I avoided social situations out of fear of flare drainage or odor and often stayed home
because even leaving the house felt overwhelming. I wish I had known that needing accommodations and
rest is not failure.
I wish I had understood earlier how important support would become. Family support and knowledgeable
home care nurses changed everything for me. They helped me find wound care routines that actually
worked for my body and taught me how to manage my care confidently. Finding doctors and surgeons
who listened, showed patience, and treated me like a person made a huge difference. I wish I had known
sooner that the right care team can completely change your experience with HS.
I also wish I had known that advocating for yourself is part of living with HS. At first, I didn’t ask questions
or push back. Over time, I learned that speaking up matters. Asking for explanations, follow ups, and
clarity helped me feel more in control. Once I found providers familiar with HS, especially a surgeon who
understood the condition, care became smoother and far less overwhelming.
Looking back now, I wish I had known that life with HS does not stay this hard forever. Today, I
understand my body, can sense flares early, and no longer blame myself. My mindset is stronger, and I
see HS as something I live with, not something that defines me. Over time, routines form, confidence
grows, and life becomes manageable again in ways I couldn’t imagine at the beginning.
Progress with HS is not perfect, but it is possible. Even on the days you feel completely drained, you are
stronger than you think. You are not alone in this, and HS is something you live with, not something that
controls who you are.
