The Early Years
I don’t remember the exact age when HS started but I know I was already getting lumps by middle school, so I want to say around 11-12 years old. When I think about it, it was probably when I hit puberty. My first symptom was actually the lumps itself. I remember that I thought it was a regular pimple and, well at that age, I was like ‘whatever’, you know? I didn’t care if it left a scar or how it would look down there because I was just a little girl and that was not in my worries. I remember that sometimes they would be painful as well.
As I got older I did notice they got worse. By that I mean I would get them more frequently and now they were sometimes becoming painful. Depending on the area, it would hurt if I walked because it would rub against my skin or clothes. I’ve been a heavy girl almost all my life but even when I wasn’t (I actually had lost like 60 pounds) I would still get them.
In high school, I think that’s when it started affecting me mentally because I had a bunch of scars at the time and I started dating. Also, social media at the time was brand new and everyone was on it. I would see all these models or ‘normal girls’ and be like “what the hell is wrong with me?”.
I would even shower two to three times a day thinking it was because I was dirty or, I don’t know, my skin was super sensitive but then days later one would appear again. I don’t know why I never even asked a doctor. Probably because it was so embarrassing, like what would they think, that I’m dirty or have an STD?
The moment of realisation
So, one day I was at work, literally like 5 years ago (I’m 26 right now), and I was listening to Pandora [music app]. All I remember is that a commercial would play all the time and I never paid attention to it. Until one day I did and I was like “OMGGGGGGGGGGGGGGG this is me!!!!!!!!!!!!!!!!!” I felt some kind of relief because I was like “Wow!” This is actually a disease/illness. There’s people out there that have the same thing as me who are struggling in silence and feel helpless.
Even after that I don’t know why I hesitated about going to the doctor. Especially a dermatologist because it was so expensive, I mean it still is.
Seeing a Doctor
Recently, last year, I finally went to the dermatologist for a skin tag I’ve had since I was in middle school as well. It was on my face and I got it removed. As soon as the dermatologist was going to leave, I stopped her and decided to ask her about HS. She looked at me very seriously and I showed her my scars that are all in my inner thigh, around my bikini area or around my vagina. She said I did have it and, well, I never went back. I mean just for a skin tag was 100$ but I think I might start going.
The Impact of HS
It has affected me mentally and emotionally. I think that’s why when I’m intimate I prefer darkness or no oral. Because not everyone understands or knows about this. But honestly I’m not sexually active and it is mostly because of this and my weight. The scars that it has left me with are pretty harsh. I don’t like to look at myself anywhere around there, including my buttocks and armpits as well. It’s been a journey I tell you.
Please note: Names , photos and identifying information have been changed to protect the privacy of this HS Warrior.