HS and STIs: Dealing with Stigma
Content warning: This article includes mentions sexual assault.
When I was around 13 years old, I was the victim of an attempted sexual assault. Ironically enough, my HS symptoms began a few months later. Having been victimized and ashamed of what happened, I never told anyone of the assault and internalized everything. When the painful abscesses started, I hid them for months. I didn’t tell anyone about the pain and the scars were easily hidden since they were in private areas.
Months later, I got an abscess on my thigh that was so painful I got a fever. I finally had to tell my mom about what was going on. She eventually took me to the emergency room where they drained it, packed it, and gave me antibiotics. I never did say anything about the assault.
"My 13 year old mind correlated the assault to these new symptoms"
See, my 13 year old mind correlated the assault to these new symptoms. I was so ashamed and guilt-ridden I never said a word. I blamed myself, not only for the assault but for the abscesses too. And since they kept coming and my condition got worse, I felt worse. I felt like the trauma was being extended.
My early teenage years were complicated by the fact that I felt like I was hiding a sexually transmitted disease. I did not date much and I had low-self-esteem. I was so embarrassed by the scarring, the odor, and my ruined clothes.
I was finally diagnosed at 17 years old. I remember going home and researching HS at the time. This was not very helpful as there was little information on HS at the time, and the information that was available was not very helpful. But I clearly remember reading that HS is not contagious and not a sexually transmitted infection.
I can remember the relief and pressure from my shoulders lifting at that moment. Everything I was so afraid of was gone. I knew I was getting more questions than answers, but I had gotten an answer I needed for my own healing.
I have accepted my HS diagnosis
As I have gotten older, I have worked through the trauma and accepted my HS diagnosis. I have done the work, researched everything I can, and joined a community dedicated to helping people like me.
But those of us with HS have to deal with the misunderstandings of HS. We carry an unnecessary stigma when others see the scars and bumps, then assume it's an STI. This is unfair to HS warriors and those who have STIs. The stigma associated is unnecessary and hurtful.
Combatting stigma with education
One of the ways we can combat this is education. Educating our friends, family, and others about HS is how we can spread awareness of HS and chronic conditions. We can break the stigma by de-stigmatizing STIs and encouraging testing. Lastly, we can fight by advocating for ourselves and others who may need it.
I have also worked through my feelings in therapy, prioritized my medical care, and dedicated my efforts to advocating for people whose voices are unheard. The work is hard, but every action helps.
Have you ever experienced painsomnia?