Hi everyone! My name is Katie and I’m a 25 year old woman with HS disease.
This is my story…
I was 8 when my HS symptoms started, and it took another 8 before I found out about it online and told my doctor. My doctor referred me to a dermatologist who confirmed it for me. The condition has left me unable to work and I am sad about that. I’d describe the pain as feeling like burning, searing and deep. It’s like bubbles of acid in an alien ant farm, or Hell.
There have been a few challenges I’ve encountered dealing with HS. Things like losing friends and family… they either didn’t want to believe that I was in too much pain to hang out, or threw my “laziness” in my face. They refuse to understand the fatigue that goes along with a bad flare. I also have to wash my hair by bringing my head down to my hands. I can’t lift my arms to do it the “normal” way, because the scar tissue is so tight and it feels like it could tear at any given moment.
Getting dressed also sucks. Sometimes I need help just to get a shirt on. Nerve pain shoots down my arms to the tips of my fingers causing me to drop things. I also suffer serious depression, and with every bad flare it seems to dig me deeper.
In the past, I’ve been put on every antibiotic under the sun, and the only outcome was a nasty yeast infection. Humira scares me, I have a 2 year old son and the side effects outweigh the benefit for me. That stuff can kill you. Currently I manage my HS by doing the AIP version of the Keto diet, but it’s not helping. I have also had two very unsuccessful minor exclusions [surgeries]. Both times, the doctor stitched me and both times the stitches tore.
Medicinal marijuana seems to help with the severity of symptoms, but it doesn’t take it away completely. I have a high CBD tincture I apply topically as well as take orally. It helps a little with the inflammation, but not as much as I would like. There is also a full extract cannabis oil that I have.
There are 3 stages involved with HS and I believe I’m early into stage 3. If I could grant a person newly diagnosed with HS a wish, I’m not sure what it would be. I’m still trying to figure it out myself. I would tell them though that Vick’s vapor rub is your friend.
If I did not have HS then yes, I believe my life would be different. I would currently be working towards getting a degree in mortuary sciences and criminal psychology. I’d love to either work in criminal psychology (I have an odd fascination with serial killers, like ask me how tall Ed Kemper is and what his weapon of choice was and I’d tell you that and how many co-eds he took out).
I would also be happy working as a mortician. Nobody wants to do that job, and I find human decomposition fascinating. The energy I’d need for school is no longer there though, and wearing a bra is far too painful. The anxiety and depression that goes along with HS will prevent me from doing Psychology, and the bad arms would prevent me from Mortuary.
I almost never leave my home; it’s like purgatory inside of hell inside of purgatory.