I always had a lot of acne growing up so to say the least I wasn’t surprised when I got my first boil at 18 (not really knowing what a boil was, thinking it was just a “Pimple Royale”) right there on my right butt cheek. At that age it’s not something you bring up to your friends around the camp fire so I just kept it to myself and suffered through working, living and traveling long hours, days and years of more boils that never wanted to really heal.
Around 30 somewhere it was bad, my whole ass and left armpit looked like bacon with waves of blood and stinky fluids draining from it, making my work days shorter and shorter, plus I was running low on excuses and white lies to my coworkers and friends.
I was getting really tired and one day my body screamed at me “Hey dude, something’s really wrong with this picture, here, why don’t we try some sepsis!” I got into the San Francisco General ER at the eleventh hour with 104 in fever and my scrotum the size of an orange. I survived, the docs sliced and diced my butt and nuts and it all healed up quite nicely I must say. However, I never got a diagnosis, my papers just said “multiple abscesses”…..
It was fine for about a year or so, then the boils and fistulas found little ways in-between the scars and started popping up again. I learned to roll with it, what bandages worked and didn’t work, long lunch breaks so I could sneak home and change, and more excuses and lies to the people around me. The pain became second nature and sleeping a full 8 hours a night a thing of the past.
Years and years (16 to be exact) went by in this state of pain, being a vagabond I traveled extensively, working all over the states and Europe, then finally, in the late summer of 2018, at the ER in Oslo, Norway, I got the diagnosis. Hidradenitis Suppurativa! I wanted to climb a tall building and scream those two words on the top of my lungs having learned that it wasn’t me, or my fault, that this had been haunting and hurting me for all these years.
Now I had something to hold on to why this curse was on my ass and what I could do to make it easier. Finding a doctor with knowledge (and empathy) enough to find the right path to remission is a long and hard one, but not as hard as living with this disease my whole adult life up to that day in Oslo.
I am pissed and dead set on not letting this thing take any more chunks of my life away.
I am an HS warrior, you can be one too.