For close to 10 years, I’ve suffered from a condition called Hidradenitis Suppurativa. I used to always quickly follow that sentence up with “Don’t Google it!” but go ahead, see what it looks like.
The quick synopsis that I’ve gotten really good at spewing goes like this -- It’s sort of like acne, but it’s on your armpits and groin, it’s not contagious, nobody knows what causes it, there is no cure, I’ll probably have it for the rest of my life, no I don’t want to hear about your uncle who used to have sores all over his back but started bathing in turmeric and eating paleo and they went away.
It took a while to get diagnosed with HS. In middle school, I started getting painful boils under my arm. Pediatricians told me it was razor burn, staph infection, ingrown hairs, and my personal favorite, cat scratch fever. It wasn’t until one of these lumps brought me to the emergency room that I heard the words Hidradenitis Suppurativa.
I wasn’t immediately embarrassed by it. I’d post about my doctor’s appointments on my Xanga and show everyone in gym class my organic mineral deodorant. But then it started showing up on my upper thighs and it stopped being a cute quirk. My most intimate area was covered in pus-filled boils.
Have you ever played Would You Rather with teenage boys? “Covered in pus-filled boils” is shorthand for unfuckable to the nth degree. When the thing you’re most embarrassed about is splashed across your face, you’re allowed to defend yourself to those who mock it. When it’s something so private, you have to mock it along with them. At least I thought I had to.
Not only were teenagers thoughtless and clueless, so were most of my physicians. From hearing things like “If you’ve Googled it, you know about as much as me” to having a doctor tell his intern “Now you’re probably never going to encounter HS, but in case you do, this is what it looks like.” It became clear to teenage me that this was not only something I needed to hide, but something I needed to surround in a fence of lies for my own protection.
Every choir trip, vacation and summer break was an opportunity to make up stories of sex I didn’t have so that I wouldn’t be behind my classmates. I “lost my virginity” at All-State choir weekend. I avoided school dances, parties, anywhere horny teens might be. I scoured web groups for more information on Hidradenitis and passed off the time spent as cyber sexting with long-distance boyfriends that I never had.
I created a dress code for myself that would put my conservative Texas high school to shame. No sleeves were too long for cardigan reinforcements, all dresses shall be worn over pants. NO BRIGHT COLORS! I wanted to be a dark, shapeless blob and not to brag or anything, but I definitely nailed it.
It didn’t end with graduation. As an adult, I concocted a brilliant plan: I’d only flirt with men who lived hundreds of miles away, I’d send them lots of gifts and be completely emotionally available to them. Then, by the time we finally meet they'd be so in love with me they couldn’t be disgusted by my disfigurements.
I had one near success. I spent nearly three years butt-crazy in love with a boy on the opposite coast who did eventually see me and then promptly fell asleep as soon as we started to fool around, before my clothes were even off. It was still a win for me.
Strangely, this all worked. The emotional boundaries effectively kept people out. I successfully defined myself as an asexual and amorphous blob. I wasn’t invited to parties or asked on dates and nobody commented on my outfits (except maybe to say “Aren’t you hot in that?” or “It’s summer, why are you wearing a hoodie?”).
I’d learned to hide my tells when girls were talking about blow job techniques or tales of their lost virginity. The drinking helped. I was drinking a lot. Sleeping a lot. Locked in my room watching Netflix a lot. I fulfilled any sexual desires by going on Omegle and having chat sex with strangers.
There’s only a certain amount of body-hatred a person can have before it turns into self-hatred. I had no will to live. I wasn’t allowed to do anything fun. Nobody liked me, per my request.
Alcohol and drugs stopped doing the trick and King of the Hill was taken off of Netflix so all I had no protection from the weapons I’d stocked my self-image with.
I wish I could tell you what happened that turned me around, but I guess it’s sort of like a slingshot: You can hold yourself back for so long before you lose your grip and go soaring. I got sober, got in therapy. I made friends who I told about my HS. I bought high-waisted skirts and wore them without tights.
I started to fall in love with a boy who lived five minutes from my house. He rejected me and it broke my heart but for the first time in my life I didn’t hate myself because of it.
I found a guy on Tinder to lose my virginity to (felt very empowering at the time, though it does now look out of place with these other rites of passage) and had the thought, mid-hump, “Oh, THIS is what I’ve been so scared of? Dude I’m TOTALLY entitled to this.” Instead of hiding from girls who intimidated me, I asked them to brunch. I adopted a chinchilla. I went to London.
I found a boy, a sweet and handsome boy, who loves me and finds me sexy and kisses and touches my thighs without a second thought. A boy who doesn’t care that he’s only my second partner and who is more than happy to help me tear down my emotional walls and renovate my self-worth.
He and I are going to celebrate my 25th birthday and you know what where we’re going? To a beautiful and sexy resort and spa that makes me feel beautiful and sexy.
I bought a bikini for the occasion. It’s my first-ever bikini. I wear it around my room and take Photobooth photos wearing it. I picture myself wearing it while I sip nonalcoholic spritzers and listen to Brigitte Bardot in the hot tub. I think about doing handstands in the shallow end of the pool, something I haven’t done since puberty. I even wore the bikini top out to dinner the other day, paired with one of those high-waisted skirts I can’t seem to get enough of.
I will probably have HS for the rest of my life. I will definitely be in my not-perfect body for the rest of my life. And I really don’t feel like spending the rest of my life making excuses and hiding and lying. It’s exhausting.
But you know what’s NOT exhausting? Sitting in a hot tub and kissing a cute boy. And I’ve got to make up for lost time.