If anyone rejects you for something you can’t control, they’re the problem. Not you.
Eleven years ago, I was diagnosed with a rare condition called hidradenitis suppurativa (HS). It’s a chronic skin condition that involves painful bumps, nodules, and scarring.
I didn’t really know what it would mean for me at the time, but it has been part of my life every day since.
Most people who are diagnosed have a much more advanced stage than I had at the time of my diagnosis. Many are embarrassed to see a doctor when they first show symptoms, as HS mostly affects the areas around the groin and breasts.
Eventually, the small bumps turn into deep lesions that easily become infected, leading to scars.
I’m lucky to have only a moderate case, but I still have plenty of scars around my breasts and groin. HS also causes a low level of pain on a daily basis. On bad days, the pain can leave me struggling to think, let alone walk.
As a teen, I noticed some small lumps on my legs and armpits and went to see my doctor to get them checked out. Turns out he wasn’t really sure what they were either, so he referred me to a dermatologist.
This was the first time I felt that a doctor might not have all the answers. I was a little scared, but thought he was just being overly cautious.
The lumps were maybe the size of a pea. They were red and sore, but not really a problem. I didn’t think they would be anything particularly scary, just an extension of my normal teenage acne.
Fortunately, the dermatologist was a good one. She immediately recognized them as early signs of HS.
As relieved as I was to finally have a name for the condition, I didn’t really understand exactly what it meant for me. The stages of progression were explained, but they felt like a distant reality that would happen to someone else. Not to me.
It’s pretty unusual to be diagnosed in the early stages of HS, as the small lumps can easily be confused with folliculitis, ingrown hairs, or acne.
It’s estimated around 2 percent of the North American population has HS. HS is more common for women and tends to develop after puberty.
It’s also likely genetic. My father was never diagnosed but had similar symptoms. He passed away a long time ago, so I’ll never know, but it’s possible he had HS, too.
Unfortunately, there’s no current cure.
I’ve had all sorts of antibiotics, with none of them making a difference. One treatment I haven’t tried is the immunosuppressant adalimumab, as my condition isn’t quite severe enough to justify it. At least I know it’s there if I need it.
Not long after I was diagnosed, I saw the U.K. show “Embarrassing Bodies.” On the show, people with illnesses deemed “embarrassing” go on TV in the hopes of receiving treatment.
One episode featured a man with late stage HS. He had severe scarring that made him unable to walk.
Everyone who saw his scars and abscesses reacted with disgust. I hadn’t been aware of just how serious HS was, and it made me afraid for the first time. I still only had a mild case, and I hadn’t even considered that it was something I should be ashamed of or embarrassed by — until now.
I went on to university and started dating, despite my worries. But it didn’t go well.
I was dating a guy for the first time, a friend of a friend. We’d been on a few previous dates, and that night we’d been at a bar before heading to my apartment. I was nervous but excited. He was clever and funny, and I remember how much I liked the way he laughed.
It all changed in my bedroom.
When he took off my bra, he reacted in disgust at the marks under my breasts. I had told him I had some scars, but apparently a few red welts were too much for him.
He told me he wasn’t interested anymore and left. I sat in my room, crying, ashamed of my body.
I had a checkup with my dermatologist a few weeks later. Since HS is rare, she asked permission to bring in a medical student who was shadowing her.
Guess who it was.
Yep, the guy who rejected me.
This moment was a turning point for me in how I thought about my condition. While the TV show had set me back and made me ashamed, now I was angry.
As my dermatologist explained to him the severity of the condition and the fact that there’s no cure, I lay there naked and fuming. They looked over and talked about my body, pointing out the identifying features of HS.
But I wasn’t angry at my body. I was angry at this guy’s lack of empathy.
He texted me afterward to apologize. I didn’t reply.
While that may have been a turning point in my perception of HS, I still have body issues. The med student was my first attempt at exploring sex, and the fear of rejection set me back a long way. I didn’t try again for years.
There were little steps along the way that got me closer. As I grew to accept my condition, I also became more comfortable with my body.
Acceptance largely came through education. I threw myself into research around HS, reading medical reports and engaging with others in public forums. The more I learned about HS, the better I understood that it wasn’t something I could control, or something to be ashamed of.
As I aged, so too did my potential partners. There’s a big difference in maturity in just the 4 years between 18 and 22. Knowing that helped reassure me before I tried dating again.
I also didn’t attempt casual sex again for a very long time. I waited until I was in a secure relationship with someone, someone who I knew was mature, level-headed, and already knew about my HS.
Luckily, aside from that one bad experience, my partners have been supportive. People can be incredibly shallow, but in my experience, the majority of people are pretty accepting.
A lot of us feel pressure to have perfect bodies, especially when it comes to the parts of us usually covered by bras and panties. We all have body-related anxieties that get dialed up to 10 when it comes to sex and dating. Often, it’s about something we can’t control.
The reality is that acceptance is the only way to move forward. If anyone rejects you for something you can’t control, they’re the problem. Not you.
It’s still a work in progress for me, but I’m slowly coming to accept my body and my skin condition. The embarrassment and shame of my younger years has fallen away as I’ve grown older. There’s very little I can do to help my HS, but I make time to really look after myself when it flares up.
As I write this, I’m in the middle of a flare-up. I’m lucky enough to be able to work from home, meaning I can avoid moving as much as possible. I use antiseptic washes to prevent infection, which can happen very easily. Adding a small amount of bleach to a bath and soaking can help a lot (make sure to talk to a doctor before trying this, though).
I used to ignore flare-ups and work through the pain. It’s taken a long time for me to start prioritizing myself and my body, but I’m finally accepting that I need to take care of myself. I struggle to put myself first, but when it comes to HS, I’ve learned that I have to.
If you’re concerned about HS, I urge you to see a dermatologist as soon as possible. I’ve lost count of how many doctors and nurses I’ve had to explain my own condition to, as awareness has only recently begun to increase.
And if someone you’re dating makes you feel embarrassed or ashamed for something you can’t control, take my advice and dump them.
Bethany Fulton is a freelance writer and editor based in Manchester, United Kingdom.