The Talk: Disclosing HS in Relationships

By Crystal Moore

2 min read

Talking about our condition can be embarrassing and often we avoid it like the bubonic plague. Often I wonder when the right time is to bring up the fact I have hidradenitis suppurativa. I think it’s a little premature when a guy first asks you out to be like... umm sir, FYI, I have hidradenitis suppurativa, it’s a skin disease.

Of course, you will have to dive deeper because no one knows what you’re talking about.

It can be easy to say nothing

However, it can become all too easy to say nothing, but the next thing you know, you’re in a relationship and it’s about that time and now you’re mortified because you haven’t mentioned your little secret. I know I’m not the only one who has been down the road to disclose or not and when is the correct time.

I have had hidradenitis suppurativa for almost over 21 years and have never told a guy about my condition. They have either found out about it through my social media or to this day never knew. I usually forbid anyone new from following me on my TikTok because of all the content surrounding my conditions.

I din't want him to follow me, but he did anyway

Story time: I was talking to this guy, and it was going well. He was nice and he wanted to follow my TikTok because he knew I made social media content. But over and over I refused because I’m the most vulnerable on TikTok. We had only been talking for a month, less than a full month, and had gone on one date. I didn’t feel like we were at the point that I needed to bring up my little secret since I wasn’t planning on sleeping with him, but he found me.

I think he found me with my phone number or something. He would text me about some of my content. Calling laughing about the stories I told. I posted a video showing my scars and talking about the tunnels. He watched the video and no calls of laughter or text. I never heard from him again and he stopped following me.

"I want someone to know me before they judge me on something I can’t control"

I started to think maybe I could have avoided this outcome by telling him earlier. Then I got irritated, and thought you know what? He’s not the one if he can’t handle me at my worst. I want someone to know me before they judge me on something I can’t control. Am I wrong?

I don’t blame anyone for not wanting to date me. This condition is a lot and let’s be honest, it can be gross at times. Most people say dealbreakers are people with bad hygiene and while I know we don’t have bad hygiene, it could be splitting hair for some people.

Starting a new relationship

I am in a new relationship, and of course I didn’t tell him about my skin disease either. I guess I didn’t learn my lesson. He also started watching my TikTok’s and discovered I have HS. He called and said baby what’s hidradenitis? And we talked about the condition.

I still haven’t shown him in person up close and personal my scars, but he keeps updated on TikTok where I feel I can truly be myself.

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Binzi09 Member
I always kept my HS a secret from prospective partners. I only told them when I wanted things to end. And it always worked. But, I remember when I met my fiance, the first conversation we had he was so open about his past that I just blurted out that I had H.S and I was due for surgery in two weeks. He didn't flinch. He just asked what it was and I asked if it was a turn-off, he was like it would take a lot to push him away from me. Well, let's say it hasn't been an issue in our relationship. What I love best is that he doesn't tell me how to treat my h.s, no quick-fix solutions. He doesn't turn into an expert. I say the right one will make it easy to share and trust me he won't make you feel doomed.
1. Richard Faust Community Admin
 Hi <inline-mention username="Binzi09" user-id="4171315"/>. Thank you for sharing this story. As the husband of someone with a severe form of an autoimmune condition, it is always great to hear about supportive partners (my wife, Kelly, was diagnosed at age two with juvenile idiopathic arthritis at age two and has used a wheelchair since her teens). When we met I knew little about her condition, but I knew that, while it may be part of her, it is not her. It sounds like your fiancé truly gets it and it is great for others to hear that these relationships are possible. Wishing both of you the best. Richard (Team Member)
Jasmine IVANNA Espy Member
I share the same sentiments. I've told my friends that I'm thinking about making a burner account on Instagram so that when I meet someone out or if I start dating someone, they can follow me on that account and not the accounts where I talk about my journey with HS. I don't think it's affected my ability to date because I use Hinge and don't connect my social accounts. When they ask to follow me, I act like I didn't hear what they said. Eventually, I worked up the courage to talk about it, but knowing about this condition is really on a need-to-know basis. If we aren't serious, bet your bottom dollar they won't know.