Living with a chronic skin condition like hidradenitis suppurativa (also called acne inversa) can make many parts of life more challenging — including dating.

On myHSteam, members often discuss dating. One member asked, “Are there any singles who find dating or the thought of dating quite daunting? I’ll go first and say that I do.”

Some people feel pessimistic about dating because of hidradenitis suppurativa, which can affect their mental health, sense of well-being, and self-confidence. “Yeah, I am single, and with this, I have realized I will have to remain single now for the rest of my life, since HS isn’t something you can stop/cure,” one member shared.

Others feel a lot more hopeful and confident. “If that person truly loves you for who you are, they will understand and love you for you,” a member said. “Remember, this is not your fault, and that is the truth. It can happen to anyone and at any given time.”

Some members have found success in dating with hidradenitis suppurativa. One member shared, “I’ve been in a relationship now going on three years. She loves me for me.”

If dating feels difficult because of hidradenitis suppurativa, you’re not alone. Here’s what you should know about dating with HS.

Concerns Around Dating and Hidradenitis Suppurativa

People living with hidradenitis suppurativa may worry about dating for a number of reasons. Some concerns are about self-image and confidence, while others relate to sex and intimacy, pain, or flare-ups.

Feeling Self-Conscious

Many myHSteam members report feeling self-conscious about their appearance, which can lower their self-esteem. One member said, “It got really bad over the last two years, and I am so self-conscious about it.”

Others feel self-conscious because of the smell that can occur when HS lesions rupture. “It’s so embarrassing. I feel gross and smelly, and I have come to the point where I am not going to try anymore,” one member shared.

Others have accepted themselves but still worry about how potential partners might react to scarring or skin changes after a hidradenitis suppurativa flare. “I am longing for companionship yet fear potential rejection because of scarring in my groin area,” one member said.

Another member with similar worries added, “A lot of people don’t understand this disease and often think the bumps are something else.” For example, hidradenitis suppurativa can sometimes be mistaken for genital herpes, even though there are important differences between the two conditions. It’s understandable that people with hidradenitis suppurativa wouldn’t want people to think they have a sexually transmitted infection when they don’t.

Sex and Intimacy

Some members of myHSteam are more worried about sex and intimacy than they are about going on dates. One member shared, “I have also let this wretched disease keep me from pursuing any intimacy or relationships. I know it’s twisted thinking — I wouldn’t care if my partner had this, but I assume men would be put off. So I haven’t tried.” Another said, “When it comes to intimacy, I am so stressed out.”

Even for those who feel comfortable dating, the thought of revealing HS-related sores, abscesses, tunnels, or scars to others can be scary.

Pain

Pain can also make dating harder. For many, pain affects both sex and intimacy. “I have a very large lump on my [vulva], which my doctor said is my new normal,” one member shared. “I am embarrassed by it — it hurts and drains. I no longer wish to be intimate.“ Dating can be hard when you’re in that much pain, especially when you don’t want intimacy.

Another member shared that their pain is so severe it has “ruined my sex life. I don’t even want to touch myself.”

If pain stops you from wanting intimacy, it might also make dating hard. One member said, “The pain never gets any easier, and walking is a pain.” If walking is tough, dating might feel out of reach. If you’re in this much pain, talk to your dermatologist as soon as possible.

Talking About Hidradenitis Suppurativa Is Key to Successful Dating

While it might feel hard to talk about hidradenitis suppurativa, being open can make dating easier. You don’t need to bring it up on your first date, but if you meet someone you want to keep seeing, you’ll want to share at some point.

Talking about hidradenitis suppurativa can help you work through the concerns mentioned earlier. Being open might help you feel better about yourself and remember you have nothing to be ashamed of. One member said, “[Hidradenitis suppurativa] has become a part of my life, and I talk about it all the time to whoever I meet or know. I’m not ashamed of it now. I used to be, in my younger years, but not now.”

Another member shared that being honest helped them overcome their self-consciousness and be intimate with their partner. “I spoke about HS and told them I had this condition before any intimacy,” they shared. “By the time we became intimate, she said it was far worse in my mind, which was her way of putting me at ease.” The first time might still be hard, but it helps if your partner knows what to expect.

Explaining hidradenitis suppurativa can also help with pain-related concerns. “I was just up front and honest,” one member said. “This is the deal: It is not contagious, it can affect our sex life sometimes, and there may be times when I may not want to be touched at all.” When your new partner understands, they’ll be better able to care for you when you’re in pain, rather than wondering what’s wrong.

How To Talk About Hidradenitis Suppurativa

You don’t have to share everything about HS all at once. One member explained how they eased into the conversation: “In my experience, most people will understand if you are straight with them. Initially, I would just tell the person I was dating that I had a serious and painful skin condition and would explain it in more detail if we started getting serious.”

When you’re ready to talk about it, decide what you want to share with your partner. At the very least, they should know the basics about hidradenitis suppurativa, like the fact that it isn’t contagious or transmitted sexually. You can be direct or bring it up naturally, like when mentioning a recent dermatology appointment. Remember, it’s your choice when and how to share about your medical condition.

When the person you’re dating knows the facts about hidradenitis suppurativa, it’s easier for them to understand you. Sharing about HS is part of letting them get to know you.

Talk With Others Who Understand

At myHSteam, you’ll find the social network for people with hidradenitis suppurativa and their loved ones. On myHSteam, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.

Have you tried dating with hidradenitis suppurativa? What was your experience like? Share your experience in the comments below, or start a conversation by posting on your Activities page.