HS is a challenging disease to manage, and even when you get an accurate diagnosis, it can be private, uncomfortable, and unpredictable, says Elizabeth Seng-Tamaccio, PhD, an associate professor of psychology at the Ferkauf Graduate School of Psychology at Yeshiva University in New York. But people often don’t get the correct diagnosis at first and may experience hurtful comments from doctors, partners, or family members who don’t understand that HS is a disease, not a hygiene problem, she says. “Dating and relationships always require opening up and being vulnerable with another person,” Dr. Seng-Tamaccio says. “People with HS have this additional barrier to overcome, based both on their disease and likely compounded by their previous experiences.” HS can also affect patients’ sex lives, especially in women and people with active lesions in the groin and genitals, which can be painful and malodorous, according to a study published in April 2019 in the Journal of Clinical Medicine. “HS, because of where it happens on the body — around the breasts in women, on the genital area, on the thigh — it’s involving the skin that our sexual partners or intimate partners are going to see and touch,” says Joslyn Sciacca Kirby, MD, an associate professor and vice chair for education in the department of dermatology at Penn State University. It’s normal to be concerned about how they will be seen, but there is a lot you can do to make dating with HS easier. Here are some common dating issues you may experience and strategies to help you deal with them.
1. I feel too insecure to date. What can I do to build my confidence and self-esteem?
Start by working with a good treatment team, says Seng-Tamaccio. “You want to know that you are doing everything to tackle your HS management with a team that is there to support you,” she says. A therapist can really help. “Working with a therapist through cognitive behavioral or acceptance and commitment therapies can provide useful tools to help build resilience,” says Seng-Tamaccio. “In particular, self-statements can be used to help combat whatever unhelpful thoughts have built up from your past that are impacting your sense of self.” With professional help, you can begin to understand how your brain automatically interprets situations and find alternatives that will help you reach your goals, says Seng-Tamaccio. You may have beliefs about yourself from years of dealing with HS, and a self-statement can help. “For example, if you have a belief that you are not a worthwhile partner because of HS, a good start for a self-statement might be, ‘I am a valuable partner,’” she says. “You want to spend some time thinking about all the things that make that self-statement true, so you can have confidence when you use it throughout the day.”
2. When — and how — should I tell a new partner about my HS?
Since many HS lesions occur in private areas, it can be difficult to disclose them to a new partner, says Seng-Tamaccio. “Whenever you feel like you are hiding a secret, it can become a source of shame,” she says. “But having HS is nothing to be ashamed of. Choosing to tell your new partner early in a relationship can give you the freedom to deepen the relationship without fear.” Practice telling others in your life about HS, just as you would tell someone about any other chronic disease, suggests Seng-Tamaccio. “Talking about your HS can take away its power to interfere with your self-esteem,” she says. “Potential partners who are put off by the fact that you have a noncontagious, chronic disease are likely unprepared to be partners in any long-term relationship.”
3. How do I deal with a fear of rejection due to HS?
“The best way to tackle fear is through exposure — not to rejection but to telling others about HS,” says Seng-Tamaccio. Practice confidently telling others that you have a chronic disease called HS, that it is not contagious, and that you work with your doctors to manage it but sometimes have flares of painful lumps on your skin. “This is a small part of you, but just a part,” she says. By telling others in your life, rather than keeping it a secret, you remove the stigma both for yourself and for others who are also managing HS.”
4. What if my partner is worried about catching HS?
HS is not an infection, and it’s not contagious, says Dr. Kirby. It’s caused by an overactive immune system. Let your partner know that this condition will not affect them, except to the extent that you may need to adjust positions if an HS flare makes certain sex acts uncomfortable.
5. What can I do if HS makes sex painful?
It might be awkward, but it’s important to bring up this concern with your healthcare provider so you can discuss the most effective ways to treat and manage the condition. “Sex is an important part of life, and your provider must know the ways in which HS is limiting your quality of life,” says Seng-Tamaccio. It’s also helpful to consider the broad spectrum of sexual activities you and your partner can engage in. “When you’re in the middle of a flare, certain sexual positions may be painful, but there may be other creative ways to bond with your partner that you both find pleasurable,” says Seng-Tamaccio.
6. What if my partner isn’t supportive?
“Not every person is prepared to come alongside and support a partner with a chronic disease,” says Seng-Tamaccio. “Telling a potential partner early in the relationship, and gauging their reaction, can help you make a decision about whether you want to expend the time and energy to build the relationship.”
7. What if my partner and I need more help?
Consider reaching out to an intimacy counselor. “There are some intimacy counselors out there who help people with chronic medical conditions, whether it’s HS or otherwise,” says Christopher Sayed, MD, an associate professor of dermatology at the University of North Carolina School of Medicine in Chapel Hill. Check the directory of the American Association of Sexuality Educators, Counselors and Therapists for providers in your state.
