Here are some ways to feel less alone and connect with others if you have HS.
1. Talk to family and friends about your condition
If you’re close with your family and friends, they can form a support network for you and may even be able to help when it comes to doctor visits and accessing resources. “The more honest you are with the people who mean the most to you, the easier it is for you to get the support you need,” says Andrews. So how do you start? “If someone was dealing with this alone and needed to share this with a family member, the best way to me is always in honesty and in earnest,” says Andrews. “Just tell them what’s going on [and about] your diagnosis. Be prepared for questions.” Come to the conversation ready to share some basic facts about HS.
2. Join a support group (virtual or in person)
Since HS only affects about 1 percent of the population, according to the National Organization for Rare Disorders, you might not know many people — if any — who have it. A support group can help you connect with people who can relate to what you’re going through. “The idea is that you can come together with people who have that same condition and get tips and insight and just camaraderie with other people who have HS,” says Andrews. Some people enjoy talking in a group; others prefer more private, personalized conversations. Visit Hope for HS to find a support group that meets your needs.
3. Work with a therapist or coach
Some people prefer one-on-one help, especially when discussing flares in private areas, Andrews says. The initial diagnosis could shock you, and a counselor or coach can help you talk through your feelings so you don’t have to go through it alone. They can also help you develop skills to make your social interactions more positive. For example, people often need assistance navigating how to tell dating partners about HS flares in intimate areas. “We would do some role-playing in that area to help them feel a little bit more comfortable about approaching that conversation with a love interest,” says Andrews. A clinical psychologist can help if you are struggling with depression or another mental health challenge. A review published in June 2019 in JAMA Dermatology shows that people who have HS have an increased risk of depression compared with those who don’t have the skin condition.
4. Connect on social media with others who have HS
Some people don’t feel comfortable discussing their condition in such a public setting, says Andrews. But if you don’t mind posting publicly, a social media group could give you an outlet for sharing experiences and tips.
5. Find alternate ways to connect if you can’t join in on activities
Let’s say a group of friends is going hiking, and you’re unsure whether you should go. The friction might be painful in areas where you’re flaring. “If you can join in anyway, I would encourage being a part of that social excursion in the best way that you can do it,” says Andrews. Being social and connecting with others is healthy, so if you can do it without pain, it might be worth a try. But if it would be debilitating, ask for a rain check. Be honest, and if you’re not ready to explain, simply tell them you’re not feeling well. Suggest an alternate activity, such as watching a movie together over Zoom, that you can do comfortably.
6. Exercise with a group
You need to find the exercise that works for you, depending on the location of your lesions and severity of your symptoms. Once you determine what works for you — perhaps slowly walking or doing some light weight lifting to start — join a group so you can enjoy the benefits of exercise while socializing, suggests Andrews.
7. Help spread HS awareness
One way to connect with others in the HS community is to participate in events and activities that bring attention to this commonly misunderstood condition. “We’re really interested in creating awareness, because people don’t know about it,” says Andrews. They may have misconceptions, such as thinking it’s contagious. Participating in HS Awareness Week, typically held in June, can be a good opportunity to get involved.
