Organizations such as HS Foundation, Hope for HS, and HS Connect offer education and connection for people living with hidradenitis suppurativa (HS). Getting to know other people who understand what life with HS is like can be a great comfort and provide an outlet for your stress and fears.

It can be hard to tune into your social life if your emotional battery is low. Take stock of your mental health – are you finding it hard to enjoy the things you used to? Ask your doctor for a referral to a mental health professional so you can get the support you need.  

Do you want to spend more time with friends, cultivate hobbies you enjoy, or feel more in control of your life? List your goals, and make them specific. Find a way to measure your progress and successes, and consider giving yourself a timeline for reaching your goals.

Because HS is often visible to others, or can have an odor, you may be faced with situations where an explanation is called for. Have short talking points at the ready so you don’t have to fumble for words in the moment and can instead say what you need to say and then move on. 

For those you’re closest to, an honest approach is a healthy one. If you’re dating, you’ll have to decide when the time is right, but being upfront builds trust, and may be necessary for any adjustments you may need for physical intimacy. 

You may avoid social gatherings, work events, or even one-on-one get-togethers because of your HS, but over time, this creates isolation. When you hold other people at arm’s length for too long, it can increase negative emotions. 

Do try to get out there, but don’t skip the self-reflection. If you’re feeling sad or angry or anxious, take time to notice. You don’t have to try to change your feelings, but by simply noticing them, you can think about what triggers these feelings and start to have more awareness of your overall state.  

Stress can make hidradenitis suppurativa worse. Support groups and connections with friends and family can help, but make it a habit to practice some proactive stress relief, too. Meditation, mindfulness, yoga, deep breathing exercises, and guided imagery are all great exercises to ground you in your body. 

Exercise is a proven mood booster, but it can be hard to get started and stay motivated to move. Doing workouts with a friend or two not only keeps you accountable, but it also delivers the one-two punch of physical fitness plus social community at the same time. 

Take an active role in your HS management – ask questions at your appointments, learn what you can about HS, and consider joining clinical trials to further research. By stepping up and leaning in, you empower yourself not just to provide good care for your HS, but for other areas of your life, too.