Living with Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is a long-term skin condition that is more than skin-deep. HS can impact your physical, mental, and emotional health. There is no cure for HS, and you may find that your daily living has changed while living with HS.¹

HS begins when clogged hair follicles cause bumps. Over time, it leads to symptoms like abscesses, inflammation, and scars. Because HS is considered a rare disorder, the overall mental and daily living impact has not been studied in detail. Studies that have been done show that HS can have deep mental and emotional effects.¹

We wanted to explore what it is like to live with HS on a daily basis. Here, you will find out some of the reasons why living with HS can be hard, how your relationships may be affected by HS, and some methods on how to cope with the disease.

Why can living with HS be hard?

The course of your journey with HS will look different than anyone else’s. You may be reading this and think that your symptoms are not that bad. Or, you could have painful symptoms that have bothered you for years. Sometimes you might find yourself somewhere between these 2 and have a hard time relating to anything you have read or know about HS.

The symptoms of HS can vary widely. Even if your skin symptoms are mild, you may still experience pain or discomfort that is hard to see. This can make it hard for those around you to understand why you are in pain or uncomfortable.

The visible signs of HS can be upsetting. You may have large, painful, and sometimes lesions that smell bad. This can lead to emotional distress and worry, along with the pain these may cause.²

You may become angry and irritable because of your HS symptoms. Depression and anxiety occur more frequently in those with HS. You might choose to stop going to certain social functions. All of these things can lead to a depressed mood or feeling anxious. It is important to call your doctor if you have feelings of depression or anxiety. There is help available to you.³

How are your relationships affected?

It may be difficult to explain your condition to others. Those who are close to you and care about you will want to hear you. Consider ways to explain to these people first. Keeping your explanation short and to the point will help to avoid any myths about HS.

Try to be upfront with your partner about any flare-ups you are having. You and your partner may have to make adjustments to your intimacy, but you can do it together.

Your relationship with your doctor is important. Make a list of questions or concerns before your appointment in order to remember them. Your doctor wants to hear about your mental and emotional health too – they are just as important as your physical health.⁴

How do you cope with HS?

Understanding your own thoughts, feelings, and reactions to living with HS can be your first step in learning to cope with HS. Once you understand these, you can begin to communicate to those people in your life who are important to you.

Remember that your mental and emotional health are important to your overall health. You are not alone in your feelings. Talk to your doctor about these things.

Online communities and forums with people living with HS may provide you with more support. Surround yourself with those who love you and understand you. You will find and develop a meaningful quality of life while living with HS.⁴