I. Introduction

Many people with HS report a decreased quality of life, or enjoyment of their life, due to their symptoms. HS can cause pain, odor, drainage, and itching; these symptoms can in turn affect mental health, daily activities, and sexual health. While there is no cure for HS, treatments can help reduce symptoms and improve quality of life.

You can keep track of how HS is impacting your quality of life by paying attention to how engaged you are in your daily activities and by tracking your mood. If you find that your HS symptoms are preventing you from enjoying activities as much as you could, that means that HS is having a negative impact on your quality of life.

II. HS and Mental Health

HS can affect mental health in many ways. Up to 25% of people with HS may have a co-existing mental health condition. Compared to people without HS, people with HS are about twice as likely to experience depression and 70% more likely to have an anxiety disorder. Substance abuse is over two times more common in people with HS than people without HS as well. These risks are correlated to disease severity; they increase with more severe HS. HS is considered a condition that elevates the risk of suicide. However, proper treatment of both the physical and mental effects of HS can reduce that risk.

You can evaluate your own emotional well-being by keeping track of your mood and noting if you feel down or depressed. You should also try to assess if you feel a decreased interest in your usual activities or hobbies. Let your healthcare provider know right away if you have any negative mental health symptoms or any thoughts of harming yourself.

It is just as important to address your mental health as it is to seek medical care for your HS skin condition.

Chapter 11 discusses how to make the most of your HS visit.

III. HS and Daily Activities

Daily activities can be impacted by HS. In one study, over 60% of people with HS reported missing work due to their symptoms. In another study, 20% of people with HS reported decreased productivity while at work. Some people with HS may face losing their jobs due to missed work days or the inability to perform work duties. In one study, almost 25% of people with HS reported that they were unable to advance in their jobs due to their HS. For younger people with HS, symptoms may get in the way of doing well at school.

It may be difficult to exercise with active HS disease. Tight clothing may also make HS worse, so loose-fitting clothing may be a better choice. Sleep may also be disrupted by HS. People with HS may experience difficulty falling asleep, less restful sleep, and daytime dysfunction as a result. Information on lifestyle changes that may be helpful for people with HS, including tips on exercising and clothing choices, can be found in Chapter 14.

Try to take note if there are any daily activities, school tasks, or job functions you do that seem to consistently worsen your symptoms. Your healthcare provider may be able to help you come up with helpful solutions or accommodations, such as requesting a standing desk at work (if buttock or groin bumps make sitting painful, for example).

IV. HS and Sexual Health

HS symptoms such as odor, pain, and drainage can make it difficult to feel comfortable in social settings. These symptoms can also make intimate relationships difficult for both men and women with HS. This is especially true in cases of HS involving sensitive body areas such as the genitals or breasts. People with HS are around 40% more likely to find it difficult to participate in sexual activity compared to people without HS. In one study, 65% of women with HS reported that pain significantly affected their sexual relationships. The study also found that 56% of men with HS felt that drainage significantly affected their sexual relationships. Almost half of the survey respondents reported a fear of rejection or fear of how their sexual partner would react to their HS.

Sexual health concerns can and should be discussed with your healthcare provider. Just as it is useful to monitor changes to your physical and mental health, it can be helpful to take note of changes to your sexual health and wellbeing. By integrating additional factors like this into your symptom tracking process, you may be able to better evaluate your treatment response.

Identifying not only what triggers your HS but also all the ways that HS impacts you can be the first step to improving your quality of life

Information on effective tracking tools, including the free HS app that will be available soon, can be found in Chapter 26.