Lessons From the Hidradenitis Suppurativa In America Survey: Quality of Life Impact

Hidradenitis suppurativa (HS) is a misunderstood and misdiagnosed condition that greatly affects those who have it. HS symptoms can be difficult to manage, painful, and embarrassing. We asked about day-to-day challenges and HS’s emotional impact in our 2021 Hidradenitis Suppurativa In America survey. More than 400 people responded.

Symptoms and pain impact quality of life

Community members said HS symptoms and pain greatly impact their quality of life. Almost all respondents said they have had lumps and lesions under their skin, drainage, abscesses, and scarring. Community members said those symptoms make them feel self-conscious and embarrassed. Those living with HS often have lower self-esteem because of the condition.

• 95 percent experience HS pain
• 62 percent report the pain caused by HS directly impacts their quality of life
• 66 percent often experience lower self-esteem

Daily living is negatively impacted

The pain, odor, pus, and appearance of HS can disrupt daily activities, social lives, romance, and even jobs. People living with severe HS are more likely to miss out on social events. More than half (56 percent) of respondents say they have a fear of sex and intimacy because of the condition. Education is also disrupted for some.

• 36 percent often miss out on social and recreational activities and hobbies because of HS
• 20 percent say they often miss work or school because of HS

Some community members have had to adapt and make changes in their daily lives because of HS. Simple tasks like figuring out what to wear and what to eat can be a challenge. Even a good night’s sleep is hard to obtain for some.

• 36 percent say it is hard to find clothing that does not trigger HS symptoms
• 30 percent often make dietary changes to help relieve HS symptoms
• 26 percent report their quality of sleep is poor because of HS

HS takes a huge toll

The invisible burdens of HS can take an emotional toll. More than half of community members have also been diagnosed with depression, anxiety, and/or panic disorders.

• 58 percent have anxiety or panic disorders
• 55 percent were diagnosed with depression

The emotional impacts of HS can also get in the way of seeking out support from friends and family.

• 47 percent feel like burdens when they discuss HS with family and friends

Managing mental health

Those living with HS understand that the disease carries a heavy burden. That is why many use tools and resources to help manage their mental health and emotional well-being. Some of the most common coping methods include prescription drugs, meditation, and talk therapy. Other methods include hobbies, getting lots of sleep, exercise, and talking with others who have HS.

HS misinformation and misconceptions hurt

There are many myths about HS. Some are that the disease is contagious, that it is caused by an infection, or that it happens because of poor hygiene. These myths factor into the emotional experience of living with HS.

• 48 percent say people mistake HS symptoms for poor hygiene

HS Warriors describe it as a painful and misunderstood disease

Capturing the mental, physical, and emotional toll of HS can be challenging. The disease impacts so many areas of life. Some community members came up with creative documentary titles to highlight their experiences with HS. We have listed a few, along with how they said they came up with the title.

The Skin Condition NO ONE Understands

Even within the medical community, there's debate over whether HS is simply a hormonal condition, an immune condition, or a dermatological condition.

The Battle Within, the Skin I’m In!

It's a daily battle to deal with the constant changes skin goes through with HS.

My Painful Secret

HS is embarrassing. People don’t understand what it is and assume it’s contagious or an STD.

Silent Isolation

Every day that passes, HS holds back patients from doing what they want.

The Hidradenitis Suppurativa In America survey was conducted online from September through November of 2020. The survey was completed by 406 people diagnosed with hidradenitis suppurativa.