Answer Summary

Members opened up about what they wish others understood about living with hidradenitis suppurativa, with the overwhelming consensus being... Read more

Members opened up about what they wish others understood about living with hidradenitis suppurativa, with the overwhelming consensus being that HS is not caused by poor hygiene, is not contagious, and involves intense physical pain that makes even simple daily activities like walking difficult. Several members described the profound emotional toll of the condition, including feelings of embarrassment from visible scarring, isolation from loved ones, suicidal thoughts, loss of confidence and dignity, and the exhausting challenge of explaining an invisible illness to people who judge what they cannot see. A recurring theme was the frustration with limited treatment options, long wait times to see dermatologists during flare-ups, years of misdiagnosis, and the deep wish for more public awareness so that people with HS are met with empathy and kindness rather than assumptions and judgment.