In this qualitative study, 21 adults living with hidradenitis suppurativa (HS) were interviewed about their healthcare experiences. Participants detailed how delay in diagnosis, lack of provider knowledge, inadequate pain management, poor access to care and stigmatization negatively affected their interactions with the healthcare system. Improving disease knowledge among providers, proactively addressing HS-related pain and coordinating access to multidisciplinary care may improve healthcare experiences among individuals living with HS.