Living with Hidradenitis Suppurativa

Joey Torre feels that advocating on behalf of fellow hidradenitis suppurativa patients is his life's purpose. Joey Torre lives with hidradenitis suppurativa (HS), a painful, chronic skin condition that affects up to 2% of the population. The disease causes the formation of bumps, lesions, or boils in sweat gland areas, such as the armpits and groin. Joey also experiences extreme fatigue, which can sometimes accompany HS, requiring him to constantly manage his energy levels to stay productive. His journey with HS, spanning 15 years so far, has impacted every aspect of his life and taken him in unexpected directions. In his early 20s, shortly after being diagnosed with HS, Joey rebelled against the notion that he needed to adjust his life to accommodate a chronic health condition. He was a heavy smoker who enjoyed partying and drinking, habits that could exacerbate the severity of his HS flares. During this time, his flares were rock hard, painful, oozing, and pungent. After years of enduring not only physical pain and discomfort but also anxiety and depression related to his disease, he finally made the decision to adopt some lifestyle changes. Joey began working towards a life of discipline, eliminating smoking and drinking while adjusting his diet and adding in some exercise. It took time, but these lifestyle changes eventually calmed down his HS flares to more manageable levels. He began to examine his relationship to HS, realizing that hiding this part of himself was doing more harm than good. This led him to become an HS advocate through social media, educating others about his disease while creating community for those who share his diagnosis. In this episode of the Major Pain podcast, Joey recounts his journey with hidradenitis suppurativa so far and describes how learning to manage this disease has made him a better person. Initially, he would have done anything to eliminate HS from his life, but he now considers his work as an HS advocate to be his life's purpose. He also shares practical tips for managing this disease, and common misconceptions people often have about HS. Find more information about HS at https://hsdisease.com, including articles written by Joey. Our Major Pain bonus episode for the month of February is now available. While Jesse's health has moved in a positive direction, Andi has been having the opposite experience. They discuss their crisscrossing journeys in this bonus episode for our Patreon subscribers. Click here to listen.