Melissa McKinney first noticed symptoms of hidradenitis suppurativa (HS) after puberty. Painful boils and inflamed skin became a regular part of her life, yet for years, she had no clear answers. It wasn’t until she turned 30 — after countless visits to doctors and dermatologists (skin specialists) — that she finally received a diagnosis.

“It was a bittersweet day,” she recalled. “I was happy to know there was finally some science supporting this disease.”

Now 42 and living with stage 3 HS, Melissa has learned to manage her condition through lifestyle adjustments, trial and error, and a commitment to self-care.

Finding a Routine That Works

Over the years, Melissa has developed a personal approach to managing HS at home. A healthier lifestyle has been key — she avoids smoking, alcohol, and heavily processed foods. To soothe flare-ups, she relies on hot compresses, ibuprofen for inflammation, and a mix of topical and oral antibiotics when necessary.

She also uses antibacterial washes like Hibiclens, wears loose clothing to minimize friction, and avoids excessive sweating. “I get lots of rest and do what I can to keep my skin happy,” she shared.

Living in the South, where heat and humidity can trigger flare-ups, Melissa has made adjustments to stay comfortable. “I limit my outdoor activities to when it’s cooler, exercise in an air-conditioned gym, and I’m very careful about where I swim,” she explained.

A Journey of Trial and Error

When Melissa was first diagnosed, there weren’t many resources or support groups available. “It was all trial and error,” she said. Over time, she has learned what works best for her through experience.

One of the most valuable lessons she’s discovered? The importance of self-care. “Use all the methods, all the treatments — try everything until you find what works for you. Everyone is different,” she advised. “Take the naps, the long showers, the slow walks. Meditation has been really helpful for my mental health.”

Finding Support in Healthcare

Melissa’s experiences with healthcare professionals have been mixed. While some providers lacked awareness of HS, others made a significant positive impact on her life.

“The most helpful doctors have been the ones who truly understand HS, its symptoms, and the latest treatments,” she said. “A compassionate dermatologist or doctor makes a huge difference because we suffer with a lot of pain.”

Living With Gratitude

Beyond managing HS, Melissa finds joy in the little things. A self-described “fun-loving Texas girl with a free-spirited heart,” she works in hospitality and as an in-home caregiver, bringing comfort to those who need it most.

“Bringing smiles to people’s faces helps me through the bad days,” she said. She also finds fulfillment in volunteering, gardening, and spending time with animals: “Living in gratitude helps keep the blues at bay.”

Share Your HS Journey

On myHSteam — the social network for people living with hidradenitis suppurativa and their loved ones — members come together to ask questions, give advice, and share their stories with others who understand life with HS.

What lifestyle changes have helped you manage HS? How do you navigate challenges like flare-ups, pain, or finding the right treatments? Share your experiences in the comments below, start a conversation by posting on your Activities page, or connect with like-minded members in Groups.