What It's Like to Live With HS
Living with a painful skin condition like hidradenitis suppurativa (HS) can feel isolating and scary. These HS influencers are breaking the silence about this misunderstood chronic illness.
At first, hidradenitis (HS) doesn’t seem like it should be that bad. Who hasn’t had an ingrown hair now and then under their arm or in their groin? But HS isn’t anything like those once-in-blue-moon lumps. This chronic inflammatory condition causes recurrent, painful bumps (and eventually boils) that can seriously interfere with movement and cause significant scarring. It’s thought to begin with inflammation around hair follicles that eventually causes them to break open, which then causes more intense inflammation. Much like with other inflammatory conditions like rheumatoid arthritis and psoriasis, it’s not clear how the initial inflammation around the follicles is triggered.
While the exact cause is unknown, people living with HS say it can be a daily challenge until you find the right care options—which often include dietary changes, medication, and even surgery. Plus, stigmas around this skin condition still exist, with many believing it’s contagious or an STD (both 100% wrong!).
To better understand what living with hidradenitis suppurativa is really like, we asked four HS patients and social media influencers to weigh in.
Selina Ferragamo of @hidradenitis.selina, 24, Long Island, NY
Vincent Nguyen of @plantbasedvince, 29, San Jose, CA
Sara Tanner of @sara.reliving, 23, Peoria, AZ
Starla Mathis of @starlakmathis, 32, Indianapolis
Here’s what they had to say.
Q: Many HS sufferers go for years without getting properly diagnosed. What was your experience like?
Ferragamo: I first started showing signs of HS in 10th grade and suffered for four years before I even heard the name hidradenitis. I remember getting flares in my groin area and being uncomfortable sitting in the hard desk chairs in class. In college, my armpits started getting massive boils that wouldn’t go away. I truly just thought they were ingrown hairs caused by not changing my razor blades often enough. I would go to one of those emergency-care centers, where they would lance and pack the flare. They would test for MRSA (a type of antibiotic-resistant staph infection) every time, too, but it would always come back negative, and I never had any answers about what was actually going on.
When it started getting really bad in my junior year of college, I went to a primary-care doctor who referred me to a general surgeon who was the first to mention the name hidradenitis. This doctor performed surgery under both my arms at the same time (not fully removing all my lymph nodes, glands, and hair follicles), and it got even worse. After two months of destroyed arms, I changed primary doctors and saw a different surgeon who’s become my absolute hero on my HS journey. He’s performed two surgeries under my arms to repair the damage, and schedules me ASAP whenever I have a flare-up.
Nguyen: I was about eight when I had my first HS experience, but I didn't get diagnosed until I was 18, by a dermatologist. I was told I only had two options: antibiotics or surgery. I went with antibiotics for a while, but stopped because the meds made me not feel well. Then, at 27, I had two new flare-ups that put me on disability, and that’s when I opted for surgery. Since the procedure and adopting a vegan lifestyle, my HS has been in remission. No more shame, no more embarrassment. I’m thankful to finally have my life back after suffering for 21 years.
Editor’s note: HS sufferers report that some dietary measures, such as eliminating dairy products, limiting simple carbohydrate and sugar intake, and avoiding nightshades and foods containing brewer's yeast, are helpful, but further research needs to be done to determine whether dietary changes have any benefit.
Tanner: For a long time, I didn’t know I had HS. It started in high school, around age 16. I began to get recurring hard bumps and abscesses under my arms. They were very painful, and I was mortified to wear tank tops or any top that could expose my skin. I felt disgusting and awful. One week they’d be there, the next they were gone with scars left in their wake. As the years passed, I progressively got more bumps and abscesses anywhere skin met skin, like my inner thighs, buttocks, and under my breasts. It wasn’t until I was 21 and recently gave birth (my symptoms got even worse after childbirth) that I found out what HS was and asked my doctor for more information. I was then sent to a dermatologist who confirmed I had HS. Once I was told there was no cure and it’s often hereditary, I fell into a very dark space. My biggest concern was, “Am I passing this awful, disease down to my children?” so I made an important decision to be confident in myself and honest if/when my children ask about or experience HS themselves. It took me a couple of years to accept this disease will stay with me forever, until a cure is found.
Q: What is life like during a flare?
Ferragamo: Flares are painful lumps or boils/cysts found either on top of or underneath the skin. They vary in size, from a pea to a baseball, and they're extremely painful and uncomfortable no matter how big or small! I’ve had flares under my armpits that were so massive that the vibrations of my footsteps would shoot up my body and cause too much pain to walk or bend over. Sometimes, you can’t wear deodorant or shave, so you have to deal with embarrassing body odor and armpit hair. I’ve had flares in my groin that made it impossible to walk. I’ve had flares on my butt that made it impossible to go to the bathroom without experiencing excruciating pain. I’ve had flares in my groin or under my armpits so bad that I wasn’t able to wear underwear or a bra.
Nguyen: Life with active flares is very difficult. Besides the constant pain that came with the flares, every day was a battle with stains and bandages [the lesions often drain pus and fluid]. I could wear only dark-colored clothes. To cope with the pain and embarrassment, I started drinking alcohol at the early age of 16, and did things just so I could feel like I'd fit in. I also had to cancel a lot of plans because of the flares, and had no love life because of it, either.
Q: How does HS affect your body image and overall mental health?
Mathis: During my HS outbreaks, my bumps would itch so badly that I would scratch and scratch to no relief, until I eventually dug into my skin—causing the bump to bleed and then release pus. I was very self-conscious and I would never lift my arms up in fear of someone seeing my scars, which look like lumpy, discolored skin. As I've gotten older, I have embraced my scars as a part of my story.
Ferragamo: HS has really taken a toll on my body image and mental health. For example, one time I was at a party and wearing a sleeveless dress when someone poked me in the gauze under my arm because they thought it was just paper towels for sweating. Moments like that can make dealing with HS really difficult, but I try to remember my all-time favorite quote from Dr. Seuss: “Those who mind don't matter, and those who matter don't mind.”
Tanner: My body image was damaged ever since my symptoms started to show. From ages 17 to 23, I never wore tank tops or shorts. I rarely wore swimsuits and would just wear a T-shirt and swim shorts when I was swimming. I hated the scars that were left behind. These days, my mental and physical health are improving, due in part to my recent weight-loss surgery—which has helped me start losing excess pregnancy weight. As I lose weight, my symptoms grow increasingly more tolerable. I even wear tank tops and shorts almost every day now!
Q. What does your HS treatment or care routine look like?
Mathis: While I don’t use medication to treat my HS, during flare-ups, I do my best to let the area get air, keep clean, and moisturize and deodorize with coconut oil. Most importantly, I do not scratch. When I feel itchy, I run hot water on the affected area followed by cold, which helps relieve the itchiness a bit.
Ferragamo: My HS was serious enough to require surgery, so as treatment, my general surgeon removed my lymph nodes, glands, and hair follicles under my armpits two years ago. Then, a plastic surgeon removed the damaged skin, made an armpit area, and closed up the wounds. I then started seeing an endocrinologist who began treating me for polycystic ovary syndrome (PCOS), the disease they think brought on my HS in the first place [PCOS, which is associated with high levels of insulin and androgens, a hormone that stimulates hair follicles, is a common co-diagnosis in women with HS]. Although, PCOS cannot cause HS. The endocrinologist prescribed me metformin and spironolactone, and they’ve really helped reduce the frequency of my flares. I also use antibacterial body wash and try to make sure my flare-prone areas remain dry. My eating habits have had to change completely, too. I can’t have gluten, dairy, nightshades (like tomatoes, potatoes, bell peppers, and eggplant) and processed sugars and fats, which seem to make them worse and more frequent.
Nguyen: Now that I’ve adopted a vegan lifestyle over the past two-and-a-half years, my flare-ups have been super minimal and, when I do flare, there’s little to no pain and the boil pops within days—whereas it used to linger for about a week or more in the past. Only two things trigger me these days—eggplants and stress—so I stay away from those to keep my HS in remission.
Q: What does being an #HSWarrior mean to you?
Mathis: Loving my HS scars outwardly and sharing my HS story is how I raise awareness on my platform and encourage others to do the same—to me, that is what being an #HSWarrior is all about.
Ferragamo: I never thought I would be able to put myself out on the internet and talk about HS, but being an #HSWarrior is so important to me. It means being strong and not easily torn down. It means making the most out of a terrible situation and overcoming obstacles many people don’t understand.
Nguyen: To me, being an #HSWarrior means survival—because that's what we do. To get through the day living in agonizing pain is not easy, so this term describes every HS warrior who keeps their chin up and takes on the day.