The Loneliness of Living with Acne Inversa

Imani Futrell was 11 years old when she first noticed a tiny bump on her groin. She thought nothing of it, but before long, another surfaced on her underarm — then another on her buttocks. Soon, those tiny bumps grew into large cysts that she felt she had to cover up with surgical bandages. It would be another five years before Futrell went to her doctor to find out what was going on.

“They told me, ‘This is what we think you have — and it isn’t curable,’” Futrell recalls. “I was like, ‘Excuse me?’ Because I’ve never dealt with anything [like this].” The skin condition in question was hidradenitis suppurativa, also known as HS, or acne inversa, due to its painful, acne-like bumps and boils. Futrell has had HS for over a decade now, and she is currently waiting to undergo a second surgery on her arms to treat it. It’s a temporary fix for a problem that will likely recur. “That’s the thing about these bumps,” Futrell tells R29. “They’ll heal but there’ll always be more.”

What is hidradenitis suppurativa?

At first glance, HS can look like ​​other common skin conditions such as standard-issue acne and ingrown hairs, but it is neither of those things. It’s difficult to estimate how many people are affected around the globe, but we do know that it affects women more commonly than men — and Black women more than any other group, the American Academy of Dermatology Association reports.

Often initially mistaken for blackheads, the inflammatory skin condition eventually causes deep, painful cysts, lesions, and oozing abscesses in areas of high contact or skin-to-skin friction, where hair follicles and sweat glands are present. This typically includes the armpits, groin, thighs, and breasts. “The painful cysts [are] like big pimples — red, tender, and swollen,” explains Sandra Lee, MD, a board-certified dermatologist and founder of SLMD Skincare. “These cysts can form tunnels under the skin called fistulas.” A “bump” can occur in one place, says Dr. Lee, but as it tunnels under the skin, it eventually surfaces and oozes in a different area close by.

What causes hidradenitis suppurativa?

Though debilitating, the cause of HS is not fully understood. However, Dendy Engleman, MD, a board-certified dermatologist at New York’s Shafer Clinic, explains that it is thought to begin with hair follicles that become clogged with keratin (a protein that helps form hair, nails, and your skin’s outer layer) and a buildup of bacteria that eventually bursts and is released to other hair follicles. They, too, become clogged, continuing the spread. A flare-up can be triggered by lots of things, including: menstruation, weight gain, stress, hormonal changes, excessive heat, smoking, and sweating.

As someone who is afflicted with HS myself, hormones tend to fuel my mild outbreaks. I know exactly when my period is due, for example, because I’ll get a flare-up. Though the condition can feel isolating, I’ve discovered a huge internet support system. Over on Reddit, 25,000 people often share their triggers, symptoms, and remedies. On TikTok, there are 60.5 million views for the hashtag #acneinversa and a further 530 million views for #hidradenitissuppurativa. We’re here — quiet yet brave. That said, our path to acceptance and awareness continues to be a challenging one: Futrell, for example, is finding herself a target of TikTok’s ongoing campaign to remove and silence people speaking out about their not-so-aesthetically-pleasing skin conditions, facing chronic reports and a potential ban of her HS content.

What is it like to live with HS?

I self-diagnosed my acne inversa before a dermatologist confirmed the skin condition. Living with it can be lonely. “Areas ooze, and since these are areas that are more easily hidden from others, a person with HS often suffers in silence and doesn’t share this condition with others. They tend to feel very embarrassed and depressed about it,” says Dr. Lee. Because HS is often not immediately visible, those with the condition can feel ashamed to disclose their symptoms. HS is known to affect self-esteem, warping your perception of attractiveness, while research suggests that plenty of people with HS report feeling a fear of rejection or the reaction of a sexual partner.

Cydney Carter was diagnosed with HS in 2014 after nearly eight years of experiencing symptoms. The lack of knowledge surrounding her condition was frustrating, and it wasn’t long before HS started to take a mental toll on her. “I was just in this shame box,” Carter tells R29. “I don’t know how many times I’ve cried. It made me feel not pretty. You see so many people with perfect skin and perfect bodies, and sometimes you just want to be like that. It’s hard,” she says. “There’s been a lot of tears and pain, especially when you think you’re the only person that has it. I felt like that for a long time. You just feel alone.” Growing up, Carter says that no one knew anything about her HS diagnosis. “I was struggling mentally, especially going through puberty. In high school, I always felt like I was so different, but nobody knew why. I didn’t like myself very much, so I was pretty mean. I acted out in ways that I absolutely cringe at now.”

Like Futrell, Carter was relieved upon diagnosis — finally, a term for what ailed her. But it raised another question: Is this forever? “At least I know what I’m dealing with, but I’m going to have to deal with this for the rest of my life,” she says. Carter’s HS diagnosis was the beginning of a difficult time in her life. She became a mom while in high school. Carter says she broke under the pressure of being a single teen parent, which led to further stress on her body, and subsequently more HS flare-ups. Around this time, she started using drugs to cope with the stress of her personal life. That led to further outbreaks.

During Carter’s first pregnancy, her HS flare-ups were mild, but the majority of her anxiety was rooted in how her body looked. “The shame mostly came from when I gave birth; weekly check-ups when I had to start letting people see in between my thighs. That was probably the most nerve-wracking thing,” she says. Throughout her second pregnancy, however, her hormones took over, and Carter’s HS ran rampant. “I was always in the emergency room getting something lanced. I could hardly walk most of the time. I’m surprised I even got pregnant a third time after that.”

Futrell says that HS made her aware of her lifestyle more than anything else: no white sheets or white clothing, because staining from pus and blood is real. She wears a lot of long-sleeved tops to hide it away, despite friction from clothing possibly exacerbating the condition. It affects her romantically, too: When do you disclose a lifelong, chronic silent condition that may result in scarring and that oh-so-sexy term, pus? “I’m still not fully there, dating-wise,” she says. “I have to really explain this to people. I don’t know if I should tell them when I first meet them, or after we’ve gone on a couple of dates. This is just something that I’m going to have for the rest of my life. That took me a minute to understand because it’s not going to go away.”

I think I have hidradenitis suppurativa — what do I do now?

HS is hard to pronounce, but it’s even harder to diagnose. Despite being referred to as acne inversa, the skin condition is not actually acne. One thing that dermatologists want people to know is that HS is not caused by poor hygiene, dirty skin, or due to an infection; many mitigating factors are at play. “HS is characterized as a chronic condition that has the potential to substantially impact quality of life and mental health,” Dr. Engleman explains. “While there is no permanent cure, it can be managed through medicine or, in severe cases, surgery.”

Some licensed treatments for this condition are only available from specialist centers, and just like with many skin conditions, funding for research is lacking. But Dr. Alia Ahmed, a certified dermatologist in the UK, points out that there has been a lot more interest in this condition over the last decade. As a result, treatment options such as the aforementioned surgery, as well as oral retinoids, steroids, immunosuppressive treatments, and antibiotics, are emerging. Recent advancements in treatment options, such as a class of drugs called “biologics” and also newer surgical interventions like “deroofing” of the tunnels, have made living with HS easier, but there’s no one clear solution. “Early diagnosis is key in improving the manageability and decreasing the severity of HS,” Dr. Engleman says.

HS is a difficult condition to live with and people are often ashamed to come forward for medical help, but if it’s causing you distress, it’s important to face it head on. First off, visit a dermatologist, ideally one who has experience with HS. Dr. Ahmed says that delaying seeking help results in late diagnosis and difficulty in accessing treatment options. “There is also a lack of a definite pathway for treatment, so it can be some time before an effective treatment strategy is found,” she adds. “This can be distressing for patients, causing them to disengage from treatment plans.”

Why isn’t anyone talking about hidradenitis suppurativa?

Carter believes the lack of awareness surrounding HS is damaging. “HS is not rare, but it’s rarely talked about, and it is up to us to start advocating,” she says. Personally, HS has forced me to question what “perfect skin” looks like. Thanks to the rise in body care, we’re finding even more things to nitpick. I know I’m not the only one: When you have bumps and cysts that leave scars and dark marks on intimate areas, your first instinct is to want to erase them.

HS is a battle that requires empathy and compassion. For Carter, her faith in God, as well as the support of her husband and children, has provided her with the strength to speak out about HS publicly. Futrell will have deroofing surgery in July, and is actively raising awareness for the condition via TikTok (censorship attempts be damned). She finds it easier to look on the bright side. “It’s hard, especially being 25, because I’ve been told that this is my prime — this is when I’m supposed to be out and being happy, and it’s just a little secret that I have,” says Futrell. “It bothers me, but I have to tell myself, you just have to work through it.” Carter adds, “My sister told me you have to own your story to turn your pain into purpose, and you never know how your testimony can impact somebody else’s journey. Be loud about your HS, be loud about your pain.”

Similarly, Futrell no longer concerns herself with other people’s comfort — or discomfort — regarding her cysts and scars: “Don’t be afraid to wear the dress that you want to wear. Don’t be afraid to wear the tank top that you want to wear. Just find out what is comfortable for you and what works for you.”