The room was filled with a palpable feeling of desperation.
I was surprised at how many people actually showed up. I had wondered five minutes before if anyone else would even come. I mean, who really wants to commiserate about having painful, weeping bumps in their lady parts?
I thought I did, or at least I thought meeting other people who had this disease would somehow make me feel more okay. It didn’t. It actually made me feel worse. It made me feel like there wasn’t any hope for relief.
But there we were, our eyes wide as we glanced anxiously at each other. We talked in hushed tones and smiled politely if we locked eyes.
I wonder if she gets bumps in her groin or her armpits, I caught myself thinking. And, Maybe she’s in pain right now because they’re on her buttocks or along her bra line. And then, She’s pregnant! Am I going to have to deal with this while carrying a child?
I had just fussed with two bumps on my panty line before the meeting and I could feel them throbbing as soon as I sat down. Both had already been draining and painful to the touch but I had still squeezed them earlier to try and bring about some relief. Unsurprisingly, it didn’t work, but after so many years of suffering, I had learned to (or at least tried to) put the discomfort out of my mind.
Looking around, there weren’t any obvious signs anyone in the room was in misery. There wouldn’t be. Hidradenitis suppurativa, this skin disease I’ve lived with for more than a decade, causes a hidden kind of suffering. If you have it, chances are probably pretty good you waited years to even think about seeking help for it because trying to explain it to anyone else is sob-inducing.
I still remember when I first read about hidradenitis suppurativa, or HS. My boyfriend at the time was asleep in our bedroom, and I was perched on our red couch scouring the internet for answers. It was the middle of the night, and I was desperate for any kind of information that might help me. Desperation is a common theme with this disease.
My armpits were full of red, painful bumps that would pop like big pimples and then ooze for weeks. I was already self-conscious about being heavy-set and I was embarrassed and ashamed about what was happening. At that point, I’d had the disease for years but had no idea what it was and I hadn’t told anyone what I was experiencing. It was mild enough that I could keep it a secret and I was mostly able to put the discomfort out of my mind. When I finally did seek help, I was misdiagnosed with acne, folliculitis, boils and other common skin conditions, and the treatments I was prescribed for them didn’t do anything for me.
“I quietly cried as I scrolled through graphic Google images of lumps the size of baseballs taking over people’s bodies. 'Is this what my future holds?' I remember thinking.”
But that night I finally discovered a website discussing the symptoms of HS and I instantly knew that it was what I had. The site revealed HS is an inflammatory disease and its exact cause is unknown. At that time, it was estimated that roughly 1% of the US population suffered from some form of HS — it’s estimated to be about 4% now (and believed to be higher, but unreported or undiagnosed).
HS affects women almost three times as often as men, and is more prevalent in African American individuals, as well as people who are obese and who smoke. It mostly affects adults, with onset typically taking place after puberty and remission, if it ever occurs, after age 40. I quietly cried as I scrolled through graphic Google images of lumps the size of baseballs taking over people’s bodies. Is this what my future holds? I remember thinking.
And then I stopped on the words “no cure.” The disease can go into remission, but if and how that’s achieved varies from person to person, and there’s not a one-size-fits-all approach or any promise that if you suffer from HS, you eventually won’t.
Remission, I thought, like it’s some kind of cancer. I started hyperventilating and stood up. My mind was racing. I needed to calm down because I didn’t want my boyfriend to know what I’d found. What if he stopped liking me? What if he thought I was as gross as I thought I was?
Not long after that night, I presented my dermatologist with the information I’d discovered. She told me she had heard the term before, but needed to read more about it. I remember her taking the print-outs I had brought her and then grabbing a medical book to look up how to treat it. She prescribed antibiotics but wasn’t optimistic they would be of much help. The next six years were a blur of oral antibiotics and topical ointments and even more antibiotics. Nothing worked.
A couple years after I began treatment for HS, I started experiencing the same bumps that I’d had in my armpits, but this time, they were in my groin area, close to the crease of my thighs. Shame immediately plagued me. I continued to try and hide the bumps, but eventually I had to tell my boyfriend what I was experiencing. Sometimes the pain was so bad or the lumps were so big, I couldn’t have sex, and the excuses I had been giving him — from serious period cramps to painful razor burn — had become less and less convincing.
To his credit, when I told him, he was incredibly supportive, but my anxiety went into overdrive, and I couldn’t keep myself from wondering if he really thought I was disgusting. Why wouldn’t he?
When we broke up years later, I actually asked him point-blank if it was because of my skin disease. Of course it wasn’t, he replied, and deep down I knew that, but my anxiety was so high and my mindset was so dark at that time that I had an extraordinarily difficult time believing him.
The physical symptoms of HS are brutal. There are three stages of the disease. The first, called Hurley stage I, is the presentation of one or a couple of lesions (what I refer to as “bumps”) without scarring or a sinus tract formation, also known as tunneling, under the skin. Stage II, which I have, presents as multiple, recurring lesions, with limited tunneling under the skin and scarring. And stage III, which is defined as multiple lesions spread over an entire area of the body with extensive interconnected tunneling and scarring. The stages are mostly descriptive and do not necessarily correlate with the disease’s activity or measurements of pain or impact to quality of life.
The biggest bumps I get are buried the deepest under my skin and they’re the ones that hurt the most. It’s not until they burst open, which can take a week, that there is any relief. When it does finally happen, the rupture usually leaves a small hole or open wound on my body that drains fluid and blood for weeks at best, but often for a month or longer. When they finally heal and nothing is left but a deep scar, it’s only a matter of time before the exact same bumps get hard and tender, and the whole process begins again.
And still, believe it or not, that’s not even the worst part of having HS. It’s really the psychological aspect of this disease that is almost unbearable. I have never — and truly don’t believe I could — told anyone about the darkest moments I have faced with HS, and I wouldn’t dare write about them. Those experiences live in the deep corners of my mind and haunt my thoughts when even the slightest bit of confidence about my body tries to peek through. I never, ever feel comfortable in my own skin, and I’m not sure I ever will. My sexuality has been stunted because of this disease and the accompanying embarrassment I feel every day about something that is completely out of my control.
So why am I opening up about this now and in such a public way? I certainly haven’t come to any magical conclusions, and try as I might, I definitely haven’t learned to accept or embrace having HS. What I have learned is how to talk about it with other people, and I believe that is what it’s going to take for there to be any possibility of progress in treatment or just plain awareness for other people living with HS.
It all goes back to the women in the support group I attended. I realized how many of them were there alone — and how many were living in shame with this secret. Most of us had tried everything we could to combat our condition, and some, including me, had undergone horrifying surgeries. Their journeys had proven just as futile as mine over the years, but they were still clinging to the hope that there might be something to bring them relief.
The only woman in the support group who seemed confident about having found a way to get her HS under control said she used tar — yes, that thick, dark substance that’s the byproduct of petroleum. She scrolled through her phone until she found the picture of the medical-grade tar she placed on her bumps every eight hours and she showed it to everyone in the group. She said there was only one pharmacy in the area that carried the right kind of tar, and it was located inside an Ace Hardware store.
The other women were awestruck. Some asked her to repeat the formal name of the tar and then raised their eyebrows. I could read their thoughts as they wondered what it would do to their own bodies. I wondered the same thing.
“We shouldn’t have to feel this way. If we have to suffer with the pain that HS causes, we shouldn’t have to suffer with shame too. It’s all just too much.”
Some of the women picked up their pens and wrote down the address for the pharmacy and the directions for care in their notebooks. Even I put the information in my phone. But later, I found myself wondering if we were all so miserable and desperate for any kind of treatment to work that we were actually considering slathering a low-grade carcinogen all over our intimate body parts. I decided I certainly wasn’t, but the fact that I had even thought about it should tell you just how desperate I was — and still am — to find something (anything!) to cure me. To say it made me feel sad would be a huge understatement. It was a devastating realization.
Dangerous, unregulated treatments aside, there are three main options for people who are fighting HS: high-potency antibiotics, immunosuppressants (the route I’ve chosen) or surgery. Basically, we have to destroy our gut health, compromise our immune systems or mutilate our bodies to find relief and even then, these treatments aren’t guaranteed to work or barely work. And unless we have a strong support system and feel comfortable talking about our experiences, there aren’t a lot of options to help cope emotionally while struggling with treatment or afterward.
Along with the immunosuppressant I take, I also underwent what was considered to be “minor surgery” in the past two years, and it was the most traumatising event I’ve ever been through. The surgeon cut away jagged chunks of skin from my sensitive groin area to remove my recurrent bumps and the tissue surrounding them. My mom and my sister had to change my dressings for me as I healed at home over the following two weeks. In reality, there wasn’t anything “minor” about the procedure. I cried in bed for days while my mom tried and failed to comfort me.
No one understood the mental and emotional toll that surgery took on me, not even my doctor, who now knows the most intimate things about me and who works hard to improve the quality of my life and others. But the other women in that support group understood. Some of them face the same purple scars that I do every day of their lives and some of them cringe the same way I do when we see our scars.
We shouldn’t have to feel this way. If we have to suffer with the pain that HS causes, we shouldn’t have to suffer with shame too. It’s all just too much.
HS is an agonising disease, but it’s even more painful to talk about. I’m in a better place now than I have been in a while, but it’s still so much easier to hide in the shadows and internalise it all. Until people know what it’s really like to live with HS, though, there won’t be any momentum to make it better, and the shame of having a condition like this won’t disappear. So, I’m speaking up.
I believe the more people who talk about their experiences with HS and how it’s affected their lives and the lives of their friends and families and partners, the less stigma there will be about this disease. And on an even more basic level, the more people talk about it, the more people will know about it in general — and the fewer people who will have to secretly spend their nights doing Google searches to try and figure out what this mysterious nightmare that they’re experiencing is.
Melissa Boughton is a North Carolina-based journalist who writes about courts, law, policy and politics
This article first appeared on HuffPost US Personal
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