My Hidradenitis Suppurativa Diagnosis
Hidradenitis Suppurativa is a chronic auto-inflammatory disease that causes painful lesions in the skin. It disproportionately affects Black women, but is not widely known about in our community. It even gets a red squiggly line when I type it on this page!
In the beginning, there was a bump
I was 15 when I discovered the first bump on my inner thigh. It was a different color than the rest of my skin, about the size of a grape.
My first thought was skin cancer. I remembered the PSA’s from grade school about getting any mole/birthmark checked out if it seemed to have moved, grown, suddenly appeared, and so on. But I was too embarrassed to show this sensitive area to an adult.
It was only a few inches away from my groin and, as taught to me by my religion, this whole region made me uncomfortable to even think about. I could imagine a doctor mistaking this bump for some kind of STI, though I knew I couldn’t possibly have one.
Like most people my age, I’d only been exposed to one narrative regarding STI’s, which is that they were gross and dirty. Picturing a doctor (or my mother) judging me for a herpes misdiagnosis was too much to bear. Occasionally, I would even imagine a future partner looking upon me with disgust for this blemish, no matter where it came from.
I didn’t realize that like mental health, there was a whole stigma about reproductive health that needed to be removed.
Out of Sight, Out of Mind
Having untreated OCD as a teen meant I often resorted to an “out of sight, out of mind” way of thinking.
This is a maladaptive coping skill, something your brain develops with good intentions/harmful results when trying to get you through hard times.
I truly believed that if I told anyone about this bump, I would learn that it was something serious and die. But if I never addressed it… well, I would be fine, as if by magic.
This makes no sense, but OCD’s not known for its rationality.
I made this collage after my diagnosis.
It represents the struggle to reclaim power over my body.
Chub Rub Club?
I continued to have irritation around my thighs, especially during summer, and headed back to the interwebs like a good millennial. I ended up discovering some thicker thighed women talking about chub rub and that seemed to fit.
This is an irritation you might get from the friction of your thighs rubbing together as you walk. I started rubbing deodorant on my thighs, wearing pants instead of dresses, and occasionally doing a lil penguin shuffle thinking if I could just keep my thighs apart I’d be good.
Later on though, describing my worsening symptoms to my mother, she was confused by my assuredness. I was confident that what I was experiencing happened more or less to all people, they just were too embarrassed to talk about it. “No, I don’t think that’s normal,” she said.
Dr Appt #1
When I turned 20, I switched from Medi-Cal to private insurance. A whole new world seemed to open up for me. Before that, my family rarely went to the doctor as it was guaranteed to be a hassle or a negative experience. I honestly did not know how to make a doctor’s appointment for myself. I was usually feeling better by the time I’d searched through telephone books of clinics or listened to all the providers in my area talk about how they weren’t able to see me.
I remember that first primary care visit with my new doctor quite well. I arrived with a list of maladies from over the years, left with an inhaler, referrals, and a sense of accomplishment. I had also finally felt comfortable to show someone my thighs. Right before the doctor wrapped up, I took a deep breath and asked if she could look at one more thing.
To my surprise, and I guess hers, she told me that it was a keloid scar. What caused it? Neither of us could say, it had been so long since the bump appeared and decided to stick around. Regardless, this was a relief.
Dr Appt #2
Things were in full swing by the Spring of 2018. My inner thighs were covered in painful bumps, some that felt more like pebbles and others like bubble wrap. One would pop up, then regress, leaving two more behind. They ranged in size from a pencil eraser to a 50 cent coin. It didn’t really seem to matter what I wore anymore, and rubbing deodorant on my legs certainly wasn’t preventing anything. I woke up in pain and moved throughout my day in pain.
Google wasn’t very helpful. I searched all kinds of combinations of adjectives, and don’t think HS ever came up in my search. But I read enough to know that web sleuthing wasn’t gonna cut it and I needed to see a dermatologist.
I wished I was able to find a female dermatologist, because I thought the process would be a lot more comfortable. By now my groin area was affected as well, and I’d have to let them see eeeeverything I had going on. However the doctor I did receive was professional and courteous. He alleviated my concerns, perhaps too well, and wrote me a prescription for a topical antibiotic. Told me it might not make it all go away but it should help.
And it did help. I just remember picking it up from the pharmacy and thinking it was odd that he’d already approved me for six refills. Nothing from our conversation indicated that this was a chronic condition, so I thought he was being overzealous.
Dr Appt #3
I returned to my primary care doctor a few months later because the bumps had, in fact, returned. I explained that this was something I’d been seen for before, but now it seemed actually a little worse. Whereas I’d had about 5-7 painful bumps at a time before, now I’d counted upwards of 11.
She said something like, “Oh, well, that’s Hidradenitis Suppurativa for you. Let’s look at—”
I interrupted, asking her to repeat that term again. She was incredibly surprised that I’d never heard of the condition, seeing as how it was listed in my medical chart. The last doctor had just forgotten to tell me that. And so I learned that HS was chronic, and oftentimes progressive. I was confused why things were looking “bad”, but comparatively I was actually doing fantastic.
What is HS?
What I had been calling bumps this whole time were actually lesions. An overabundance of a certain protein, TNF Alpha, creates an autoinflammatory response that attacks my hair follicles and sweat glands. This causes them to swell and create hard nordules fill with blood and pus on the outside, while the true damage lies deep beneath the skin. Individual protrusions can range from tender to the touch to incredibly painful. And as mine are primarily located in my thighs, this meant that sitting and walking would both be painful activities at times. But, lest another body part get jealous, there are other areas susceptible to this disease, such as the breasts or armpits.
One of the first articles I read about the disorder explained that these nodules might rupture, providing relief but also releasing a “foul smelling odor”.
I started crying when I read those words. In this moment, I felt like my body was no longer my home, but an evil place.
I continued reading and learned that the bumps that went away would eventually return, as I had noticed. Oftentimes, a new lesion would form exactly where one had been earlier. In a process similar to an oceanic volcano creating an island, the consecutive rupturing would twist the skin around into raised keloid scars. As the disease progressed further, these lesions underneath the skin would eventually collide into one another, creating sinus tracts, or hollow tunnels. In more advanced cases, surgery may be required to repair the holes in the skin.
This condition also causes heavy fatigue, and may cause pain and weakness in your joints. The knees, wrists, and back are particularly susceptible, to HS and the comorbidities it is linked with.
Finding Hope
In my google frenzy, I saw graphic photo after graphic photo of open wounds. It all seemed so overwhelming and I began thinking of myself as a monster. I wondered how I would be able to even look at myself when I’ve always been squeamish. I began thinking I was unlovable.
But then I came across a Youtube video with a beautiful, kind, and strong woman sharing her story. She showed her scars and I cried alongside her. I would never call her any of the names that I was already beginning to call myself. She helped me realize that it was going to be okay.
Research and Resolutions
Watching more videos, I noticed that it was primarily Black women sharing their experiences. I researched further, and discovered that this disease does in fact affect us disproportionately. And yet, asking around my family, none of us had ever heard of it before.
I also learned that it takes the average person around 7-10 years to get a diagnosis of Hidradenitis Suppurativa. Those are valuable years of treatment time lost. Valuable years spend needlessly suffering in silence and shame because this condition hits your mental health hard. Dealing with it is depressing, trying to hide it is anxiety provoking.
Many people also mistake it for herpes, and are ready to take that shit to the grave. This speaks to the overall need for love, support, and acceptance no matter your diagnosis.
Hi, my name is Zinnia and I have Hidradenitis Suppurativa.
