Under My Skin

by Annica Eagle

As a frequent activist, comedic improviser, and world-ranked punner, I am no stranger to speaking up and speaking out. But as someone living with hidradenitis suppurativa—talk about dis-ease! It has taken me forever to write this, for my greatest fear has been naming my condition, where people can google it, see its image, and then be repulsed by me.

Hidradenitis suppurativa (HS) is a malfunction of the apocrine glands, so it mainly affects the areas of the body where there is skin-to-skin contact, sweat and friction. As I like to say, all the “sexy” bits: upper thighs, groin, ass, under breasts, and armpits. It is a progressive disease where, as summed up by Rare Diseases.org,  “single, boil-like, pus- filled abscesses become hard lumps, then painful, deep-seated, often inflamed clusters of lesions with chronic seepage.” To boil it down, “chronic seepage” is a clinical way of saying that these abscesses rupture and continuously ooze pus and blood. HS creates sinus tracts underneath the skin, allowing easy travel for inflammation and infection. While my HS is primarily concentrated in my legs and groin, I have had to contend with upper body iterations and have the scars to prove it.

I have had this disease since puberty, but I was not diagnosed until I was 20. Prior to the diagnosis, I rarely talked about what was happening to my body with anyone; I lived in shame.

When I was 9 or 10, I went to summer camp. I was about to go swimming—one of my favorite activities—and a boy came up to me, irrevocably changing my happy-go-lucky state forever. He asked me why my thighs were bruised and purple, in the callous way young children can unknowingly be. Ashamed and embarrassed, I ran to my cabin to put on anything that would hide my legs from the world. I would not swim without wearing a pair of shorts for many years after that.

As a kid, I had a very skewed idea as to what was going on in my body. My family didn’t talk about such things. My camp experience had already scarred me in ways my physical scars could not hold a candle to. I thought that what I had was a sexually-transmitted infection like genital warts, from using a contaminated washcloth or something (hint: it’s not). The shame was a part of me, like an internal organ—always there, pumping away, unseen by everyone else and felt just by me alone. I didn’t talkabout it with anyone. When I very rarely went to the doctor for a checkup, they said that it was just an effect of my thighs rubbing together and that I should—weight, weight, don’t tell me!—lose weight.

Even as a kid, this was not my first rodeo of fat bias in healthcare. My hidradenitis suppurativa has always existed at the intersection of chronic illness and fatness. Regardless of my actual health, my physical activity, or my lifestyle—the doctors I encountered as a kid only saw that I was an often (but not always) chubby girl, and therefore that was the root of all ailment. I did not know then what I know now: bodies do not require excuses for just existing. All bodies are good bodies. And for me, these two identities—having hidradenitis suppurativa and being fat—have always been interconnected.

I am an athlete, and I have been one my whole life. Growing up, I loved climbing and the outdoors, biking and playing tennis in the summer, cross-country skiing in the winter. I played softball and volleyball up until high school. Marching bands, adult-league dodgeball, and unicycling well into adulthood. My body shape and weight have fluctuated and changed throughout my life, regardless of my activities. A big part of that has been how severely HS has ravaged my body. When exercising, you’recreating a lot of friction and sweat in those spots, which ends up exacerbating the disease—creating more abscesses, more tunneling, more scarring, and more secondary infections; all of which combine, leading to further and worsening flares. It is a catch-22: exercising more to keep the weight and skin-to- skin friction down to help lessen the severity of outbreaks, but the exercising itself causing more painful and worse flares. You end up spending periods of time dormant from activity while you try to heal from the previous activities’ damage. Or you disassociate from your body to help manage the pain. In my early young adult years, I spent a lot of time disengaged from what my body was feeling, just so I could keep up the pretense of normality and I-can-do-anything façade.

But I have learned there are things I have difficulty doing. Wearing white pants. Living where there is high humidity. Having an extremely stressful job. Why? Because boils will rupture and bleed without warning. I have cleaned up my fair share of blood off walls and floors and the occasional piece of furniture, but for the most part, that blood damage is isolated to the clothes on my body (so white pants—they are asking to be bled through). With high humidity levels, the increased moisture creates a damp environment that HS thrives on. Mo’ moisture, mo’ problems. And as for high-stress employment: I was working as a community organizer before and after the 2016 election, and the sheer volume of stress I experienced during that time has bumped my HS to a whole new level.

Hidradenitis suppurativa often weakens the body’s ability to fight infection and to heal, and stress can really kick it up a notch. Cortisol—which is released in the body when you’re stressed or infight/flight/freeze mode—helps the disease travel farther and with greater intensity. When I went off to college, my stress increased exponentially; my parents divorced and sold the house I grew up in, so packing my bags for school meant literally packing up everything I owned and saying goodbye to my childhood. Combined with a tumultuous long-distance relationship and a brand-new city and high academic rigor, my cortisol production went into overdrive. I ended up with a secondary infection in one of my open wounds: staphylococcus. I was put on two rounds of intense antibiotics in addition to a medicated ointment up my nose, in my bellybutton, and unmentionable areas three times a day. Still, I had yet to receive my diagnosis.

That came to a head in 2008. That long-distance relationship went down in flames and betrayal, which kicked the disease into high gear. Four huge lumps/boils/abscesses formed on my thighs and simultaneously opened—some of the worse pain I had ever felt. I went back to the dermatologist who had discovered the staph infection the year before, and she finally named what had been plaguing me since I was a young girl: hidradenitis suppurativa.

Finally, a name! And with that, potentially a path to treatment (though there is no cure). As anyone with HS can likely attest, there is no one clear method to manage it. I have been through the wringer with pills and creams, baths and injections, AIP food plans. Oral antibiotics have been a standard—doxycycline, minocycline, etc. Once I took a medication for two months that turned all my body’s secretions orange—so I had to wear glasses full time so as not to stain my contacts. The Oregon doctor who diagnosed me wanted me to do Acutane. A Montana dermatologist told me Humira injections were the way to go. In Washington, I had a dermatologist tell me to see a surgeon about removing some of my scar tissue and sinus tracts, just to have that surgeon say that it would require over 40 individual incisions to get everything, so it would not be worth his time or my money. Multiple dermatologists have shot me with steroids. Another doctor recommended spironolactone. One doctor, after a quick Google search, had me taking zinc tablets on an empty stomach (I stopped after the fourth consecutive day of vomiting). I’ve seen naturopaths who have had me try acupuncture and cupping, even hula hooping and other movement practices. One nurse practitioner had me take a bleach bath once a week for months. Urgent care physicians would predictably prescribe a week of cephalexin and wound cultures. Many different courses aiming for the same result: reducing flares, preventing infection, another component of this is wound care.

Often, these wounds are in connective creases, where parts of the body meet other parts, making bandaging difficult. Don’t get me wrong: I go through plenty of gauze and medical tape, Bactine spray and zinc oxide ointments. But my skin is so thin that the adhesive of the medical tape ends up tearing up legs, leaving tiny cuts and scabs everywhere. Sometimes, the only option is clean, soft, loose-fitting clothing and some ibuprofen because no bandaging can stay where you need it.

In addition to HS-specific difficulties, there have been complications over the years. The combination of antibiotics and bleach baths lead to bacterial vaginosis and yeast infections galore (treatable/curable, but annoying). I even developed a pilonidal cyst on the base of my spine. The surgery to remove it took 13 weeks for me to fully heal; the surgeon cut out the cyst and left an open hole to heal from—no stitches—with the intent of it healing from the bottom up, which meant daily wound-packing and dressing changes.

Hidradenitis suppurativa created other complications as well: intimacy and dating. After that long-term, long-distance relationship fizzled and I got my diagnosis, I changed. I loved sex! But did not want to be vulnerable to the thoughts and opinions about my scarred and disfigured (and sometimes-bleeding) body that intimate partners could potentially have, so I did not emotionally invest in the people I slept with. Avoiding vulnerability could be the title of that chapter of my life. I became the hit-it-and-quit-it type. Of course, no one was repulsed by my body, and the folks I slept with were focused on other things in those moments, but I still did not want to risk that closeness. I would sleep with them on the first or second date, and after about two weeks, call things off.

I did not regret those decisions—and still don’t—but I think a lot of my choice in partners during that time was driven by the subconscious knowledge that they were not my type, thus further lowering the risk for me. And yes, I was recovering from heartbreak, and yes, I had poor relationship-modeling while growing up. But the psychological effects of HS played a heavy hand.

Living with a bloody, painful, and incurable disease is a burden I will always bear. BUT. All the guts and gore aside, I have lived. There are stretches of time—generally when I’m happiest and least stressed—when I have no flares at all. I have a high pain tolerance, and I do not limit myself when dreaming and scheming and achieving. My support system is great, although it can bring my family to tears sometimes when I talk about it. And I do shy away from sharing HS details with some friends because I am concerned those relationships couldn’t handle it. But without talking about it, certain misconceptions run rampant, like my sister not wanting to use the same toilet as me, thinking it was contagious (hint: it’s not). Or a roommate’s boyfriend being more concerned with the aftereffects of the bleach from my bleach baths on his feet (when he would take a shower after my treatment) than my condition warranting the bleach bath in the first place. Or any number of people thinking HS is a matter of hygiene or that it is just severe acne (hint: it is definitely not).

I still have won world punning trophies, farmed in New Zealand, graduated college summa cum laude, fought for human rights, performed improv comedy, and unicycled in parades while having this disease. I’ve fallen in and out of love while having this disease. I’ve moved countries and states, changed jobs and careers. My experience with this illness cultivated empathy and understanding. Hidradenitis suppurativa has been alongside me most of my life, which includes my major successes. This skin is the only skin I have. That internalized shame is being carved out of me, bit by bit, by sharing my experience and reading about others.

It surprised me when, on February 28th, two of the folks I follow on Instagram shared that they had hidradenitis suppurativa. They decided to use Rare Disease Day to call attention to HS, and I was blown away. I had no idea that these people—who I followed for fashion and activism—had the same condition as me. I felt strength in that disclosure, and a solidarity of people living full lives in the bodies they are in. So maybe, just maybe, my admission here—rather than causing repulsion like my initial and greatest fear—will instead create and cultivate compassion and understanding.

After all, all skin is good skin.