Just Throw Me in the Trash: HS Edition

My footing was slow and deliberate as I stepped between sun-bleached rocks and soft sand. The semi-natural stone steps were worn smooth and dusted with a fine layer of sand, eliminating any chance of traction. Several hikers ahead of me had already wiped out after getting cocky and taking a haphazard leap. I tested every foot placement before transferring my weight, giving myself a precious half-second of rest before hauling my body a few more inches up the canyon.

The precarious, uneven trail provided a good cover for my slow pace. But as soon as I reached a small, shady clearing, I collapsed on one of the stone benches, my vision blackening and blurring around the edges. My dad, just a few paces behind me, kindly remarked that he was also ready for a water break. Hot, angry tears welled in my eyes, and I hurried to wipe them away with my sweat towel as more voices drifted over from the tree-lined path. 

I attempted to surreptitiously check my armpit. A cluster of three large, red boils swelled angrily, sending splotchy redness down my arm and a biting pain through my shoulder. I tore open an alcohol swab and cleansed the area of dirt and sweat as best I could, before stuffing the trash into my backpack. 

The thing about hidradenitis suppurativa (HS) is that, yes, the lumps sting, throb, and hurt like a bitch, but their insidiousness manages to seep throughout my entire body. Overnight, my strength and energy are zapped. I can’t catch my breath, and try as I might to gulp in oxygen, my muscles have turned to lead and refuse to absorb it. Ten steps suddenly feels like a marathon. I’m lightheaded, nauseous, and tingly, a necrotic numbness spilling through my limbs. It’s like my mind and soul have disconnected from my body and must deadlift the weight of me.

After resting a few moments in the clearing, I drank some water and checked my distance tracker. A mile to go to the top, and the incline would only grow steeper. I nodded to my dad, waited for a gap in the hikers, dug my nails into my palms, and kept moving.

A week of hiking in Utah

In retrospect, I don’t really know why I thought I could hike for seven days in a row. I desperately wanted to be able to do it, and after a few months of working out consistently and feeling well, I was in denial that my body could fail me. So, I took a week off from work and scheduled an action-packed road trip through Utah’s national parks with my dad.

After day two at Arches, it was clear my energy was beginning to wane. My daily distance dropped from 8 miles to 6, then 4.5. The small, inactive HS bumps in my armpit and groin were flaring up, and I was limping badly from the pain in my feet and ankles. (While I’ve been diagnosed with arthritis and plantar fasciitis, I also suspect I’ve inherited accessory navicular syndrome from my dad.)

Our fifth day of hiking was our first day at Zion National Park. I’d had my heart set on Angels Landing, a strenuous, 4.4-mile hike featuring steep switchbacks and a scramble up rocks that requires you to cling to chains, if you don’t want to fall off the sheer cliff and plummet over 1,000 feet to your death. It was the extreme, heart-pounding adventure I’d been looking forward to.

But when I awoke that morning, my head pounding with a dull migraine, my feet stiff and clenched like talons, and my right shoulder too sore to move, I knew a tough, risky hike was out of the question. (My dad was also quick to remind me that 13+ people have died on the hike since 2000.) Instead, we enjoyed breakfast at a surprisingly vivacious coffee shop for small-town Utah, then ventured over to the park mid-morning. 

After reviewing a map, we settled on the Emerald Pools Trail, a 3-mile hike rated easy to moderate. And it was, or at least, it should have been. But I was fading in and out of consciousness after a mere half-mile of circling waterfalls. 

Regular food, hydration, and rest revived me enough to be able to continue, but I simultaneously felt shitty enough that it was too difficult to smile, make conversation, or do literally anything except put one foot in front of another. 

Every time I was near a park bathroom, I’d duck in to check on the status of the lumps in my armpit. Painfully swollen with fluid, I knew I’d experience instant relief if they drained. But an HS lump resembles a cyst more than a pimple in the sense that it doesn’t come to a head. Heat helps, and sometimes my skin is thin enough that the pressure building up on the inside wins out. But it won’t go until it’s ready to go — and this could take weeks, if it happens at all.

It did not happen in Utah. I spent the final few days of our trip trying, and mostly failing, to rise above my sour mood. I’d notice the pain and fatigue slowing down my body, think about what I should be able to do, and grow frustrated and humiliated. That would create enough of a crack for the awful thoughts to start rushing in.

Everyone on this trail probably thinks you’re just fat and out of shape. Well, to be fair, you are. No matter how much you hike, you always will be. And guess what? You’re 25. You think your diseases are going to quiet down as you age? You know they’ll only get worse. This might be the best it gets. Better enjoy it now, because your last hike ever will probably happen much sooner than you think.

And the tears would start burning again. Fortunately, I was usually too red and sweaty for anyone to notice.

Blacking out in the dermatologist’s office

I returned home Sunday evening, exhausted and hurting. I let my body soak in a hot bath, and discovered that the pain radiating from my groin that day was, in fact, the result of another HS lump flaring up in my pubic area, near the crease of my thigh.

Monday was worse. I spent the day in bed, working with my laptop propped up on pillows. It hurt too much to sit.

On Tuesday, I chose medical intervention. Better to suffer brief but intense pain than continue on in my miserable, semi-functional state, I figured.

I saw my dermatologist that afternoon and requested the usual: slice and drain. She examined my armpit and confirmed that the lumps were fluctuating, or filled with fluid, meaning they would drain easily. But the lump in my groin was hard. It felt more like inflamed scar tissue than fluid, she explained. She could try cutting into it, but she wasn’t sure anything would drain. Otherwise, she could just do some steroid injections. 

I’ve tried these injections in the past, and the relief they offered was minimal. At least, it didn’t seem enough to justify several sticks directly into the already excruciating bump. I told my doctor I’d think about it as I lay down on the table, right arm bent over my head to bare my armpit. 

The first step was numbing the area, which unfortunately meant several shots of lidocaine directly into the tender flesh of my armpit. As the anesthetic worked its magic, I watched my doctor and her nurse prepare a sterilized table full of scalpels and gauze. Then, it was time to cut.

I always think I will be brave enough to watch her do it, and every time, I am very, very wrong. The thing about a lidocaine shot is that it only numbs pain, not sensation entirely. In the absence of stinging or burning, my mind is free to focus on everything else — the tugging, the pressure, the wetness, the clink of metal instruments, the awful, clinical smell of blood and pus seeping into gauze.

I kept my gaze averted and tried to focus on breathing, my fingers knotting in my hair and the thin fabric of my tank top. Sweat broke out on my forehead, and the room started to spin. Every time I tried to calm myself with a deep breath, my stomach would lurch with the fresh intake of that sickening smell. I could feel my doctor digging around inside the incisions, and it was too much. 

“I’m just about done,” she said. “Would you like me to do the injections down there as well?” I gave this about half a second of consideration, then promptly fainted.

I awoke, I presume, only a moment or two later. The nurse was bandaging my armpit with so much gauze and tape I didn’t think I’d be able to bend it, and the doctor was pressing cool, damp paper towels to my head. She’d presumed, correctly, that I wasn’t up for the injections. 

After drinking some water and resting for 20 minutes, I drove myself home one-handed. Though I expected vicious pain as soon as the numbing wore off, it never came. Within a day, the incisions had closed, and within a week, the lumps were flat and healed, leaving behind only the telltale bruises and scar tissue.

• 

• 

The COVID-19 booster, an ER visit, and more incisions

I had hoped this would be the end of the story — that the lump in my pelvic area would naturally quiet down, my energy would return, and I’d be back to normal in time for the weekend. Of course, that’s never how it goes.

By Friday, the lump near the crease of my thigh had swelled into an angry, reddish-purple plateau. More than 1.5 inches long and a quarter-inch high, it was less of a bump than an ovalish protrusion jutting straight up on all sides. A gentle breath of air across its surface sent a jolt through my spine like I had been electrocuted. Wearing underwear was impossible, and the friction against my thigh upon sitting or walking was unbearable. I believed my doctor’s assessment on Tuesday, but the lesion had transformed since then. I could tell it was bursting with fluid, and the pressure was agonizing. But no amount of hot baths and compresses could get it to actually, well, burst. 

On its own, the infected lump was brutal and debilitating. But then I decided to follow through with my ill-timed appointment for a COVID-19 booster shot on Friday afternoon. After the issues I’d had with the second shot in April (splitting headache, dizziness, fainting in the shower, breaking my toe), I was prepared to spend the weekend resting — and avoiding the shower. When a migraine started creeping in that night, I wasn’t worried. I popped some Tylenol and went to bed early.

I never fell asleep. Slowly, agonizingly, the pain set in, first crashing through my skull, then my entire body. I couldn’t get comfortable, an issue that was only exacerbated by my near inability to move my hips and roll over. My muscles ached so ferociously that each new wave of pain made me jump, and the shuddering chills left me with goosebumps that seemed to rise out of my skin like welts. 

At 3 a.m. I drew myself a scalding bath to soothe the aches and chills, even though some distant part of my mind whispered it would be counterproductive if I had a fever. I sat there shuddering and crying for an hour, until the water turned cold and sleep began to tug at my eyelids. I downed three more Tylenol, crawled back into bed, and finally, somehow, drifted off sometime after 4.

When I awoke around 9, the pain was — somehow — worse. It was too much to sit with, and my body responded with violent trembling. I took another bath and washed down more meds with a Gatorade, which I vomited right back up. Exhaustion and delirium were setting in, and I resorted to my childhood method of problem-solving: I called my mom. 

It was hard to explain what was happening through the screaming pain in my head, my limbs, my groin — and that’s precisely what panicked my mom, who has seen me through every illness, infection, migraine, and flare-up. The woman who has witnessed me at my very sickest and offered encouragement by telling me to “tough it out” demanded I call 911, or else she would call for me. My sister and brother-in-law, who both work in the medical field, were soon piggybacking on this threat after receiving worried messages from my mom. (All of this could have been averted by calling my dad instead, but he was off the grid on a fishing trip.) I promised them I would go to the ER.

I would have rather collapsed and died than be carried out of my apartment by paramedics (a strange mix of pride and shame), so I did my best to gather myself, and stupidly drove 20 minutes to the hospital, feeling like I was on the verge of fainting the entire way. 

I must have looked as wrecked as I felt, because when I stumbled through the metal detector just inside the door, still carrying my purse and keys, the police officer ignored the piercing beeping and escorted me to the waiting room. 

The next few hours were a blur. The wait was long, and it didn’t help that I was shuddering with pain and cold and retching into the trash can every few minutes. I felt like a ridiculous, dramatic child as I sobbed on the bed, drifting in and out of consciousness. Eventually, I was given an IV of fluids, pain meds, and anti-nausea meds after clocking a temperature of nearly 102 F. I thought I was having a fever dream when the nurse said the only vein he could find was running perpendicular to the way it was supposed to, and I nearly dropped out of reality when I saw the angle at which he stuck the needle into the crook of my elbow. 

The doctor came along to examine the lump in my groin, and if I hadn’t been so sick and desperate for relief, I probably would have died from embarrassment at the unceremonious way the male nurses tugged off my hideous navy jogging pants and patterned MeUndies. The doctor ever so gently touched the bump, and I saw stars.

“We need to drain this now,” she told me. I made a noise somewhere between a hiss and a growl. “If we don’t…” She didn’t finish the sentence, but the warning in her eyes was enough to make me relent. Blessedly, the ER doctor went even a step further than my dermatologist, and applied numbing cream first before moving to the numbing injections. I screamed and bit through the skin of my hand when the sharp instruments came into play, but I endured it — this time, without fainting. 

I zeroed in on the steady ticking of the clock. For 12 minutes, the doctor poked, sliced, and squeezed. For 12 minutes, the wound gushed and drained. 

“I used to specialize in skin conditions like HS,” the doctor said. “And this is one of the worst lesions I’ve ever seen.”

“Thank you,” I mumbled from underneath the sweater I was hoping to smother myself with.

The relief was instantaneous. My pain levels plummeted, my head was achy but clear, and for the first time that day, I suddenly felt hungry. Unfortunately, I was then far too cognizant of the male nurses returning to pack the wound, comment on how my pubic hair made it difficult for them to tape down the gauze (how the FUCK am I supposed to shave at a time like this, Jeremy?!), and wiggle on a pair of disposable underwear to “help absorb the seepage.” Once again, I found myself wishing I had just died on the table and been quietly disposed of in the dumpster.

I made it home (driving was much easier this time), took the max dose of prescribed Benadryl, and crashed. I only woke once in the middle of the night when I realized, covered in a cool, damp sweat, that my fever had broken.

The next day, I was groggy and exhausted, but the worst was finally over.

• 

• 

Recovery is a misleading word

Two weeks later, the lump in my groin is still prominent and draining, though it’s no longer causing me much pain or fatigue. I feel relatively normal, by my own standards at least, but I still can’t exercise or be on my feet for more than about 10 minutes. I tell myself I’m healing, but in truth, I feel lazy and pathetic. 

It’s during this recovery period, when I’m somewhere in between sick and well, that the thoughts start getting bad again. 

Half the time, I can masquerade as a functional human — fooling everyone, myself included, into thinking that’s the real me. The only me. Someone who’s got her shit (mostly) together and can take care of herself. 

But then I fall into these spells where I’m disabled by one or more physical ailments. So far, I’ve managed to struggle through on my own, but the reality is that I need help. If I had friends or loved ones near me, I’d rely on them during these times when my body turns on me.

The two versions of myself seem so separate that even “healthy me” gaslights myself into thinking that “sick me” is just exaggerating and attention-seeking. We hate her — that pathetic girl who cries about the pain, about what she can’t do, about the weariness of suffering alone. Get over it already.

It’s taken me two weeks to write this because already I’m bored and exhausted by my own misery. If I feel this way about myself, I can’t imagine why another person would voluntarily sign on to be involved in my life. Who would choose to spend half their time caring for a bedridden shell of a person? And if we’re talking about a romantic relationship, who would be happy with a partner whose body is littered with disfiguring scars and open lesions in their groin? I know these are foreign, sinister thoughts that have crept in uninvited, and are rooted in anxiety and shame. But these fears have all manifested before. When I envision these scenarios, I’m really just replaying conversations with former friends and partners. 

Maybe there are good and kind people out there who would be happy to help someone out long term. I think I believe that. Yet two issues remain — and perhaps they’re not logical, but they continue to slither through my mind nonetheless.

First, how could I, in good conscience, share this burden with someone else? No one deserves that. Maybe not even me — but I don’t have a choice, and I’m already used to enduring it alone. 

Then, there’s this: When I think about the friends or partners who do take on that burden, they’re doing it for love. If you take away all my health issues and ugly parts, what’s left that is actually worth loving? I know I don’t see myself the way others do, but I still can’t answer the question.

¿El fin?

This dragging story does not have a resolution. I will feel decent for a time, get my hopes up, then be crushed by despair and self-pity when sickness descends once again. This is just my life, which no one is witness to except me. Perhaps documenting it will make it — and me — real.

“So you must not be frightened, dear Mr. Kappus, if a sadness rises up before you larger than any you have ever seen; if a restiveness, like light and cloud-shadows, passes over your hands and over all you do. You must think that something is happening with you, that life has not forgotten you, that it holds you in its hand; it will not let you fall. Why do you want to shut out of your life any agitation, any pain, any melancholy, since you really do not know what these states are working upon you? Why do you want to persecute yourself with the question whence all this may be coming and whither it is bound? Since you know that you are in the midst of transitions and wished for nothing so much as to change. If there is anything morbid in your processes, just remember that sickness is the means by which an organism frees itself of foreign matter; so one must just help it to be sick, to have its whole sickness and break out with it, for that is its progress. In you, dear Mr. Kappus, so much is now happening; you must be patient as a sick man and confident as a convalescent; for perhaps you are both. And more: you are the doctor too, who has to watch over himself. But there are in every illness many days when the doctor can do nothing but wait. And this it is that you, insofar as you are your own doctor, must now above all do.”

Rainer Maria Rilke, Letters to a Young Poet