I Hate Writing About My Health, but I’m Doing It Anyway

(Warning: Gross pics of my body below!)

I’ve spent the last five years reading and editing stories about chronic illness. It’s my job, and most days, it’s rewarding. When I first signed on to work in the health and disability space as an intern in 2016, I was buoyed by the opportunity to help people and make real, impactful change. I still believe in that to an extent; it’s part of why I’ve stayed in this niche sector of digital publishing.

But an unexpected side effect of reading thousands of blogs, essays, and columns about the same topic, more or less, is that any desire to write about my own chronic health issues has been obliterated. With every challenge or victory I face, I can think of at least five articles I’ve edited and published that address those specific emotions or hurdles. Why repeat what’s already been said?

Besides, five years may not be a lifetime, but it’s a lot of years to spend reading about illness, loss, grief, setbacks, and death. I am adamant about boundaries at my current job because it’s a job I want to keep doing, and I know how easy it is to burn out doing this kind of emotionally taxing work. I already burned out once (and subsequently uprooted my entire life in an attempt to recover). It’s too soon for that to happen again.

Writing about my illnesses seems to violate those boundaries, even if the process doesn’t involve Slack, Google spreadsheets, or proofreading by co-workers. Lately, though, my health has been all-consuming. And as much as I’d like to pretend it’s not happening, simply vent about it in a Finsta post, or laugh it off entirely, my anger, grief, and frustration run deep. I need to do more.

***

So, what’s my deal? My main diagnoses right now are Behcet’s disease, hidradenitis suppurativa (HS), chronic migraines, hypothyroidism, and fibromyalgia. (Sometimes I question this last one until someone gently scratches or pats my back, and I can feel the burning, throbbing ache of their touch deep in my muscles for an hour or two afterward.) I give myself two injections a month, take about 15 pills a day, and no longer travel without my homemade wound care kit. Regular medications cost a couple hundred dollars a month, as do specialist appointments and treatments — not to mention all the vitamins, medical supplies, and over-the-counter meds I have to pay for out of pocket. 

But the most frustrating part for me is dealing with all the random, bizarre issues that frequently pop up out of nowhere. Stupid, freak injuries (like getting a concussion from falling off a U-Haul truck, or spraining every ligament in my foot by tripping over a sidewalk). Flare-ups of my autoimmune diseases (but never simply “fatigue” or “joint pain” — no, these follow from things like “vaginal ulcers” or “a golf ball-sized lump in my armpit”). Side effects of medications, side effects of stopping medications, infections, regular illnesses, the effects of my mental health (!), and on, and on. 

It’s always something, and that something is always different. And no matter how hard I try to do everything “right,” my body will inevitably fuck up and send me back to square zero.

Take the last month or so. Starting in late February/early March, I had been doing unusually well. Spring was creeping in, and I was getting outside for walks and hikes. I continued to implement the dietary changes I’ve been trying out for the past year or two (no alcohol and limited refined sugar, flour, yeast, and processed foods). I had energy to dance around my apartment and work out during my breaks. I rearranged my living room, bought more plants, and reveled in doing a deep clean. I was looking and feeling better, and with my vaccine appointments scheduled, I thought, Maybe this summer can actually be fun.

Then, a succession of events.

It started when I injected myself with an expired biologic. I was in the process of switching health insurance, so my rheumatologist gave me “sample” syringes from the office to hold me over for the month. I didn’t notice that the medication was four months past its expiration date until it was too late. “Oh well. What’s the worst that can happen?” I asked, like a dumbass.

Two weeks later, I went to the dermatologist for a small procedure. I’d had warts on my left leg for nearly a decade, and I wanted them gone. The doctor was willing (my two previous doctors were unwilling, because they said it would scar my leg! babe, have you seen my legs? scars everywhere!), and he froze them on the spot with liquid nitrogen. He asked if he could be aggressive, I said, “PLEASE,” and thus, I spent the next few hours writhing in pain as they thawed. 

After a few days, I noticed a crop of painful, red bumps around the blackened, dying warts. At my follow-up with the dermatologist, he confirmed that some of them were folliculitis, and some were erythema nodosum (EN). This is how the expired medicine comes into play. I take the biologic to suppress my immune system, and it keeps my Behcet’s disease largely in remission. (Why the immunosuppressant only works for one of my autoimmune diseases is an infuriating mystery!) EN is a hallmark symptom of Behcet’s, and it was one of the most severe symptoms I had dealt with in middle and high school before starting treatment. I still deal with folliculitis occasionally, but an EN flare-up is always a bad sign. 

My dermatologist and I agreed that the localized flare-up on my left leg was likely due to a combination of the expired medicine and the acute trauma of burning off the warts. He prescribed two weeks of bed rest and leg elevation (also a topical steroid, which was very helpful). 

So, I obliged. After sitting inside and working all day, I sat inside during the evenings and weekends and dreamed about the hike I would do once the two weeks were up. I scoured TikTok for workouts I could do sitting or lying down to maintain my strength. 

Finally, my leg began to heal, and my allotted hiking day arrived. It was glorious. I rejoiced in my body’s ability to climb up and down the foothills, and ended up going twice as far as I had intended. All in, it was about 7 miles. 

The consequences of my excursion became apparent immediately. My face, neck, shoulders, and arms were brutally sunburnt. My foot throbbed and my ankle locked up — a reminder that my ligaments still haven’t healed a year and a half after the sidewalk-tripping incident. Then, the small bump that had been lingering under my left armpit for weeks began to grow. What had been a barely noticeable knot of hardness, similar to a swollen lymph node, swelled into an angry, reddish-purple boil that shot pain and red streaks down my arm and into my chest. Less than a week after my hike, I was unable to put my arm down by my side. I don’t know if the flare was triggered by heat, sweat, or simply the friction of my body, but it was definitely HS.

I spent the next weekend inside yet again, my arm propped on a pillow behind my head. In between episodes of SVU, I’d hobble into the bathroom to apply a warm compress for 15 minutes. I tried every remedy at my disposal: Hibiclens, anti-inflammatories, steroid cream, Vicks VapoRub, manuka honey, Epsom salt baths, baking soda paste, a topical concoction I read about online involving turmeric and coffee grounds. Nothing either reduced the swelling or brought the boil to a head. 

On Monday, I returned to the dermatologist and requested the quickest, albeit most painful, fix. The doctor injected lidocaine directly into the boil, then sliced it open with a scalpel. The thing about local anesthetics is that they numb the pain, but don’t prevent sensation entirely. As the doctor cut and squeezed and scraped, sharp metal instruments digging around inside the cavity in my armpit, I could still feel everything that was happening. I could also see the incredible amount of blood running down my arm and soaking through sheets of gauze faster than the nurse could replace them. The doctor then bandaged me up (no stitches — the wound would continue to drain) and sent me home, where the lidocaine soon wore off. For the rest of the night, it felt like my armpit was being simultaneously stabbed and set on fire. Another day lost writhing on the couch, trying to focus on my breathing. 

Over the next few days, the boil continued to drain, shrink, and heal. The incision remains an open wound, so I have to be fastidious about keeping the area clean. In a few more weeks, it will probably be nothing more than a scar — one of many that mar my armpits thanks to HS. 

By the time I felt nearly back to “normal,” it was the day of my second COVID-19 vaccine dose. I hoped for the best but expected the worst. Naturally, I got the latter. 

The night after my shot, I woke up around 3 a.m. with an excruciating headache. As someone with chronic migraines, it takes a lot for a headache to surpass my pain threshold. I downed too many Tylenol (this is why I take omeprazole, after all — all the scarring in my stomach from long-term OTC pain med usage) and grabbed my gel eye mask out of the freezer. You’re supposed to put a towel or sheet or something between you and the ice, but I like to put it directly on my face. The cold burns, and it is such an awful, biting pain that I can focus on it instead of the pain inside my head. As the medication kicks in, I’m able to slowly drift off to sleep. 

I don’t know why I thought I was capable of working the next morning, but I stubbornly tried, stumbling out of bed with five minutes until I was supposed to be online, my head still crashing. I made it through three hours before my manager found me out and told me to sign off. I did not feel well enough to argue, so I took more Tylenol and fell asleep.

It was one of those hot, feverish naps; when I woke up around 7:30 that night, my sheets were soaked in sweat. But I was relieved to discover that my headache was mostly gone. Covered in the salt of dried sweat, my muscles sore and achy, I decided to take a hot shower. The water felt wonderful on my stiff neck and shoulders, and I allowed myself to stand in the steam for some time. (In retrospect, this was not a great choice after a day of feeling faint and not eating anything.)

Just as I was preparing to rinse out my conditioner, a wave of something came over me. Dizziness, vertigo, nausea, maybe — I leaned against the wall of my small shower stall and tried to take a few deep breaths, but as the sensation continued to roll through me, I realized I needed to sit down. I had just started to lower myself to the floor when everything went black. 

A painful throbbing in my toe jolted me awake after an indeterminate amount of time. I was crumpled on the floor of my shower, my legs bent under me at horrible angles. When I tried to shift myself out of the position, I was surprised to find nearly all of my shampoo, conditioner, and body wash bottles on the floor around me. Surely they must have made a racket when they fell, but I had no recollection of that. I managed to get myself seated, but quickly realized something was wrong. I was still dizzy and faint, I needed to vomit, and I couldn’t move my ankles or feet. 

I sat there crying and retching until I was physically able to turn off the shower and crawl out of the stall. It wasn’t so much the pain (my body was still in shock) as it was the scariness of losing consciousness, the helplessness of not having any family or friends within 800 miles, and the frustration of my body failing me again — of knowing I would once again be out of commission for a little while.

Two days later, the vaccine side effects have mostly passed, but I cannot walk on my left foot. The toe is deeply bruised, and I have no idea if it’s a sprain, a tear, a fracture, etc. I have no idea how long it will take to heal, I have no idea if yet another issue will appear in the next couple of days, and I have no idea what I will be capable of in a month or a year from now. I try not to dwell on that too much, but when I am knocked down over and over and over again, it is difficult to keep getting back up. No matter what I do, this shit will inevitably keep happening.

So what’s the point?

***

Another reason I hesitate to write about my health is that I don’t know what it accomplishes besides me venting my frustration. I hate to whine or complain; I’d much rather laugh it all off — no big deal. Please don’t see me as a victim, a burden, an annoyance.

My family is tired of my health issues, though I don’t necessarily mean that in a bad way. There’s only so much they can do, especially from a distance. And when it’s a constant stream of shitty illnesses and injuries, each one begins to lose its impact. I get it. I’m tired of dealing with it, too.

What’s the solution? Do I continue talking about all of this, and sharing the dumb things that happen to me? Most days I can handle it just fine, but dealing with pain, limitations, the isolation of bed rest, prevalent scarring, and an unpredictable future sucks. There’s no way around that.

The part of me that has worked in health publishing for five years says it’s important to share my story, raise awareness, whatever. But inviting anyone into my life means pulling them into this world of illness: gross symptoms, horrible medical procedures, my inability to do anything half the time. I know there are people who would be understanding and willing to help, but I can’t get over how unfair that feels. I’m so used to stubbornly managing it all on my own, even if that means barely getting by. 

I’ve always encouraged writers to end on a constructive note so that readers don’t leave the piece feeling hopeless. But I’m ignoring my own advice because I don’t know what the constructive angle is here (and also because I’m my own editor and I can). It’s a beautiful, sunny, spring day in Colorado, and I would love to be out on the trails, feeling my body burn and ache in a healthy, rewarding way. Instead, I’m watching other people from my apartment complex head out to walk or bike or hike as I sit on the couch with a bum foot, an upset stomach (my pain and fatigue forced me to order delivery last night), and an exhausted body. 

Once again, I will fall asleep on a Sunday night burying my dejection under a fantasy scenario and thinking to myself, full of false hope, Maybe next weekend.