an assortment of pills

A Chronically Ill Writer Measures Out Her Life in Spoons

Three times a day, I retrieved a handful of pills from the little blue basket on the kitchen counter. It was 2017, and I was two years into my career as a chronically ill writer. In the eight years after my Behçet’s Disease diagnosis, I’d had plenty of time to rage, cry, and contemplate my situation—how my chronic illness impacted my life, how many medications I needed to be able to live with minimal pain, how I rationed my spoons each week. What I neglected to realize was how obvious my condition was to other people.

Like all of my other diagnoses, Behçet’s is an invisible illness, at least for me. Then again, most of my life is invisible. I worked from home before the plague hit. Most of my colleagues have never seen me in real life. But even those who know me best can’t always tell when I’m in the middle of an autoimmune flare.

I’ve lived with aphthous ulcers—the hallmark symptom of Behçet’s Disease—for so long that I can talk and eat and brush my teeth without revealing the amount of pain I’m in. As Julie Ryan of Counting My Spoons observes:

“The sad truth for those of us living with chronic pain is that we get really good at not noticing the pain  up to at least a 4, maybe even a 5. It’s not until pain hits a 6 that we even think about taking something for it.”

I never made a show of hiding my illness. In fact, at one point, I carried around a big, floppy purse full of pill bottles that rattled with every step. Yet it had never occurred to me that anyone would notice how different my day-to-day life was from theirs, until my teenage niece said, “She takes a lot of medication, doesn’t she?”

A Patient Etherized on a Table

I was struck again recently by the weirdness of needing medication to go through life with minimal pain. During my nighttime pharmaceutical regimen, I take six tablets—to keep the Behcet’s from killing me, to keep my cats’ dander and saliva from making my life miserable, to keep my brain from making me want to die, to keep my brain from keeping me awake at night, to keep my body from making another, smaller body inside it. These, in addition to the gummy vitamins taken in the morning, the acid reducer taken in the afternoon, the nasal spray taken immediately after the six nighttime pills. And all of those, in addition to the muscle relaxers and anxiolytics taken as needed.

Seven prescriptions, four over-the-counter drugs and supplements. I just turned thirty-one, which means that I still have a whole, pill-filled life in front of me. Do most 31-year-olds have eleven different medications they need to keep them comfortable in life?

I Googled it. A 2019 poll conducted by the Kaiser Family Foundation discovered that nearly 60% of American adults take at least one prescription drug. The poll results don’t cross-reference respondents’ ages and number of prescriptions, so I have no idea if seven makes me an outlier, but that 60% means I’m not alone. Hell, if the metric is “takes at least one prescription drug,” I’m not even in the minority.

That doesn’t stop me from feeling like I am.

Pinned and Wriggling on the Wall

These are strange and distressing times.

When I talked in September about a recent tango with depression, I thought the worst was over. But I went on to spend the last three months of 2020 eating my feelings, unable to sleep, focus, or perform even basic housework.

I’ve been a chronically ill writer for my entire adult life, but before October 2020, I’d never felt the need to take time off work to manage my health. I let fulfilling-but-unpaid work fall to the wayside, told myself I just needed another week off. Weeks turned into months. I fell so far behind that I worried I was burning the bridges I’d worked so hard to build.

As a result, my anxiety showed up in full force, every day. The constant edginess and unpredictable surges of tachycardia left me exhausted. I couldn’t enjoy anything without my brain reminding me that I had something more important to do…even if I didn’t.

I’ve taken anti-depressants and anxiolytics off and on—but mostly on—for the last twelve years, and I’m forever grateful for the resulting mental-health improvements. But before the last few months of 2020, I wouldn’t have dreamed of asking my doctor to change my medication list. To move from having 70-80% bad days to 20-30% was a marked improvement, as was knowing that my new bad days were not as terrible as the old ones. Put simply, my mental health wasn’t a gift horse I wanted to look in the mouth.

I also didn’t want to admit that I was getting sicker.

It Is Impossible to Say Just What I Mean

As the pandemic crept closer and closer to my pod, I doomscrolled through endless headlines about global warming, conspiracy theories gone wild, and the tragicomic horror of American politics. Each one chipped a little more of me away.

I didn’t want to admit to anyone that I was cracking. Everyone on the planet was going through this, I reasoned, and it would therefore be weak and selfish of me to say that I was having a rough time. After all, I didn’t have it that bad, at least not compared to those who’d lost their livelihoods and loved ones to the pandemic.

On top of that, no doctor had ever expressed genuine concern for my health before. One GP refused to acknowledge my official Behçet’s diagnosis. Another sat a few yards away and did nothing when I was on the verge of passing out, even with nurses screaming for her to help. When you have the words “health anxiety” in your chart, about half the doctors you meet are inclined to think it’s all in your head.

This time, it was. My brain had spiraled down to some deep, dark place. I felt like Walter Donovan at the end of Indiana Jones and the Last Crusade, losing my life more rapidly than I’d lived it.

A .gif of the Grail Knight with the text, "He chose poorly."

Help finally arrived when I ran out of prescription refills. I agonized over the appointment. Would my new GP mention the weight I’d gained? Would he think I just wasn’t trying hard enough to be a functional human being? I worried I’d be written off as just another lazy, fat patient who wanted a miracle pill to fix all her problems.

But he listened. More than that, he seemed genuinely concerned when I laid out how my anxiety was squatting on my life. There were no sideways glances, no negative hems and haws over my request. He sent me home with a new pharmaceutical regimen and never once downplayed my experiences.

It sounds ridiculous, but I left that appointment feeling, for the first time, as if I had no reason to settle for physical and psychological discomfort. The effects of my chronic illnesses were obvious to another person, a doctor who looked past my weight and my hypochondria to see a human being who needed—and deserved—help, delivered without judgement.

For my part, I felt better just knowing that we had a plan.

The Chronically Ill Writer, Come from the Dead

Imagine my surprise when the plan worked.

A few weeks down the line, I’m able to write again. I can stay awake all day without wanting to disappear into bed forever. My spoon drawers are full for the first time since grade school.

I wrote this—my first blog post in more than four months—and didn’t feel as if I was shouting into the void, for once. Somewhere along the way, sometime in those terrible few months, I learned how to talk about my life in a meaningful way. If it doesn’t help my readers, maybe it will at least help me.

(But I hope it means something to you, too.)

Image credit: Pixabay on Pexels