Words Versus Spoons: On Writing with Chronic Illness

I was going to blog about something else this week, probably editing and what it’s like to return to a book I haven’t looked at for awhile as I dip back into revisions on GALATEA’S PARADOX. However, life and my rogue immune system had other plans.

I’ve been hesitant to write on this topic for a number of reasons. First, because it’s a bit of a downer, and I’ve found that my positive, inspirational-style blog posts get more engagement than the ones I’ve written about things like imposter syndrome or that whole world ending dealio we have going on. Second, because it feels quite vulnerable and personal to talk about my diagnoses in a public forum. Third, I feel that my challenges “aren’t that bad” (hello, self-minimizing).

Finally, ableism is still extremely common and blatant both within the publishing industry and in the world at large. It’s an axis of marginalization that is often poorly understood even by people who mean well and otherwise seem like sensitive human beings.

Of course there’s always strong cultural pressure, especially on social media, to not talk about illness and “weakness,” to share only the highlight reels. But when I start feeling this kind of resistance and trepidation around a topic, I also get annoyed and contrary and stubbornly rebellious.

Thank you to everyone who responded to this tweet and encouraged me to write about this!

Please note before you read on: I’m not writing this for sympathy or pity. My intended audience is primarily other writers dealing with chronic illness and secondarily, abled people interested in understanding that experience.

I am also not looking for health advice on my various diagnoses. Rest assured, I have tried acupuncture, meditation, chiropractors, aromatherapy, homeopathics, vitamin supplements, and probably some things you haven’t thought of. I’m up on the latest research and FDA approvals. Really, I got this.

So, with that disclaimer out of the way, here we go.

The other side of the highlight reel.

This year has been a great one for me in many ways, but my physical health has been very up and down. I live with multiple so-called “invisible” disabilities: migraines, celiac disease, and rheumatoid arthritis. That’s not including the possible ones my doctors (bless their hearts) haven’t caught yet, because the darn things love to flock together.

A crowd of Pokemon cheers the exhortation "Gotta catch 'em all!"
Autoimmune disorders: like Pokemon, in a way.

Invisible disabilities are so-called because most days, I look abled. I don’t use a wheelchair or a cane. None of my diagnoses are life-threatening or “fully disabling.” The symptoms come and go. They allow me to chug along, mostly functioning except when I’m very much not. They are all relatively managed with medication and diet, and until recently, the RA, which started when I was 18, had been officially in remission for a couple decades.

For whatever reason, whether it’s pandemic stress, hormonal changes, or just pushing myself too hard, my migraines have been brutal this year, tipping more toward chronic than cyclical. Lately, too, I’ve been waking up with painfully stiff fingers, toes, and knees. If I use my phone’s touch screen too much, my hands start to ache. The painful stiffness is a familiar sensation. I suspect it’s the return of my friend RA and there’s not much to be done about it. It eases with stretching, time, and anti-inflammatories. It’s only to be expected. I am, after all, getting old.

But all the same, I need my hands to type.

Writing is a physical activity.

We’re prone to think of writing as a purely mental pursuit. The process of composing and editing are indeed mentally taxing, but here’s a twist that may not have occurred to you:

Your brain is a physical organ.

A  white man with glasses and questionable sideburns makes a "mind blown" gesture with a pained expression on a background of stars and fireworks
Mind: blown.

The brain is fueled by glucose. It is affected by environmental factors that cross the blood-brain barrier. It is intimately tied in with the rest of our body through our nervous system, and researchers are beginning to think that some functions we associate with the brain actually take place in, or are at least deeply affected by, the gut. Our mind doesn’t function in some metaphysical space separate from the rest of our physical existence. It’s sentient meat.

Mental work is physical work. But beyond the physical work that the brain performs to create meaning from meat, to make words and worlds, writing taxes the rest of the body too.

As I mentioned above, typing places heavy demands on the hands and wrists, which you don’t think about until it hurts to place your fingers on the keyboard. Handwriting also requires fine motor control. Using a computer display can cause eye strain, pain, and nausea for light-sensitive migraine sufferers. Just sitting up at a desk to write can be exhausting or even impossible if you aren’t feeling well.

For myself, I’m aware of available accessibility aids like speech to text but at this point, I’m not ready to adapt my composition process to an entirely new mode. My brain is habit-bound meat and it thinks that words go in keyboard. It’s skeptical of other means. However, I am considering options like a tablet for writing from the couch when that’s as far as I can get for the day.

Managing chronic illness takes time and energy.

My diseases are managed, but managed doesn’t mean they have no impact. For example, my celiac disease was diagnosed a few years ago after likely years of “silent” subclinical symptoms. It’s an autoimmune disorder with one treatment: the deceptively simple prescription of a gluten-free diet.

However, even with careful meal planning, I still manage to gluten myself every few months. Each exposure triggers my immune system to attack my gut and sets my healing back. It can take days to weeks for me to feel right again. Eating out is fraught with risk, eating meals made in other people’s kitchens feels like a trust fall without a net, and even cooking my own food has its pitfalls. The most recent culprit, I believe, was dried minced onions I used in a homemade curry.

The minced onion should have been safe. It’s a single ingredient spice. Onions, one would assume, are gluten-free. I started using them in one of our staple recipes because we ran low on our normal onion powder, a casualty of supply-chain problems. But I had the leftovers for lunch several days this week, and the same familiar symptoms of low level explosure kept recurring: swelling, heat, and redness in my face, bone-deep fatigue, spikes of anxiety, and brain fog.

Finally, a deep dive into online research from my supine position on the couch revealed that the company (McCormicks, a ubiquitous brand in my area) processes their spices on machinery that also processes products made with flour. Mystery solved, but I’m still dealing with the symptoms four days later.

Such is the cost of a lapse in vigilance. The amount of time and mental energy that I still spend trying to find out what foods are safe for me is significant, the dangers are not always apparent, and the consequences of failure are intense if somewhat transient.

Celiac disease won’t kill me, but beyond the fact that I can no longer take onions for granted, it changed my life forever. For example, I can’t give myself and my spouse a break from food prep by a nice dinner out on the spur of the moment. Also, I still don’t have the same levels of physical or mental energy that I used to before I started getting sick.

When it hits, brain fog feels like the cogs in your brain are gummed up (clogged, I like to imagine, with flour). I’m not as sharp as I used to be, my memory can be iffy, and I take a lot of naps. For awhile, before I got my diagnosis, I was almost narcoleptic, sleeping through appointments and obligations after closing my eyes for “just a minute.”

Spoon theory 101.

If you have been around the internet for awhile, or at least around online disability networks, you may be familiar with the term “spoons” or “spoonie.” In case you don’t know the origin of the term or what “spoons” mean in this context, I’ll explain. For me, it’s an essential part of understanding what it’s like to live with a body in a state of rebellion against itself.

Iconic genderfluid comedian Eddie Izzard, looking dapper in a suit on a blue background, makes a scooping gesture and says "I like spoons."
They’re very useful.

“Spoons” is shorthand for “the physical/mental energy required for day to day living.” A “spoonie” is a person who has to think about their spoons. The “spoon theory” originates from this personal essay by Christine Miserandino, who used a handful of spoons to explain to a healthy-bodied friend what it was like for her to live with lupus.

I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.

– Christine Miserandino, The Spoon Theory

I don’t have lupus and I don’t experience all of the same challenges Christine wrote about. But much of what she describes feels very familiar, especially on migraine days or when I’m having a gluten reaction.

When I am doing better, I often push myself too hard and spend spoons I don’t have, resulting in a crash. When I’m in a bad headache cycle and in a lot of pain, getting out of bed, getting dressed, and even brushing my teeth costs spoons. Sometimes I run out of resources by the time I get to the couch in the morning.

Self-care practices like yoga and meditation also cost spoons. Even celebrating requires extra thought. One drink, for example, can trigger a days-long migraine, and I also have to be careful of the non-alcoholic ingredients in my cocktails because of hidden gluten.

Sitting in front of a fireplace, Hellboy offers fish person Abe a six pack and says, "You're in love. Have a beer," to which Abe responds "Oh, my body is a temple."
If my body is a temple, its gods are always angry.

Writing, like every other life activity, requires spoons. It is mentally and physically demanding. If you have brain fog, it can be nearly impossible to put words together in a coherent fashion. I also have the fun migraine prodrome (pre-attack symptom) of losing verbal fluency. As an author and as a lawyer, let me tell you, this is Not Ideal.

I can’t write every day.

This is why I absolutely hate the advice that writers must write every day. I can’t even focus well enough to watch Netflix when my symptoms get bad, let alone process words and put them on the page. If I thought I had to write every day, I would have given up on writing a long time ago. It’s just not possible for me and sometimes I have no choice but to set aside my goals and rest.

Flat out, the advice that serious writers write every single day is horse manure. This is even more true if you have a full-time job on top of a writing career. And it’s doubly so if you are also living with disabilities. Two middle fingers up, with all due respect, to the famous writing gurus who have propagated this advice. It’s gatekeeping, it’s wrong, it creates unrealistic expectations for young writers, and it fosters a harmful attitude toward productivity and self care.

A typewriter rapidly spits out a page with repeated (typoed) message "All work and no play makes Jack a dull boy"
Just because the typewriter is demonic doesn’t mean it’s wrong.

I do not write every day because forcing myself to adhere to a strict productivity schedule like this isn’t just self-defeating, it’s self-harming. The days, weeks, or months in which I can’t or choose not to write don’t mean I’m not a writer. But even though I know this, I still struggle with guilt about not writing more.

Maybe we should call advice like writing every day no matter what “toxic productivity.”

Self-kindness vs. pushing through it.

Two animated cartoon men, one blond and bearded, the other dark haired, look at each other and say "Both? Both." They look at the camera and say "Both is good."

With all that said, dealing with my illnesses does require a balance of rest and writing through it. If I only wrote when I felt perfectly healthy, I wouldn’t get much done at all.

However, I’m not always great at making the call on whether to give myself a break on a day to day basis. I second guess myself a lot, especially when I err on the side of taking a day off. I often subject myself to internalized ableism, like calling myself “lazy” when I take needed rest time.

One thing that helps when I’m not sure whatever to push through is to set a very small word goal for my session. I make a deal with myself that if I still feel like I’m swimming through molasses by 50 or 100 words, I’ll stop for the night. If things start to flow, I can stick with it.

Thanks to the pandemic, ironically, I have more opportunities for self-care and saving spoons than I did in the past. Not having a commute is a blessing for time and energy management. I can also lie down for a nap if I’m feeling exhausted in the afternoon, the better to have more resources for writing after dinner.

I am very privileged to have those flexibilities at this point in my life, along with good mental health care, financial security, and an understanding partner. This is probably a big part of why I’ve had higher creative output the last two years, despite all the additional stress of living through a global emergency. I took those extra spoons I saved and turned them into words.

I think the key is that I really have to meet myself where I am each day, every day. That can change very quickly, so it’s important not to hold myself to inflexible expectations based on yesterday or last week.

Disability informs my creative work.

It’s no accident that Lily, the main character in CAMBION’S LAW, experiences certain symptoms at the beginning of the novel: migraines, insomnia, aches and pains, fatigue. Her refusal to attend to her energy needs has resulted in an apparent chronic illness, which doctors are helpless to solve.

The book cover of CAMBION'S LAW by Erin Fulmer shows a white woman with wavy dark hair, a bustier top, and black feathery wings holding a pistol in front of a moonlit Golden Gate Bridge.
Power fantasy: you can have a chronic health condition and still look this badass with ease.

Of course, she also has a magical way of curing those symptoms, something that I don’t have. It comes at a cost, but she’s lucky enough to find someone willing to bear the downsides to support her well-being. (Shout out to supportive partners of spoonies everywhere.)

In GALATEA’S PARADOX, it’s my detective character Galen who experiences headaches and eyestrain from the technology he depends on, while his boss uses a mobility chair. (Because this is the future, and I like to picture better things for us, Chief Inspector Darcy’s disability is neither remarkable to her colleagues nor a barrier to her advancement.) Meanwhile, other characters deal with PTSD symptoms and memory issues, which technology both helps and hinders.

That’s the magic of SFF: imagining different possibilities and reimagining familiar realities. But as I write this, I realize that I haven’t dealt with chronic illness directly in my books so far, and that I love to come across spoonie rep in my reading. So that’s definitely something I want more of in my own books and others. If you have reading recs for this, please share them!

Also, if you are a writer with a chronic condition that impacts your creative work, I would love to hear your experience. How do you balance deadlines and self-care? How do your diagnoses affect your approach to productivity? How does your lived reality show up (or not show up) in your work?

Most importantly, how are you being kind to yourself today?

3 thoughts on “Words Versus Spoons: On Writing with Chronic Illness

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