Photo of eight colorful journals displayed on a wooden table.

It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness

When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.

I suppose that the nonfiction essay format, too, has its flaws—not just culturally, but for me personally. On the culture side, my mind immediately jumps to the arguments for or against memoirs that seem to go on in perpetuity; whenever one of those “must read” memoirs comes out, it’s inevitably about some gruesome personal tragedy like substance abuse or having an addicted child. And then we get all of the critical justifications for holding memoirists under bizarrely intense scrutiny (just one of the many horrible things that James Frey has left in his wake as a career hack—well, that and I Am Number Four), debates over whether memoir is dead as a genre, and the inevitable pronouncements of “memoir is stupid,” memoir is overdone, and a rotating fractal of shittiness on that wavelength. If these criticisms were distilled into a Facebook status update, they might read: “Oh my God, you guys, I am SO SICK of all of these memoirs! HOW DARE writers think their lives are interesting. HOW DARE THAAAAAAAY.”

Personally, I am over addiction memoirs, have been for a while, and avoid reading them if possible–but this is mostly because I grew up in an alcoholic family and so those dynamics are kind of old news to me. If other people want to read them, that’s great; I just won’t.

The whole experience-with-addiction-by-way-of-alcoholic-family thing is, however, not the end of my trouble with memoir and its dyed-redheaded sister, the personal essay. The reason I have issues with writing in the personal essay genre myself is because: a.) several influential adults in my formative years told me that I was, essentially, not terrible at it and should keep doing it regardless of my choice of college major and life circumstances thereafter, and b.) despite this, I cannot seem to get my shit together when it comes to actually writing things down. I have a dearth of material thanks to life experiences that start to look like they’ve been plucked straight from a Todd Solondz movie at certain angles, and above-average writing skills. I do not have a dearth of whatever that thing is that writers have.

Because I have chronic (and constant) pain and fatigue from fibromyalgia, much of my life is carefully structured around taking care of my health and living as fully as possible without stressing myself out or burning out totally before I hit middle age. Before anyone mistakes me for a chronically ill chick version of Charlie Kaufman from Adaptation, however…well, that is unfortunately rather close to the truth. But instead of thinking about how I’ll have a muffin and then sit down to work on my script, I’ll make all of these amazing plans in my head for how I will finally get some writing done today (or tomorrow)—and then those plans will be unceremoniously derailed when it’s crunch time, thanks to, say, burning back and shoulder pain that renders me unable to sit upright at the computer, or the feeling that someone is driving railroad spikes into my hand and arm joints, making me unable to type. Fatigue, too, brings its own unique blend of fucked-upedness to the mix: I’ll make some tea, turn on my computer, queue up some Queens of the Stone Age, sit down to write, and then suddenly feel like I’ve been doused with about 500 mg of Benadryl intravenously.

The most frustrating thing about fibromyalgia—and many types of chronic pain in general, I would guess—is that the signs of pain and fatigue don’t always show up on the body, and so describing this to some people is sort of like telling them that the pain makes you feel like you’re dragging a snarling, invisible dinosaur on your back at every moment of the day; more often than not, they’ll look at you like you’ve lost your mind, and then you’ll feel like a fucking jackass. Worse still is when you attempt to be accountable in getting “creative” things done on your worst pain days, and then after 15 minutes of writing or painting or whatever it is you like to do, you end up having to go lie down for twice that long due to physical symptoms.

When I have to lie down to take a break, I feel lazy. However, having to lie down when you have a chronic illness and your symptoms decide to ruin your day is not the same thing as, for instance, an abled person lying down because he is sleepy from having watched TV all afternoon. After eight-plus years with chronic pain and fatigue, I should know this. Most of the time, I keep it in mind successfully.

I am a terrible writer on my worst pain days, especially when the writing in question is done for my day job as part of a disability employment policy consortium. Ask me, on a high-pain day, to write an office-appropriate email that will be sent to more than one person, and it will take roughly five minutes before I figure out that I actually have to type the email on the keyboard and can’t just write it by glaring at my computer screen. After that, the best anyone can hope for is a string of words that, when read aloud, sound like they’ve been to hell and back via Google Translate. Actual creative writing on those high-pain days? Forget it.

Having a body that doesn’t quite keep up with one’s mind is extremely weird in general; my opinion is that having such a body/brain mismatch is  one of the worst parts of chronic pain that doesn’t involve nondisabled folks’ doofy, “well-meaning” commentary about what you should be doing/eating/thinking to manage your illness. Most of the time, my brain is raring to go—neurons firing, ideas for essays or commentary pieces bouncing around, wanting to race through whichever two books I’m reading at the moment, the whole bit—my body, on the other hand, is not.

Another bugaboo is the insistence that the reading public tends to have on reading memoirs and/or personal essays that fill the “grief porn” hole a little too neatly, particularly when it comes to disability or other non-average life experiences. Addiction memoirs are usually a shining example of this tendency; there’s no slaking the public’s thirst for details that are so gritty, so creepy, so disgusting—and so inspiring at the same time, because goodness forbid that the people reading the book be unable to learn something from the writer who is so unlike them.

I’m not saying that memoirs or essays about adversity and, to be crude, bad shit happening cannot be awesome. There are quite a few great disability memoirs that strongly buck the “inspirational” trend, too—Harilyn Rousso’s Don’t Call Me Inspirational, A. Mannette Ansay’s Limbo, Susan Wendell’s The Rejected Body, and Floyd Skloot’s The Night-Side, among others—all of which steadfastly refuse to be shunted into the “zoo exhibit of people with disabilities, shown for the inspiration of abled people” category. It remains difficult for people who want to write personal stuff that deviates from the norm somehow to resist attempts to sensationalize their work or their lives.

Many of my experiences, however, have tended to be light on the gruesome, gory, icky details that the reading public eats up, unless that public likes details about pants-blastingly terrible allergic reactions. I do not consider what I have to say about my experiences to be sad, or tragic, or life lessons for abled people, or for men who haven’t considered women’s experiences for even a second, or for well-off public radio listeners who also really love Upworthy. I just tell these stories in this format because I enjoy it; also, to have some of the experiences I’ve had and not do anything with them seems wasteful.

So this is the climate in which I float, unsure if I even want to put my toe into the lake or just forget about it and go home since the water is probably too damn cold anyway. I’m apprehensive about cries of “who does she think she is? SHE’S NOT THAT INTERESTING, how dare she write personal essays, as if her experiences and thoughts are worth something.” Fearing that I’m going to get that sort of reaction from all corners is the bad news. The better news is that I get to write about this stuff myself.