Writing Your Disability or Chronic Illness

 

The truth is that I did it with no thought of the consequences.

I was in grad school for science writing, and I had an essay due. Every minute not eaten up by school or my full-time job went toward managing the mysterious, often-incapacitating illness I’ve had all my life. Doctor after doctor told me the problem was all in my head. Confusion, self-doubt, and illness itself fogged and clouded my mind. During those moments when I could think clearly, my body was nearly all I could think about.

So I wrote about it.

I handed the essay in, and I felt a little lighter. When the next assignment came around, I did it again, and then again. In school, I learned new skills to find people whose symptoms tracked with mine. I started interrogating doctors and researchers. And in this frenzy of fact-finding, miraculously, I got a diagnosis. Or, rather, diagnoses, plural—because it turns out that what I had was not a single illness at all, but a cluster of obscure, multisystemic syndromes.

Naturally, I wrote about that, too. All the while, I sent the pitches and pieces to big-name magazines, never fully considering what putting my body in print could mean.

I found out soon enough.

It meant walking into family gatherings to find a sea of concerned, pitying faces. It meant sifting through judgmental and menacing comments from strangers. It meant realizing that any future editor, employer, or love interest could search for my name online and read all about my assorted dysfunctions before I was ready to get into it.

And it meant realizing that my words could be of service. Hearing from readers that my personal, private story was their story, too. That reading what it feels like to live in my body gave them empathy for their ill and disbelieved wives, their children, themselves. “This happened to me,” I heard again and again. Or: “My god. I had no idea this could happen.”

To write about a body is to expose it. This is, of course, part of the reason we do it: to lay bare the experience, to enlist witnesses, to find connection. But this exposure is not without risks. The question of whether a writer should publish work about their own disability or chronic illness is as complex as it is personal.

 

A Means for Survival

The half-dozen writers I interviewed for this piece shared vastly different experiences of sending this extremely intimate work into the world. But when I asked them why they did it in the first place, most said the same thing: “I had to.”

“It was a means for survival,” says Keah Brown, journalist and author of The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me. Brown began writing her story in part because she couldn’t keep it to herself any longer—but also to combat problematic media and literary depictions of disability, which bore little resemblance to her real life.

“So often when you look at disability,” Brown says, “you see only representation in the form of exploitative telethons or inspiration porn. And often, even that [only includes] white disabled community members, and I’m a black disabled woman. Because often when we think of disability, we don’t think of disabled people of color. I wanted to change that.”

Julie Rehmeyer’s* first public disclosure of her disability also was driven by a need for accurate representation. In 2011, the scientific and cultural discourse surrounding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was even more dismissive of patients than it is today. Government websites promoted a flimsy psychological theory of the illness and recommended that bedridden patients try talk therapy and exercise.

Rehmeyer, who would go on to write the book Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, recalls a spate of “awful, sneering” articles telling ME/CFS patients to, as Rehmeyer puts it, “just shut up and be quiet … because science will just work everything out.” She found that attitude intolerable. “It was just so enraging,” she says.

When an editor asked her to cover the controversy of the day in ME/CFS research, Rehmeyer perceived both an opportunity and a responsibility. It would have felt cowardly not to write it, she says. In fact, she adds, “It felt needed and important and, like, nobody else was going to do it.”

Reporter and editor s.e. smith turned to disability writing out of more immediate necessity. “I needed money,” smith says, “and that was what editors would buy.” It was a pragmatic adaptation to the mid-00s boom in online personal essays—an exploitative, sensational zeitgeist sometimes referred to as the first-person industrial complex.

 

Truth and Consequences

Legally speaking, employers cannot discriminate against someone because they are disabled. Practically speaking, it happens all the time.

The decision to write your body’s story should not be taken lightly. Smith cautions other disabled writers to weigh their options carefully. “I think inexperienced writers can get into really big trouble real fast when it comes to writing personal stories,” smith says.

The act of disclosing personal health information online means publicly and irrevocably linking your name with specific diagnoses, symptoms, care providers, treatments, or behaviors. Once this information is out there, anyone can access it. That includes insurance companies, the government, and current or potential employers.

Legally speaking, employers cannot discriminate against someone because they are disabled. Practically speaking, it happens all the time.

Life insurance companies will use any information they can find to determine how much to charge or whether to cover somebody at all, as The Wall Street Journal reported earlier this year. Similarly, The New York Times noted this year that the Social Security Administration monitors social media to police the behavior of people seeking disability benefits. People who don’t “seem” disabled can be denied benefits.

To mitigate these risks, smith offers a fairly straightforward strategy: Don’t give everything away. “The fact that I’m mentally ill is very readily available public information,” smith says. “My specific diagnosis is not.”

Keeping specific health information out of the public sphere “makes it a little harder to pin a discriminatory target on me,” smith says. “Also, I just love seeing people speculate. The armchair diagnoses are amazing.”

 

Patients and Professionals

Brown notes that not everyone has a choice about disclosing. “You can see my cerebral palsy clear as day,” she says. But in some ways, she says, this is a privilege: Unlike writers with invisible disabilities, she’s never worried that anyone will disbelieve her.

And the disbelief attached to certain disabilities is significant. The antipathy between ME/CFS patients and certain researchers—namely proponents of the debunked psychological model—is particularly pronounced. Media coverage of the conflict has historically skewed strongly in favor of the researchers, casting people with the condition as hysterical and untrustworthy.

“In the case of chronic fatigue syndrome,” Rehmeyer says, “as soon as you say you’re a patient, all of your other credentials vanish. The fact that you’re a respected journalist goes away, or the fact that before you got sick you were a researcher with serious credentials—all of those things just seem to be irrelevant. Now you are just a patient.”

Disabled writers rightfully worry that disclosure will lead to perceptions that they are less professional, less reliable, and less competent than their abled colleagues.

Rehmeyer resisted the “patient” label at first, not wanting to align herself with a population science didn’t trust. “I felt like, you know, if I was too cozy with patients that I would lose my credibility.” In time, she came to call this problem what it is: ableism.

“I really am a patient,” she says, “and I also really am a journalist, and those things can coexist.”

This is true. And it runs counter to all of the cultural messaging that tells us that disabled people don’t (and shouldn’t) exist in professional settings, including in newsrooms.

Disabled writers rightfully worry that disclosure will lead to perceptions that they are less professional, less reliable, and less competent than their abled colleagues. This is ableism at work—but is it working?

“Bluntly, yes,” smith says. “It affects the way that some people interact with me.” But disclosing disability can also have the reverse effect. In an age of increased pushes for editorial diversity, while some editors may still discriminate, others actively seek out disabled writers, or even—admittedly, rarely—are disabled themselves. This is often the case for trending, disability-adjacent topics like the plastic straw ban. “People have figured out that it’s probably a good thing to have us handle those stories,” smith says, “because we are better at them.”

 

Readers Reply

No one can predict how a work of literature will land on its readers. But disabled and chronically ill people who choose to write about themselves should be prepared for a range of reactions. And because the subject of the material is the body, these reactions will feel especially personal. Suddenly, a lot of people will have opinions about a writer’s body, the way they relate to it, and the way they care for it.

Some of these people may be hostile. This is especially true for multiply marginalized writers, who experience increased levels of harassment and violence online and off. While the white cisgender writers I interviewed were relatively sanguine about the post-publication experience, smith has been doxed numerous times and regularly receives graphic, violent threats for writing about their experience as a disabled trans person. Brown fields frequent, aggressive responses from attention-seeking trolls—and from people who may sincerely be hateful.

Other challenging messages may be less intentionally harmful and more a result of poor boundaries. Readers sometimes send smith and other disabled writers their own (often traumatic) life stories, ask for specific medical help, or demand additional information.

Esmé Weijun Wang, author of the prizewinning, New York Times bestselling book The Collected Schizophrenias, says she hadn’t anticipated this aspect of high-profile authorship. In an email, Wang writes, “I wish I’d known that to make such vulnerable disclosures does mean, if you end up achieving a certain level of success, doing a fair amount of emotional labor for strangers—which is fine, but is something that is best prepared for.”

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Smith copes by employing a multifold safety net. They block, mute, and report harassment on Twitter. They work with editors who they know will have their back before and after a story is published. They screenshot menacing messages, save emails, and forward any credible threats to friends and an attorney. It takes time, effort, and energy.

Brown says the hateful messages used to bother her more, especially in the early days, when her relationship with her body and disability felt shaky. But as her success grew, the spiteful voices mattered less and less. “Here I am with a book at a major publishing house and I’ve got all of these good publications on my resume,” she says. “Like, who are you?” And, she says, “for every trash person that has something terrible to say, there’s ten people lined up like, ‘Hey, we can’t wait to hear or read more. And we love what you have to say. Keep doing what you’re doing.’”

 

Familiar Concerns

Loved ones will also have their own opinions. Many writers considering a first-person disability or illness story grapple with an immense question: “What if my family hates it?”

The answer may be, “Be thoughtful, but write it anyway.”

Nonfiction writer Sonya Huber is the author of Pain Woman Takes Your Keys: Notes from a Nervous System. Of this personal work’s effect on her relationships, she wrote in an email, “I think it strengthened them. The fact that my husband was completely ok with me writing about our sex lives as affected by chronic pain was great evidence of his support, and writing about that helped us proceed along the path of living with it.”

“The people I love most have been tremendously supportive,” Wang says. “The people who, in the end, were not particularly supportive have drifted out of my life.”

Rehmeyer found that writing her book forced her to have some difficult but transformative conversations with family members. She let everyone in her life who appeared in the book read the manuscript and offer their feedback. And “in every circumstance where somebody wanted something changed,” she says, “they made the book stronger. It was a complete win on every level.”

 

Far-Reaching Ripples

The benefits of this work are myriad, profound, and often surprising. Huber says the focus required to write about her disability actually brings some measure of temporary pain relief.

Rehmeyer can draw an even straighter line between her writing and her symptoms: After publishing her first ME/CFS piece, she was contacted by readers who believed their illness—and possibly hers—was a reaction to mold. Rehmeyer was skeptical, but investigated for herself, and eventually concluded that they were right. She took steps to decrease her exposure to mold, and “serious health gains” followed, she says.

For those who choose to take up this important work, the rewards ripple onward and onward, inward and outward.

Her publications have also catalyzed official shifts that could improve health care for others. Rehmeyer recalls that a New York Times op-ed she co-wrote contributed to a revision on the Centers for Disease Control and Prevention’s website regarding the treatment of people with ME/CFS. The power of her stories to change lives, she says, helps transform her private, “pointless” suffering into something “empowering and whole.”

The risks—legal, financial, professional, personal—of vulnerable, body-centered writing are significant. But for those who choose to take up this important work, the rewards ripple onward and onward, inward and outward. Wang writes: “The most fulfilling response I’ve had to my published work about illness has been along the lines of, ‘I’ve never seen myself reflected this way,’ or, ‘I didn’t understand my loved one until I read your work.’ That’s been incredible.”

Writers may find that sharing their disability experience initiates them into communities they might never have discovered otherwise. “I wish I’d known how large of a readership and community was there to support me,” Huber writes. “I have connected with so many other people who have pain, and I feel less alone as a result.” And that blessing goes both ways: “Readers have been amazing: sharing the work, giving hugely generous comments. I think there is no greater gift than having a reader tell you that they needed your work.”

 

 

 

 

*Disclosure: Julie Rehmeyer also serves on the board of The Open Notebook.

 

A pale woman with long hair leans against a white brick wall. She looks at the camera, half-smiling.Anna Carson DeWitt

Kate Horowitz

Kate Horowitz is a science writer, essayist, poet, and educator in Washington, DC. Her work on disability and illness has appeared in Pacific Standard, The Atlantic, Bitch, Bright Wall/Dark Room, Monstering, rose quartz, and elsewhere. Follow her on Twitter @delight_monger.

 

 

 

 

 

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