How Chronic Illness Made Me A Better Writer

I always wanted to be a writer, but sickness taught me the patience, perseverance, and empathy I needed to turn that dream into a reality.

Firefighter, acrobat, Jedi.

As a kid, I went through about a dozen different dream careers, but in the end, I settled on writing. For hours each week, I’d craft epic fantasies of magic and adventure starring sword-wielding princesses, complete with lineage charts and Tolkein-esque land maps, detailed right down to the location of each castle’s latrines.

As I grew, my love for writing only continued to grow and develop. I switched genres from fantasy to Young Adult, favoring tales about girls with lives I thought more interesting than mine. I wrote angsty poetry and created fake magazines full of fanciful celebrity interviews, human interest pieces, and Q-and-A columns.

Writing was fun, how I enjoyed myself when I wasn’t reading or playing softball. It made perfect sense to declare a creative writing major before I even started college. I was ready to challenge myself.

Once college began, writing did get harder, though not in the way I expected it to.

Author Kelley O’Brien.

When I was 19, I was diagnosed with Dysautonomia, a group of disorders that cause the autonomic nervous system to malfunction. I was dizzy all the time, prone to passing out, had zero energy, and walked around all day with a brain fog that made it difficult to think. Before long, I was so constantly symptomatic, I spent most of my time in bed. I fell behind in my classes, my employers forced me to take medical leave, and medications and doctor’s appointments became a full-time job.

Everything became more difficult once I got sick, writing included. It took me a long time to grow used to my new life as a sick person. When I did, though, I found that my writing had gotten better, and I think I have chronic illness to thank for that.

Part of it was that I had more time to write than I ever had before. Even when I was middle and high school, my days were filled with classes and extracurriculars. After becoming sick, I couldn’t go out the way I had before. More than once, I had to stay home because I wasn’t feeling well, missing evenings out with friends. More time meant more time to write, to practice, and improve. I could spend the necessary time on drafts for my creative writing classes.

Chronic illness gave me a much larger view of the world than I had before I became sick.

Chronic illness gave me greater motivation to get good. Because of my Dysautonomia, I’m unable to work jobs where I have to be on my feet for long periods of time. Not being able to be on my feet limits my job options to things I can do sitting down. things I can do while sitting down. Thankfully, writing falls into that category. Better, I can do it anywhere, including doctor’s offices and hospital waiting rooms. So it made sense as a way to make money. I just had to get good enough. And it was easier to get good because chronic illness gave me a much larger view of the world than I had before I became sick.

I’d always been sensitive to issues of prejudice and hardship, but experiencing these things firsthand was a different experience. As a well person, I sympathized with the sick and the downtrodden; as a chronically ill writer, I was able to empathize with them as well. I might not have the same experiences they do, but was now able to understand firsthand the loneliness, the frustration, and misery of so many others. It taught me greater compassion, and how to write with a more nuanced voice.

Chronic illness also taught me patience, a writer’s greatest asset. Before I was sick, I had a very limited attention span. Easily bored, I tended to roam from project to project: I’d begin writing a story with aliens and end up working on a play about a haunted forest. I rarely finished anything; my childhood bedroom is still filled with countless notebooks of my half-written projects. But through sickness, I learned to persevere. Writing is a long process, requiring the ability to take things a step at a time and power through; the same skills you need as a sick person. The more time I spent in doctor’s offices, emergency rooms, or lying in bed learning to deal with my new life, the easier I found it to focus on my writing, and see it through.

Chronic illness also taught me patience, a writer’s greatest asset.

Especially professionally, getting rejected is also a big part of writing. Not everyone is going to like everything you write, and if you want to make your living writing, you’ll need to be able to deal with rejected by editors on a daily basis. Illness made me more inured to rejection, though. While getting rejected still doesn’t feel good, it still feels a lot better than being told I’d never be able to be an athlete again, or hold down some of the jobs I loved. Those required me changing my entire life, but a rejected piece of writing? It can always be rewritten, and resubmitted.

Becoming chronically ill when I was just a teenager was challenging, overwhelming, and traumatic. Though it has been years since I got sick, I still have days where I’m angry, and full of resentment about what Dysautonomia has done to my life. But I’ll always be grateful for the ways it made me a better writer.


How “The Autistic Academic” Got Her Sci-Fi Writing Groove Back

In both the real world and through the pages of her fiction, Dani Alexis Ryskamp is looking to overthrow people's preconceptions of what it means to be autistic.

When Dani Alexis Ryskamp was nine years old, she read through all of her dad’s old undergraduate psychology textbooks in an effort to figure out what was “wrong” with her. “I knew I was different from other kids the moment I set foot in kindergarten,” Dani told Folks, “and my mother, my teachers, and my peers all made it very clear that ‘different’ was wrong.”

Dani Alexis Ryskamp, posing for an impromptu selfie.

Throughout childhood, Dani had no friends and was viciously bullied at school. She spent most of her time alone, reading fantasy novels, like Madeleine L’Engle’s A Wrinkle in Time quintet and Vonda McIntyre’s Dreamsnake; taking dance lessons; and running around on her mother’s forty-acre farm in rural Barry County, Michigan. Her mother’s advice for dealing with bullies—to be excessively ‘nice’ to them, in hopes that they’d respond in kind—was almost as misguided as her teacher’s: “‘Well, the other kids wouldn’t do this stuff if you’d try to be more like them,’” Dani remembers being told. “But it didn’t seem to matter how hard I tried. There was something they understood that I didn’t.”

All of this left her feeling “crazy, broken, worthless, fucked up.” Panic attacks and dissociative episodes afflicted her regularly. The world felt like a sensory onslaught. Motor function wasn’t always predictable, and she felt helpless in any social situation that didn’t let her rely on a script.  At age seven, she made her first suicide plan.

Dani’s precocious textbook-reading did more harm than good. The 1970s-era, 101-level psychology textbooks “convinced me that what I had was schizophrenia and that the only treatment was to be locked up and loaded down with tranquilizers,” she says. “It became my life’s mission to hide that I was ‘crazy.’”

It didn’t seem to matter how hard I tried. There was something they understood that I didn’t.

In an escapist fifth-grade fantasy, Dani designed her dream house: A four-room log cabin, far away from the world of bullies, where she would spend her days writing science fiction, communicating with her editors and publishers via phone and fax. “I’ve wanted to be a writer ever since I knew where books came from,” Dani says.

But working from home wasn’t yet mainstream in the early 1990s, and so every adult in Dani’s life—except for her dad—dismissed her solitary-writer-in-a-cabin life plan as ridiculous. “By the time I’d left for college, the idea of being a working writer had been pretty well beaten out of me,” Dani says. As a college freshman, she discovered she hated her chosen major—mortuary science—and went on to get a B.A. in English before going to law school (“The same naysayers who talked me out of being a professional writer convinced me there were no jobs to be had with a Ph.D. in English, either”). All the while, she suffered from the same inexplicable sense of being “crazy, broken, worthless, fucked up.” Working in insurance defense left her physically and mentally ill; she burned out after a year.

It wasn’t until 2009, when Dani was 26, that she finally got the answers she’d been seeking as a kid reading her dad’s psychology textbooks. After burning out at the law firm, she visited a psychiatrist. In just a few hours, she was diagnosed with autism.

“In hindsight, I already knew that I was autistic: I’d been dating an autistic man for about six years, and I’d done enough reading that I could see myself in the literature,” Dani says. “The diagnosis came as a massive relief to me. Autism is called ‘pervasive’ for a reason: it affects every thought, every perception, every process. It says a lot about how sick I was at the time, physically and mentally, that I needed a psychiatrist to say the word before I realized that I’d kind of already figured that one out.”

All through her childhood, Dani had assumed she’d grow out of being different: “That I’d wake up one morning and I’d just understand what was going on socially, lights and noises and textures wouldn’t hurt, and my body would do what I wanted it to do whenever I wanted it,” she says. “It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ it, and it wasn’t my fault that I couldn’t.”

Not everyone was as relieved by the diagnosis as Dani was, though. “My mother’s response to the news was to say, ‘Do you think I did this to you?’” Dani remembers. “I confess that I laughed at her – by then, my dad and I had already decided I got it from him. (He has not gotten a diagnosis because he doesn’t see the point.)”

It wasn’t until my diagnosis that I realized that I wasn’t going to ‘grow out of’ [autism], and it wasn’t my fault that I couldn’t.

Later, Dani made the painful discovery that she’d been evaluated by a psychiatrist as a two-year-old, because her dad and babysitter had seen early signs of atypical processing—but her mother had buried that information during a rocky divorce from her father. “My mother still hasn’t accepted my diagnosis,” Dani says, “and that drove a wedge between us I doubt she’ll ever be able to mend. Because that diagnosis saved my life, and to hear her continue to treat it and me as a tragedy is heartbreaking.”

Ryskamp edits the Spoon Knife series of anthologies for Autonomous Press.

The diagnosis saved Dani’s life, in part, by paving the way for her transition from a soul-deadening insurance job to pursuing her childhood dream of being a writer. “The most valuable part of being autistic, for me, is that it’s given me an understanding and command of language that I’ve never seen in anyone who wasn’t neurodivergent in some way,” Dani says. “I wouldn’t be as good at what I do, or enjoy it as much, without that ability.”

She immediately enrolled in an M.A. in English at the University of Michigan. There, she met Athena Michaels-Dillon, the Production Coordinator of Autonomous Press, an independent publisher with the tagline “Weird Books for Weird People”: In other words, books about neurodivergence, queerness, and the various ways they can intersect. Titles include The ABCs of Autism Acceptance and The Real Experts: Readings for Parents of Autistic Children.

Autonomous Press seeks to foster better understandings of autism and other forms of neurodivergence, and “to help neurodivergent people find community and an outlet for expression—to continue to establish our voices as real human voices worth listening to, by putting them in print,” Dani says. Because when it comes to societal approaches to neurodivergence, “pretty much everything urgently needs to change. Autistic and neurodivergent people are still searching for crumbs when it comes to basic rights.”

To put things in perspective, when Dani was born, the Americans With Disabilities Act (ADA) and Individuals With Disabilities Education Act (IDEA) didn’t exist. “We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth,” Dani says. “The mere fact of a mental or emotional health diagnosis is enough to jeopardize many people’s jobs, their right to raise their own children, their access to education, and their right to live independently.”

We’ve gotten only marginally closer to accepting the idea that disabled people have a right to exist in public, even if the laws meant to familiarize us with that idea have no real teeth…

In Autonomous Press and its main imprint, NeuroQueer Books, Dani found a group of likeminded people—the publisher’s partnership is currently all autistic—as well as a job that allowed her to use her legal expertise, writing skills, and lived experience as an autistic woman in a world built for neurotypical brains. Now, Dani is the resident attorney at Autonomous Press; her job is about about one-third lawyering and two-thirds editing. She’s co-edited NeuroQueer’s Spoon Knife series, an annual anthology of writing by neurodivergent authors; has a chapter in the upcoming NeuroQueer Handbook; and is currently working with veteran autistic activist Kassiane Sibley to turn her long-running blog into a book.

Dani blogs herself, passionately and prolifically, under the moniker “The Autistic Academic,” about everything from “Emotional Labor, Gender, and the Erasure of Autistic Women” to “The Autistic Adult’s Guide to Getting Hired.” Her work fiercely champions disability rights and debunks insidious myths about autism. Misunderstandings abound, of course; in Dani’s experience, the most common is the notion “that autistic people are somehow tragically unreachable or tragically deprived of the joys of a ‘normal’ human life – that we’re locked in, that we can’t understand other people’s reasoning or emotions, that we have no real feelings about anything around us,” she says. “I have yet to meet a single autistic person who actually experiences any of those things.”

Another pervasive misunderstanding is that autistic people can be categorized as either “high-functioning” or “low-functioning”—reductive terms that Dani finds unhelpful and insensitive. “‘High-functioning,’ of course, is most often taken to mean ‘almost a normal person,’ while ‘low-functioning’ often appears as a synonym for ‘burden’ or ‘tragedy case,’” she says. “Yet every autistic person I know varies wildly in their ‘functioning’ in various areas, even from day to day.  Some of us, myself included, have been described as both high-and low-functioning, sometimes by the same doctor in the same document.”

Autism is a state of constant flux.

Dani, for example, has three college degrees, but she can’t live alone because the steps involved in making food are too difficult for her to follow unassisted. She and husband spend time working out my scripts for various events and tasks before she does them. “Autism is a state of constant flux,” she says. “Describing our personal support needs is far more useful that dismissing us as ‘high-functioning’ or ‘low-functioning.’”

A sci-fi themed selfie: Ryskamp posing in a Star Trek doctor’s uninform.

Later this year, Dani will publish her first science-fiction novel, Nantais. It’s set on a post-apocalyptic earth, all but destroyed by global warming and rapacious overconsumption. The rich have fled for Mars or the Kuiper Belt (on the other side of Neptune), while a few massive, corrupt corporations control the earth’s remaining resources. Disaster strikes on the Jemison, a research vessel working for a corporation called Interstellar Science: The captain’s son has been kidnapped, the computer core is slowly freezing up, and their only hope is an alien woman who has to have her memory wiped if she wants to live.

“I’m wildly excited about it,” Dani says of Nantais. “This is a universe that has existed in my head in some form since about 1992, so I’m thrilled to be able to put it into print.” And so, some two decades after designing her dream cabin, Dani has showed up the naysayers: She works as a solitary writer, communicating with editors, publishers, and other writers remotely, just as she planned as a fifth-grader.



To Cope With Chronic Pain? Write Your Heart Out

"Illness takes a lot from you," says poet Sarah Wilson. "Writing is how I take the power back."

“Illness takes a lot from you,” says poet Sarah Wilson. “Writing is how I take the power back.”

Sarah Wilson is a 29-year-old writer, journalist, and poet from Nelson, New Zealand. She is also a sufferer of chronic pain. Diagnosed with Ankylosing Spondylitis several years ago, a chronic autoimmune disease of the skeleton, Sarah has since been forced to re-examine everything, and adapt to a new way of life and work.

Her condition has brought her to new understandings of her body and the way people with disabilities and chronic pain are perceived and treated in society. Consequently, she has become an outspoken activist for health, gender, and social welfare issues in her home country and abroad.

Folks sat down with Sarah to ask her about the role writing has had in her life, both as a way of coping with chronic pain, and as a mode for empowering the voiceless.


When did you start writing? What do you love about being a writer?

I’ve always been a writer. I wrote my first poem when I was about 8. That’s the first one I can recall, and it was about lions deciding to be vegetarians. I was interested in cruelty, and it was about subverting the natural order of things and making choices that benefit all people, or animals in the jungle. It rhymed, and had some terrible lines about lions on the plain deciding who to eat for dinner and choosing some grass instead.

I was lucky because I always knew what I wanted to do with my life. It wasn’t about choosing a career so much as knowing that I am a writer. It was just a given for me. It’s my purpose. I feel lucky that I have ability to communicate what is so often incommunicable. When someone responds to me and says “Oh my God, you’ve written how I feel,” I realize how much power words contain. They can be both a weapon, and a pillow.

I feel lucky that I have ability to communicate what is so often incommunicable.

I kept writing creatively for myself throughout school, and my poems were published here and there. I recall the first one I had published in a national magazine when I was about 14. Typically, it was about parents not listening [to their kids] (mine were mortified). My poetry from 14 to 22 was prolific: I have folders and folders of terrible angsty work, but it was a foundation for communicating important feelings – the real guts of human experience.  

I did a Bachelor of Communications majoring in journalism, with a minor in creative writing at Massey University in Wellington, New Zealand, and later I studied poetry at the International Institute of Modern Letters with award-winning poet Hinemoana Baker.

I started working as a journalist and then went into communications in the public service. Later I started my own communications and writing consultancy in Nelson, at the top of the South Island. It wasn’t long after that that I developed Ankylosing Spondylitis, a form of genetic inflammatory arthritis. It’s rare for women my age to have it, so writing has allowed me to connect with other women who do.


How does writing give you an avenue to deal with your illness?

Illness steals a lot from you. It isolates you and it really impacts your sense of agency and power. Writing is how I take the power back. Articulating my experience through poetry and prose allows me to process the experience, to validate it by revealing the hidden vulnerabilities, and to connect with and help others in similar situations.

Has your condition given you new or different opportunities?

I became outspoken about the health and welfare system in New Zealand. The country has a publicly funded health system that’s meant to be open to all, but it’s far from perfect. I struggled to access health support and disability entitlements. Part of my response to this was to start a website, called At first it was anonymous and I tried to stay out of politics, but it became clear that health is a political issue, and being able to write well and articulate well was really key to affecting change. I needed to put my face and my name to my words.

I was overwhelmed by the response. I was flooded with emails and letters from others struggling with the same issues. My writing reached all the way to Parliament and politicians and journalists began contacting me. Though I’d always been politically minded I fell into an activist role via the website, Facebook, and Twitter. My regional newspaper, The Nelson Mail, offered me a column which I used to articulate the struggles people like me face on a daily basis in trying to live with pain and access what we’re entitled to.

How has social media figured in your work as a health activist?

It gave me a much wider reach. I can’t necessarily leave the house that much, but social media gave me the platform I needed to share my writing and connect with people. We’re quite lucky in New Zealand to be a country of only four million people, as a lot of our politicians are on social media and they do use it personally (i.e. they run their own accounts). You can connect with them through it and they’ll challenge what they see as unfairness in Parliament. Several of them reached out to me because of what was being said by others on Twitter. The response to my writing on social media was so massive that the challenge was to utilize that in an effective way while still managing my own health.

It enabled me to meet others with chronic pain and collect our voices, which are usually so isolated, into a single force.

What sort of things do you feel people misunderstand about chronic illness and chronic pain?

There’s a deep-seated narrative around relentlessly seeking resolution, and that’s really tiring on its own, even if you don’t have the fatigue and pain that I have. People tend to see chronic pain and illness and disability as this conflict within your body – you are fighting this thing. But often to learn to live with your disability in healthy and productive ways, you have to find a degree of acceptance. It’s not about giving in. It’s saying: “Okay, things are changed. How do I work with that?” For me, I had to accept that my working life as a writer is different now. I can’t work 10 hours a day in an office chair like I used to. I break up my time a lot, I created different physical environments to make me more comfortable. But that doesn’t mean I’m less productive. I just work with my pain instead of using all of my limited energy trying every diet or exercise the internet offers up to fight it.

Does writing feature strongly in your future?

Yes. Writing is all I want to do, and it’s one of the ways I deal with being ill. I’ve just published a chapbook of poetry about illness and identity, and I’m working on a collection of short stories in a similar vein. I’m also chipping away at a novel in which the protagonist hasAnkylosing Spondylitis. I think disability is both underrepresented and misrepresented in popular media, so bringing that into my creative work is another aspect of activism. And it makes me feel happy and fulfilled being able to use my writing this way.

Chronic pain is so prevalent: 11 per cent of Americans suffer from it, according to the National Institutes of Health, which is nearly the population of California. And it’s so often invisible. Writing gives a voice to all of us who live with it.