Writing through chronic illness

a chat with writer and artist Nicole Chilton

author photo by Designing Indie; book cover courtesy Hachette Book Group

Happy Tuesday from me and our cat, also named Tuesday, who is currently pancaked out on my lap with her nose smushed into my crotch. She is the only creature on Earth who is allowed to assume this position.

Today, a special treat:

I’ve spent the last month conducting interviews with creative folks who approach their work from different perspectives. By “different perspectives,” I mostly mean artists who work outside of the ideal circumstances that propelled Wordsworth, Nabokov, Tolstoy, Twain and Thoreau to stardom. (Read: No one to cook, clean, transcribe, facilitate childcare and pay the bills for us.)

I’m so excited to share the first Q&A, which is with an artist and writer I deeply admire: Nicole Chilton, who’s based in my hometown of Springfield, Missouri. She writes the Woo Your Creativity newsletter, which offers playful and gentle prompts for connecting with your creativity in trying times. She’s also the author of How Dreams Speak: An Interactive Journey intoYour Subconscious, and this year, she released the accompanying dream symbols card deck. (I leave both in my guest room to delight visitors.)

In addition to the book, Nicole has shown her paintings at multiple venues across Springfield, including the Sky Gallery at the Springfield-Branson National Airport, Obelisk Home, and the Creamery Arts Center. She has also taught art journaling workshops at the Springfield Art Museum and with the Springfield-Greene County Library system. She lives with her husband Dan, her two children Jasper and Maggie, and two golden retrievers—Winnie and Bowser.

Nicole was also diagnosed with multiple sclerosis in 2022 after multiple occurrences of optic neuritis, which is what happens when the immune system attacks the coating of the optic nerve. Below, you’ll see our Q&A focusing on chronic illness, creativity, office space, and all the weird stuff in between. Nicole is simply as cool as it gets, and I’m so pleased to share our interview.

Q&A: Nicole Chilton on creative living and chronic illness

How does your MS diagnosis impact your creative practice?

Nicole Chilton: Getting an MS diagnosis was actually a relief because I have been sick my entire life (starting at age 8) with chronic migraines, thyroid autoimmune disease, anxiety, depression, and ongoing vision loss. 

It requires a lot of ongoing doctor’s appointments and maintenance (I'm on immunosuppressant therapy), but my mental load has lightened significantly. With autoimmunes, one of the biggest triggers to relapsing is stress. So I've had to really scale back on all commitments, which can be personally devastating sometimes. I love staying busy and working on all the things. 

You wrote a whole-ass book! How did you make that happen juggling kids, day job, and your own physical health?

N.C.: Being an author and artist has been a lifelong goal! I had no idea that writing my first book would be one of the most challenging aspects of my life! I definitely think it triggered my biggest flare-up (permanent vision loss in my right eye). My first draft, along with 100 illustrations, was due in May 2020. Like so many, I was also dealing with Covid lockdown, social unrest, working a full-time job from home, and homeschooling a third and fifth grader. There was absolutely no break between these major life-altering tasks.

So at that time, I had no structure or balance, which also affected my health even more. I learned what I really needed was a private space to create, so in 2021, with the last of my book advance, I signed a lease for a small office space. It was the best decision for my creative work.

What role does self-care play in your creative practice?

N.C.: One thing I've learned is that there is a fine line between self-care and coping mechanisms. Self-care is definitely more proactive and intentional. During COVID and book-writing deadlines, I thought my self-care was staying up late, eating potato chips with french onion dip for every meal and drinking a daily bottle of wine. That was coping, and highly destructive long-term. Doing gratitude journaling, avoiding the news, and putting on blinders to finish my commitments were more self-care practices, even though it didn't feel like it at the time.

Now that I'm dealing with a fairly volatile chronic illness and a path toward wellness, I've had to add a few extra components: talk therapy, an understanding doctor and nurse team (it took me a few tries to find one who didn't immediately brush off my symptoms as anxiety), and a house-cleaning service.

I understand these are also luxuries and am beyond grateful that I have access to them. (Full transparency, my creative work in no way can cover these costs—therapy is out of pocket, my husband's work insurance covers neurologist, and house cleaner does come from my creative income, but I can only afford them monthly.)

Coming up next, at the urging of my spouse (who has been extremely supportive our entire relationship), I'm adding a personal trainer to the mix, because MS can really mess with muscle strength and I want to end my 40s stronger than I started them. 

What's your work schedule like? Do you keep the same hours every day, every season?

N.C.: I know the eat-the-frog-first method is supposed to help, where you work on the harder tasks first. But I struggle with that. After dropping kids off to school (9am), I usually do a few chores & errands, then go to my studio from 11-3:45 pm. I allow my first hour or two to be personal fulfillment (writing newsletters, studying new skills, working on digital art, the marketing side of a creative life, etc), then at 1pm it's a hard stop and I HAVE to work on paid freelance commitments. I know I have another hard stop at 3:45, so working on that deadline really helps me get it done. I am one of the world's worst procrastinators (ha!), and I'm sure my editors sweat bullets on deadline day. But I never miss them!

Once the kids are home, my life is fairly typical for a parent of two teens. Extracurriculars, dinners on the go, family TV time. Because my energy levels are fairly low, I'm typically in bed by 8pm. I rarely get creative work done after 4pm. So really, my window is only about 11am to 1pm every day. However, reading, watching movies, scrolling Instagram, napping (dreams!)—all of those things that I do while I rest are also sources of inspiration for me. 

Any practical tips for folks juggling chronic illness and creativity?

N.C.: I can't speak for everyone dealing with chronic illness, but pre-diagnosis, I would feel SO guilty if I was just sitting down on the couch or napping during the day. Most chronic illnesses are also invisible and unpredictable, so it's extremely difficult for others to really understand the fatigue or pain we're coping with.

In my case, one of my symptoms is Uthoff's Phenomenon, where if my body temperature rises, my neurological function and vision decline. The smallest exertion can lead to exhaustion (seriously, vacuuming knocks me out, and we have two golden retrievers, so I have to do it daily), so I have to pace myself carefully. We'll see how personal training goes...

So while I would love to spend my entire day writing and painting, I know that's unrealistic. And oftentimes, I don't have it in me to go full force when I do have the opportunity. Tools like a Skillshare subscription have been amazing because it gives me access to art and writing classes that I can do at my own pace without pressure. Also finding a small, supportive creative group to be cheerleaders through good and bad times. (My writing group, The Split Nibs, have been texting each other daily since 2016, I think!)

I've also found absorbing published works by other people with similar health issues has been inspiring and comforting. Selma Blair's memoir Mean Baby was the one where I was like, hey! I'm not alone!

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many, many thanks to Nicole for sharing—check out her newsletter if you know what’s good for you!

Next week, we’ll talk about parenting with McSweeney’s editor Lucy Huber.

wishing you a gentle week and a highly invasive cat,

Lil