Finding an expressive path can help you come to terms with chronic illness and forge an identity in the face of pain.
By Ashley Boynes-Shuck
I could easily write an article about what it means to be diagnosed with rheumatoid arthritis at age 10, or one about having brain surgery six months before my wedding day in 2011. I could talk about the countless times I’ve been mocked for limping, or about the several dozen diagnoses I’ve received since childhood—despite being only in my early thirties now.
But I won’t.
What I will write about is, well…writing. Writing has helped me cope with the many diagnoses and the life-altering, sometimes destructive detours I’ve taken in my lifetime. It has served as a powerful tool and source of support, always there for me, through the ups and downs of health crises. Writing has been a safe haven and a keystone, helping guide and guard me, shaping me into the woman I am today.
An Early Passion Becomes a Lifeline
I found my love for writing around the time that autoimmune illness found me. In second grade I was identified as gifted by my elementary school teachers. I had already exhibited an advanced reading level and a love for the written word. (I played “librarian” as often as I played “house” or “dress-up” in those formative years.) Luckily, my Gifted and Talented Education (GATE) teacher recognized my passion and allowed me to explore my typing skills on an old-school Apple Macintosh computer, and I began writing short stories nearly as soon as I learned to type (two that come to mind are “Bitsy, the Lotsa’-Legged Caterpillar” and “A Day with Hannie”). It was in that same second-grade year, as I explored writing and felt the joy it brought me, that a friendly shove sent me tumbling down a flight of stairs in my Communion dress. I believe it was that incident that triggered my apparently dormant juvenile rheumatoid arthritis to come out of hiding.
A few years and one juvenile arthritis diagnosis later, I was devastated when my rheumatologist advised me to give up sports. As an avid softball and basketball player and a cheerleader (who was a kickball and Capture-the-Flag pro and a wannabe skateboarder on the weekends), my identity was elaborately intertwined with my athletic ability and active lifestyle. While I could have wallowed—and certainly did shed some tears—I instead decided to become more involved in other extracurricular activities.
Finding My Way
I’d be lying if I said that it was easy to adapt and find my place within the parameters my diagnosis delivered. But writing helped me forge a path.
As a kid and a teenager, I never quite felt like I fit in anywhere besides the GATE classroom. I had a deep yearning to fit in with the cool kids; I strove for popularity as I did for academic success, for better or for worse.
In hindsight I wish I hadn’t been so focused on fitting in. The truth is that I always was, and always will be, different: I’m quirky; I’m a little weird; I’m an odd mix of introverted and extroverted that makes me quite awkward at times. I’m also chronically ill and pretty much physically disabled. But the difference between 32-year-old me and high-school me is that I embrace these differences, whether they are due to quirkiness or sickness.
In high school my writing centered me, helping me create an identity beyond illness. I found a sweet spot on the yearbook and newspaper staffs. My high school years, despite my illnesses and being a nerd at heart, were still filled with enough fun and enough drama to keep it interesting.
But they weren’t easy. Walking with a limp, having morning joint stiffness, relying on tons of medications, and being forced to give up sports were not things that the average teen could relate to. Through reading and writing, though, I found myself.
By the time I finished high school, I had completed an apprenticeship in journalistic layout and design, as well as independent studies in journalism and fashion design, and was already freelancing for a local magazine on top of my work with the school newspaper and yearbook.
Then came college. No longer was writing a source of fun; it became a source of stress. Writing meant homework. Writing meant exams. Writing meant reports and critiques and reading out loud. I’d chosen to be an English major, so it was part of the deal. But I was no longer using writing as a creative or emotional outlet. It was no longer cathartic, and I was lost as I began to deal with even more grueling health issues.
Revising the Role of Writing in My Life
Forced to take a semester-long medical leave from college due to Bell’s palsy and other pressing health concerns, I had time to reflect. During this time I got a puppy, and I read a lot. I also began to journal and write song lyrics. I realized that writing was just a part of who I was, just as my health problems were.
When I went back to college, I began to focus more on my writing career and my health and less on the social scene. It cost me some friends, but it was what I had to do to get through what was a physically and emotionally tumultuous time in my life.
Several failed relationships and lost friendships later, I graduated from college and met the love of my life. I’ve been handed many a new diagnosis since then, but, in addition to my family and friends, writing has remained my essential solace and a great source of expression and comfort.
Writing on the Social Stage
In the years after my college graduation, as I began my professional life, I started blogging about my health experiences as Arthritis Ashley and for my job at the Arthritis Foundation. I found a home on social media as I interacted with my readers and commiserated with others who were dealing with a health situation similar to my own. For the first time in my life, I wasn’t alone in my suffering. My love of writing and social media blossomed into a beautiful, cathartic, supportive enigma: a community of like-minded patients who aspired to a more positive life despite illness.
It was because of the Arthritis Ashley community that I began to feel comfortable sharing my health story on a broader scale: I spoke to Congress. I tweeted with Oprah. I volunteered for health causes. I talked to anyone who would listen. I secured a freelancing job as a healthline.com arthritis news reporter, and I wrote and published two health memoirs (a humorous health memoir, Sick Idiot, and a companion book, Chronically Positive, which comprised my most popular and best-received Arthritis Ashley blog posts).
To be able to share my story through the written word and to help others in a similar situation was a dream come true.
Writing a New Chapter
But then, as my identity as a blogger and author of health content flourished, I began to feel conflicted. I realized that I didn’t want “sick girl” to be my primary identity in life. I knew that I was more than just Arthritis Ashley.
And so I wrote my first novel, To Exist, feeling again the excitement and fulfillment of stretching my writing wings. As I broadened my objectives with fiction, my world expanded in other ways: I created an entertainment blog, I inserted myself into the local fashion and music scenes, and I became an advocate for animals. I decided to take up astronomy, to try to learn to play the ukulele, and to travel with my husband as much as possible. I started a second work of fiction. I volunteered. I said yes.
Coming to Terms with My Identity through Writing
As I say yes to the life around me, not letting my expanding list of diagnoses hold me back from the beauty the world has to offer, I accept and embrace my sick self. But I don’t let my sick self consume or define me.
My writing has continued to help me come to terms with my identity, as I find a place for both my public persona as a health advocate and author and my fiction and creative writing and other interests.
The singer Beyoncé is said to have an alter ego when she goes onstage: the shy country girl Beyoncé Giselle Knowles disappears and “Sasha Fierce” emerges. I guess I have something of an alter ego, too. Arthritis Ashley is a persona—a persona I love. She is part of me. But Ashley Boynes- Shuck is more than Arthritis Ashley. As I once wrote, “My sickness is one star in my galaxy, not my whole universe”—a concept I still wholeheartedly embrace.
While I have struggled at times with the dichotomy of my life—as Arthritis Ashley and just plain Ashley vie for my time and attention—I’ve come to the understanding that I can embrace all pieces of my identity: I am a health writer and patient advocate, I am a published fiction author, I am a wife, I am a daughter, I am a friend. I am not just one thing, nor is Beyoncé, nor are you.
We are all made up of several parts that come together to make a whole. While my whole body is sick, my whole person is not. My soul is not defined by my illness; my illness isn’t my being—it isn’t my identity nor who I am at the core. Learning to cope with these realities and to explore related issues through my writing has allowed me to embrace my identity—in all its variations.
Write Your Own Path
As a certified health coach and an arthritis reporter who reads boatloads of rheumatology research day after day, I could offer a lot of advice about how to manage autoimmune illness—ranging from holistic approaches to pharmaceutical therapies and beyond—but I won’t do that. What I will say is that if you are suffering from any affliction, whether physical or mental, I advise you to find an outlet to express yourself—and use it.
Maybe your outlet, like mine, is writing. But maybe it’s gardening, painting, crochet, exercise, meditation, baking, or something else entirely that makes your heart sing. Find your outlet. Make music; make tears. Pour your blood, sweat, and soul into it.
Find out who you are outside of your illness—and be that person. Your mind, body, and spirit will thank you—you have my (written) word.
Learn more about Ashley at arthritisashley.com