Shouting From My Laptop: Using My Voice in the IBD and Rare Disease Communities

When I returned to teaching full time after my liver transplant, I quickly discovered that the job caused me more frustration than joy. Life is too short and precious to work for the sole purpose of receiving a paycheck and benefits.

On the second day of the new semester, I resigned. It wasn’t an easy decision. I had never stepped away from a job without a plan. I felt completely helpless and yet liberated at the same time.

I hated placing the burden of paying for my health insurance and medical bills entirely on my husband, but he reassured me that we would get by. With his blessing, I took a giant leap of faith and went from freelancing as a side gig to making it my full-time career. Two months later, I landed my first contract writing job with IBD News Today.

Finding my voice

I was about 5 years old when I wrote my first story. It was about a duck and her babies. If I remember correctly, the “plot” was mainly a list of the ducklings’ names. I then ventured into poetry, writing and illustrating a booklet of poems about rainbows for my parents. Three years later, after spending the summer of 1983 reading S.E. Hinton’s “The Outsiders” over and over again, I knew I wanted to be a writer.

Not wanting to live as an impoverished author, I earned a degree in advertising and began my career as a copywriter. In between selling financial and real estate services, I wrote short stories for friends and Advent and Easter devotionals for my church. I even self-published a couple of novels that I broke even on.

When I saw the opening for a columnist with IBD News Today, I jumped at the opportunity. I had become more active in advocating for healthcare and health-related issues the year leading up to my transplant. Writing for IBD News Today combined my love of writing with educating others about my two rare autoimmune diseases, primary sclerosing cholangitis (PSC) and Crohn’s.

Learning as I go

My column wasn’t just a personal narrative. To tell my story, I learned more about my diseases over the past two years than I had the past two decades living with chronic illness. The bits and pieces of information my doctors had told me over time suddenly came together as I began to understand the bigger picture. Through the research I performed for my columns, I became a better advocate for, and an equal partner in, my treatment.

Each week, I experienced personal growth. As an introvert, I usually bottle up my feelings, leaving issues unresolved. Putting my thoughts and emotions into words gave me a healthy outlet. Reflections about the past gave me insight into what I want for my future, and ending each column on a positive note forced me to reassess my priorities.

I now have a clearer vision of what I want out of my career and an employer or client. At past jobs, I felt like a failure or an unreliable employee if I needed to take time off to tend to my health. Because BioNews, the parent company of this website, prioritizes self-care over work, I realized that I shouldn’t, and never have to, settle for less.

When one door closes

Sadly, my time as a columnist for IBD News Today and with the BioNews family is coming to an end. For now, this will be my last “Intestinal Fortitude.” However, this may not be the last time my readers will hear from me.

My role as an ambassador for the Color of Crohn’s and Chronic Illness (COCCI) is expanding. The founder has invited me to collaborate with another member to launch the nonprofit’s blog. We hope to start publishing in the next month or so.

Through my involvement with COCCI, I was able to connect with Elly Health. The company describes its iPhone app as “an empathetic audio companion.” Sessions boost the mental, spiritual, emotional, and physical health of chronic disease patients. This week, I’ll submit my first five sessions as a contributing writer. Users will soon be able to listen to my anecdotes about motivation, exercise, sleep, nutrition, self-care, and more.

I haven’t decided whether I’ll continue “Intestinal Fortitude” on my own or expand my story to emphasize PSC and my liver transplant journey. I also have outlines for a couple of novels that I’ve put on the back burner to focus on paying projects. Readers can follow my COCCI ambassador Facebook page for announcements and updates.

My options are endless. However, none of these opportunities would be possible without the platform IBD News Today and BioNews gave me. “Intestinal Fortitude” helped me find my voice for advocacy and education. Now, I can no longer remain quiet.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to IBD.

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