Writing about AS has shown me the power of personal stories

In March 2024, I published my first article about ankylosing spondylitis (AS), focused on the power of online communities, for the Spondylitis Association of America.

I’ve always loved to write, but initially, I struggled to write about my illness. For one, I was hesitant to share some of the challenges of being chronically ill. Because my disease is often invisible, only my partner witnessed many of my symptoms, after hearing me complain about every ache, creak, and sleepless night. I hid my pain from everyone else.

If I started to document my disease, would that change how my friends and family saw me? What would readers think? I didn’t want people to feel sorry for me, but I also wanted to make sense of my experience the best way I knew how, which had always been through writing.

Also, a part of me felt that recording my experiences would lend them a sense of permanence. Would writing stories about medical gaslighting, strange symptoms, and medication mishaps mean I’d never get better? I thought that maybe if I didn’t write about it, this would all end up being a fleeting moment of sickness in my life.

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Despite these fears, I decided to give it a try. To my delight, I found that turning my story into a digestible, readable piece helped me to not only make sense of arthritis but also to share pieces of my experience that I’d found difficult to talk about.

Writing also helped me connect with the spondylitis community and other people with rheumatological diseases. While not everyone may have shared my exact affliction, a number of people reached out to me, saying they’d found moments in my writing relatable. I also realized that writing about my illness — something that often felt out of my control — helped me feel a sense of ownership over my body.

Following my compass

This is my last column for Ankylosing Spondylitis News. As I reflect on my time here, I am filled with gratitude for the opportunity to share pieces of my journey with you.

I’m not leaving because I am “cured” or even in remission. (I write this as I contemplate buying a massager for my cervical spine. If you know of any good ones, please share in the comments below.) I’m leaving because my compass has pointed me toward a new writing project, one I hope will allow me to continue to make sense of my family’s and my journey with rare diseases.

To those of you who have read my column — whether you’re living with AS, know someone with AS, or are simply showing up to educate yourself — thank you. Even if our narratives don’t look the same, I hope you were able to find pieces of your story in mine. To those of you living with AS, I wish you many good days, strength for the bad ones, and the courage to start writing about your own experience.

In the throes of illness, it was not a biologic, acupuncture, or even a low-starch diet that helped me through the night. Rather, it was reading about other people’s challenges that reminded me I wasn’t alone. I believe that when it comes to living with diseases like AS, personal stories are just as important as any medication, doctor’s visit, or cure.

Note: Ankylosing Spondylitis News 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 provider 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 Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.