The Therapeutic Effects of Sharing Your AxSpA Story
When I was first diagnosed with ankylosing spondylitis, a form of axial spondyloarthritis, I wasn’t sure how to talk about my experience. Honestly, I didn’t want to think about what I was going through in any useful or reflective way. Instead, my thoughts were consumed with a potential future that I had not anticipated--one with a lifelong chronic illness.
But now that I’ve had time to digest, to make peace with my new reality, and to better understand my disease, I see the benefits of sharing my story. Even if sharing is uncomfortable sometimes, it can also be therapeutic.
The power of narratives
Storytelling itself is more than a simple form of entertainment. Stories are often useful. We use anecdotes to teach lessons in the classroom, short tales to recount a significant sequence of events, or fairy tales to inspire bravery, wonder or sometimes fear.
But narratives can be useful in an introspective way as well. Personal narratives offer an opportunity to “distance oneself” from situations, circumstances or events “in order to gain understanding, establish meaning, develop greater self-knowledge and decrease emotional distress.”1
No story of AxSpA will help me create meaning out of this disease. There’s no meaningful answer to the question "why me," but constructing narratives based on my experience with AxSpA does help me cope with the "what" of the disease. It helps me deal with my daily circumstances, gain perspective, and work through the emotional journey.
Sharing within a community
Sharing our stories also has added benefits. Sure sometimes our stories fall on deaf ears. I have read countless comments on social media from people with AxSpA who express grief because no one understands the extent of this disease--the pain, the fatigue, and the emotional drain of it all. I have read nearly as many complaints about how no one listens.
For this and other reasons, sometimes life with a chronic illness is isolating and lonely. But sharing (and reading) stories within a like-minded (or similarly affected) community can relieve some of that loneliness.
This is especially true for me. I don’t know a single person in my personal life who also has AxSpA, despite the fact that AxSpA has a genetic component. Since I don’t know anyone battling this illness, I don’t have anyone to talk to about their experience and their symptoms.
Thankfully I found online communities like this one to participate in. I found and still do find a sense of understanding and comfort in reading about my experiences in someone else’s words. Don’t get me wrong--I would never wish this illness on anyone. But reading about a like-experience helps penetrate the fog of loneliness.
Not only that, but it’s difficult to understand what life with AxSpA feels like from a physician. While a rheumatologist can confirm symptoms and recommend treatments, that rheumatologist cannot describe in any real sense the day-to-day experience with this thing unless she too battles it.
So there’s two different buckets of information at play here--the clinical information from doctors and the lived experience of other AxSpA warriors. While one operates with an eye toward treatment, the other provides much-needed mental and emotional support to get through the week.
Claiming your story
Lastly, the telling of your story, while an act of courage, is also an assertion of control. Putting pen to paper and telling your story is a way to claim that story as yours. It comes with the possibility of shifting the power dynamic away from the disease and toward you, the storyteller. While it may not make the day-to-day struggle any easier, claiming your story can be liberating.
I hope you find some support in this community as well, and some value in the stories being shared here. And if you do, I implore you to share your story and engage with what’s being shared.
We want to hear your voice. We want to know how you’re doing.
Can you tell when a flare is coming?