How I Became An IBS Advocate
Advocacy does not always come naturally for everybody living with a chronic condition. What comes to mind when you think of being an advocate? Does it mean making calls to Congress for legislation change? Does it mean leading grassroots events in your area? Could it be as simple as sharing your story online so that others feel less alone?
We asked the advocates, “How did you become an advocate for IBS?” Here is what was shared.
Friends encouraged me
“A dear friend of mine gave me a gentle nudge to share my story. I am very grateful for that. Being an advocate for IBS has greatly improved my ability to openly discuss my needs."
"My advocacy for IBS came through my advocacy as an endo patient since one inevitably impacts and is likely the catalyst/contributing factor for the other. So I started discussing it more and more in the context of endo and other reproductive health issues and eventually more as its own issue separate from endometriosis. Though I had written about and referred to my IBS as a side-note or one of several health issues in articles of my previously, I did not focus on it as a topic till Health Union.”
“Having someone to talk to in person helped to push me to write about IBS publicly. The same friend I had lunch with was and still is an advocate for IBS and MS. She recommended me to the website and I was able to send in samples of my writing for review. If it wasn't for her, I would not have found this community that I call home.”
“I have a friend who works for Health Union who didn't even know I had IBS, despite knowing each other for more than a decade! I had always kept it to myself. But when she presented the opportunity for me to advocate, I knew the time was right.”
Blogging led me to IBS advocacy
“I first started to write about IBS on my personal blog, and I found that people seemed to relate to the struggles I was going through. My main motivation was knowing that I could touch on topics that aren’t talked about and maybe help someone feel less alone with their IBS. The Health Union IBS community took this a step further for me: it helped me see (and contribute to the image) that IBS is something a lot of people struggle with, and that it’s okay.”
I was already a migraine advocate
I started advocating for IBS in connection with my work as a migraine advocate and an autoimmune advocate. The gut is very closely linked to the brain and the immune system. So often, IBS is comorbid with migraine disease and autoimmune diseases like RA and lupus. And that’s how I started talking about IBS, as a comorbid condition.
Opening up helped
"Ultimately, opening up about my IBS eventually led to me talking about other important concerns such as dealing with my fibromyalgia, anxiety, and depression. IBS was like a gateway drug to a healthier outlook on life, health, and happiness! Thus, once I realized the power and freedom in sharing one’s health “secrets” it was like an unstoppable force; I don’t even think twice about discussing “personal” health concerns anymore."
"I realized that sharing my own experiences not only helped make my life easier but also helped others to do the same. Propriety no longer matters."
Do you consider yourself an advocate? Consider sharing your story to get started!
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to IBS?