When I Decided to Start Sharing My IBS Story
Last updated: February 2023
Sharing any personal information can be anxiety-inducing for some people. IrritableBowelSyndrome.net attempts to make it easier for those who choose to share. Almost all of our articles published to our community are written by and for people living with IBS, whether it’s IBS-D, IBS-C, or a combination of both.
At the end of the day, receiving validation and support for our experiences really does have an impact on our outlook.
We asked the patient leaders, “How did you eventually get out of your comfort zone to share your experiences with IBS? What gave you the push to openly talk about your condition?” Here is what was shared.
My experiences might help others
“I was reminded that my experiences may help others who are learning to cope with irritable bowel syndrome. Despite my hesitation, I opened up about my diagnosis and living with IBS. Now I find that the more I speak about it, the easier it is to talk about.”
“Part of it is age: I've grown less worried over the years about what people think about me. I know and own who I am. I realized that by sharing my experiences with IBS, I could help people who are at an earlier point on the same path. Plus, there is more mainstream knowledge about gut health today, making IBS easier for non-sufferers to understand and us to talk about.”
“I've always been able to share my IBS experiences with people I'm close to, but it wasn't until I learned about the IrritableBowelSyndrome.net site that I decided to "go public" with my experiences.”
Having my voice heard
“I realized I needed to talk about it in order to get my health issues taken seriously and to lobby for accommodations. I also wanted to break down barriers and fight against the stigma of talking about our bodies and our health. I am still rather discrete though in the way I talk about these issues.”
“When I was in school I had to learn to voice my concerns because there would be several incidents wherein I needed to excuse myself from class and could not always necessarily wait to be given permission. I was always embarrassed to discuss it but, alas, I had to in order to survive. Eventually, with a lot of reflection and efforts to build my self-esteem and confidence, I learned that I not only needed to be more open but that I had the RIGHT to share my experiences, no matter how ‘inappropriate.’”
Realizing I am not alone
“The push I had to speak about IBS was when I had lunch with a close friend who has chronic pain and what later I found out to be IBS. Because we were friends and had chronic pain in common, we understood the embarrassing parts that come along with living with chronic pain. Having someone that truly understands what you are going through will change your life forever.”
“At one point, when I could no longer pretend that everything was okay in front of my friends, I mentioned that I had a digestive illness. And I was surprised to see how many people told me that they had it, too, or at least knew someone else who did! This helped me realize that the more I talk about things like that, the less alone and “weird” I will feel.”
“I didn’t really feel comfortable talking about IBS until I had become extremely well versed in promoting awareness and patient advocacy in other areas. I had to overcome my fear of talking about health and personal health experiences in general before I could even begin to touch such a personal subject. Once I started talking about it with some of my closest female friends and found out that several of them also lived with IBS, it became that much easier.”
Which of the following symptoms of IBS do you experience most frequently?