How My IBD Content Has Changed Over Time
Last updated: May 2023
I first started talking openly about having inflammatory bowel disease in 2014. I had pouchitis, and I was sick of people not getting that I was ill, because I looked well enough.
That first Facebook awareness post, born out of anger and frustration, had an unexpected response. The post was set to public, and people I didn't even know were liking, sharing, and commenting on it – 1.3k likes and 1.5k shares. It blew my mind. I was just venting, really.
My IBD advocacy started on social media
I was working in social media marketing, so I understood how all of the different platforms worked. I had been using Twitter to connect with other people who had ulcerative colitis and Crohn's disease, but I'd never ventured onto Facebook. I wasn't even using my real name on Twitter, I had set up an additional account to talk IBD.
After that post, I started thinking... Dare I step into the realm of awareness-raising? Was I brave enough to start talking about day-to-day life with IBD on social media... As me?!
Yes. Yes, I was. I wanted to fundraise, and I wanted to raise awareness. So I did. A community of people was building around me, so I created a Facebook support group. I started writing blogs. I began using my personal Twitter. I was on Pinterest, Tumblr, and LinkedIn. I even joined Instagram, eventually.
What's my advocacy purpose?
My poor health and multiple surgeries had made me feel like I was failing at life. Like I couldn't get where I wanted to be, and I didn't really have a purpose. All of that changed when I started supporting other people. Maybe this was my purpose? I had a thirst for knowledge about IBD. I wanted to understand as much as possible, so I read everything I could.
A few years in, I realised that my friends list had dwindled. Had people bored of me harping on about IBD? No matter. No loss to me. They weren't friends who I met up with in real life or anything. They were just people I knew from passing through – school, further education, jobs.
But then I started looking at who was actually engaging with me. That's when I realised, people who didn't have IBD, or who weren’t directly impacted by it, didn't want to be educated about it. They weren't engaging with my posts. They were probably scrolling right by them.
Giving support to people with UC and Crohn's
So, I shifted my focus. The people engaging with me were people who had Crohn's disease and ulcerative colitis. I didn't need to raise awareness to them. I simply needed to support them, so I started concentrating more on sharing resources, info, tips and tricks. I created a Facebook page and shifted my health stuff to that. That left my personal Facebook profile pretty much dead in the water.
One thing that is worth mentioning is another realisation I had later on. An important one. When someone on my friends list starts being investigated for IBD, they often message me. Or if they've just been diagnosed. I also have people message me if a friend of theirs is diagnosed or is being investigated, to see if they can put them in touch with me.
I'd thought my posts were falling on deaf ears when it came to non-IBD people, but they obviously weren't. People read them and took them in. They might not have been relevant to them at the time, but I am the person they think of when they need support. How cool is that?!
Continuing to spread IBD awareness
I started working in the IBD and ostomy space, as well as spending my free time in it. Working with healthcare companies and Pharma can be incredibly interesting.
I've finally come to realise that it all that matters. Awareness, sharing my journey, and the informative stuff, all has its place. Life feels a lot more right these days.
What has been the most helpful for managing IBD symptoms?