How I Build An Online Community Around Ulcerative Colitis — And How It Changed My Life

I have been living with Ulcerative Colitis, an autoimmune disease that affects the colon, for nearly 15 years now. However, I wasn’t always this open about sharing my experience with UC. In fact, I spent many years hiding this fact about myself and felt like I was alone in my struggle. It wasn’t until I started seeking out others with IBD that I leaned on the power of community to feel less alone.

How isolating IBD can feel/The loneliness I felt For the first few years of living with UC, I wanted to hide my disease under a rock and never let anyone see that part of me. At 19 years old, I wanted to fit in and be like everyone else; I felt the need to prove to myself that I could do everything “normal” people did. (Now–at 33 years old–I know there is no such thing as normal!) Behind my smiling facade, I was battling a crippling autoimmune disease and going in and out of the hospital. My IBD flares left me feeling stuck at home or in my dorm room due to the severe symptoms, like urgency, diarrhea, and abdominal pain. I was struggling to regain my health, all behind closed doors.

Why I began searching for connection.

The summer after my diagnosis, I was working at a summer camp when a staff leader asked if I would be willing to share my diagnosis story on camera, as a way of inspiring the campers. Reluctantly through tear-filled eyes, I told my story to hundreds of people. For the whole summer, at least one person came up to me afterward sharing their own personal experience with Crohn’s or Colitis. I couldn’t believe how many people could relate to what I was going through and how much it meant to them to hear they weren’t alone. Likewise, it left me speechless knowing there are others going through the same thing.

For the first time, I felt less alone. I had never met anyone else who lived with the same autoimmune disease as me. A spectacular mix of emotions washed over me and I knew that I had to start sharing my story and find more people who also had Crohn’s or Colitis.

How I built my community.

Building a community of likeminded individuals is the most fulfilling endeavor I have ever experienced,
and am so thankful I surrounded myself with such encouraging people online.

Here are a few ways I built an online community:

  1. I started by sharing parts of my story publicly, the ones that I felt comfortable sharing online. With each post and the encouraging comments, I felt bolder to share more and more. Eventually, I was surrounded by a virtual group of likeminded individuals who were going through exactly what I was going through.
  2. I sought out others using keywords. On social media, I used keywords and hashtags to find people talking about IBD. There are endless hashtags out there now, but I started with #IBD, #crohnsdisease, #ulcerativecolitis, an #autoimmunedisease. This cut down on the endless searching on Google and took me straight to the people actively talking about IBD.
  3. I engaged genuinely. Much like the golden rule states, I engaged with the level of engagement and support that I hope to receive in return. I had no other intention than to genuinely connect with other IBD warriors and get to know them.

The impact it has had on my life.

The online IBD community has given me so much more joy than I could have ever imagined. I always enjoy checking in everyday and seeing how everyone is doing, and helping how I can.

Additionally, it has also helped me feel less alone when I am going through a UC flare. I receive a flood of encouraging messages in my inbox any time I post about feeling unwell. It makes me feel so much better knowing that I am not going through it alone. There is a whole community online cheering me on and
hoping to see me recover.

Inflammatory Bowel Disease made me feel lonely and isolated due when I was in a flare. However, I discovered that building an online community is a great way to feel connected to fellow IBD warriors and encouraged when I need it most.

About the author

Holly Fowler