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How Online Support Groups Have Been Helpful in My Journey With Crohn's

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When I first started my journey with Crohn’s disease (a type of inflammatory bowel disease), I’d never met anyone with the same condition. To be perfectly honest, I didn’t know anything about the disease I was diagnosed with. Like many people do, I turned to the internet for advice and support.

I found a pretty large online community of people from all around the world in the same position as myself who shared the same painful disease. At first I just sat back and watched – I didn’t dare ask a question or comment on a thread.


It’s not always a perfect support system, but for some it’s the only one they have. I can’t explain how comforting it is when someone can relate to the struggles you deal with day in and day out, especially when it’s a disease that has an embarrassing effect on your life.

We’re taught from a young age that bathroom habits are private. A lot of shame often goes along with diseases like Crohn’s or ulcerative colitis.

It’s been a few years since my diagnosis and I’ve experienced my fair share of ups and downs. I’ve come to rely on my new support system, as sadly a lot of my “real world friends” didn’t stick around very long after I got sick.

But I’ve been lucky enough to make a few new ones… among them one who sat at the ER with me for over 12 hours and even came to an appointment with me to help advocate for myself.

It can be very intimidating to sit across from an IBD specialist and try to convey exactly what you want to say. Having a second set of ears to take in all the info can be extremely helpful, even more so when the other person also lives with Crohn’s disease.

My advice to anyone dealing with a chronic illness is to find a support system! Doesn’t matter if it’s a local support group or one online. They both share a common goal.

Most importantly, give support to others within your community. It doesn’t have to be a grand gesture; a simple “I understand” goes a long way.

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Thinkstock photo via aelitta.

Originally published: September 29, 2017
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