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IBD is Not a Contest.

IBD is Not a Contest

Please repeat after me…

“Your health and patient journey are not a contest”

“Your health and patient journey are not a contest”

While social media offers an unbelievable boost of support to those of us in the inflammatory bowel disease community, there are times when it can do more harm than good. Sometimes it can feel a bit like trying to keep up with the Joneses, if you will. You may feel like you should suffer in silence just because you aren’t visiting your local hospital once a week or once a month. You might feel like your experience is minimized by those who constantly have a new struggle or medical issue to share or “boast” about. You may feel like others question if you belong in the IBD family and its close knit group of advocates.

I’m here to tell you, you do.  In my nearly 13 years battling severe Crohn’s disease (that’s how my GI refers to it), I’ve realized that many have it better and many have it worse. But I’ve never felt like my patient journey was a competition. I in no way want to wear the crown for being “the sickest.” It’s not a rat race I feel is necessary. Rather than use social media for sympathy round-the clock, I personally find it much more cathartic to be raw and honest, but also positive.

There is more to life than IBD.

Yes, it’s a huge part of who we are, but we still have the ability to be so much more.

Instead of looking at social media as diminishing our own experiences and as a way of getting attention, even if it’s really a cry for help – try using it as an avenue that lifts your spirits. An avenue that shows you how many others wake up each day with your same reality. As patient advocates and people who openly share our personal health stories, at times it can weigh us down. The last thing we need is added stress. Use your advocacy efforts and your story to empower others. Show them the good with the bad. It’s not all about infusions, injections, procedures and surgeries. Show them your awesome vacation pictures. Show pictures of you with your family, show yourself enjoying life.

By showing yourself – all sides of you – you are giving hope to a very important group of people:

The newly diagnosed. Think about to those first few weeks of diagnosis. Back in 2005, I didn’t have the luxury of looking to social media for support, but if I did, I would have wanted to see strong women with IBD who didn’t let their chronic illness rid them of their dreams. By showing the full picture of our lives, family and friends, both those who have IBD and those who do not, see firsthand what life with Crohn’s and ulcerative colitis are like. Knowledge is power. Awareness and education are invaluable for our community.

So, the next time you’re scrolling through social media, take note of how it’s making you feel. Do certain people and their posts bring you down? Do you question your own journey and experiences because they don’t seem to measure up to others? Have you ever felt bullied or left out because you didn’t experience the same as someone else in the chronic illness community? If you can answer ‘yes’ to any of these questions, know that you are not alone.

But also know, just because you may be in “remission,” haven’t been put on a biologic, haven’t had surgery…you name it, that doesn’t minimize your journey. Think of your personal patient story as unique, because it is. Share what you want, but be mindful of how your words and actions will make others feel.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    9 months ago

    Thank you for sharing!

    I love how you said that when it comes to social media, you would have wanted to see “women with IBD who didn’t let their chronic illness rid them of their dreams.” I too would have loved to see this when I was first diagnosed.

    Yes, IBD is hard and most of us have to deal with hospitalizations and the works. But there are also many who thrive and I feel like we don’t see that enough. It is so inspiring, and it instills hope, especially to those struggling in the moment. So don’t forget to post the good along with the bad! Great point!

    Always dancing,
    Elizabeth (team member)

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