Responding to negativity in the IBD community

I became an active member of the online Inflammatory Bowel Disease community back in 2014, and I now run a Facebook group, #IBDSuperHeroes. I feel very fortunate because it’s generally a drama-free place to be. That said, it IS still a bunch of sick and tired people, facing their own daily struggles. That means that sometimes, tempers are frayed, and not much thought goes into how a comment may come across to others. There’s usually no actual malice in any of the comments; simply short responses, that can come across as a little bit abrupt.

A negative post in the Crohn's and colitis community

A while back, a new member joined the group and his introductory post basically said that we had it all wrong and that there was nothing super or hero-ey about us. He wrote that he had recently broken up with his partner as a result of having Crohn’s disease and that he was incredibly unhappy with his life because of his IBD.

I have seen posts like this in the past in other groups which have been met with a telling off for the negativity, but whether we like to admit it or not, we’ve all felt negative at some point or another. It is part of the emotional journey with IBD, and I believe it’s a very natural response when you feel like you have no control. I think a support group, surrounded by people that “get it”, should be the perfect place to air those types of feelings, with no hostile reactions.

Don’t get me wrong, I thought the post was pretty rude, especially as it was aimed at over a thousand people that he hadn’t even had the pleasure of speaking to yet, who I personally think have many superhero qualities.

How to respond to negativity

I typed a response and hit send:

“I am glad that you are here because I can see that you are struggling. As a group, we can listen and offer emotional support, but we are by no means professionals. I am sorry that you feel the way that you do right now, and I have definitely felt that way myself on more than a few occasions.

People that deserve a place in your life are the people that make you want to keep going, and that makes you believe that you can, no matter how down and out you are. It’s OK to cut out the people that don’t make you feel that way.

Sorry, but I cannot agree with your verdict that we are not superheroes. I have fought through s**t that the average person couldn’t even imagine, and I still do. Many people in this group have been through a similar experience to you, and they have found the strength to keep fighting. To get out of bed every morning and face the world, despite being mentally and physically battered, broken and scarred, takes a great deal of strength.

I hope you can find the support you need to keep pushing forward with a brighter outlook. Have you considered talking to someone professional about how you feel? They may be able to help you get there.”

I was proud of my response. Of course, when I initially read it, it felt almost like a personal attack, after all, this was my group of superhumans, who were basically being criticized! But, I took a step back and read what he had written multiple times before responding, and it was apparent that he was hurting and angry.

Anger and negativity usually come from a place of pain

I think it is important when you are reading and responding to comments in the online community, to really look and see where the comment has come from. It didn’t seem to me like an actual attack, but a post that came from a place of frustration and pain. It’s all too easy to just fire off a response to someone in the heat of the moment, but if you think back to the places you’ve visited during your IBD journey, you can often identify when you were in a similar place yourself.

That is the value of the IBD community.