When I stepped outside of myself and decided to welcome the world into my sometimes confusing and painful experiences with Crohn’s disease by writing a blog and creating “The Crohn’s and Ulcerative Colitis Diaries” page on Facebook, I had no idea that I was opening a can of worms. (And no, not the good kind that are helping some Crohn’s disease patients reach remission.) I was excited to share fun big cat memes about Crohn’s fatigue, post informative news articles and research into new IBD treatments, and to write my very raw story to help those who are alone, at home, wondering how and when their life veered off onto Rotten Bowel Exit #666.
But then the lovely world intruded. My support team widened, and I entered other groups where most of the community was wonderful and welcoming, while jealousy, anger, and judgment simmered just beneath the surface.
I can’t tell you how many times I’ve yelled at my computer (but I can tell you it’s filed a restraining order against me.) I’ve read heart-felt posts written by Crohnies who are scared and wondering if they should check out of life. They’re exhausted from the pain of having bile acid diarrhea rip through their ulcerated guts and past their abscessed fistulas, and they’re turning to a place they think will help them. Within moments, they’re attacked for being too “whiny” and told that they’re bringing their disease upon themselves for not pretending the world is filled with pastel unicorns and cheezburger kittens.
I’ve also seen people attacked for sharing that they’re taking Remicade and Imuran to control their disease. People who aren’t doctors tell these already-scared patients that they’re going to get cancer or they’ll die from liver failure because a cousin’s cousin’s mother’s hamster’s wife’s friend died after receiving one dose of Remicade. The person attacking this patient (who is now certain they’re going to die) will tell them to try “all natural” treatments like medical marijuana–which is unfortunately not legal in most states and is a one-way ticket to jail and a criminal record for most of us. The scared patient is then accused of bowing down to the pharmaceutical industry (which is apparently code for “Satan” in many groups even though this industry saves lives).
At first I was surprised and offended, wondering how in the hell someone with Crohn’s disease can attack another patient with the same debilitating disease? I couldn’t figure out how a participant of a chronic illness support group could justify judging someone who is facing the nasty end of a scalpel and is afraid they’ll die on the surgical table, leaving their kids behind.
I realize, now, that my expectations were unrealistic, and that just because we’re all suffering doesn’t suddenly make us angels. People who like to “stir the pot” in the real world will stir it just as hard in the chronic illness community. People who are self-righteous at home and at work don’t turn their personalities off before stepping into what I’ve always naively assumed were “safe zones”.
We all know that not everyone has a severe form of Crohn’s disease and that some symptoms can be mild. Some people don’t suffer every day and don’t believe that others do. We all have different coping mechanisms. Some people do feel better when they’re always positive, skipping through the buttercups in their mind. Just because those buttercups don’t grow for me (seriously, can someone send me some magical seeds?) doesn’t mean I’m any better or worse than the person who uses that defense mechanism.
But it doesn’t mean I have to put up with the judgment. I’m responsible for my own physical and mental health first–we all are. Not all support is good support and all of us have to make tough decisions even if that means backing away from the people who make us feel worse.
I know I can’t help everyone–and not everyone wants my kind of help. And for the folks who do, you can find me on my Facebook page where the conversation is compassionate and mean comments are deleted. It may not have as many “likes” due to lack of drama, but I promise you that you’ll be safe and supported there, no matter what treatment path you take.