My Crohn's Diaries

I’m not exactly shy about telling people, friends or less-than, that I have IBD. I’ll talk and talk about my colonoscopies, my stool tests, and my symptoms because I don’t see it as something to be kept secret. There’s nothing wrong with keeping medical issues close to your chest, but I choose not to because it’s something that’s happening to me, something that takes up a lot of my time and mental space. I find value in talking about my experiences, even if some would consider them TMI, if not for their benefit then for mine. To vent, to share, to lift some of the metaphorical burden on me of the pain, the admin, the treatments.

Recently, I was talking about it with a person in my life who straddles the coworker and friendship boundary line. It was validating when, in response to me sharing about my diagnosis, they commented on how serious that was. I sort of hadn’t thought about the diagnosis in terms of seriousness, but rather in a narrow way of it being something I was and am experiencing and attempting to cope with day to day. It was a huge moment of recognition that this was kind of a serious thing to be experiencing and, in turn, a relief that someone else thought that way too.

They asked about my diet and medications and, as some of you can predict already, brought up an article they’d read about a diet someone tried that cured their Crohn’s disease.

It’s difficult, sometimes, to correct people when it comes to things like this because I don’t want to correct people, to seem like a know-it-all, and, at the end of the day, I don’t know that much about the disease either! (Though I do know it’s not curable in that sense…) It’s hard to explain to people that IBD isn’t IBS or an intolerance or a stomach ache. To explain that diet can contribute to symptoms, but is not the root cause.

It’s even harder to explain why this can be frustrating beyond the fact that it’s someone misunderstanding your experiences. That it sort of writes off the severity and complexity of the disease to boil it down to a “simple” diet. That it is emotionally and mentally difficult to come to terms with a forever of this condition and it’s complications and you’re processing that face now, currently, daily, because there is no miracle cure as nice as that would be. That you wish and want and worry for something as easy as eating whole foods or avoiding histamines to fix this, but it won’t. It just won’t.

The article the coworker sent me also focused a lot on the side effects and risks involved with “traditional” treatment of Crohn’s with immune suppressants and biologics and surgery. That these things can raise your risk for cancers or other conditions. It failed to mention, however, the risks of not treating Crohn’s including, surprise surprise, cancers and other conditions too.

It’s more than a diet. It’s much more than that. I know that and so do you. But, they don’t.

Obviously, it depends on the context of the relationship and the conversation, but as frustrating as it can be to have people constantly misunderstand this condition, their uninformed perspectives are, for the most part, well-meaning. My coworker/friend wanted to help me, even if the way they did it was sending me an article from someone’s blog touting the miracle cure of a whole food diet. They didn’t know any better and why would they? I don’t expect them to be experts on a condition they don’t have. I’m not even an expert and I have it!

At the end of the day, they were caring for me in the only way they could think to at the time. It’s a gesture of love, really, even if it’s a little misguided.

I don’t know about you, but I am willing to forgive the harmless blunders of friends when it comes from a place of kindness. We’ve all been faced with conversations with loved ones in which we are helpless and uninformed. In which we simply don’t know what to say. And we want to help. That impulse is good, even if the gesture of help isn’t really all that, well, helpful.

What does it hurt me to skim an article and close out of it? To listen to a podcast and roll my eyes and move on with my day? Because knowing someone cared enough to listen to me, to hunt down the article and to send it to me during their personal time, is a source of comfort. The effort is enough, for me, to know there’s one more person out there who cares.

So, thank you to my well-meaning friends out there. I love every one of you.