Why Don’t Men Talk About Crohn’s Disease?
Look, I don’t want to sound like a man-hating feminist.
A lot of my best friends are men. A lot of my heroes too. In fact, I’m a man.
But when it comes to talking honestly and openly about Crohn’s or colitis, men, as a group, just aren’t cutting it.
Take it from me, I know. I’ve been an advocate for people living with IBD for the last six years. Almost every single person I encounter in my advocacy work is female.
Every single person at Crohn’s and Colitis Australia, the national charity for people with IBD, is a woman. Just about every support group for people with IBD, including the ones on Facebook, is run by women. Almost everyone I’ve met in the “patient outreach” section of pharmaceutical companies has been a woman. When I helped to create a national survey of people with IBD a few years ago, a whopping 86% of the respondents we heard from were…you guessed it, women.
Based on these statistics you might think IBD was a disease that affected women more than men. It isn’t. It affects both equally. It’s just that the ratio of women who are willing to talk about it versus men who are willing to talk is about 9 to 1. In other words, in the world of IBD patient advocacy, it’s women who are doing the heavy lifting.
Why don’t men talk about Crohn’s?
What makes me different from other men with Crohn’s? And why am I such a minority when it comes to talking publicly about my illness? Well, the first thing I want to point out is that, for 17 years after my diagnosis, I was just like all the other “strong, silent” men out there. I was paralysed with shame at the thought of explaining my condition to another person. I was terrified of being labelled a whinger, a whiner, a wuss, or worse.
Here in Australia, the way men say hello to each other is is to ask “how’s it going?”, and when the answer to how you’re going is that you’ve been feeling like crap for the last three months because you’ve got a bowel stricture and an anal fistula, it can be hard to respond to “how you’re going” with enthusiasm. Straight away you’ve turned the prospect of a fun night out drinking beer and watching footie with your mate into a total bromance killer. Suddenly the other bloke thinks there’s some kind of problem, and wants to know how the two of you are going to fix it. Preferably within the next five minutes.
The problem with a chronic illness like Crohn’s Disease is that there is no easy fix. You can’t just talk about if for a couple of minutes, throw away the instructions and then hit it with a hammer. A lot of men find this very frustrating. If we can’t fix a problem, then why bother talking about it in the first place?
The difference between men and women when it comes to Crohn’s
Women, on the whole, seem to take a different approach. They don’t try to fix everything. Instead they listen. And sometimes listening is all it takes for the person unloading their troubles to get clear on what they need to do to work through them. Being listened to makes you feel validated, comforted, empowered. In other words, being listened to makes you feel better. That’s why all these support groups exist, and why it’s such a shame that more men aren’t using them.
Ironically, when I think back to how my advocacy started, it was my male impulse to fix a problem that kicked things off. I had somehow managed to talk my way in to a short season at the Melbourne Comedy Festival in 2011 performing a musical comedy show called “Chronic”. The show date was rapidly approaching and I needed some stand-up material to connect the songs together. I had never done stand-up before and was terrified. Everything I wrote was shallow and painfully unfunny. Until one day, I started writing about the 11 nights I’d spent in hospital in 2009 because of my Crohn’s disease. Suddenly everything clicked into place. People laughed. People listened.
In other words, I had a problem that needed fixing, and talking about IBD turned out to be the exact way to fix it. Even better, because I was talking about IBD on stage, under a spotlight, using a microphone, it meant that I got to experience what it felt like to be listened to for a whole hour, by a room full of people who didn’t once try to interrupt me to offer quick solutions so they could get back to talking about something else.
Support and being able to vent about Crohn’s
Being listened to is a beautiful gift to receive. I ended up finding that out in an elaborate, costly, and often stressful way, but you don’t need to write a bunch of jokes about your colon in order to be listened to. You just need to actively look for people who know how to do it. Support groups are full of them. But before you even go there, you’ll probably find at least one great listener among your close family and friends. Don’t be afraid to give them a chance, it may be the best conversation you’ve ever had.
The “strong, silent” male may still be the prevailing archetype, but once you start speaking out about your illness you’ll soon see the lie at the heart of that phrase. Silence in the face of your IBD is not strength fellas; it’s weakness. It means the IBD is winning. It’s owning you. Learning how to talk about it, and finding people who know how to listen, is the surest way to take back control of your life.
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