Shared suffering
When we talk about assaults on our health, whether physical or mental, we’re often told, “We’re not alone.” In my marketing and communications work, I’ve used that cliché more times than I’d like to admit in order to describe the importance of support groups and other gatherings that bring people impacted by the same illness together. As tired of a phrase as it may be, there is truth in it, and I suppose that’s why it gets used as much as it does.
In finding others who have been through the shit show that is inflammatory bowel disease, and hearing about their experiences both good and bad, I’ve learned that I am not, nor have I ever been, alone in confronting the illness. And there is something comforting in that knowledge.
It’s a different kind of comfort than what your friends and family who don’t have IBD can provide – not that I’m downplaying the efforts those people make. But when you can talk to someone who really understands the depths of Crohn’s disease or ulcerative colitis, you can talk about the things you’ve maybe kept to yourself, you can learn, and you can renew your hope. That’s what comes from talking to someone who knows what it’s like to shit your pants in public, what it’s like to feel helpless because the expensive new medication you were prescribed didn’t work, and what it’s like to worry about being sentenced to a life full of setbacks.
The first time that I sought out a support group was when I was contemplating surgery to have my colon removed as a definitive treatment for my colitis. At Toronto’s Mount Sinai Hospital I found an inflammatory bowel disease support group that addressed my concerns about surgery, and gave me the impetus to have the surgery, which at this moment in time I have absolutely no regrets about. I still attend their support group meetings to add to my stores of knowledge and empathy, and to maybe offer the sort of hope I was lucky enough to receive.
As my health improved with my diseased colon gone and my pelvic pouch functioning as a more-than-capable understudy, I began volunteering with Crohn's and Colitis Canada in hopes of helping others dealing with IBD. I like to think that I have helped, at least in a small way, a few people through sharing my experiences, but I know for certain that I’ve gained so much from hearing the stories of others living with the disease, or caring for someone who does. Those stories and those people are constant reminders of how IBD hits people in different ways, but thanks to our collective knowledge, there are multiple ways to hit back.
My utilization of support groups hasn’t been limited to ones focused on IBD. I’ve been lucky enough to have mindfulness groups available to me to teach me coping mechanisms for enduring stressful and generally shitty times. In a mindful self-compassion course I took in 2016, I learned a method for dealing with unhappy times that I still use today. It goes like this:
Place one or both hands over your heart (this part was referred to as the ‘soothing touch’).
State these phrases to yourself in a gentle, caring tone:
This is a moment of suffering.
Suffering is a shared human experience.
May I be kind to myself in this moment.
This mindful practice first focuses on acknowledging that you are going through a difficult time. There’s no point denying it; so you might as well accept it, not as a sign of defeat, but as a first step to asserting some agency in the moment. The second phrase reminds you that, once again, you’re not alone in feeling the way you do. To suffer is to be human, so don’t think life is singling you out as the bearer of shittiness. The third phrase acts as a reminder that you can treat yourself with kindness because you damn well deserve it.
At this point in the practice, I usually pull some realistic thoughts that counter the negative feeling. This is something I worked on with a counselor before I began the mindful self-compassion course. Just as an example, if I feel as though I’ve been treated poorly at work, I’ll be kind to myself by remembering that there is value in the work I do, that I work hard to my job well, and that I’m not destined to stay in a crummy environment forever – I have the ability to help improve the environment, and I also have the ability to leave if the environment doesn’t change.
Quite often when I find myself feeling down, I remember the mindfulness course, the other people who took the course with me, and our wonderful instructor, who was open in sharing some of her difficult experiences with us. Remembering the course keeps me grounded in the knowledge that others are having hard times too, but we’re finding ways to look after ourselves, and that’s a pretty amazing thing.
If you’re reading this and having a tough time dealing with the challenges of Crohn’s or colitis, I hope you’ll consider searching for an IBD support group in your area. You might be able to find one at a local hospital, through a charity like Crohn’s and Colitis Canada, the Crohn’s and Colitis Foundation, Crohn's and Colitis Australia, or Crohn’s and Colitis UK, or through an independent group like Girls With Guts or The Great Bowel Movement. Mindfulness-based workshops have also been mighty beneficial for me, so check one out if you’re so inclined.
I guess the point of all this was to say, yeah, you’re not alone. Our shared suffering is what makes it easier to connect with each other, and what can ultimately drive our individual behaviour to be kinder to others, and to ourselves.
Photo by Lily Lvnatikk
