The Power of Shared Experience

I’ve talked my disease inside and out. I’ve talked about it in doctor’s offices and at hospitals, I’ve recounted it to curious family friends, I’ve described it for my work in patient advocacy, and I’ve written about it in more publications than one.

So you think I’d be pretty set in how I feel about it.

But recently, a good friend and fellow Crohn’s-Disease-haver was in DC. We did a fair amount of eating nachos and watching Riverdale, but I also had the chance to accompany her in a meeting with her US Senator’s staff. In the meeting, she described her experience with Crohn’s. She talked about how it interfered with her life, and how it cost her family exorbitant amounts of money, and how the fatigue sometimes made it hard to live like a normal college student. She described the pain as if there were a “blender full of knives” in her abdomen.

As she spoke, I found myself getting unexpectedly emotional. I’ve said these same things a million and one times –– so why was the Crohn’s reality suddenly hitting me so hard?

But at the end of the day, it’s because hearing about your own trauma from someone else –– especially someone you care about who has also gone through it –– is like looking into a crazy funhouse mirror. Crohn’s symptoms are wildly different from patient to patient, so our experiences aren’t all mirror images, but the emotions having this disease elicits from us are eerily uniform. We all feel isolated. We all feel guilty. We all feel othered.

And I think it’s hard to acknowledge those feelings –– until we hear someone else express them –– because we’re taught not to feel bad for ourselves. When I’m so fatigued at the end of the day that I go to bed at 7 PM, I have a self-conscious inner-voice wondering if maybe I’m just lazy. When I’m not feeling good for the tenth day in a row, I wonder if I should just be pushing myself harder. But when I hear a friend with Crohn’s describing their struggle, it brings up those emotions that are hard to feel on behalf of myself.

No person can function as an island. For the first many years after my Crohn’s diagnosis, I didn’t know a single soul besides me who had IBD. It was lonely and isolating, and it really impacted my mental health. Because even your most wonderful, sympathetic, well-meaning friends and family aren’t going to “get it” in quite the same way a fellow patient will. And for that, I’m forever grateful for things like Camp Oasis, and local support groups, and internet communities that bring folks together. I now have a large network of people I can call friends who have experience drinking a gallon of SuPrep or avoiding pictures while coping with some serious Prednisone moon face. And those shared experiences? Being able to mourn our own losses through others, and commiserate when life with a disease gets particularly hard? It’s invaluable.