Here’s a recap of Part One: I went to an IBD Support Group thinking that I would find, at best, The Fault In Our Stars’ Augustus Waters (- cancer + inflamed bowels), and, at worst, some free food. Instead, I found an intimate group of older gentleman seated around a small square table, ready to discuss our incurable butt maladies. I was alarmed, to say the least.
And here’s a hot slice of truth: It’s a little difficult to discuss the details of your bowel-munching disease in front of other people. In any situation. Ever. Even if they have said bowel-munching disease.
It shouldn’t be difficult, but it is.
*Insert something Important and Profound about how society stigmatizes (mental and physical) illness, and you’re supposed to just pretend everything is fine all of the time, even when your immune system is chewing on your large intestine like a fat caterpillar because it has nothing better to do, or your anxiety is pulsing at the bottom of your stomach like a strobe light OF DARKNESS.*
So, when I stepped into that small room, desperately hoping to sink into the sand-coloured floor before I could take my place at the square table, I was a variety of Uncomfortable rarely experienced before in my Real Girl life.
My sister sat in one of the squat black chairs, and I slumped into the seat beside her.
My cheeks felt hot. I rooted around in my purse for nothing in particular (or for some kind of parachute cord so I could get sucked out of the ceiling and float away). I only looked up when Walt started talking.
“Welcome to our new members,” His long bony fingers gestured to me, my sister, and a woman (another woman!) sitting across from us. I blame my initial failure to notice her on the blur of despair that accompanied losing my IBD-Augustus-Waters dream, also, focusing 100% of my attention on my very disorganized purse didn’t help matters.
Her hands were folded neatly in front of her. She had a round face. A kind smile. Her name tag read Eva, and she looked as relieved to see me and my sister as I felt seeing her.
Walt passed me my own name tag. A name was already scrawled across the front: Charmaine.
God knows what happened to her, I thought, flipping it over and writing out my own name.
As I went to paste on the tag, I realized that I was wearing my fanciest, most embroidered shirt (I had been operating under the assumption that my future lover would be at this meeting, after all). And, therefore (to my horror), literally the only free, un-embroidered space for a name tag was in the center of my left boob, guaranteeing an uncomfortable decision for anyone who wanted to know my name.
I felt watched. (I wasn’t being watched). And, if I was going to be feeling up my left boob in support group, I wanted to own it. So, I slapped on the sticker and stared up at the blinds. Sunlight seeped in between the slats.
We went around the square table, introducing ourselves and our illnesses in the expected way. Walt: Crohn’s Disease. George: Ulcerative Colitis. Eva: Ulcerative Colitis. Perry: Crohn’s Disease.
Me: “Hi, uh…I’m RG. I uh…I have Crohn’s Disease. I um…I was diagnosed in 2012.” (It was not my most eloquent hour). “I went on um Prednisone, and that sucked because I wanted to eat pretty much everything, all of the time…”
Eva breathed a sigh-laugh through her nose and muttered, “Mhmm.”
In an inspirational story, this would be the moment where I opened up like a blooming flower greeting the sun, embraced my disease, and found my one true friend in Eva, because she truly understood.
That didn’t happen.
1) Eva essentially fled the room the minute that the meeting was over, which was probably a symptom of the fact that we had just discussed our bowel-munching diseases in a cramped room for over an hour.
2) My immune system is still a fat hungry caterpillar, and my large intestine is an all-you-can-eat buffet. And an hour of talking about this reality with a group of strangers+my sister is not going to change that, or make me love my disease.
3) There wasn’t an Augustus Waters (This one still hurts, people). And there wasn’t any free food. It was not what I had wanted or expected from my first support group experience.
But, still. It was a little easier after Eva laughed. Some small invisible thing had broken in me, and I was able to smile, to shift my eyes from the sunlight between the blinds to the faces of the people around me, and to continue my story.
I was able to listen and learn that there are Walts in the world, who have small kind smiles and live late into senior-hood, even with Crohn’s Disease. Or that there are Perrys, who have big booming laughs, even with a pretty serious case of Ulcerative Colitis. Or that there are Evas, who can set the world record for Fastest IBD Support Group Escape Ever Recorded, even with Ulcerative Colitis.
And, I guess that’s what support groups are for, in the end. Not finding your very own Augustus Waters (*sob*) or hoarding free cookies. They’re for the knowing that you can live, and live well, even with.
*Some of the details of this story have been changed for the purposes of anonymity.