Send Me More Stories About Chronic Illness
The pain was so severe that Samantha Irby was convinced she was having a miscarriage. Except for that pain, though, she had no reason to believe she was pregnant. After a lifetime of having what she assumed was just a weak stomach, something felt different. “I was kneeling on the floor in the bathroom and I was like ‘This is not a normal pain,’’ Irby, now 37, says of her 2005 episode. “I looked down and my stomach was distended, it was hot to the touch.”
A scan at the ER revealed that her intestines had swollen and twisted into a pretzel shape. After a two-week hospital stay, during which she had a capsule endoscopy (“You swallow a giant plastic pill that has a camera in it. It moves through until you finally poop the camera out. At the time I was too sick and scared to acknowledge how cool that is.”), she was given an indirect diagnosis of Crohn’s disease, an inflammatory bowel disease that is particularly rare among black people.
It took years of experimentation with lifestyle changes and drugs to get to remission, but the experience had a creative upside. A few years after her diagnosis, Irby started a blog called Bitches Gotta Eat, where she matter-of-factly detailed her bathroom-intensive life along with entries about friendship, dating, and sex. “I got messages from people who were like: ‘Thanks for putting a funny face on a thing that is not always funny.’ Once I started getting positive feedback I thought, ‘I can write about this more.’”
Since starting her blog, Irby’s has since published two books of essays, 2017 New York Times bestseller We Are Never Meeting in Real Life as well as Meaty, which is getting re-released by Random House in April. Irby is also working with TV writers Jessi Klein and Abbi Jacobsen turning Meaty into a comedy series for FX. Now living a quiet life in Kalamazoo writing and step-mothering, Irby spoke with Folks about the practical daily matters of Crohn’s and the doctor who made a difference in her life (even though she originally told him he was too cute to treat her.)
Irby is the author of We Are Never Meeting In Real Life and Meaty
Tell us a little about your Crohn’s disease. What are your triggers?
Rainy days—my body feels like it’s in traction sometimes. Super soft cheeses: they’re so delicious but I know that’s oing to be a problem. And, what will sometimes give me the hardest time is super healthy food like brown rice. I can’t. It just comes out looking the exact same and with a vengeance. If I sit and eat a bunch of carrots and hummus, which is delicious, I guaranteed I’m going to be in trouble later. That’s what’s so funny—sometimes when people catch wind [about your chronic illness] they want to email you all this unfounded advice. They’re trying to tell me what to eat and I’m like, “Great I get it,” but sometimes the only thing that will have the smooth ride all the way through is white bread, bananas and pasta.
You have joint problems an addition to the Crohn’s too, don’t you?
Yeah, peripheral arthritis, which is a degenerative joint disease. When my Crohn’s is active, the joint pain is excruciating. It’s like insult to injury to have to sit on the toilet all the time and have your knees hurt.
Your wife was a reader of your site before you married her. Do you think that helped her understand what you were going through.?
I think that at least having a base knowledge of Crohn’s makes some of the conversations easier. Like, I know you know I have diarrhea but you also need to know that if I need something from downstairs you might need to get it while I try to get my knees and joints together. So my blog gave her a good blueprint of what life together might be like.
Who were some doctors or practitioners who made a difference in your life? What did they do?
When I first went to the ER in 2005, I had to sleep with this Nasogastric tub up my nose. I was totally disoriented and had no idea what was up. The next morning, my super hot GI doctor came in and said, “Hey, I’m Dr. Mehta, it’s nice to meet you.” I was like: “No, you can’t be my doctor. I can’t be talking to you about my butthole!” He laughed and we hit it off.He really stuck to my intestines and not my myriad other problems.
It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you.
It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you. I went to the doctor for an ear infection a few months ago and I got a referral to the new bariatric clinic, and I was like “Okay…but can you just work on my ears?” Both he and Lori Jackson, my GP who it took me too long to find, were great because they stayed focus: “This is the problem we’re dealing with and this is what we’re going to fix.”
It’s so refreshing as a patient dealing with a long term chronic thing to have a doctor who wasn’t trying to shame me about my weight the time, especially when their job is to look into my mouth and butt all the time.
What resources do you wish you had when you were diagnosed that you didn’t?
I wish I had just known other people who were dealing with Crohn’s. That was part of my impetus to write about it. It’s one thing to meet up with a bunch of old men who have Crohn’s, but it would have been nice to know there were so groups for black girls with IBD. And it turns out there are—they’ve reached out to me, they’ve emailed me.
What advice would you give to other young adult women who are recently diagnosed?
Find a doctor you trust. Listen to what your doctor says and what your body says. Take other peoples’ advice with a grain of salt. Especially in the Internet age, as soon as you tell somebody you have something going on, the first thing they want to do is regurgitate some bullshit that they read somewhere. With gut disease, people don’t think of them as being real, so they say things like: “You just have a weak stomach, you just need to drink apple cider vinegar every morning.” Don’t listen to anybody else’s armchair advice. If it feels good and works for you, great, but don’t feel pressure to listen to that one person on Facebook who thinks he or she knows a lot about organic groceries.
This interview was edited and condensed for publication.
