Anyone with IBD has likely had a nurse either pushily whisper a miracle cure his neighbor swears by—having IBD is the live version of those internet ads shrieking, “Suburban Mom Angers Doctors With Secret Natural Cure!”—or were asked whether Crohn’s is fatal or contagious before a technician would draw his or her blood. (I’ve had my share of both.)
But I’ve never felt as isolated as when I decided to make radical but science-based changes to my diet, in the hopes of improving my health. Food is used to express so many social things, like love, friendship, concern, wisdom, taste and status. So it only takes a few family holiday dinners and nights out drinking with friends for it to become clear you’ve not only stopped eating the typical American diet, but also apparently rejected and insulted all of American culture and society and everyone in it.
If you don’t eat something, the threatened non-IBDers interrogate you about how you could possibly know for sure that it’s bad for you to eat it (we’re inherently a superstitious bunch, always knocking on wood and not eating blue dairy products on Tuesdays). They smugly decide you don’t actually know that it’s bad for you to eat and are just doing it to be stupid. You foolishly forgot to bring your journal-article printouts with you to your grandmother’s 80th birthday party, so you are without recourse.
If you do eat something iffy-seeming, they can’t believe you would actually eat that when it’s obviously not healthy for anyone and what would your doctor say?! He said it was OK??!!! You need a new doctor!!!
You can never, ever win.
Chuck is very sensitive to electromagnetic activity. When I heard Chuck McGill, the main character’s older brother on AMC’s “Better Call Saul,” explain his illness/syndrome/predicament in a recent episode, I was able to laugh along at the absurdity of this character’s illness. It’s most likely mental at least to a degree, and not that he truly can’t be near any electrical devices without excruciating physical pain and vague harm. But I also had pangs of empathy as I saw myself in Chuck—how he was treated, and how it made him feel.
I’ve had Crohn’s disease since at least 2005, and anyone with IBD knows it can be very isolating. Literally, when diarrhea or constipation keep you sequestered in the bathroom for sometimes hours a day, and emotionally, when no one understands how tired or nauseated or in pain you are. When people either think your symptoms are your fault, you’re being melodramatic or you’re going to die, and are sure to let you know.
If you go gluten-free, people are exasperated with you for a few months, till they read an article in a magazine about it and their local bakery starts selling GF brownies. A family member sweetly bakes a GF milk chocolate cake for you and surprises you with it, then scoffs when you guiltily explain you can’t eat it because you’re now also dairy-free, but the good news is you’re feeling even better now that you’ve quit dairy too!
“But it doesn’t have any wheat it in it and it took hours and it’s really good and I made it myself specially for you and I thought you said you could eat dairy … ?” they say.
So you just eat the beautiful, luscious cake and have the runs for two days. In a crampy, drained stupor, you weakly click on the television and inevitably run across a late-night comedy bit with gluten-free whatever as the punchline. It’s an easy laugh because it’s so obviously dumb and useless! Haha! Hahahahahaha!
I imagine it’s comparable to being a parent, in the sense that your “baby” is your intestines – everyone thinks they know better than you do how to take care of it, everyone is insulted by you doing it differently than they are/did, and they’re all judging you both in front of and behind your back. (Some people are really, really great about it, though. Thanks for reading, great friends and relatives!)
Poor Chuck explaining his illness to his sympathetic but skeptical ER doctor, and using tongs to pick up the toxic cell phone his brother forgot to leave outside in the mailbox. This might as well be me telling a doctor why I’ve stopped eating cheese and wheat and cane sugar (because I’m allergic or noticed it makes me sick), and picking the undoubtedly delicious breading off chicken I was assured by the server was only grilled.
In the end, I don't know whether gluten-free or paleo or vegan or any other diet or alternative/complementary treatment will be shown to be an effective and reliable treatment for IBD. I do know that mainstream medications and surgery have made it possible for me to live a somewhat normal life, and I'm still taking my meds. I'm just seeking even more improvement.
Maybe diet is only an effective IBD treatment for me and a tiny group of people. Maybe 3015 will be the year that Crohn's is cured with persimmon extract and blowfish venom. But the point is that I want to feel at least a little better now, using lower-risk lifestyle changes, without also feeling like an isolated, crazy nuisance.
Also, I have an awesome and easy recipe for paleo-vegan chocolate cake (sub buckwheat flour, coconut milk, coconut sugar, and olive or coconut oil where needed, and top with unsweetened creamy cashew butter as frosting). I never said to not make me cake.
Sidenote: IBD is also less isolating if you attend support groups! No one there makes obnoxious comments about you being too skinny to not eat the greasy grocery-store cupcakes in the break room. And there probably won’t even be any greasy cupcakes. Find the closest CCFA group to you here.
Author and illustrator Katie McLendon was diagnosed with Crohn’s disease in 2005 and worked as a CCFA support group facilitator in Atlanta for nine years. Katie is a Certified Health Education Specialist with a Master of Public Health degree from Emory University who works as a public health professional in Atlanta.