A couple of months ago, this op/ed by Dr. Richard Saul, author of the new book ADHD Does Not Exist, started making the rounds on my social networks, including in response to my sharing a post about what it’s like to have ADHD.
Last week, my feed was inundated by this article, headlined, “Researchers Who Provided Key Evidence For Gluten Sensitivity Have Thoroughly Shown That It Doesn’t Exist.” In its wake, I’ve seen a lot of jabs at people who don’t eat gluten.
They seem unrelated, but in the context of my own struggles to better understand my own ADHD (There are a few types of ADD/ADHD, but for brevity I’ll use the catchall term “ADHD” in this post) and recent conversations with friends who have celiac disease, it occurred to me that ADHD sufferers and celiac sufferers have a lot in common.
Much of the stigma surrounding mental illness and learning disabilities sends the message that the diagnosed shouldn’t get help or be open about it. But some diagnoses are too popular, too recognizable, too covered in the media, with treatments so attractive they’re more common as fun recreational drugs than as psychiatric medications. And while you don’t normally see people feigning a nut allergy, the celiac population seems to get more than its share of “me-too”s.
Here’s what ADHD is like for me. I remember being a school kid and never knowing what I’d get in trouble for next: not paying attention, or going way overboard and being too focused on something that I shouldn’t be doing, or acting out on ridiculous impulses. I remember in kindergarten my mom had a bag of little toys that I could pick from at the end of the week if I didn’t get in trouble that week––that’s how rare it was.
ADHD kids get a lot of hands waved in front of their face, a lot of “what’s wrong with you?,” a lot of “control yourself!” We get called mean, hateful, or “crazy” or “stupid” for things we didn’t even plan to do––they just happened.
60 percent of ADHD cases continue into adulthood. Now the stakes are higher: jobs, relationships, responsibilities, health. We go through life figuring out how to fake our way through a conversation even though we’ve missed half of it; pounding caffeine to try to stay on track; keeping two planners and a digital calendar and phone alerts; getting really good at making excuses for lateness or forgetfulness; trying not to let loud noises or super-bright lights cause us to forget what we’re doing entirely. Many of us use alcohol or weed to cope with the input overload or ease our social awkwardness or abate the constant fear that we’ll be disappointing people forever.
A partner or friend playfully questioning our intelligence––“It’s not that hard!” or “Just use your brain!”––might make us flip out or burst into tears for no apparent reason. ADHD women (an underdiagnosed group) have a double whammy: try combining imposter syndrome, the fear that you don’t belong among peers in your field, with the fear that one day everyone might realize how hard you have to work just to stay on the same page.
The idea that what’s wrong with you is an actual learning disability, with evidence of non-neurotypical brain activity and treatments that have been shown to work, is almost too good to be true. You meet others with ADHD and you can’t believe how similar their stories are. You laugh together about shared quirks and common ground. It’s as if life has just begun.
Then everyone else decides to weigh in.
ADHD means not living up to your potential, say the drug companies and celebrity doctors. And don’t we all want to live up to our potential? Treating ADHD will make your child the golden kid you know he can be. In an era when standardized test performance is considered the sole measure of a student’s (and teacher’s, and school’s) success––meaning kids have more busywork and less playtime than ever before––it’s a tempting promise.
Now, your learning disability, the source of so much frustration and anger in your life, is a fad, with all the backlash that entails.
Meanwhile, celiac afflicts approximately 1% of Americans. ADHD is more common, affecting approximately 5% of children and 4% of adults, but I think it’s fair to say that if the treatment for either ailment wasn’t tapping into some widespread American desire, neither would get the amount of attention that it does.
Somewhere along the way people got the idea that a gluten-free diet had health benefits, and that every reckless action or disappointing school grade is a symptom of ADHD. Now those of us who have actually been diagnosed (I was diagnosed in childhood and again in adulthood) with these illnesses are forced to justify ourselves––to both “naturalists” and skeptics who are a little trigger-happy with the “Well Actuallys”––to avoid getting lumped in with trend-followers, while the rest of the country hashes it out over whether our medicine is going to give them a flatter stomach or help them through a sixteen-hour road trip.
We have a common enemy: a cultural lust for the magic bullet.
Most Americans following a gluten-free diet are not celiac-diagnosed. Here in Madison, certainly the pseudoscience capital of the Midwest if not the entire US, it seems just about everyone is “trying to cut out” gluten, and bakeries, farm-to-table restaurants, and bistros happily comply. It’s what customers want, thanks to claims about a gluten-free diet’s ability to help you lose weight, fight thyroid issues, and improve immune health, among other supposed benefits.
But if you have celiac disease (or a medical diagnosis of a digestive disease that requires something like FODMAP), you have to actually tell your server or your host at a dinner party, “When I say gluten free, it’s for real.” Since the vast majority of people requesting gluten-free items are on some kind of diet or orthorexic-purge-du-jour rather than afflicted with a life-threatening food allergy, it’s generally not treated with the same rigor. (Did the bar sanitize the tap lines when they put that gluten-free beer on tap? Does your dinner party host, who claims she “does better” without gluten, know that you can’t eat soy sauce?)
Yes, celiac sufferers benefit from the gluten-free trend: it means more options in the health food section, more hipster locales peddling gluten-free pastries. Every minority group needs allies in the majority. But perhaps the watering-down of public understanding makes this tradeoff, at best, a wash.
Just as gluten affects celiac patients differently from the way it affects the general population, stimulants are a way of leveling the playing field for ADHD people, which is why they’re still the most established medical treatment for us. Furthermore, people with ADHD are much less likely to engage in substance abuse if their ADHD is medicated––an even more important point considering the high incidence of substance abuse among untreated ADHD patients.
If the medication is a good fit (like all psychiatric medication, it can take some trial and error, and not everyone is a good candidate for medication), it doesn’t feel like getting high; it feels like we’ve lived our whole lives with the TV stuck on a static channel and someone’s just handed us a remote control.
But if I lost my prescription and needed a new one, my pharmacist would treat me like a shoplifter, because to most of the country and especially in my neighborhood, home of the #2 party school in the country, my Adderall is just for fun.
Worse, when articles come out complaining that ADHD is overdiagnosed (that hasn’t necessarily been established; while ADHD diagnoses have increased, so have diagnoses for several illnesses including depression and autism), or when drug companies are (rightfully) criticized for aggressively marketing ADHD medication, pseudoscientific thinking rears its ugly head: the establishment can be criticized, therefore the establishment is wrong, and if the establishment is wrong, anything that goes against it must be right. And when the entire body of medical knowledge can be dismissed as “the establishment,” alternative medicine peddlers and scare-tactic fringe doctors thrive like roaches in a basement. By the way, last year Steve Novella delivered an epic smackdown of an ADHD denialist on SGU, and you can hear the clip on YouTube.
If you’re tempted by ADHD clickbait (turns out Dr. Saul actually does believe ADHD exists; he just prefers aggressively marketing medical opinions to medical drugs), please just remember that there are real, actual people whose lives have been largely shaped by this condition and who are being thrown back and forth like a volley ball between drug companies trying to sell ADHD meds, psychiatry denialists using our affliction as their golden-goose example, and, in the middle, our own doctors who are––we hope––just trying to help us.
Similarly, before you snark out about how silly the gluten-free concept is, try to keep in mind that for the people whose entire weekend is ruined when they accidentally eat something that triggers their celiac, gluten-free isn’t just a gimmick. And if you’re all about your gluten-free diet and then––whoops––order bread pudding for dessert because after a couple drinks you don’t care anymore, maybe think twice about throwing around the “gluten-free” label. Eat whatever the hell you want. You don’t need the superficial “benefits” of someone else’s disease to do that.