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Why People With Chronic Illnesses Are Vulnerable to Deceptive Diet Advice

“I came to discover that when you want an answer and you can’t get one, you can bury yourself in the delusion that one exists.”

Illustration: Lucy Sherston

“I“If you’re going to continue eating gluten, I cannot continue working with you.” The face staring back at me from FaceTime was smooth and dewy, but her eyes were cold. It belonged to a wellness coach I’d paid $300 for a phone session to change my life. She promised me that together we could break my bad habits around food and heal the damage I’d been doing to my gut for years — damage that, according to her, was exacerbating my autoimmune conditions.

I hadn’t told anyone about the phone sessions because I was embarrassed I was paying such an exorbitant fee for them in the first place. I wanted them to be my dirty little healing secret, a place where I gave in and let myself be guided to some Instagrammable dimension where I’d never crave sugar or cheeseburgers again.

I also didn’t want to admit to anyone how desperately attached to her I was. She answered my panicked texts in the middle of the night. She listened to my weepy frustrations over the sadness in my daily life I didn’t really understand. She understood how it gritted my teeth each time an unwitting acquaintance asked, “How’s your health?” — as though my health were this pre-packaged thing I had, a thing I could hold and toy with and tend to, and that I could set aside when I tired of it. We established dietary rules to live by, and when I broke them, I confessed. We talked through my indiscretions: the cravings, my longing to feel a different way, the pain.

I now have three autoimmune diseases — Graves’ disease, Type 1 diabetes, and ankylosing spondylitis (a type of arthritis) — but back in 2016, during that FaceTime call, I had only the first two. I was shelling out cash to be told what to eat by anyone willing to take my money, particularly the cashier in the self-help section at Barnes & Noble.

TThe straightforward and reasonable input from the doctor treating my conditions — “We don’t always know what causes these conditions, but we treat and manage what we can” — didn’t match the level of masochistic control I wanted over my health. I was looking for something specific to explain precisely what had gone wrong, and how it could be fixed.

I was willing to entertain unconfirmed food allergies as the singular, sinister culprit for my maladies because it kept me as the person in charge, and me as the person to blame. I came to discover that when you want an answer and you can’t get one, you can bury yourself in the delusion that one exists.

“You have, have, have to change your diet” was the first piece of advice I received, the first time I saw a functional medicine doctor, one who focused on the underlying causes of diseases. She was a cancer survivor and her experience of going through chemo as an MD woke her up to the limitations of patient care in modern medicine, particularly how little attention was paid to diet as a recovery tool. I’d gone to see her because I needed help knowing how many carbohydrates to eat, as a new, overwhelmed, depressed Type 1 diabetic.

She wanted me to stop eating carbohydrates altogether, to let my body recover from the “hammering” I’d been giving it, and so I could inject as little insulin as possible. She also wanted me to cut out gluten, dairy, and sugar.

I balked when she insisted that I had to abandon my (gluten- and sugar-free) Greek yogurt morning habit. “I just find it hard to believe that yogurt is the problem here,” I said meekly.

“I think when you feel better, you’ll find the attachment you’re experiencing to dairy is actually quite remarkable,” she said with a laugh at the end of our second appointment. “And who knows? It’s possible your conditions could reverse entirely.”

Outside, I cried on the sidewalk.

“W“When a physician and patient are presented with a medical scenario that may be life-threatening and have a pathophysiologic explanation (i.e., high blood sugar explained by lack of insulin), it would be dangerous to assume that dietary change alone can treat the condition at hand,” says Dr. Rekha Kumar, an endocrinologist and associate professor of medicine at Weill Cornell in New York City, when I asked her whether illness can be overcome through diet alone.

“All of us in the modern world can improve our diets and nutritional status to some degree, but we can only blame diet as the only cause of a disease when serious, other underlying medical causes have been screened for and treated,” she says.

Diets marketed as the “key” to recovering your health — for example, the autoimmune paleo protocol, which I have experimented with (admittedly very loosely) — feed on the belief that there is a baseline to return to. That if you just X, then Y.

But in autoimmune patients like me, something innate to the body’s function has typically been lost forever — an inability to produce insulin, or make thyroid hormone. These diseases are complicated and poorly understood, and patients are especially vulnerable to unproven claims that specific diets can do away with health issues once and for all — mainly because they’re often willing to try anything to feel better.

CCurative diets romanticize the possibility that complex metabolic processes that have declined over years can spontaneously return. That it’s just a matter of sticking to the protocol!

To be told how a particular diet could alleviate my symptoms was, for me, to feel as if a lifetime of toxins and poor choices were still lodged in the depths of my bowels — that healing was within reach, but it was on me to just let go of the behavior contributing to their fermentation.

By the time I stumbled into the arena of paying wellness coaches for nutritional advice, I was so angry at the belief that feeling better boiled down to something so simple, and so attracted to the possibility that it could still be true.

“I see this frequently,” says Kumar. “When a patient feels that traditional medical treatment has not brought them back to their baseline health, or has not met expectations of how they want to feel, patients look to health books that often make outlandish claims. These books will have some scientific basis, but they also promise results which can be misleading.”

Buying into a curative diet meant I simply didn’t have to consider the unexplainable hazards of living within a human body, subject to its complications and faulty wiring. It meant that somewhere out there was the right amalgamation of elimination diet and willpower, and it was my job to find it. It also meant that I didn’t have to accept my run-of-the-mill longing to feel better than I was feeling, to wish it were less hard. I didn’t have to accept the ordinary, unmarketable truth that most of the time, for everyone, even on a low-carb diet, it isn’t.

Previously international stuff @BuzzFeed. I laugh during my own jokes.

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