Meghan O’Rourke, poet and author (Halflife: Poems, Once: Poems, The Long Goodbye: A Year of Grieving), has written a wonderful piece for The New Yorker on living with a chronic illness. It’s called What’s Wrong with Me? I had an autoimmune disease. Then the disease had me.
For years O’Rourke experienced symptoms that she tried to attribute to her latest source of stress. Doctors were unable to offer a diagnosis, a situation that tends to suggest the suspicion that the symptoms may be all in your head.
She writes: “I was ill for a long time — at least half a dozen years – before any doctor I saw believed I had a disease.” Eventually, after she received a label for her symptoms (autoimmune thyroiditis or Hashimoto’s disease), she connected to the online community of chronic disease sufferers. There she found not only a great many individuals with similarly frustrating histories, but an abundance of home-grown advice for the relief of symptoms.
A more or less definitive diagnosis for a disease that is only vaguely understood may at least confer some legitimacy on one’s status as a patient (for an historical perspective on diseases that do not fall neatly into diagnostic categories, see Robert Aronowitz, Making Sense of Illness .) The individuals who suffer, however, are still very much on their own when it comes to recovery and the alleviation of symptoms. Thus the home-grown advice.
Orthorexia and healthism
What I’d like to focus on in this post is one small part of O’Rourke’s narrative: her attempts to alleviate her symptoms through a growing obsession with the selection and control of the food she ate. It’s not difficult to find media stories and blog posts that put a positive spin on (what amounts to) an excessive preoccupation with healthy eating. It’s rare, however, to find an experiential account that recognizes the obsessive pursuit of health as itself unhealthy.
A classic discussion of the latter is Steven Bratman’s Health Food Junkies: Orthorexia Nervosa – the Health Food Eating Disorder. In O’Rourke’s case, of course, she was not simply eating to be healthy. She was seeking relief from very real and disturbing symptoms. That’s not quite the same thing as orthorexia, although both provide the health food consumer with an opportunity for reflection.
Preoccupation with healthy eating is a variety of healthism, a pervasive topic on this blog (see What is healthism? and my numerous other posts on this subject, including my own experience). Healthism is often discussed as an abstract concept (primarily by sociologists). As a gifted writer, O’Rourke brings the actual experience of healthism to life.
How illness becomes an identity
As O’Rourke began reading contributions from the online chronic illness community, she discovered extensive advice on correlations between diet and symptoms. She describes one summer’s month-long episode of applying what she learned.
I embarked on a diet that had many enthusiasts among the cyber sick. It was a version of the “specific carbohydrate diet,” which looks a lot like the so-called Paleo regimen: no gluten, no refined sugar, little dairy, lots of organic meat and vegetables. … For breakfast, I pulled out a container of dairy-free kefir, made from coconut — the probiotics are supposed to be good for your gut. I mixed it with cinnamon (my insulin was low and cinnamon is said to help stabilize blood sugar) and ground flax seeds (for the omega acids, which apparently reduce inflammation in the body). Then came the almond milk, which I had to make myself. (My online advisers forbade the store-bought kind, which contained carrageenan or xanthan gum.) This involved soaking the almonds overnight, pinching the skins off one by one, grinding the nuts, pouring water through the meal, and — are you still with me? — straining the liquid through an organic, unbleached cheesecloth. Next, I added two walnuts — although I had read that they contained the wrong omega-6-to-omega-3 ratios, so you had to be careful with them — and some raspberries, though I worried about the raspberries, too. They were rich in liver-protective rheosmin but also contained fructose, and supposedly could “ferment” in your gut, encouraging the bad bacteria that led to hormone imbalances. Finally, I sat down to eat the concoction.
O’Rourke was spending half her time (“at least”) on shopping for food, preparing it, and cleaning up afterwards. The ingredients were expensive, and the effort was fraught with anxiety. “I fretted over whether it was O.K. to eat raw spinach, given that it may be goitrogenic (i.e., suppressive of thyroid function); hot peppers, because they’re a ‘nightshade’ vegetable; or eggs, because they contain lysozyme, an enzyme that—well, it’s complicated.”
She visits a variety of nutritionists, follows their advice, and sinks deeper into preoccupation with her health.
What I had wasn’t just an illness now; it was an identity, a membership in a peculiarly demanding sect. … I knew that I was a mark for any faddist who came along, but I tried to chart my symptoms, to treat myself like a lab subject.
Does obsession with health lead to better health?
O’Rourke’s description of her daily routines (not only food, but such things as starting each day with trampoline jumping and dry brushing to stimulate her lymphatic system) begins to sound like Dr. C. K. Meador’s 1994 satire, The Last Well Person. This concerns a fictional, mid-western algebra professor who follows a strict dietary regimen, regularly gets every possible diagnostic test, modifies his life according to the advice of each health news bulletin, and so much more. “Once a year he measures and records the moles over his entire body (with the assistance of his wife).” (Quoted from my summary of the paywalled article, here.)
There’s a difference between Meador’s algebra professor and Meghan O’Rourke. The former is perfectly healthy. That is the point of Meador’s satire: in late modern times there is so much emphasis on avoiding risks to our health that none of us can consider ourselves healthy. We are permanently and profoundly at risk. This is the underlying assumption addressed by all those who write about the prevalence and harms of overdiagnosis, medicalization, pharmaceuticalization, and healthism (H. Gilbert Welch, Ray Moynihan, Alan Cassels, Ben Goldacre, Shannon Brownlee, John Abramson, Nortin M. Hadler, Jonathan Metzl, Peter Conrad, Lynn Payer, Robert Crawford, Petr Skrabanek).
Meghan O’Rourke is not healthy. She seeks relief from a chronic condition that leaves biomedicine somewhat baffled and for which treatment is inadequate.
There’s another difference between O’Rourke and “the last well person.” She is able to recognize that excessive preoccupation with her condition – as legitimate and debilitating as it is – might have negative consequences of its own.
[Y]ou’ve also got to be willing to ask how much is in your head — and whether an obsessive attention to your symptoms is going to lead you to better health. … [A]s I was staring at my array of brown pill bottles one spring morning, fretting about having run out of one of my supplements, a flicker of rebellion stirred in me. … I had become trapped in my identity as a “sick person,” someone afraid of living. If my mission in life had been reduced to being well at all costs, then the illness had won. … [T]rying to be the Best Patient in the World can become an isolating preoccupation, even another form of debility. … In order to become well, I would have to temper my own fanatical pursuit of wellness. … [H]owever bad I may sometimes feel, I count myself lucky not to be spending my life as, first and foremost, a patient.
I have no idea how rare or common it is to arrive at this realization. Or whether this is something that happens more readily to those who are healthy or to those who are ill. I suspect it’s a less common realization among those who see themselves as simply pursuing a morally upright and healthy lifestyle. It also seems reasonable to suspect that it’s more common than we would ever know. After all, who wants to admit, as O’Rourke does, that they were “a mark for any faddist who came along.” Her willingness to discuss this is why I found her account so valuable.
Healthism as opportunity for reflection
O’Rourke’s personal insight may be of value to those who endure the symptoms of a chronic illness. But it can also be translated into cautionary advice for those who are asymptomatic. Does obsessive attention to health food, supplements, and surrogate markers make us healthier or just obsessed?
Recognizing healthism in one’s life provides an opportunity for reflection. Wendy Brown writes: “[Neoliberalism] figures individuals as rational, calculating creatures whose moral autonomy is measured by their capacity for ‘self-care’.“ Do we really want personal health to be our most important moral value and our life’s goal? Jayne Raisborough writes: “Being healthy is thus a crucial aspect of the imagined ideal neoliberal citizen, it is not just about being healthy – but being a better self and performing ‘betterment’ in a host of ways (‘success’).”
Is the prospect of being a better self – a ‘success’ — appealing? Yes. Do we pay a price for unreflectively subscribing to the lifestyles that support and entrench a neoliberal agenda (for example, with an epidemic of depression)? Yes. Is this worth a moment’s reflection? Yes. (I focus on neoliberalism here because I believe it offers an avenue into understanding how we came to feel personally and individually responsible for our health, as opposed to recognizing the consequences of living in an unhealthy physical, social and psychological environment.)
“First and foremost”
When we are suffering from an illness, nothing is more important than recovery and health. I recommend O’Rourke’s article to anyone with a chronic illness. It’s behind a paywall unfortunately, but most public libraries offer circulating copies of The New Yorker. Look for the August 26, 2013 issue.
My selection of what interests me in this article may give an unbalanced impression of the piece as a whole. Its very existence offers support to those who suffer from chronic, autoimmune, and undiagnosed illnesses. I recommend it not only for its insight and support, however. O’Rourke is not simply a patient communicating details of her experience, valuable as that is. First and foremost, she is a gifted writer.
Healthy lifestyles serve political interests
The politics behind personal responsibility for health
The tyranny of health
My personal odyssey through the health culture
The last well person
Is the prevalence of depression related to the modern empowerment of the individual?
Why medicine is not a science and health care is not health
Image source: Paleoista
Meghan O’Rourke, What’s Wrong with Me? I had an autoimmune disease. Then the disease had me, The New Yorker, August 26, 2013
Robert Aronowitz, Making Sense of Illness: Science, Society and Disease
C. K. Meador, The Last Well Person, The New England Journal of Medicine, Volume 330:440-441, February 10, 1994, Number 6
Wendy Brown, Edgework: Critical Essays on Knowledge and Politics
Jayne Raisborough, Lifestyle Media and the Formation of the Self
H. Gilbert Welch, Overdiagnosed: Making People Sick in the Pursuit of Health
Shannon Brownlee, Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer
John Abramson, Overdosed America: The Broken Promise of American Medicine
Shannon Brownlee, Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer
Nortin M. Hadler, Worried Sick: A Prescription for Health in an Overtreated America
Jonathan M. Metzl and Anna Kirkland (eds), Against Health: How Health Became the New Morality
Robert Crawford, Healthism and the medicalization of everyday life
Petr Skrabanek, Death of Humane Medicine: And the Rise of Coercive Healthism