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Autoimmune Conditions

In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century - Meghan O'Rourke

Autoimmune Conditions

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"Today, researchers believe that they have discovered some eighty to a hundred autoimmune disorders, including disorders as various as lupus, multiple sclerosis, type 1 diabetes, and rheumatoid arthritis. But exact numbers are hard to come by, because researchers still don’t agree on how to define an autoimmune disease, and find it hard to come up with objective measures.

Even the term “autoimmune disease” may be imprecise: we don’t know in every case whether autoimmune dysfunction is the cause of the disease, rather than, say, a consequence. Then there’s the complexity of the immune system. Thyroid patients tend to be preoccupied with antibodies, but Rose, who now runs the Center for Autoimmune Disease Research at Johns Hopkins, notes that one culprit in Hashimoto’s might be the T-lymphocyte—you could have a low antibody count and still be quite sick, or a high antibody count and feel fine. All this uncertainty adds to the shadowiness of the experience.

In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century. And yet some researchers say that the number of cases is rising at almost epidemic rates. The American Autoimmune Related Diseases Association (AARDA) estimates that as many as fifty million Americans suffer from autoimmunity, which makes it one of the most prevalent categories of disease, ahead of cancer. It is a leading cause of illness in young women. (Three-quarters of autoimmune patients are women.)

Some researchers—devotees of “bored immune system” theory—ascribe the rise to our newly hygienic world: with too little to do, our immune system turns on itself. Others think it’s the opposite problem: our immune system is overstimulated by the chemicals and toxins in our environment, confusing those molecules with molecules native to the body. The explanation could involve both, or neither.

My experience of feeling unwell for years before I got a diagnosis turned out to be typical. According to AARDA, it takes an average of nearly five years (and five doctors) for a sufferer to be given a diagnosis. Patients can end up consulting different specialists for different symptoms: a dermatologist, an endocrinologist, an immunologist, a neurologist, a rheumatologist.

A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers, where a single doctor would coördinate and oversee a patient’s care, as at a cancer center. (Israel now has one, the first of its kind.) Virginia Ladd, the president and executive director of AARDA, told me that funding is a problem: donors tend to give to specific diseases, and, because few people understand the connection between M.S. and ulcerative colitis and Hashimoto’s, no one gives to “autoimmunity” as a category. (Eighty-five per cent of Americans can’t name an autoimmune disease.) As it is, many clinicians assume that the patient, who is often a young woman, is just one of the “worried well”...

Worrying about being crazy is part of many autoimmune sufferers’ lives. Even after diagnosis, you’re often trapped in an epistemological maze, not least because autoimmune diseases tend to overlap. Besides, if the experience of autoimmunity is not just in your head, it is also not just in your body. Nortin Hadler, a professor of rheumatology at U.N.C.-Chapel Hill, talks about the consequences of “negative labelling”: when you give patients a diagnosis, they tend to feel sicker than they did without one. Focusing on symptoms, some studies suggest, can make them seem more severe.

And so the person suffering from chronic illness faces a difficult balancing act. You have to be an advocate for yourself in the face of medical ignorance, indifference, arrogance, and a lack of training. (A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill.) You can’t be deterred when you know something’s wrong. But you’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. The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears...

There are still moments when I mourn my old robust state of health. I look at the photograph by my desk, and remember playing in the sun on summer vacation. I remember getting up early during those long months with the feeling that, like the boy in Robert Lowell’s poem “Waking Early Sunday Morning,” I sat “like a dragon on / time’s hoard.” I remember going downstairs before anyone had woken to sit with my book and a bowl of cereal. Later, the dog and I would go out for a walk up the dirt road by our cabin, under the tall New England sugar maples. I’d throw the tennis ball for him, feeling the wet-cool dirt and gravel under my bare feet.

And I remember being so lost in the sun and the dog’s joy and my pleasure in these hours of freedom that I had no sense that I lived in a body, except as a thing that could feel the sun and the wind and the dog’s cold nose."

Source: Meghan O'Rourke, Excerpt from What's Wrong with Me? The New Yorker, August 26, 2013.


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