Thursday, April 14, 2011

The Stigma of Illness: An Article, An Interview

As a patient, it is always pretty neat to see health-related issues I care about handled in the mainstream media. And when they are handled well? When there is research and depth and narrative all packaged in an accessible yet thoughtful way? That makes me smile.

As a writer, it is a whole different kind of experience to see issues I am so heavily invested in researching and writing appear in popular mainstream media. As many of you know, I am publishing a second book, and it is a social history of modern chronic disease. It is a project that involves an extraordinary amount of research, reading, and interviewing, and interviews aside, most of it takes place by myself, often late and night and before the sun rises. It is an exciting endeavor, but sometimes an isolating one.

So when I read an advance copy of “The Stigma of Illness” that appears in the May Issue of Woman’s Day (on newsstands right now), I was excited. The stigma around illness, including issues of gender, socioeconomics, and politics, is, quite obviously, a major element of the book.

And when I saw research that I’ve used in my own work for several years and discussion of ideas I’ve carried with me everywhere I go for such a long time, I was hooked. People are talking about this stuff. People realize stigma matters.

The article looks at the judgments and blame often placed on patients, particularly those who live with conditions where individual behavior often plays a role in transmission or severity of illness. Individual responsibility for behavior versus genetics or random chance is a comparison I find fascinating, and the inherent (and harmful) hierarchy of patients it sets up is one the most compelling and thorny issues in modern chronic illness.

“For years, social scientists such as Gregory Herek, PhD, a professor of psychology at the University of California-Davis, have been trying to unravel why certain conditions seem to carry “marks of dishonor,” writes article author Joan Raymond. “Their conclusion: Whenever there’s a widespread perception that something can be attributed to personal weakness or poor lifestyle or moral choices, that disease is going to be stigmatized.”

So why such an article right now? Amy Brightfield, a health editor at Woman’s Day I spoke with yesterday, acknowledges these issues have always been in existence, but play an even larger role in public discourse right now, especially when it comes to health care reform and health insurance coverage.

“People talking more and more about what should and shouldn’t be covered…illnesses that tend to get stigmatized don’t tend to get covered as well,” she says. She points to mental health problems a prime example. “You have to prove some physical concrete toll it is taking, which why it is so hard to get coverage for mental health because of the stigma.”

With profiles of three women living with some of the most heavily stigmatized conditions—AIDS, lung cancer, and bipolar disorder—the article does a good job of laying bare the tension that exists when morals, person decision-making, or sanity are questioned as a result of physical illness. The non-smoker who contracted lung cancer anyway and the AIDS patient who contracted the virus in a monogamous, heterosexual relationship profiled in the article know firsthand how painful judgments and assumptions about lifestyle and worth can be.

And of course these are just a few of the illnesses where individual responsibility for behavior is called into question. Obesity and its attendant complications are at the top of the list, too. Brightfield, who is working on a story right now about different communities’ initiatives to reduce obesity and conditions related to it, says personal responsibility is only part of a more complex problem. It’s one thing to say people should eat right and get more exercise, but if you live in an area where fresh produce is hard to find, if you can’t afford a gym membership, can’t walk to school or work, etc, it isn’t as easy or obvious.

“The modern world is not conducive to exercise and making healthy choices about food,” she says.

Turning back to the women profiled about stigma, it is clear that gender often underlies judgments about illness, particularly since more of the nebulous conditions like Chronic Fatigue Syndrome or fibromyalgia, which are harder to isolate biological causes for, affect more women than men. Given the historical context of “hysterical illness” and the huge differences in acknowledging and treating chronic pain in men versus women, there is clearly a lot more to be said about all of this (trust me, I’m working on it!)

Still, as Brightfield points out, and as many patients I’ve spoken to concur, stigma is not gender-specific. Even if we just look at men living with AIDS or lung cancer, it is clear that gender may be a dominant force but it is not always a defining force.

Stigma is equal-opportunity. And because we’re all living with a constellation of hereditary, environmental, socioeconomic, and other lifestyle factors, it’s not our place to assume or blame.

“Don’t judge anyone because they are sick….that’s why we did the story, to show that people get stigmatized…in the illnesses that we featured here, you don’t know the whole picture medically because you are not the doctor,” says Brightfield.

How many times have you felt blamed or judged for your illnesses, whether implicitly or explicitly? Was it by a doctor, a friend or loved one, or even a total stranger?

To read more about this, and perhaps to empathize and commiserate with the brave women featured in the article, make sure you check out the latest issue of Woman’s Day.


Peter said...

Great article and interview Laurie. I think men suffer from similar stigmas too. I often get a response from male counterparts that I should just buck up and move on, as if my illness were a cold.

Jenn said...

LOVE this! I'm in grad school and my goal is to conduct an experience about perceptions, bias, and stigmas assigned to chronic illness. This has been my passion for quite a while and for years I've been searching journals and this topic has not be represented well in them at all. This article is hopefully the beginning of new perceptions!


Katharine Hope said...

How great you are doing a book on this topic of stigma. Very much needed. I'm sure you've read Susan Sontag's book? A major work in this field published back in the 60's.

Laurie said...

(Belated) thanks for the feedback, everyone!

I agree, men definitely suffer from stigma too, and the expectation that they can't be "weak" or show illness.

Jenn-the researcher mentioned in the article, Gregory Herek, has some great research on the origins of stigma and stigma and HIV/AIDS--if you have access to a scholarly database through school I suggest looking him up. Good stuff, and stuff I'm using in my book.

Katharine, great mention. I've taught Sontag for years and Illness as Metaphor certainly plays a part in my book. (AIDS and Its Metaphors does, too...)

Barbara K. said...

Your research is so important. While I do believe there is a gender bias when it comes to stigmatizing, I think the class bias is just as powerful.

Fitness said...

Hey Laurie, I am glad to read the whole content of this health articles . I am very excited and happy to say that this women day become memorable for me after this article.

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