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Chronic-fatigue media coverage Dos and Don’ts

pkamens Icon Posted by Paula Kamen

April 22nd, 2006

Of all the women’s health issues that get belittled and distorted in their coverage, perhaps none is subjected to more egregious treatment than chronic fatigue syndrome. (Hopefully, that will change, with new research emerging that finds it as bascially rooted in neurology and genetics.)

But meanwhile, here are two classic textbook cases of (with apologies to Glamour Magazine) do’s and don’ts…..

#1: PSYCHOLOGY TODAY: A DON’T

Those with pain and fatigue fight a constant uphill battle against the media that reinforces myths and double standards of these problems as purely psychosomatic in nature, and not at all physiological.

Many of these stories are a part of a bigger (and often sensationalistic and marketable) American narrative or master-story that “mind over matter” is the answer to all disease. If you work hard enough, you will be “cured” of whatever ails you. While I’m not against stress-reduction, it’s often a one-fits-all cure-all to any “invisible” medical problem.

Even worse, these articles often use pseudo-science to back up their points, even in somewhat “serious” magazines. A problem is that articles constantly overstate the power of the mind/body connection, especially with “invisible” illnesses like chronic pain and fatigue, putting an unrealistic amount of responsibility on the patient herself to not stay sick, or get that way in the first place. The result is continuing isolation, guilt and shame of these patients. And even worse, putting all the blame on the individual, these stories discourage wider research into chronic fatigue and pain, which is sorely lacking.

A prime offending and inflammatory example of the past year — a throwback to the most pernicious and antiquated Freudian myths of the Victorian era — was an article in the May/June 2005 issue of Psychology Today, “Is it All in My Head?” The summary at the beginning states:

With diseases like chronic fatigue syndrome and fibromyalgia, what you believe about your illness influences how sick you become.

It’s true that ALL diseases can be aggravated by stress and negative beliefs, but that is no reason to single out these two (which are mostly experienced by women) as special. Also, ALL diseases are likely to have an onset after a stressful life event, when the body’s immune system is lowered.

The article ignores ample peer-supported journal research proving chronic fatigue and fibromyalgia as based in physiology. Instead, it mainly focuses on the opinion of one researcher, Wayne Katon, who basically blames the patient for these illnesses, explaining that “in our modern society, for people who have driven themselves, fatigue becomes a palatable way out of a difficult existence.”

In the beginning, the article, by Melissa Schorr, seems to be sympathetic to chronic-fatigue patients, namely the first one she profiles, Carole Howard, a former high-powered and hard-driving (and therefore self-defeating) college administrator. But then it quickly zeroes in on her past as a high achiever and “the self-imposed stress of her ambitious lifestyle” as the culprit, in “kick starting and perpetuating illness.” In other words, ambitious women get themselves sick.

In another typical oversimplyifing move, the article draws the wrong conclusions from some real and valid studies that people with chronic fatigue and fibromyalgia are more likely to have experienced stressful events in their life than others in the population. This serves to blame stress as directly causing these physical problems (not acting as a trigger, which is the more nuanced reality).

A more accurate explanation of the link between stress and these illnesses is that stressful events can help oversensitize the brain to make it vulnerable to chronic fatigue and chronic pain, even years later. If someone is abused in childhood, the developing brain can be traumatized (but not always). The reality is that for stress to affect patients in this way, either at the time of abuse or later in life, they also have to have a genetic predisposition to these problems. Blaming a stressful life event as CAUSING chronic pain and fatigue is like blaming it as CAUSING heart disease. True, it can trigger a heart attack, but a lot of people experience stress without their coronary arteries exploding.

In that same oversimplyifying vein, the article also cities studies about how those with chronic fatigue are more likely to have problems with depression and anxiety. Yes, this is indeed true for those with pain and fatigue disorders in general; the much-overlooked reality is that pain, fatigue, anxiety and depression have similar underlying brain chemistry, all involving the over-reactivity of the brain. In fact, they are all often treated with the same drugs affecting the same neurotransmitters. But blaming pain and fatigue ON depression and anxiety is a mistake of cause and effect. In reality, they are likely to coexist together.

#2: A GLAMOUR DO!

In contrast, that same month, June 2005, Glamour paints a much more complex and realistic view of life with chronic fatigue, doing a major public service. (Note: article isn’t online.)

In an essay, novelist Anne Ursu writes about her continuing battles with chronic fatigue, with both hope and honesty. She details the extreme and crippling fatigue and brain fog that hit her just before entering Brown University. While she will continue to search for relief, she knows that the battle ahead will be difficult, as it is for so many millions with the disease. She is even critical of insurance companies, not just blaming herself for her struggles:

It’s a strange irony of CFS that some doctors maintain that the disease doesn’t exist, yet insurance companies may exclude you from having it.

The only minor presence of formulaic story telling of this article is the subhead (which writers don’t write), “Falling in love changes everything,” in a section about Ursu’s post-college romance and marriage. This subhead gives the misleading message, once again, that your health is all a matter of thinking the right thoughts (and that all problems end with marriage). But in reality, while Ursu praises her husband’s unconditional support in the article, she does not talk about love “changing everything” in the end. She concludes by expressing the type of difficult and complex human feelings that the typical “feel good” women’s magazine stories neglects. Instead of finding a miracle cure, as most such first-person stories describe, she talks about a more common challenge, of trying to stay brave, despite her family’s support: “My bravery is waning. I don’t know how long this is going to last, and the uncertainty is getting to me. I have things to do, a life to lead. People ask if Jeb [her husband] and I want to have kids, and I want to say, ‘How could we, possibly?’”

Ironically, while Ursu does not annouce a cure-all at the end, this story ends up being very inspiring. It shows a woman who has still found a way to be as happy and brave and productive as possible, despite challenges. She is not putting her life on hold until she finds a “cure,” but is going on despite it.

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