Sunday, October 21, 2007

Chronic Illness: No One's Talking About it

From an October 11 article in the Atlanta Journal-Constitution:

Americans are more reluctant to discuss managing a chronic illness with family or friends than to talk about politics or religion or even extra-marital affairs, according to a survey of more than 1,000 adults conducted by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. And, btw, by 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include: They think the person has the situation under control (66 percent); they are not a health care professional (31 percent); they don't want to seem like a nag (31 percent) or rude (29 percent); they don't believe the person would listen to them (27 percent); or they didn't think the matter was that important (15 percent).

The bit that caught my attentions was this:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health. However men have an easier time offering health advice to their spouse (28 percent) than women (19 percent).

This means that even among committed couples dealing with chronic illness, there's not a whole lot of talking happening about the topic. This deeply concerns me. Chronic illness consumes -- it can consume time, energy, passion, attention, empathy, altruism, and even love. And it's voracity can become even more potent when there's nothing between it and it's victim but empty silence. How lonely!

And any significant silence, any unnamed pain, or any undiscussable topic does not stay encapsulated in a neat corner of the relationship. It infiltrates. It seeps into other territories in the relationship, taking up more and more space until silence turns into habit. Not discussing a fearsome issue -- be it illness, sex, infidelity, money, family -- does not diminish its impact. On the contrary. The tension around the taboo subject just gets expressed elsewhere - through distance or eruptions.

Why aren't couples talking about the chronic illness in their lives? Is it denial about the illness? Is it protection of the partner's feelings? Is it avoidance of one's own feelings? Is it disgust over the physicality of some of the symptoms? Is it rage at the sick partner for his/her limitations, or at the well partner for his/her health? And why is it easier for men than for women to speak? Or is it harder for men to hear their female partner's words than it is for women to hear their male partner's?

Whatever the reasons, illness is just too hard to carry alone. Please, may we all find a way to find the words that penetrate the silence.

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