My 12-year-old daughter's become obsessed with a website called FMyLife, if you'll excuse the expression. It's a collection of mishaps and hard luck stories that might not be a bad model for the StupidDiabetes.com concept we discussed here, come to think of it.
But what I wanted to point out was an entry about diabetes that she found the other day, from a kid who reports that he got suspended from school for "shooting up" in the cafeteria.
"Isn't that stupid, Mom?" she asked. I thought she was talking about the school...
"Why wouldn't he tell people it was the diabetes? Why didn't anyone know that?" she added.
It took me a good 15 minutes to explain to why some people aren't "open" about their diabetes: what could possibly motivate someone to keep it secret?
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If she were older, I would have referred to this post that came to mind, evaluating research on the topic back in 2007. I doubt that the numbers have changed much since then:
Politics, Religion, Sex (um, and Chronic Illness)
What do you talk about at the dinner table?
I discovered years ago that Europeans don't generally have issues discussing the three topics we Americans consider taboo: politics, religion, and sex. My friends in Germany would say, "What else is there?" Well, illness for one thing...
Interestingly, a new national survey from a company called Evercare just discovered that "Americans are as unlikely to talk to a friend or loved one about better managing a chronic illness as they are to discuss politics or religion."
"Additionally, 56 percent of Americans are more likely to loan friends or loved ones a large amount of money, advise them against taking a job they didn't think was right (48 percent) and tell them their spouse was unfaithful (41 percent)..." than to discuss ways to better manage long-term illness.
In fact, the title of Evercare's new report is "Chronic Illness, Chronic Silence." They talk about "recognizing the need for communications from loved ones to help individuals with chronic illness manage their conditions effectively," and even offer tips for helping a loved one or friend manage their chronic illness.
Now personally, I'm all for breaking through the spiral of silence, no doubt. I can't stand the thought that my loved ones or friends might be curious but afraid to ask, or worse, uncomfortable with the very idea of my illness.
But on the other hand, I'm not always in the mood for any kind of meddling. Even when the intentions are good. So maybe it's not so bad that people are often reluctant to chat about what ails us.
On the other hand, again, what if I were really doing poorly and no one intervened? Not even my closest loved ones and friends? That would be bad news, too.
Some of Evercare's tips for the "others" are to learn more about the illness itself and explore your loved one's or friend's actual goals. This isn't bad advice, since this is the only way the "others" will ever be able to determine if we're really in trouble (as opposed to just having a bad day or two).
Maybe it's our job to raise this "taboo" topic at the right moment when we feel comfortable. So maybe some night at dinner I'll go for broke and face my husband with: "Hey honey, can you pass the mashed potatoes? Oh, and btw, aren't you glad to be married to a hot, Jewish, Democratic, person with diabetes? About that diabetes now...?"
[Editor's Note: the other result of this survey was data on too much unsolicited advice! For more on that, see Scott's Web Log]