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?
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]
Two issues re: the kid at school. (1) Sometimes kids make fun of other kids who are somehow different, or steal their medical devices as a “prank” (I can’t tell you how many times kids threw my expensive orthopaedic shoes into the garbage can during gym class); (2) The kids might have known, if he normally administered his shot in the cafeteria, but the adults might have had a hissy-fit; (3) Some schools require students go to the nurse’s office to self-administer; (4) “Zero Tolerance Drug Policy” — anything requiring needles is strictly verboten in school, regardless of the medical need or reason. (Please, please, please — this “War on Drugs” thing is killing innocent children with chronic illnesses. Do away with it wholesale.)
A lot of schools have some really stupid drug policies when it comes to diabetes. It’s my biggest regret that I never pushed against those policies when I was in high school. I wish I had been suspended for giving myself insulin in the cafeteria (and that would have been my school’s response if I had.) No school nurse has as good a grasp of how to treat a diabetic’s diabetes than that diabetic, and it’s ridiculous to expect a student to take time out of class to test bg when it needs to be done so often.
To tell or not to tell, isn’t that the question? Or better put, when, where and how to bring up the elephant that’s always with us in that room? Great points here. I can completely understand why the child in elementary school might not share with his friends he has diabetes – or at least not say it to the entire cafeteria. But I love that you’d ask your husband what he’s thinking about your sexiness, politics, religion and your health.
I’ve never hid my diabetes- I was always out!
As a kid, I never walked up to new kids at school and said: “Hi, I’m Kelly K and I have diabetes,” but I never denied it when they asked questions.
I wanted to make my classmates comfortable with my diabetes.
Being “Kelly K, PWD” was never an issue. But being “Kelly K, Super Dork” was.
With dating, I bring it up when I feel the timing is right.
As of late, when I tell people I’m a Diabetes Blogger & Advocate- they pretty much figure out that I’m a PWD right of the bat. Sometimes they ask questions and sometimes they don’t.
I think this perpetuates the stigma about diabetes being your own fault, I mean don’t get me wrong when someone has cancer its like OMG it is such a deadly blow and we all rally to the cause and are so applauded for beating the disease. Now how many times do you hear that someone is diabetic outside of the diabetes circles and the call for action. Diabetes has been linked to Obesity in this country and that naturally leads to the self blame game. No wonder no one could associate shooting up with diabetes instead of columbine. Am sure had he said chemo everyone wouldn’t have assumed it was some kind of chemical explosive or something.
Don’t get me wrong, am not bashing cancer or anything, it surely is a deadly disease for those suffering from it but I am just saying.
i have been T1 for 50 years and to this day only my mother, my wife, my two kids and my endo know i’m diabetic. i’ve never told anybody at work, when i was in college or even grade school.
it’s worked fine. i’ve never had a seizure, never been incapacitated by high or a low and i have zero complications.
i’m not embarrassed or ashamed it’s just that my diabetes is irrelevant in my day-to-day life.
life is so much easier this way and i am eternally glad i chose this path.
Like DC Scribe, only a few close friends in my field of work know that I’m a PWD and most of my new friends over the last 10 years don’t know either. As I’ve heard of other people coming out about their illness to others is probably a good thing, I’ve also seen what happens when they do. When using a name like Amy, it turns into “Amy the Diabetic” in conversations when the person isn’t around. Even if Amy is fine with it, it seems that you should value her for who she is and not for what ails her.
I also worry about companies, including the one I recently worked for, who hire health care consultation firms that work in addition to your health care plan. As my wife pointed out, if you tell that outside firm about your disease and they report it back to your company, can you really sue your company based on HIPAA rules if you offered it up already? Maybe I’m just paranoid.
Shouldn’t the american civil disabilities act should protect children from such unfair treatment in school? Thats what i threw on the table of my principle when i was in grade school and there was an issue. It was 8th grade and i just learned about it in history class. You should have sen the expression on his face when i threatened to sue him and i was only 14. You must stand up for fairness. It is not our job to protect the ignorant with hiding things.