This weekend I stumbled upon a European diabetes teens site with a tagline that stopped me in my tracks. Under the site header, the text reads: “We wish that people would understand that diabetes is more than an illness. It is a way of life.”
What an awesome statement. This is exactly what I’ve been wishing that people around me would understand, but I somehow hadn’t formulated into such a concise statement. It IS a way of life, and a complex one at that. We are ill, without being sick; disadvantaged without being disabled; and chronic without being terminal. We don’t “look sick” but we’re burdened with intense management of our bodily functions in a way that non-diabetic folk can hardly grasp.
As Mary Tyler Moore points out in her recent “coming-out party” on the up’s and down’s of 40 years of living with Type 1 diabetes, there’s little chance for spontaneity in life:
“You’ve got to always plan. It is a fact of life that if someone invites you out to dinner you have to think, ‘What are they going to be doing when they serve you dinner? How quickly are they going to get it on the table from the time I arrive? When should I take my shot? What should I eat of what’s available?’ ”
Don’t we know it? And this ever-present burden of planning and managing is what people around us don’t “get.”
Last Christmas, a very good friend of mine who spends a lot of time with me these days gave me a teeny-tiny party purse as a gift. It is covered with mother-of-pearl, and has a shell handle. It kind of broke my heart, because the purse is simply exquisite, but as long as I have diabetes, I will NEVER be able to use it. In a pinch, I could fit maybe a pack of glucose tabs in there, but not even the smallest meter and lancing device would fit alongside a sugar source. Forget it. What makes me so sad is that despite all my juggling of various purses and travel packs, it has somehow escaped my friend’s notice that my way of life now requires me to schlep certain life-saving supplies with me at all times. Even at fancy parties. Especially at fancy parties, where alcohol will be consumed. *sigh*
Funny how a celebrity I never met “gets” my way of life better than one of my best friends. This week, Mary Tyler Moore unveiled her new book of memoirs, titled “Growing Up Again: Life, Loves, and Oh Yeah, Diabetes.” I can’t wait to read it, just for affirmation that I’m not alone in this way of life.
Searching around a little to find the source of that overseas teens site, I discovered that some strangers in Germany “get me” pretty well, too — because diabetes is a way of life apart no matter where you live. Here’s the English-language quote they chose to showcase on the publishers’ home page:
“Insulin is a remedy primarily for the wise, and not the foolish, whether they be patients or doctors” — Elliot Joslin