Really, “living with diabetes”?

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I know a lot of people don’t like the term “diabetic.” They think it reduces us to our disease. So we have come to use in our speaking and writing the expression, “people with diabetes.” For short PWD.

Personally, I don’t care what you call me. Well, within reason. I know what diabetes is for me. For those who do call me a diabetic, or use the term in their writing, I just see it as a shortcut with words, not a shrinkage of who I am.

That said, we often use another term for those who have diabetes. I read it all the time, “living with diabetes.” As in, riva is living with diabetes. I suppose I should tell my husband we are not alone and maybe this diabetes should pay some rent.

Have we picked up this expression as a euphemism? Does it seem less harmful, less real, more gentle if I’m living with diabetes rather than I have diabetes.

Truth is, I have diabetes. If I were living with it I’m sure I would have asked it to vacate the apartment a long time ago. At least stay under the dresser or go out into the backyard, if I had one.

I don’t say I’m living with green eyes, or tinnitus or shoulder tension. I say I have green eyes, tinnitus and shoulder pain. Well, if anyone bothers to ask. I also have diabetes.

Here’s my final word on the subject: After the cure, I know I’ll say, “Yes, I had diabetes,” not, “Yes, I lived with diabetes.” For really, any sane person would immediately ask me why I didn’t ask it to leave.

A funny, visual trip through a new type 1’s world

Months ago Joe contacted me for a quote about living well with diabetes. Quote given, Joe forgotten, I saw today he tweeted this wonderful article he scribed about being a newcomer to the type 1 club.

Have a read. He’s a funny, laugh out loud funny, touching, insightful guide through type 1 diabetes. It’s also an unusually pleasurable way to spend ten minutes, perhaps learn a few things and/or find your experience staring back at you through grin-producing visuals. Like this one:

Joe

Self-management and submission: A continuous dance between patient and physician

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I’m reading, slowly, mostly on my phone on the subway, a worthwhile book called “The Illness narratives.” It’s stories of people with illness and how they’re treated by physicians and the medical system.  As you might imagine, not very well and not in a way that realizes presence, caring and attention help people heal, even when they can’t be cured.

I read this passage this morning and liked the sentiment:

“…as an anthropologist working in a dialysis center for patients with chronic kidney disease, Linda Alexander (1981; 1982) drew on Gregory Bateson’s idea of the double bind in social relationships to describe the conflicting demands placed on the seriously ill by their care givers: first, be independent, not passive and dependent, and be active in your care; but when you have a serious exacerbation, place yourself submissively in our hands, and we will blame you for what you did or failed to do to worsen your disorder.” Not unlike diabetes.

Alexander shows how that conflict disorients patients and creates feelings of guilt. This interfere with effective care and over time can demoralize patients and their families. Jeffrey Longhoffer (1980) describes much the same phenomenon among patients and their families in a bone marrow transplantation unit. Perhaps the problem is a structural component of high- technology, specialized treatment settings. Patients are expected to be active collaborators in their care in the outpatient phase; but when they are in need of emergency room or inpatient therapy, they are expected to revert to passive compliance with treatment controlled entirely by physicians and nurses.

This push/pull is a constant dance and strain, and one both patients and physicians are little aware of. Just another piece of the story living with chronic illness.

Say Goodbye to Diets

I’m sharing Do’s and How-To’s from my latest book, ahem, ” target=”_blank”>”Diabetes Do’s & How-To’s.” Every month or so I’ll be posting another video here that dLife is also sharing. As you’ll see above, in three minutes you’ll learn some key tips for improving your diabetes self-management and grab a few recommendations just how to do so. Sit back, relax and in the next few minutes get off that dieting roller-coaster for good.