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Notes from a 50+ Year Diabetes Survivor

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Healthcare Policy, Medical Research

Advice for Physicians from People with Diabetes

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Originally published in Diabetes Mine, 11/27/2017)

According to a new survey by insulin maker and diabetes drug company Novo Nordisk, 56% of healthcare providers who treat people with diabetes (PWDs) say they “need more training and support” to help patients manage the emotional and psychological burdens of the disease.

It’s good news that more than half of them realize they need help, and it says a lot that many recognize the importance of the psychosocial side of diabetes care and that the words they use really matter.

Yet, too many healthcare providers still completely ignore the emotional needs of PWDs. And some¬ add to the burdens of the disease because of insensitivity and what appears to be sheer ignorance. That is evident from the anecdotes shared with DiabetesMine after we canvassed PWDs on Twitter for examples of their “best” and “worst” encounters with doctors. We were told some real horror stories, as well as heartwarming tales of caring, wise physicians.

Taken together, these tales convey advice from PWDs that doctors need to hear:

1) Show Compassion and Empathy

Let’s start with examples of medical heroes. There are wonderful, empathetic doctors out there who understand the psychological toll of diabetes, according to some respondents: [Read more…] about Advice for Physicians from People with Diabetes

Diabetes, Inner Chatter and the Monkey Mind

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In a fine essay about Type 1 diabetes, Riva Greenberg conveys how much mental energy is necessary to “stay between the lines” –e.g., keep blood sugar within the narrow range displayed on her continuous glucose monitor:

If you met me…you would have no idea that half my mind space is not free, like yours. It’s busy doing what it needs to do to stay between the lines: guessing at the amount of carbohydrates in my meals, then checking my blood sugar to see how well I guessed. If not well, taking another injection or eating.

Or I’m preparing and drawing up my shot of insulin, also guessing at the dose, and remembering where on my body I took my last three injections so I don’t inject in the same place which can cause scar tissue.

Or I may be switching my syringes, checking my stock of pen needles, putting on a new sensor, ordering more supplies, and feeling my blood sugar plummet when I only meant to lower it a small amount. Then berating myself for over-compensating…

…That’s why the simplest I can put it is Type 1 diabetes is staying between the red and yellow lines all day and night, every day and every night.

Well said. What’s more, the incessant chatter that dominates the inner life of people with diabetes (PWDs) can feel like a terrible burden. Much of the time, nearly everyone has what some meditators call a “monkey mind,” which leaps constantly from one thought branch to another, one feeling to another. But if you are an insulin-dependent PWD, you have many extra branches for your monkey mind to grasp, and it is generating more noise, more instructions, more screeching, than the minds of non-diabetics. And you feel like you need those branches in order to get through the day. Greenburg conveys a distinct sense of being embattled, grim and weary because of this, which I’ve often shared.

One way to ease this burden, like every other burden, is to laugh. Chuck Eichten offers an uncannily accurate picture of a PWD’s inner babbling about food when things are not going smoothly on the metabolic front: [Read more…] about Diabetes, Inner Chatter and the Monkey Mind

Chronic Disease, Empathy and Surly Traffic Cops

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“Don’t take anything personally,” Don Miguel Ruiz advises us in The Four Agreements, a memorable guide to Toltec philosophy. He gives one good reason:

All people live in their own dream, in their own mind; they are in a completely different world from the one we live in…Even when a situation seems so personal, even if others insult you directly, it has nothing to do with you. What they say, what they do, and the opinions they give are according to the agreements they have in their own minds…

It’s hard not to take it personally when other people are surly or otherwise unpleasant. But I need that ability in order to live and work in New York City, which sometimes seems like the international capital of casual crankiness and bad moods. Fortunately, I have been given a gift that makes it somewhat easier: my chronic disease, diabetes.

Don Ruiz is a wise man, but he missed something important about people. They say and do things not only because of the “dreams” –and words, and memories—thrumming in their minds. Their behavior is also prompted by what is happening in their bodies at any given moment. In fact, the dreams, words and memories thrumming in their minds are shaped, at least in part, by their bodies –and not just the “thinking” parts of their brains, but also their glands, organs, lymph nodes, bones, etc.

Even though it’s obvious that our own bodies affect our moods, it is easy to forget that this happens to other people, because we are lost in our dreams. So I try to use my diabetes to help me remember. Low blood sugar, for example, can make me cranky, silly, depressed or irrational—or all four. High blood sugar sometimes makes me lethargic and inattentive. [Read more…] about Chronic Disease, Empathy and Surly Traffic Cops

Diabetes, Depression and Chasing Away the Dybbuk

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One night in the middle of my senior year of college when I could not get out of bed, and I could not taste my food, and I could not answer the phone, and I felt that there was something vile and rotten coursing through my blood, it suddenly occurred to me that perhaps there was a “dybbuk” dwelling within. According to Jewish folk wisdom a few centuries ago, the dybbuk was the dark, sick spirit that possessed people and caused all kinds of maladies. For a few minutes, I seriously entertained the possibility that a dybbuk prompted the inner darkness that descended upon me periodically. Then the realization that I was resorting to primitive superstition made me even more depressed, and I dropped the idea.

I got better, much better, over the years, but the dybbuk/black dog of depression never seemed very far away. And I could never fully account for it. Somehow my particular set of stories, and my particular capacity to overcome them, and what little I knew about biochemistry never came close to explaining it. Maybe it wasn’t a dybbuk, but there often seemed to be something from somewhere outside of myself that grabbed hold, or threatened to grab hold, something beyond my control and imagining.

Then, on a winter evening in 2012, when thinking about thinking about writing about diabetes, I found a New York Times article by Alice Dembner with an evocative lede: “Millions of people face a two- headed beast – diabetes and depression – that gnaws at them from the inside out.” It prompted me to hope there was a chance to understand the dybbuk –or whatever it was that grabbed hold of me–and maybe even find new ways to ensure that it never returned. [Read more…] about Diabetes, Depression and Chasing Away the Dybbuk

Gratitude For Feeling Crappy

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I often don’t feel well due to stress hormones, which act up partly because I have Type 1 diabetes. But I try to feel grateful when that happens. Huffington Post asked me to respond to a presentation made by psychologist Kelly McGonigal, called “How To Make Stress Your Friend.” Here it is. And here was my response: [Read more…] about Gratitude For Feeling Crappy