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. She wrote: “The struggle of coping with diabetes feeds deep sadness. Depression gets in the way of dieting, exercising, and even taking the medicines that can control diabetes. The resulting downward spiral can make the depression unrelenting.”
That seems obvious to me now, but I had not realized that, as the article noted, people with diabetes were much more likely to be depressed than people without it. What’s more, the brains of Type 1 diabetics (T1Ds) are, well, different: they are “less dense and less responsive in an area of the prefrontal cortex that helps control emotions and is believed to contribute to depression.” Both depressives and people with diabetes (PWDs) tend to have high levels of cortisol, one of the stress hormones. In fact, “scientists aren’t sure which comes first—the diabetes or the depression—or whether the sequence is different in people with Type 1 or Type 2 diabetes.”
Was it possible that there was a direct, biochemical link between T1D and my depression? Were they part of the same condition, different aspects of the same malady?
A little more Googling revealed that in 2009, researchers at the Joslin Diabetes Center found that the brains of people with T1D had abnormally high levels of the neurotransmitter glutamate, and this might be related to depressive symptoms and lower scores on tests of cognitive functions. “These findings could lead to new ways to both understand and treat these conditions,” said Alan Jacobson, who was Joslin’s Chief of Psychiatry at the time.
For awhile, I hoped that researchers were close to a Unified Theory of Diabetic Darkness, perhaps even new forms of treatment. No such luck. In 2010, in a “Dialogue on Diabetes and Depression,” Jacobson noted that although there is “a well-recognized association of depression with both type 1 and type 2 diabetes,” the manner in which their simultaneous presence develops “is not understood.” A bit more light has been shed on the matter since then, as described here. But scientists’ knowledge of diabetes and the brain is very elementary; they are like Renaissance mapmakers soon after the New World was discovered, who knew there was something fascinating out there but were capable of depicting it only with vague shapes.
I recently had lunch with Dr. Jacobson, who now runs the Winthrop Research Institute in Long Island. “Are there underlying causes of depression that are specific to diabetics’ brains? There have been some interesting findings but it’s far too early to tell,” he said. ”But chronic disease is a form of loss. When someone is diagnosed with diabetes or has problems with it, the feelings of helplessness and sorrow are not terribly different than they are in other forms of loss, like losing a relative. And that clearly affects brain function.”
So I don’t know precisely how much T1D had to do with the dybbuk I tried to scare away in college. But I’m persuaded there is some kind of biochemical connection between diabetes and inner darkness, and I’m still trying to look back to discern the impact of diabetes on my psyche. That process has had some benefits.
Depressed people tend to heap undeserved blame on themselves. Freud noticed that. For one thing, they often blame themselves for their own depression, their inability to snap out of it and join everyone else who seems to be dancing through life. Been there, done that. And people with diabetes (PWDs) often blame themselves for their inability to tame the beast of blood sugar. Very familiar with that one, too. Whatever else I learned on the quest for a Unified Theory of Dia-Darkness, I was continually reminded of the obvious but too easily ignored fact that neither diabetes nor depression were my fault.
I wish I’d been convinced of that a lot earlier. No medical professional who treated me ever mentioned that depression was often a complication of diabetes. To be fair, they might not have known. But it’s not too late for other PWDs and their loved ones to find out, and at least try to learn how to deal with diabetes’ emotional and psychological burdens, and to stave off needless self-recrimination. “Just being able to tell parents (of diabetics) that depression might be a part of it would be important,” Jacobson said. So would integrating mental health professionals into clinical diabetes care.
This integration happens in some settings, like Joslin, the Kovler Diabetes Center in Chicago, the Children’s Hospital in Pittsburgh, a few others. Jacobson said health care professionals “are much more aware than they used to be” about diabetes and mental health issues. But only a tiny fraction of very sad PWDs are getting the attention they need. Moreover, the only institution devoted solely to helping people handle the psychological burdens of the disease, the Behavioral Diabetes Institute in San Diego, just announced that it is cancelling most of its programs for 2014. Given our utterly screwed-up health care system, it is hard to imagine that attention to mental health will be part of the standard of diabetes care any time soon.
For now, a more aggressive, calculated approach to educating PWDs and their families about the potential for depression is warranted. Parhaps not all PWDs mistakenly blame themselves when they feel so bleak that they can’t get out of bed, or taste their food, or answer the phone. But all of them, and those with less severe depression, deserve to know what took me too many decades to learn.