Diabetes and Mental Health
Network, Spring/Summer 2006
According to the Canadian Diabetes Association, more than two million Canadians presently live with diabetes. While 90 percent of diabetes cases are type 2 variety — the form most amenable to treatment through modifications to diet and exercise — the number of cases in Canada is expected to rise to three million by the end of this decade.
In Ontario, the Canadian Diabetes Association reports that 706,500 people — or 7.5 percent of the population — have been diagnosed. According to the Ministry of Health Promotion, another 200,000 may be unaware that they have the disease. Diabetes can make its advance without much fanfare. But it is a very serious chronic and progressive disease with links to depression, cardiovascular illness and several other serious health complications, including blindness and kidney failure. It is a difficult disease to live with and can be a challenge to manage — both medically and psychologically.
At the Centre for Research in Women’s Health at Women’s College Hospital in Toronto, psychiatrist Dr. Mona Gupta is leader of the Mental Health and Medicine program, which is devoted to the care of patients who have concurrent medical and psychiatric problems. Most of the patients who see Dr. Gupta have had a diagnosis of some major medical condition already. She herself has a special interest in diabetes and works very closely with the hospital’s diabetes education program (TRIDEC) and the endocrinologists, based on a model of integrated service delivery.
Among the mental health problems that come her way, depression is common. “From a traditional medical point of view,” says Dr. Gupta, “the main things we tend to see are major depression, or people being troubled with depressive symptoms.” Increasingly, research is confirming links between diabetes and depression. It is estimated that people with diabetes are twice as likely to experience depression as those without. And as one TRIDEC handout explains, “Depression may make diabetes more difficult to manage and diabetes can make it harder to recognize and treat depression.”
Dr. Gupta and her colleagues also see anxiety symptoms and troubles around eating. Managing the demands of eating, checking sugars, and, for some, taking medications can take its toll over time, particularly when clients realize that these demands are not temporary but will define a new way of living and being.
People also have difficulty with their diabetes in ways that transcend diagnostic categories, observes Dr. Gupta. “They may have depressive symptoms, anxiety symptoms, or trouble with their eating, but if you look a little beyond that, there are ways in which the management of the diabetes has been caught up in a difficult interpersonal relationship.” So, while management of the illness is a problem, it may be occurring in the context of an abusive or conflictual relationship.
“Or,” she adds, “you might find others where the experience of managing the illness is quite traumatic, and it reactivates upsetting or traumatic experiences from earlier in life. And while those people may not necessarily have classic post-traumatic symptoms, their experience gets channeled into the way they manage their illness — where management of the illness is almost like re-traumatizing themselves. So we see things that don’t fall cleanly into the usual diagnostic categories.”
TRIDEC — the Tri-Hospital Diabetes Education Centre — was the first diabetes education centre established in Ontario, 35 years ago at Women’s College Hospital in Toronto. According to Gwen Morgan, a TRIDEC social worker, at the time of its inception TRIDEC was pioneering in its recognition of psychosocial issues and the need to treat the whole person and not just the disease. Today there are 50 diabetes education centres across the province, most of them operating from hospitals.
On an ongoing basis, TRIDEC offers a two-day educational program for clients diagnosed with either type 2 or pre-diabetes. The course is accessed by both the newly diagnosed and those not so new to the illness. The course helps clients learn about diabetes and develop the self-management and coping skills they’ll need to live well with this chronic disease. From Dr. Gupta’s perspective, one of the things that’s so great about working with TRIDEC and the endocrinology group is that “they have a very sensitive appreciation of the fact that management of illness is a psychological task — it’s not just a medical, scientific task.”
One component of the TRIDEC program focuses on stress and stress management. For many, the diagnosis itself is a major stressor. Dr. Gupta explains that “there’s a huge process there of grieving, of feeling angry, of feeling overwhelmed, of being almost existentially challenged. The question for many is, ‘Why me? What have I done?’ And individuals will answer that question in various ways.”
The challenges only start there. Diabetes is largely an invisible disease in that others may not know a person has diabetes without being told. Patients tell Dr. Gupta that when they’ve told others, the response has often been, “Well at least you don’t have cancer,” or “At least you haven’t had a heart attack.” Compared to these other conditions, diabetes tends not to garner much sympathy.
“I think it makes the whole internal psychological process that much more difficult,” Dr. Gupta reflects, “when you feel like ‘I’m really struggling inside, but everybody else seems to think this is no big deal, so why am I having so much trouble?’ There’s a conflict there between what you’re going through and what you think you should be going through.”
“One thing that I find with adults is the remarkable extent to which they feel that they’re facing the disease on their own, that they don’t have support. Even if there are people in their lives, they can feel that those people either don’t understand or can’t really help them.” She adds that this type of experience points to the limits of self-care and reminds us of the ongoing need for access to high-quality supports and services. Otherwise, she says, “I do think it does leave people with that feeling of being alone.”
Diabetes is a difficult disease at the best of times. For those who are living with both a psychotic disorder and diabetes, the challenges are even greater. The psychotic illness itself can make self-care in general more difficult. And those living with psychotic disorders often face employment, income and housing instability and related food security concerns. So, managing diet and related behaviours such as exercise can pose an extreme challenge for this population.
Dr. Gupta suggests that this issue has not yet been adequately tackled by the diabetes community. Recognizing the additional challenges that many with chronic mental illness face — such as difficult financial situations, limited family contact and lack of community support — she thinks that this problem is going to challenge the way in which diabetes education has been delivered up until now because of the presumptions that are made about patients and their abilities.
“I don’t think many of those assumptions can apply to that group. And I think there may be a beneficial spin-off to the people who don’t have chronic psychotic disorders, because it may be by developing new models of education and care that we’re actually able to take a bit of pressure off the people who don’t have psychotic disorders, because maybe they too will be offered a bit more support from the institutional providers.”
“I think that people can experience the trend towards care in the community and self-care as a lack of support or even as abandonment, rather than an opportunity for independence and autonomy. I think when we finally get a grip on the massive increase in diabetes amongst people with chronic psychotic disorders, I don’t think we’re going to be able to use those strategies and I don’t think that promotion of self-care and care in the community is going to be the solution.”
“Models like TRIDEC where people come several times, often over a course of weeks, among other things, provides people with the opportunity to meet others with similar issues and share information, ideas and support. Because these sessions are open to participants at any stage of their illness, and people can attend as needed over time, people are able to benefit from a wide range of knowledge and experience.” They in essence become hubs of psychological and social support.
Dr. Gupta is emphatic in stating that a chronic disease is a “deeply transformative experience. Many, many people struggle with it, and people experience their struggles in a variety of ways. There is no shame, and there is no surprise, that somebody would have difficulty coping with that. And I just want to make it clear that while it may be a minority of people who desire or need the services of a psychiatrist or social worker to help them with their struggles, the struggle is very common.”
Ultimately, how they learn to engage in that struggle will determine how well a person is able to cope with and effectively manage their disease.
For more information
Canadian Diabetes Association
Diabetes Resource Manual for Health Clinicians
Women’s College Hospital