Diabetes is a complicated disease for anyone to live with. There are numerous self-management requirements, which can include medication and lifestyle, and can take up a significant amount of time. If missed, they can have very real consequences. If you have type 2 diabetes, you may have to live with the social stigma that you developed it from being an unhealthy person, which is not always the case.
People living with diabetes require varying degrees of support for their mental health just as much as they require their medication in order to live a balanced life and manage their disease correctly.
To get an in-depth view on this complex subject, we interviewed Dr. Michael Vallis. Dr. Vallis is a registered Psychologist at Capital Health and Dalhousie University and an expert in diabetes and mental health.
Dr. Vallis asks “Would it surprise you to know that the most typical desire of people living with diabetes is to be as normal as possible? Diabetes management requires you to be abnormal.” If you are an emotional eater, for example, you’ll be told to follow a new diet that doesn’t allow you to use this coping mechanism. In order to get healthy, you have to find new ways of coping that don’t involve emotional eating – something that is usually best done with the help of a diabetes educator or, in more extreme cases, a mental health professional.
Mental health implications of diabetes: “Diabetes Distress”
When discussing mental health and diabetes, Vallis says that it is important to distinguish between the distressing factors of living with diabetes and mental health disorders.
The term for the mental health challenges experienced by people living with the disease is “diabetes distress”. “Understanding the experience of diabetes involves a need to understand the psychological dimension of living with diabetes, not as a weakness in you or a character flaw, but as a disease that you have to manage”. Those with diabetes distress are not necessarily clinically depressed, but have to deal with societal stigma and discrimination, the stress of maintaining proper diabetes management, and much more.
One of Dr. Vallis’ patients had an experience that is common for many people living with type 2 diabetes. Every time he put the Canada Food Guide on the kitchen counter for his wife to look at, she would take it away and say “that’s your problem, not mine.” This patient now faces not just living with the disease, but having a lack of support in a very critical place – his home and his relationship. With education and support, this patient’s life could be turned around, and not necessarily with the intervention of a mental health professional.
Those with mental health disorders are typically struggling with clinically diagnosed disorders in addition to diabetes, and these individuals need regular mental health care in addition to medical care for their diabetes.
Diabetes Attitudes, Wishes and Needs Study (DAWN2)
The latest Diabetes Attitudes, Wishes and Needs study (DAWN2) drew on data from 16,000 participants around the world, including 9,000 people living with type 1 and type 2 diabetes, their families, and their health-care providers. The base rate of diabetes distress in the individuals living with diabetes was 48-53 per cent, while 12-13 per cent of them identified as being likely to suffer from depression. For comparison, six per cent of the Canadian population suffers from depression. Dr. Vallis is one of the authors of the study.
This means that about half of those living with diabetes are living with diabetes distress, and 12-13 per cent of those are at risk of being clinically depressed; which is almost twice the prevalence of depression among the general Canadian population. The study shows that it is vitally important to deal with the psychological and psychosocial issues surrounding diabetes in order to help people living with diabetes have a better quality of life.
Managing the four aspects of diabetes distress
Diabetes distress has four distinct aspects:
- Emotional burden
- Regimen distress
- Patient provider distress
- Social support distress
To determine the emotional burden of living with diabetes, patients are asked “if diabetes is an object you carry, what would you compare it to?” They are then given the option of a one pound loaf of bread, a five-pound sack of flour, a two-ton truck and other criteria. This helps medical professionals and the patient assess how much emotional bandwidth diabetes takes up in their lives.
Regimen distress describes how much sticking to a self-management regimen distresses the patient – items such as counting carbohydrates, tracking blood sugar levels, ensuring medications are taken and so on.
Patient provider distress refers to the relationship that a patient has with their health-care providers. To what extent does the patient feel judged or misunderstood? Patients are more likely to put off medical visits when they feel like their health-care provider is judging them for their disease or lifestyle.
Social support distress involves the support of friends and family. The patient with the issue with the wife who didn’t want to follow the Canada Food Guide, for example, would be perceived as suffering from social support distress.
Fighting Diabetes Distress with Diabetes Empowerment
Diabetes empowerment is about helping people living with diabetes feel like they are in control and to reduce the stress and fear of living with diabetes. People with diabetes live with fear of hypoglycemia, fear that they will be judged for their condition, and many of the other issues that live under the umbrella of the four aspects of diabetes distress.
Those living with type 2 diabetes, for instance, can see aspects of their disease, such as having to transition to taking insulin, as a failure on their part rather than as something that may have to happen eventually. The typical reaction to being told they need insulin, according to Dr. Vallis, is “I’ll be good, I’ll try harder” rather than accepting the medication. If a person living with diabetes is empowered to not think of insulin as a failure, they will be able to better manage their condition.
Empowerment happens when the person living with diabetes, their friends and their family are better informed about diabetes. For the individual with diabetes, this can come in the form of support groups and participating in diabetes education events. Family and friends can also attend some educational events so they can provide informed support. The DAWN2 study showed that Canada had the greatest use of any country of diabetes education services, which is promising for promoting diabetes empowerment.
Delivering Mental Health Support to People Living With Diabetes
Stress management is very important to managing diabetes. When you are stressed, your self-management decreases, which can have serious implications for people living with diabetes. Diabetes carries with it a number of extra tasks that the average person doesn’t have to do, and these tasks can fall off if someone is feeling stressed out.
In order to help people living with diabetes, Dr. Vallis believes in promoting a stepped collaborative health-care model that sees individuals getting the help they need from the appropriate professionals. If a patient tells their doctor that stress is keeping them from a healthy self-management routine and eating right, that doctor can then refer them to a nutritionist and a mental health-care professional who can help get them back on track. Dr. Vallis helped to create a six-session psychosocial intervention program to be used by diabetes education providers across Canada; in many cases this may be all a person living with diabetes needs rather than being referred to a mental health professional, which can take a significant period of time that a person at risk may not have.
With the stepped-care collaborative model Dr. Vallis suggests, mental health support can be delivered to people living with diabetes when they need it through the use of diabetes education services, and referrals to a mental health professional where necessary. It is up to health-care providers to help individuals navigate the system so they can find the support they need when they need it. It is up to those living with diabetes to seek out the programs they need to become informed – and empowered – to live well with their disease.