In just 100 years, our scientific understanding of type 1 diabetes (T1D) has changed immensely.

In the decades following the 1921 discovery of insulin, T1D evolved from terminal illness to manageable chronic illness. Another breakthrough came in 1993, when the Diabetes Control and Complications Trial (DCCT) proved that by improving their glycemic management through intensive insulin therapy, people with T1D could live longer, healthier lives with fewer complications.

Less than three decades later, researchers are exploring another topic that could have huge implications for not only the longevity, but also the quality of life of people with T1D: the importance of mental health.

T1D and Mental Health Comorbidities

T1D is a unique condition in that its treatment for adults relies almost entirely on self-management. The person with the condition is responsible not only for administering their treatment, but also for deciding how and when to do so. Naturally, this heavy, unrelenting burden can affect quality of life.

With this in mind, it is no surprise that T1D often comes with mental health comorbidities. JDRF (formerly the Juvenile Diabetes Research Foundation) reports one in four people with diabetes (type 1 or 2) is affected by depression. Meanwhile, a 2012 systematic review conducted by T. Roy and C.E. Lloyd found that the prevalence of depression in people with T1D is three times higher than it is in the general population. T1D is also associated with an increased likelihood of anxiety disorders and elevated anxiety symptoms.

Despite these common comorbidities, mental health often takes a backseat to other concerns in diabetes care. Considering the serious repercussions of significant glycemic variability, this prioritization makes sense—however, it is counterintuitive. Because T1D treatment relies entirely on self-management, its success is directly impacted by the person’s mental health and wellbeing.

As one 2018 article in the Canadian Journal of Diabetes reports, “Compared to those with diabetes only, individuals with diabetes and mental health concerns have decreased participation in diabetes self-care, a decreased quality of life, increased functional impairment, increased risk of complications associated with diabetes, and increased healthcare costs.”

Even for individuals who haven’t been diagnosed with a condition like depression or anxiety, the mental labour of diabetes is significant. Feeling overwhelmed by the demands of living with diabetes is sometimes called “diabetes distress,” and it can easily lead to unhealthy habits or poor decision-making around treatment.

Due to the nature of diabetes self-management, mental illness and diabetes distress can be challenging to identify. Many behaviors, experiences, and feelings that might otherwise be indicative of mental health concerns are “normal” parts of diabetes management. Consider behaviors like tracking and obsessing over food, feelings of anxiety around losing control of one’s body, or the experience of brain fog and fatigue associated with hyperglycemia. In a person without diabetes, these traits may be cause for concern; in someone with T1D, they are par for the course.

Screening Tools and Mental Health Interventions

The link between mental health and long-term treatment outcomes for people living with T1D is becoming increasingly clearer. In response, researchers have developed various screening tools and interventions tailored to people with T1D. Researchers have developed several diabetes-specific screening tools, including the Diabetes Distress Scale, the Hypoglycemia Attitudes and Behavior Scale, and others.

Clinicians are also working to implement these tools in their practices. T1D Exchange’s Quality Improvement Collaborative (QIC), which uses data benchmarking to set goals for improving T1D care across its 25 member clinics, has developed a Depression Screening Change Package based on data collected from its research. Over the past year or so, the QIC has also worked to increase the frequency of mental health screening from 15 percent to 65 percent across its participating clinics.

The widespread adoption of mental health screening tools is an important step towards addressing mental health concerns in diabetes care. Of course, these tools are just part of the multi-faceted solution to this complex problem.

The Power of Stigma

To seek help for mental health concerns, people with T1D must confront and overcome several layers of stigma related to both their mental health and their diabetes diagnosis.

People with T1D face significant social stigma for having diabetes. In one large 2017 survey published in Clinical Diabetes, 76% of respondents with T1D reported experiencing stigma. This study reported that, “The most widely reported experience of diabetes stigma (regardless of diabetes type) was the perception of having a character flaw/failure of personal responsibility (81%), followed by the perception of being a burden on the health care system (65%).”

Similar attitudes exist around people living with mental health disorders. Social stigma and the self-stigma it causes remain significant barriers to care when it comes to mental health. According to the Centre for Addiction and Mental Health (CAMH), an estimated 40% of people with anxiety and depression do not seek medical help due to stigma.

Considering the social implications of both T1D and mental illness, it’s no wonder that so many people living with T1D struggle to ask for mental health support when they need it.

Increasing Awareness

From fear of hypoglycemia to sleep disruption and beyond, there are so many unique ways that living with T1D has affected my own mental health over the years. As a diabetes blogger and advocate, I hope that by sharing my experiences with these challenges in future posts, I can make some small contribution toward reducing the stigma people with T1D face every day.

I truly believe that through large-scale research studies, individual acts of sharing, and more, we can open up the conversations around T1D and mental health.