April 16, 2024 Distressed by diabetes

Bob Lydiate may be a pastor but that does not mean he found it easy to accept with grace his diagnosis of type 2 diabetes in 2011. In fact, it was just the opposite. The 69-year-old father of three, who is a pastor at Healing Hearts Ministries in Regina, became depressed when he learned that he would need to take insulin for the rest of his life. It took him a few months to emerge from those dark feelings and come back into the light. “It was a feeling of despondency, where I just didn’t really care about life and facing this disease,” he says. Bob even stopped taking his insulin for a month, until his blood sugar (glucose) levels soared dangerously high. “When I started feeling tingling in my toes and fingers, I knew I had to face it.”

Signs of diabetes burnout

Many people with diabetes experience the same feelings as Bob. Whether it is despair over the initial diagnosis, feeling overwhelmed by the constant demands of managing this never-ending condition or a sense of hopelessness in controlling blood sugar levels, it is no wonder some people reach a point where they want to just give up. “People with diabetes will spend all this time trying to stay well and when they don’t get the results they hope for, it’s discouraging and often they experience depression and anxiety,” says Crystal Johnson, who lives with type 1 diabetes and is a Vancouver-based registered clinical counsellor, whose patients have chronic health conditions. “They will worry about their future and sometimes it gets to the point where they neglect their health. It just feels like too much and instead of organizing their resources, they pull back and start to shut down.”

Diabetes burnout can also result in people skipping appointments with healthcare providers, taking more sick days off work, eating whatever they want, cutting themselves off from friends and family, or not exercising, especially during and even after the pandemic. “For some, burnout may show up as a generalized feeling of anxiety all the time, caused by the idea that they must always be hyper-vigilant about managing their diabetes,” says Johnson. She points out that while it is good to have positive role models, it can also be discouraging. “It can be difficult when you hear about someone with diabetes who has climbed Mount Everest—and you are having trouble just counting carbs.” She adds,

Asking for help and reaching out to others might not be what you feel like doing when you are having a hard time, but it can really help.

Distress vs. depression

Dr. Michael Vallis is a psychologist and associate professor at Dalhousie University in Halifax, and co-author of the Diabetes Canada 2018 Guidelines for the Prevention and Management of Diabetes in Canada chapter on diabetes and mental health. He says people with diabetes who are struggling are often misdiagnosed as having depression or anxiety when what they are really dealing with is diabetes burnout, or diabetes distress, as he prefers to call it. He defines the condition as “the emotional burden of living with diabetes and the stress that can be associated with the work of managing diabetes.”

Dr. Vallis led the Canadian research for the international Diabetes Attitudes, Wishes and Needs Study (DAWN2), a survey of 9,000 patients in 17 countries, which found that the risk of depression among people with diabetes was 13 per cent, while the risk of diabetes distress was 53 per cent. “If someone with diabetes is having distress due to mental health problems, then having a conversation with a mental-healthcare provider is important, but often they don’t need another diagnosis [such as depression],” he says. “I get distressed myself when I see someone with diabetes distress who gets the label of depression. And it happens all the time. Often the distress is directly related to their diabetes and that makes it a diabetes issue, not a mental health issue.” 

What does distress look like?

Dr. Vallis breaks diabetes distress into four areas: emotional distress—feeling overwhelmed by having diabetes; regimen distress—relating to all the work involved in proper diabetes management; patient/healthcare provider distress—when patients feel judged by their healthcare providers and worry about disappointing them by not taking proper care of themselves; and social support distress—when people feel unsupported or alone in dealing with a chronic condition. He adds,

There needs to be an understanding that diabetes distress is part of the experience of living with diabetes, and we need to normalize this.

Dr. Vallis is developing a tool that healthcare providers can use to determine whether patients are experiencing diabetes distress. He says healthcare professionals need to move from a “teach and tell” approach with patients to a “collaborate and empower” approach that asks, “How can I work together with you and support you in feeling confident about managing your disease?”

The goal, Dr. Vallis says, is to see fewer people with diabetes diagnosed with depression if what they are experiencing is the stress of living with diabetes. “We use the word ‘depression’ because it’s the only word we know in this context,” he says. “But often ‘diabetes distress’ is the more appropriate term.”

What can help?

Bob says he is relieved his diabetes distress is behind him. What helped the most, he adds, was talking to other people with diabetes in his church, sharing his story with others as a volunteer with Diabetes Canada, and knowing that he had support, including his faith community. Prayer helped too. “When I started talking to God about it and being real about how I was feeling, things improved,” he says. “And it really got better when I found more purpose around helping others. He adds,

The most important thing is to have support around you. The rest you can figure out. Reach out and talk to others who have had diabetes for a while and can share their knowledge.

Battling burnout: Five steps you can take today

Vancouver registered clinical counsellor Crystal Johnson offers these tips for dealing with the challenges of diabetes burnout. 

1. Acknowledge that diabetes is sometimes hard. Having compassion for yourself is a powerful way to move through distress. The act of naming your emotional experience often helps to defuse some of the distress and allows you to admit that you may need to take some action.

2. Get out in nature. If it is possible and you feel comfortable given the COVID-19 pandemic, go outside to move your body or find a place to sit quietly. Fresh air and green spaces help us to refresh and to recall the world beyond our four walls.

3. Notice the small positives. We don’t want to dismiss the difficulties and yet we know our minds tend to see through the lens of distress when we are in it. Recognize the small wins like wearing a favourite shirt or remembering to give yourself insulin.

4. Get creative. Activities such as singing, dancing, painting or photography can offer you a feeling of accomplishment and separation from your identity as a person with diabetes. Journalling (which is something Crystal does each day) is also a way to process some of the worries and get them out of your head.

5. Ask for help. Reach out to your partner, a friend, a member of your healthcare team, a spiritual advisor, or even a Facebook group and let them know you are struggling. “It can be healing to see there is a community of people who can relate.”

Did you know?

When you are first diagnosed with diabetes, you will likely feel a wide range of emotions, such as shock, anger, sadness and fear. It is normal to feel this way and to go through several emotional stages as you come to grips with having a chronic condition. Learn more in Mental Health and Diabetes.

Photos: Richard Lam Photography (Crystal Johnson); Jason Zwicker (Bob Lydiate).

This adapted article appeared in Diabetes Dialogue.