Managing the stress of living with type 1 diabetes
Like many young girls, Olivia Di Pietro enjoys going to birthday parties with her friends. Yet when the bowls of snacks start circulating, along with the chocolate cupcakes and cans of soda, her thoughts immediately turn to the insulin pump she is wearing and what she can eat. Unlike the other children, Olivia – an 11-year-old with type 1 diabetes (T1D) – knows her food choices will affect her blood sugar readings. And that is something she has had to live with for the past seven years.
“I really wish I didn’t have this disease,” Olivia admits candidly. “Looking back, I can still see myself as a little girl sitting on the examining table at the hospital, terrified, as my parents and the doctor told me that I needed insulin injections to live. All I remember thinking is: Why me?”
As anyone living with diabetes knows, the demands of self-care are constant and learning to adopt a large number of new behaviours can often leave a person feeling burdened, anxious, frustrated – and even depressed. Managing a chronic illness can be challenging, and developing coping strategies is key for maintaining health, balance and happiness.
Debra Glass is a Toronto-based diabetes counsellor who has worked with people living with diabetes and their families since 2010. Offering talk therapy, support and practical advice, her primary goal is to help individuals become good self-managers of their condition by mastering all the information they need to know and developing the skills they need to successfully integrate diabetes into their everyday life.
As someone who has lived with T1D for the past 28 years, Glass is well-versed in the daily challenges of living with a condition that requires continuous self-care.
“Diabetes is the kind of thing that you think of 24/7,” says Glass. “That means anytime you eat, exercise, etc., your mind is going. You have to take insulin and test your glucose levels every day, which can grow tedious and wear you down. It is a big chore to add to an already crazy, busy life.”
Like any chronic disease, the stress of having to think about diabetes all day every day can take a toll on one’s mental health. There is also the risk of developing diabetes distress, which involves feeling extreme frustration with blood sugars, bogged down by all the daily management tasks, or isolated in the diabetes experience. Prolonged diabetes distress can lead to ‘diabetes burnout,’ a term used to encompass the feeling of being unable to cope with diabetes.1
Having served as an administrator in the post-secondary education sector for 30 years, Glass decided to establish a private counselling practice in 2010 and work exclusively with people living with diabetes because she felt that the emotional impact of diabetes was often overlooked.
“Some people are completely blown away following their diagnosis and often need extra help after meeting with their healthcare team because they feel overwhelmed from the information overload,” she relates. “They also struggle with consistency when managing their diabetes – especially the fingerpricking, which they find annoying as it can’t be done on the go. In fact, people who have had diabetes for years also dislike finger pricking. Additionally, they may simply burn out and let their care slide, which can lead to other problems.”
Feeling depressed, anxious, frustrated and/or overwhelmed living with diabetes? If so, you do not have to face it alone.
For information on diabetes counselling, including diabetes self-management and support groups, please contact your health care provider for a referral in your area.
Olivia credits family members for helping her through rough days, especially when her glucose readings are high despite careful self-monitoring.
“My mother and my little sister are always there to give me a comforting hug,” she says, “and my mother is constantly coaching me to think positively and express my feelings, which helps a lot. Yes, diabetes sucks, but they make me realize that I am lucky to be alive and that my condition can be managed since there are worse things in the world.”
As is the case with many adults living with T1D, children with T1D can sometimes experience depression. Common symptoms include irritability, anger, tantrums, and stomach ache or headache. When these occur, it is important for parents to raise the issue with their child’s healthcare team or seek the services of a mental health professional who can help promote pro-diabetic coping behaviours.
Cheryl Harris-Taylor is a social worker at Women’s College Hospital in Toronto. In 2012, she was involved with the establishment of the Young Adult program, a clinic for 18-to-30-year-olds living with T1D.
“Many people I see often feel judged,” says Harris-Taylor. “If their readings are not good, they feel guilt and shame because they think they are not doing well in terms of managing their disease. Others are just tired of the whole process (of self-management). There is a fear that resonates as well, and all the highs and lows they experience can create a depressive mindset.”
The role of a social worker, says Harris-Taylor, is to encourage people with diabetes to adopt new healthy behaviours while understanding and dispelling the unhealthy ones, and arm them with coping strategies to improve their management and better communication skills to improve relationships within the family. Given the link between the psychosocial issues of diabetes and depression, early psychological interventions can have a positive influence on self-care and diabetes control.
“Often people won’t tell anyone they have diabetes because of the perceived stigma attached to it,” Harris-Taylor relates. “Most just really need to talk and feel supported.”
Harris-Taylor says people living with diabetes just want to be given the same consideration as people without diabetes.
“A patient once came in and drew all these numbers,” she recalls. “When I asked her about it, she said that is how doctors and healthcare staff treat her – like a number – when all she wants is to be treated like a person. It is important that medical professionals understand who the person is and what they are going through from the onset.”
Have you been recently diagnosed with type 1 diabetes?
Consider the JDRF mentorship program which pairs you with someone who can help you navigate your way through the early stages of your diagnosis, and share their experiences and coping mechanisms.
Olivia couldn’t agree more. During her recent school presentation on renowned Canadian medical scientist and co-discoverer of insulin, Sir Frederick Grant Banting, she told her classmates, “Diabetes is not enjoyable to have, but at least I am able to talk about it.”
Asked what advice she would give to others living with T1D, Olivia is quick to respond.
“No matter what life throws at you, there is always a way to make the best of it,” she says. “Let yourself feel, because it’s healthy to share your feelings. When you’re discouraged, do something you enjoy, like listening to your favourite music, exercising or writing in a journal. Yes, there will be good days and there will be bad days, but you can get through them, especially with support.”
1. Polonsky WH. Diabetes Burnout: what to do when you can't take it anymore. American Diabetes Association, New York 2000.