Ways to Alleviate Diabetes Distress: Tips and Resources
By E.J. Saunders
People with diabetes may feel overwhelmed by the daily tasks of managing the condition, which can lead to burnout. Here are some suggestions on how to reduce some of that distress.
For those with diabetes, distress related to the condition can impact self-care and quality of life. Diabetes distress refers to a broad spectrum of emotions and concerns among individuals as they manage their diabetes over time and is a common experience with diabetes. Not only does being diagnosed require learning about diabetes, but it also requires developing skills to manage the condition in the long term.
About 40% of adults with either type 1 or type 2 diabetes report significant distress at some point. It is also important to note that such distress is not the same as clinical depression. It covers a broad spectrum of emotions and consequences, ranging from worries about an upcoming appointment to pretending one doesn’t have diabetes.
Renza Scibilia, a blogger, activist, and writer with type 1 diabetes, said her journey has had its ups and downs. Talking with Scibilia over video from her native Australia, it’s hard to see how this energetic person sitting in a vibrant color-coordinated library could have any bad days at all. But she said, “There are periods when I feel like I can manage it and feel on top of it; but feeling like I have to keep on top of things can be frustrating, and the fact that I have to ‘do diabetes’ is something I do resent.”
*Editor’s note: Scibilia has been sharing her journey with type 1 diabetes on her blog Diabetogenic since 2011 and is a dedicated advocate for people in the diabetes community. She also writes occasionally about her experiences with diabetes for diaTribe.
How can you tell if you have diabetes distress?
It’s normal to feel distressed after being diagnosed with diabetes and any time after diagnosis. Understanding this is the first step in better managing the emotional reactions to having diabetes.
Dr. William Polonsky, president of the Behavioral Diabetes Institute and an expert on dealing with the emotional aspects of diabetes, noted that filling out one of the recognized questionnaires for diabetes distress (PAID – Problem Areas in Diabetes scale, and DDS – Diabetes Distress Scale) can help people understand whether they have distress so they can seek out solutions. That being said, questionnaires only address how you feel at the particular moment you complete them, and diabetes distress can change from moment to moment.
An emotional response to diabetes may vary depending on individual characteristics, such as age, gender, social and cultural background; life stage; and experiences. According to the ADA Mental Health Workbook for Providers, “Reactions are likely to vary also depending upon the type of diabetes diagnosed and the person’s beliefs about the condition, its trajectory, and how well it can be managed.”
Distress between adults with type 1 and type 2 diabetes differs. For instance, a person diagnosed with type 1 may respond to the diagnosis with shock and even relief. In regards to management, they may have a pronounced fear of hypoglycemia or become concerned about being misidentified as having type 2 diabetes. A person diagnosed with type 2 diabetes may react with anger, self-blame, denial, or apathy, and have concerns over day-to-day management.
The diabetes distress website provides free assessments for type 1 or type 2 diabetes, and you can print out your results to share them with your healthcare provider.
A more severe form of diabetes distress is diabetes burnout. Diabetes burnout occurs when frustrations accumulate, and there is disengagement from diabetes care, like not monitoring blood glucose, unhealthy or uncontrolled eating, and other risk-taking behaviors.
Jennifer Halliday, associate research fellow at The Australian Centre for Behavioural Research in Diabetes, explained that diabetes burnout has three key elements:
Feeling too physically or mentally exhausted to manage your diabetes
Feeling detached and distancing yourself from diabetes, and avoiding routine screening
Feeling you don't have control of your diabetes and having a sense of hopelessness
Many people with diabetes, and those who care for someone with diabetes, can focus on physical and biological outcomes like weight, time in range, or A1C. However, there’s a difference between the appearance of doing well with “good numbers” and feeling emotionally well.
“Just because your A1C is at an optimal level does not mean you have low diabetes distress,” Halliday said. “Diabetes distress is the emotional response to living with diabetes. If untreated, mild diabetes distress can lead to severe distress and/or depression, or diabetes burnout.”
What to do
Halliday recommends that providers and people with diabetes consider a holistic treatment.
“It's about seeing the whole person in the individual context and understanding there are often social and psychological factors in managing their diabetes outcomes,” she said. “Practitioners must work with the person to determine what the specific challenges are.”
A holistic care program may also include meditation and mindfulness training. A study recently revealed an “improvement in the glycemic and mental health indices in patients with type 2 diabetes following mindfulness training.”
Tips on how to cope with diabetes distress:
Develop a plan with your healthcare provider to focus on the aspects most worrying to you.
Connect with people who will understand you, like specific family members, friends, and support groups.
Talk with your healthcare provider about your feelings. If you don’t feel comfortable with your provider, get a referral to another person.
Allow loved ones to help you manage your diabetes — remind you of appointments, help monitor sugar levels, and join you in being physically active.
Be kind to yourself instead of being hard on yourself about meeting goals. Let go of expectations and take one task at a time.
Take a break. Talk to your provider about any desire to spend a little less time and energy on management of diabetes and coordinate how you can make changes to take a break safely.
Re-assess your goals. If you’re not achieving your goals, make smaller goals to feel a sense of achievement. Make the goals specific and measurable.
A recent term, diabetes resilience, is a more positive spin on diabetes distress. Whereas the term diabetes distress focuses on how the person may feel negatively about their disease, resilience focuses on positive behaviors and on how people can thrive despite the challenges. For example, someone more creative could be excited to find new solutions to barriers.
A recent study revealed that humor has been a useful coping strategy and tool by promoting connections and encouraging diabetes management. From humorous exchanges with friends and healthcare providers to enjoying a funny television show, just thirty minutes a day experiencing humor has shown to increase positive changes in health markers.
What do you enjoy doing, and how can you integrate that skill or task with managing diabetes? Learn how to harness your strengths to make the journey easier.
Polonsky said that there is a lack of awareness among many healthcare providers and in the public about the prevalence of diabetes distress. If you are challenged with finding providers with experience in dealing with diabetes distress, sometimes finding professionals whom you feel comfortable talking with can be helpful.
Scibilia, Halliday, and Polonsky all emphasize the importance of a solid support network and finding a healthcare provider who focuses on diabetes care with whom you can communicate. Poor communication due to language issues can lead to another level of stress and less engagement with care; finding a translator or a provider who you can communicate with effectively is important.
Scibilia said she has a great psychologist who helps her identify when she’s getting closer to burnout and helps her reconsider her behavior and thoughts. She added, though, that her peers are just as important as her other self-management tools.
“Other people with diabetes help me make sense of my own diabetes,” Scibilia said. “I connect with people who have walked that path beforehand. It’s even more important to connect given COVID.” Living in Melbourne, Australia, where they endured extended lockdowns, Scibilia said it was crucial to call friends and even visit a neighbor to talk about all sorts of topics, diabetes-related or not.
Peer support takes many forms, including one-on-one mentoring, support groups, and online forums. You can use social media and online communities to find peer support. These programs help people with diabetes with their self-management, resourcefulness, social and emotional support, access to proper resources to help navigate the health system, and ongoing support reflecting the long-term nature of the condition.
Studies have shown that those who are more involved in an online community tend to have lower blood glucose levels. Visiting or writing personal blogs about diabetes can also provide a platform for discussing personal experiences.
The ADA Center for Information provides information on how to connect with local resources. In Australia, the National Diabetes Services Scheme (NDSS) has a helpline offering advice on self-management and other inquiries.
Since its publication in 1999, Polansky’s book, “Diabetes Burnout: What to Do When You Can’t Take it Anymore” has been a must for many people wanting to learn about diabetes distress. An updated version is set to be published next year.
Scibilia’s blog is an excellent read as she writes as if you’re listening to your best friend talk about her life with no watered-down emotions. You almost wish Scibilia would cover topics beyond diabetes so you could hear her relatable and lively thoughts on the subject.
Though books and blogs are helpful to know you are not alone, Scibilia said the best thing for her is connecting with people with diabetes. “You can pick up tips with others on how they are dealing with challenges and share what works for them,” she said. “Whatever you’re going through, someone has also gone through it and can teach you how they handled it.”
People like Scibilia, Halliday, and Polonsky have made an important impact in educating providers and people with diabetes about diabetes distress, but the path is still long. Their most strident message is for people with diabetes to know there is hope. Please find someone to talk to about your worries and experiences.
You are not alone, and there are many ways to improve the journey.