Ways To Alleviate Diabetes Distress: Tips and Resources
Key takeaways:
- It's common for people with diabetes to feel distressed or overwhelmed, which can impact management behaviors and quality of life.
- Diabetes distress is the worries, concerns, and fears among individuals with diabetes and their family members as they navigate managing the condition over time.
- Setting small goals, seeking support from loved ones, and working with a healthcare provider can be helpful strategies for managing diabetes distress.
Managing diabetes is often described as a full-time job that you didn’t apply for. Not to mention that the hours are 24/7, there are no days off, and there’s no pay (only bills and the joys of navigating health insurance). Not only does being diagnosed require learning about diabetes, but it also requires developing skills to manage the condition in the long term. For all these reasons, feeling overwhelmed with the daily demands of managing diabetes is common.
About 40% of adults with either type 1 or type 2 diabetes report significant distress at any given time. It's important to note that diabetes distress is not the same as clinical depression. Diabetes distress specifically relates to living with and managing diabetes, covering a broad spectrum of emotions and consequences. Anything from worries about an upcoming appointment to concealing or hiding one’s diabetes from others to disengaging from management behaviors could fall under the umbrella of distress.
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.
“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,” she said.
How can you tell if you have diabetes distress?
It’s normal to feel distressed after being diagnosed with diabetes and at any time after diagnosis. Understanding this and normalizing diabetes distress is the first step to navigating the ebb and flow of these challenging emotions.
Dr. William Polonsky, president of the Behavioral Diabetes Institute and an expert on dealing with the emotional aspects of diabetes, said that filling out one of the recognized questionnaires for diabetes distress – the Diabetes Distress Assessment System (T1-DDAS and T2-DDAS) – can help people understand whether they have distress so they can seek out solutions. There is also a diabetes distress website that provides free assessments for type 1 or type 2 diabetes. You can print out your results to share with your healthcare provider.
Keep in mind that questionnaires only address how you feel at the particular moment you complete them, and diabetes distress can change from moment to moment. Emotional responses to diabetes often depend on individual characteristics, such as age, gender, social and cultural background, life stage, access to support resources, and experiences. Reactions may also vary depending on the type of diabetes diagnosed, its trajectory, and how well it can be managed.
If diabetes distress is severe enough, it can lead to burnout. Diabetes burnout occurs when frustrations accumulate and ultimately result in a disengagement from diabetes self-management behaviors, like not monitoring blood glucose, keeping diabetes a secret, skipping out on management behaviors like carb counting or insulin injections, or avoiding healthcare appointments.
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, as well as 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.”
The connection between diabetes distress and stigma
Research has suggested that another factor that may play a role in diabetes distress is diabetes stigma. Studies have found that greater experiences of stigma, or the feelings of blame, shame, or judgment that a person may experience due to their having diabetes, are associated with increased diabetes distress.
Distress between adults with type 1 and type 2 diabetes differs, and stigma may be a part of that. For instance, a person diagnosed with type 1 may respond to the diagnosis with shock and even relief. They may have concerns about being misidentified as having type 2 diabetes and being blamed or shamed for “causing” diabetes, a common element of diabetes stigma. In regard to management, they may have a fear of hypoglycemia or concerns about the demands of daily management, insulin use, or wearing visible medical devices.
A person diagnosed with type 2 diabetes may react with anger, self-blame, denial, or apathy, feelings often linked to the stigma or internalized stigma surrounding the misconception that type 2 diabetes is self-induced. They may also have concerns over day-to-day management or people’s perceptions of their condition.
In addition to distress, diabetes stigma has also been associated with decreased self-management behaviors, increased depression and anxiety, worse treatment outcomes, and social withdrawal.
Diabetes distress can impact almost every facet of living with and managing diabetes, and the experience of other hardships, like diabetes stigma, can add to the burden and make it difficult to seek support.
Tips for how to cope with diabetes distress
Halliday recommends that providers and people with diabetes consider a holistic treatment approach, which may include stress management techniques like meditation or mindfulness training.
“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.”
Here are some suggestions for how to reduce diabetes distress and burnout:
- Talk with your healthcare provider about your feelings. Work with them to develop a plan that focuses on the aspects most worrying to you. If you don’t feel comfortable with your provider, get a referral to another person.
- Connect with people who will understand you, including family members, friends, and support groups.
- Allow loved ones to help you manage your diabetes. For example, reminding you of appointments, helping monitor sugar levels, and joining you in being physically active.
- Be kind instead of being hard on yourself about meeting goals. Let go of expectations and take one task at a time. Consider focusing less on specific numbers and more on overall patterns and behaviors.
- Reassess your goals. If you’re not achieving what you want, making smaller goals can help bolster a sense of achievement. Make the goals specific and measurable.
- Reflect on your strengths and what is going well for you (even if it is something as small as “I recognized that I’m feeling overwhelmed by my management”). Focus on goals that build upon your strengths or incorporate things you enjoy doing most.
- Take a break. Talk to your provider about any desire to spend a little less time and energy on managing diabetes, and coordinate how you can make changes safely.
It can also help to incorporate more of what brings you joy or happiness, even if that doesn’t feel immediately relevant to diabetes management. A recent study revealed that humor has been a useful coping strategy and tool by promoting connections and encouraging diabetes management.
From funny exchanges with friends and healthcare providers to enjoying a funny television show, just 30 minutes a day experiencing humor has been shown to increase positive changes in health markers. diaTribe’s Spoonful of Laughter campaign has been using the power of laughter to tackle diabetes stigma and normalize some of the challenges of living with diabetes.
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.
Resources and support for diabetes distress
Polonsky said that there is a lack of awareness among many healthcare providers and the public about the prevalence of diabetes distress. There may also be a reluctance to address challenging topics like distress that may feel beyond one’s scope to solve.
Scibilia, Halliday, and Polonsky all emphasize the importance of a solid support system and finding a healthcare provider who not only understands diabetes, but is someone you can communicate openly and honestly with. In some instances, language barriers can further complicate communication about sensitive topics, increasing stress and decreasing engagement with care. In these cases, finding a translator or a provider you can communicate effectively with 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.”
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.
“You can pick up tips with others on how they are dealing with challenges and share what works for them,” Scibilia said. “Whatever you’re going through, someone has also gone through it and can teach you how they handled it.”
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 details 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 later this year or early next year.
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. Remember that you are not alone, and there are many ways to improve the journey.
Learn more about diabetes management and reducing distress here: