Mapping the Mental Toll of Diabetes
By Hope Warshaw
Explore key insights from the second annual Diabetes + Mental Health Virtual Conference. Learn about the intersection of these two critical health areas from experts, many of whom live with diabetes.
diaTribe attended the second annual Diabetes + Mental Health Virtual Conference on May 5-6, a two-day conference featuring top-notch speakers – many of whom live with type 1 or type 2 diabetes.
The conference is the brainchild of two clinical therapists who have type 1 diabetes, Allison Nimlos and Sara Adams. Nimlos, who lives in Minnesota, has had diabetes for 29 years. Her first foray into the diabetes community was as a writer. Today, Nimlos has a counseling practice and offers diabetes coaching to people worldwide.
Adams has latent autoimmune diabetes in adults (LADA), a slow-progressing form of diabetes that shares features of both type 1 and type 2 diabetes. She co-owns a group psychotherapy practice in New York, where she provides care in the diabetes and mental health realm.
Why talking about diabetes and mental health is important
“After becoming a therapist, I spent several years speaking about diabetes and mental health. I noticed that one 45-minute talk to cover the gamut of diabetes and mental health was nowhere near enough time,” Nimlos said.
“More issues need to be covered and in greater depth. Diabetes is not just a physical illness. The mental and emotional toll of management is significant,” she said.
Adams’ echoed her sentiments. “I wanted to offer an educational space for the diabetes community where mental health could be discussed and normalized,” she said.
Nimlos approached Adams in the fall of 2021 about partnering on the conference, and with two successfully completed, they hope for many more on the horizon. Originally, they founded the conference with the following goals:
- Give people with diabetes, their loved ones, and healthcare providers an equal understanding of how diabetes impacts mental health and vice versa.
- Consider emotional and mental health just as important for people with diabetes as their glucose levels, time in range, and other metabolic parameters.
- Empower people with diabetes and caregivers by knowing that they're not alone and there’s a growing diabetes community to connect with virtually or in person.
- Help others realize that the emotional health challenges individuals with diabetes experience are normal.
Last, Nimlos and Adams want people with diabetes to feel hopeful – not hopeless – and that the diabetes community both individually and collectively helps improve mental health.
Key takeaways from the conference
It also covered topics like the emotional toll of stigma and shame, how diabetes factors into food and body image, the impact it has on dating and relationships, diabetes as a life trauma, and much more. Here are some of the key takeaways.
Mental health challenges are common
Managing diabetes remains challenging and burdensome, despite many positive advances in care. Dana Lehman, a psychologist and person with diabetes, cited research that shows nearly 43% of people with diabetes meet the criteria for a mental health disorder at some point in their life.
Lehman added that this statistic is likely a modest estimate. Some of the unique stressors of having diabetes include daily self-care requirements, common misconceptions about it, and the potential physical effects of the condition over time.
Burnout is a reality with diabetes
It’s important to recognize the signs of diabetes burnout. If you can feel burnout setting in, try to address it immediately and aggressively. Early identification can help you move through it more quickly.
Typically, there’s some apathy about diabetes self-care. However, burnout manifests differently in each person and what works best will vary.
Be loud and proud about your diabetes
“Share with the outside world the realities of having and managing diabetes, along with all of the related trials and tribulations,” said Clarke.
She said that others can make ignorant comments about you, your body, and your diabetes care. This isn’t necessarily done to be malicious, they just simply don’t have accurate knowledge or aren’t aware of the existing diabetes-related bias and stigma.
“Share positive realities about having diabetes without sugar coating it,” said Jane Dickinson, president-elect of the Association of Diabetes Care and Education Specialists (ADCES) and leader in the global #languagematters movement. “The language we as people with diabetes use matters, as does our attitude and tone.”
Presenting a positive reality is inspiring and can help others better understand diabetes and what goes into managing it, she said.
Life with diabetes doesn’t exist in a silo or vacuum
Because diabetes affects so many aspects (physically and mentally), it must be looked at holistically, or within the complete context of your life. Persis Commissariat, who was diagnosed with type 1 diabetes as an 11-year-old, is now a clinical psychologist at the Joslin Diabetes Center. She has made the topic of identity and diabetes her area of research and expertise.
“You get a new label and everyone demands that you change your life immediately in response to the diagnosis,” she said. Commissariat shared three distinct ways researchers have suggested that people might attempt to adjust to managing a chronic illness detailed below:
Contain it. By containing diabetes, people attempt to keep diabetes separate from their sense of self, possibly ignoring or rebelling against it to maintain a sense of who they were prior to diabetes. This is a maladaptive strategy.
Embrace it. People who embrace diabetes may feel deeply connected to the condition as part of their identity. They may feel it provides meaning to their lives.
Incorporate it. Those who incorporate diabetes view it as just a piece of who they are, but not the entirety. They build upon their identity by integrating diabetes into it.
No matter what age, developing diabetes without a doubt affects a person’s identity and requires adjustments, she said. Commissariat’s research highlights opportunities for more positive adaptation by incorporating diabetes into one’s identity through stigma management, adjustment to the interference one believes diabetes is making in their life, and finding benefits to engaging in diabetes management or living with diabetes.
Adam Brown succinctly wrapped up a healthy attitude about diabetes self-care with these words. “I don’t ‘control’ my diabetes: I influence it, manage it, balance it, hold it, and carry it.”
Growing awareness of diabetes communities and resources
There is a huge benefit (albeit a few pitfalls and cautions) of social media and the rise of online diabetes-specific communities.
“We are living in the golden age of mental health and diabetes, and things will only improve,” said Heyman. “Social media has given us a common language to describe our experiences – including what’s going on emotionally.”
The community shows people with diabetes that they are not alone. Such a wide, global network can be used to create connections, learn from each other, and help us better manage our condition.
Mental health care and support are out there
Anna Sabino, a social worker and certified diabetes care and education specialist, referred to people like herself with diabetes (and their caregivers) as “team captain, best friend, CEO, founder, feelings owner, and mistake maker,” of their diabetes.
During check-ups, Sabino encouraged healthcare providers to go beyond physical tests and ask patients what’s going well in their life and what things they need help with. Other speakers added that if your doctor hasn’t broached mental health, take it upon yourself to inject the topic into the conversation if it's relevant during your visit.
One helpful resource is the Mental Health Directory, which lists providers trained in diabetes through an ADA program. Other resources include podcasts by people with diabetes and caregivers and in-person programs at places like Children with Diabetes, Connected in Motion, and Diabetes Training Camp, and other organizations like JDRF, TCOYD, and The diaTribe Foundation. A valuable resource on peer support is also hosted by ADCES.
Heyman concluded his keynote giving a few “marching orders” to attendees. First, he encouraged people to speak up and make their needs known. He said the more glucose levels and clinical outcomes can be tied to emotional health, the better.
“Make sure that every diabetes touch point you have is informed by mental health, from your healthcare providers to work, friends, partners, and even manufacturers of diabetes devices and medications,” he said. “Talk about it relentlessly until they listen and get it.”
Second, bring other people with diabetes into the fold of the community. Share resources to grow and cultivate it. Third, share your lived experience with diabetes – including the aspects of emotional health.
“Make diabetes your biggest strength. Think about what good has come from having diabetes,” he said.
People interested in attending the third annual Diabetes + Mental Health Virtual Conference next year (date to be determined) can join the registration waitlist here.
To learn more about diabetes and mental health, check out our articles here: