Type 1 Diabetes and Your Mental Health
By Joanna Smiley
Having diabetes can take a serious toll on your mental health. How can you take care of your body both mentally and physically, and what resources do others turn to when they need help?
Adia Corley, 47, a high school Spanish teacher in Albuquerque, New Mexico, whizzed around the aisles at her local Whole Foods store in April 2020 – discouraged and dismayed. It had been only six months since a type 1 diabetes diagnosis landed on her plate.
Six months earlier, in the middle of a class lesson, Corley lost her vision as a result of her very high blood sugar. She called her healthcare provider and after a series of tests, was diagnosed with type 1 diabetes.
As she stood in the frozen pizza section that day in Whole Foods, overwhelmed and unsure of what to do, she spotted a grocer. She asked him where she could find a cauliflower pizza and blurted out her diagnosis. He looked at her and said: “I also have type 1 diabetes. Let me help you.”
This “angel” spent an entire hour with Adia, not only discussing many different products, but reminding her that she was not alone. He promised her that he was living proof that diabetes did not have to darken her life.
“You gotta quit being scared,” he told her. “If you go low, you treat it. If you go high, you give insulin. In a year, you’re gonna have figured out what works for your body and what doesn’t, and then you’re gonna go help someone else.”
Finding support and building an online community
“The only thing I could do was spiral into obsessing over material for type 1 diabetes,” Corley said, remembering those first months after her diagnosis. “I was re-reading, highlighting…that’s where the mental health came in. When I get afraid of something, I want to study it. I was trying to find a way to know what to do. I got obsessed with the reading and figuring it out.”
Eventually, Corley joined several social media groups and began chatting online with other people living with type 1. As she started listening to their stories and thinking more about her diagnosis, she realized the importance of taking her own mental and physical health more seriously. She stumbled upon Risely, an online diabetes coaching community and educational program that launched in 2015. She lost 100 pounds while working with the program.
“I knew that Risely was something that would help with not only weight loss, but with all areas of my life, so I purchased four months during my summer break,” she said. “The life coaching focused on my thoughts about many areas of my life, and I was able to work on my thoughts about my type 1 diagnosis.”
With the help of yoga classes through Risely, family support, and journaling, Corley is teaching herself how to “neutralize” diabetes in her life.
Lauren Bongiorno, CEO and founder of Risely Health, is a person with type 1 diabetes; she has a background in yoga and meditation, which she believes is a powerful tool for her clients living with a mental health diagnosis, in addition to diabetes. Her company’s medical advisory board includes a psychologist with type 1 diabetes who coaches several groups.
“We have [had] such an influx of newly diagnosed people with diabetes compared to previous years. You have the pandemic, which is already stressful and unknown. It’s like a double whammy,” Bongiorno said.
According to Bongiorno, in a survey of 800 people applying for coaching over the last two years, two-thirds of the applicants checked the “Yes” box for having issues with their mental health.
“That’s a pretty high number,” Bongiorno said. “At Risely, we understand that living with type 1 diabetes can be extremely hard on mental health. As type 1s, we all deal with it on some level. It can be a lack of motivation, anxiety, diabetes burnout, depression, mood dysregulation, suicidal thoughts... it's a spectrum. After going through our programs, clients report a decrease in stress and anxiety and sometimes even diabetes burnout.”
Bongiorno’s Risely Facebook page has a following of nearly 2,000 people, but she is quick to point out the dangers of certain diabetes social media groups that can trigger increased feelings of panic and depression, especially in people who already live with these conditions.
“Social platforms have instilled a lot of fear in people,” she said. “‘This is what happened to me,’ ‘this is how I’m feeling,’ so many threads and conversations. It’s almost like misery enjoys company, and you’re bonding over the struggles of diabetes. At a certain point, there has to be an understanding of what kinds of thoughts and stories you’re surrounding yourself with.”
Bongiorno said she takes a different approach with social media, holding space for frustration and struggles, while encouraging people to instead focus on “what we can do, not what we can’t do.”
Dealing with distress and strategies for mental wellness
Sara Ellie, a licensed clinical professional counselor in Chicago who lives with type 1 diabetes, said she has also seen an increase in mental health issues with her patients during the pandemic, particularly those with diabetes.
Ellie often reminds her clients that if they speak negatively to themselves, they can become those negative thoughts. If they instead focus on shifting their mindset to positive affirmations, they may be able to improve their daily lives.
“Every morning or night, write down a list of five positive things that you are proud of whether that be internal or external attributes,” she said. “Practicing this every day starts to change habits. I also work with people on how to find positive outcomes such as ‘I hate my diabetes, I never wanted this or didn't ask for it’ to ‘I can educate and teach people about my disease so they can better understand and not make inappropriate jokes or comments.’”
Ellie reminds people that it takes work and daily follow through to truly change habits, especially negative thoughts.
According to a 2014 research study from the Association of Diabetes Care & Education Specialists (ADCES), mental health coaching “significantly eased depression and reduced blood sugar levels in people with diabetes.” Mental health coaching refers to coaching that helps clients manage emotions, challenge negative thinking patterns, improve relationship skills, and reduce stress and anxiety. A significant number of people with diabetes suffer from depression, which can interfere with their ability to participate in self-care activities such as monitoring glucose, being physically active, eating healthy, and taking medication. These self-care activities are key to managing the disease.
“It's really important to distinguish type 1-specific therapy from health coaching,” Bongiorno said. “Therapy focuses on emotional healing, while coaching helps with forwarding movement of goals, overcoming roadblocks, and filling gaps of education and accountability.”
Erica Zabel, an occupational therapist in San Diego, California who was diagnosed with type 1 diabetes 22 years ago, also lives with an anxiety disorder. In the U.S., 41 million adults, or 18 percent of the population, are diagnosed with an anxiety disorder, according to the Anxiety and Depression Association of America.
“I had a really traumatizing low blood sugar yesterday that nearly put me in the hospital,” she said. “I had to use emergency glucagon meds. I am feeling really terrible today as my body went through a war with itself yesterday.”
Zabel said that she didn’t know how to adequately describe the combination of her distress and diabetes, adding, “I am flooded with anxiety and panic about what happened yesterday. I need to take it easy today and listen to what my body is telling me.”
Zabel said that as a person with type 1, she feels she always needs to think 50 steps ahead of someone who doesn’t have diabetes. For example, “with the pandemic, I was very anxious in the beginning as an immunocompromised individual,” she explained. “I had anxiety about pretty much everything and was scared to go to work, enter stores, and see family.”
Like Corley, Zabel has found that journaling helps her release and process difficult emotions.
“Writing down my anxieties and listing out advice I would give to someone else about the same anxieties make things seem more manageable,” she said.
When Ellie treats people like Zabel with a dual diagnosis of type 1 diabetes and generalized anxiety disorder, she starts off with meditation and proper deep breathing. She added that focusing on the aspects of grief and loss is essential in maintaining mental health for people with diabetes.
“The diagnosis is as severe as losing a loved one, and people don't realize that or give themselves justification or credit to go through the process,” she said. ”A lot of people think, ‘OK, I was diagnosed, it’s time to move on and deal with it.’ In my professional opinion, I say, ‘Absolutely not.’”
Ellie encourages her patients to write their diabetes a letter, personifying it as if diabetes is another living being. She urges them to get mad, sad, and let out any other emotions with the goal of finding acceptance.
Christie Caneschi, a family therapist and clinical coordinator at Porter's House Outpatient Program in Waterbury, Connecticut, focuses mainly on children. She has lived with type 1 diabetes since she was 6.
“The world as they once knew it changes overnight,” Caneschi said about a child being diagnosed with diabetes. “Having to rely on insulin injections or insulin pumps for survival, having to change their diet, dealing with the sometimes unpredictable low and high blood sugars, being treated differently by others... these changes and restrictions can come with frustration, anger, sadness, anxiety, as well as a loss of control.”
Caneschi uses play, which she calls “the language of the child,” as a primary tool to help her young clients. She also sometimes uses animals to teach children how to build trust and emotional connections.
For Zabel, self-care and compassion are two of her greatest antidotes to panic.
And for Corley, she credits “angels” like the tenderhearted grocer at Whole Foods with helping her to live a more hopeful life. As she noted, “Angels are everywhere. You just have to look.”
Check out the following specific resources to help you better manage your mental health:
diaTribe has articles to help you better manage your mental health and diabetes.
Mental Health Provider Directory is a directory from the American Diabetes Association that can help you connect with a provider near you.
Integrated Diabetes Services, a worldwide leader in diabetes coaching with emotional support remote counseling packages.
The Center for Diabetes and Mental Health, run by Dr. Mark Heyman, is a diabetes psychologist and certified diabetes care and education specialist.