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Editor’s Note: If you are experiencing thoughts of self-harm or suicidal ideation, text the word “NAMI” to the National Alliance on Mental Illness (NAMI) helpline at 741741. Or call the National Suicide Hotline at 988. Find a list of mental health professionals with expertise in diabetes care in this list from the American Diabetes Association.
Surviving and thriving with type 1 diabetes (T1D) is about far more than just managing your blood sugar levels. The mental burden this disease can carry is a daily, non-stop, hour-by-hour responsibility of keeping yourself alive.
If your healthcare team isn’t already acknowledging or supporting your mental health as a person with T1D, recent research from the T1D Exchange Quality Improvement Collaborative (T1DX-QI) highlights why this should be a critical part of your healthcare. The T1DX-QI includes 54 participating endocrinology clinics across the country, treating approximately 85,000 people with T1D.
Here, we’ll look at research focused on properly assessing and addressing the emotional well-being of anyone living with T1D.
Our research: Improving mental health screening in T1D care
“Although advances in diabetes technology and pharmacology have significantly and positively impacted diabetes management and health outcomes for some,” explains the study, “diabetes care remains burdensome and can be challenging to balance with other life priorities.”
It is well understood that the risk of depression, anxiety, self-harm, and disordered eating are significantly higher in the general population of people with T1D. This recent research focused particularly on teenagers:
- While most teenagers with T1D fall into the “low risk” category for depression, there is a subgroup with a significantly higher risk of depression and suicidal ideation.
- Teenagers with type 2 diabetes (T2D) had even higher rates of depressive symptoms and thoughts of self-harm during routine screening.
The research emphasizes that “psychosocial” screening tools should be implemented into every endocrinology clinic and standard workflow. Effective screening tools would be used to ensure that any mental health challenges you’re experiencing as a person with T1D have an opportunity to be acknowledged, discussed, and addressed properly.
When appropriate, based on the results of psychosocial screening, your healthcare team can better utilize mental health resources — including medication to treat anxiety or depression, referral to see a therapist or psychologist, treatment for disordered eating behavior, or immediate intervention for self-harm or suicidal ideation.
Being proactive: why your mental healthcare should be a big priority in T1D
In a disease that requires constant attention in order to manage your immediate and long-term safety, the wear and tear this can have on your mental health should be expected. Expecting someone who is struggling with anxiety and depression to have the energy and resilience to show up each day for more T1D management is a big ask.
Ignoring the impact of anxiety and depression on your T1D can easily pile up — making it even harder to see through the fog of depression and anxiety. Making it even harder to get back into a routine of checking your blood sugar regularly, taking your insulin throughout the day, minding your nutrition, and striving to reach your personal blood sugar goals.
“Depressive symptoms commonly impact diabetes self-management,” explains the study. “The estimated lifetime prevalence of generalized anxiety disorder is estimated to be around 19.5% and can be very disruptive to the lived experience with diabetes.”
Effective screening processes within the standard diabetes care visit should strive to catch the earliest signs of anxiety and depression — catching it before it takes a toll on daily blood sugar management.
Developing mental health screening tools for people with type 1 diabetes
“In pediatrics, diabetes distress occurs in approximately one-third of people with diabetes and can negatively impact management behaviors and [blood sugar levels],” says the study.
Here’s a glance at the different screening tools developed specifically for people with T1D:
- Diabetes distress: The Diabetes Distress Scale (DDS) was developed specifically to assess your overall T1D distress. “Diabetes-related distress” is the “emotional response specific to living with diabetes” explains the study. Essentially, it means you’re just plain burnt-out on the constant self-management tasks, worry of long-term complications, and hour-by-hour stress that comes with trying to manually balance your blood sugar. Every single day.
- Disordered eating behaviors: Screening for disordered eating behaviors in T1D includes the Diabetes Treatment and Satiety Scale (DTTS-20) and the Diabetes Eating Problems Survey (DEPS-R). Approximately 21-30% of teens with T1D develop eating disorders — which can be life-threatening and lead to the early development of diabetes complications like gastroparesis, retinopathy, and neuropathy.
- Fear of hypoglycemia: The Hypoglycemia Fear Survey (HFS) has also been developed into versions for children and parents. The “Children’s Hypoglycemia Index” can also be used in teens. Fear of hypoglycemia (FOH) is an all-too-common result of having experienced one too many frightening low blood sugars. Even the mildest low blood sugars can be incredibly stressful and interfere significantly with regular life. FOH often means a person with T1D runs blood sugar levels higher purposefully to limit their risk of lows.
- Social determinants of health (SDOH): The Health Leads Social Needs, Hunger Vital Sign, and Family fIRST tools can be used to assess an individual’s SDOH. If a person with T1D is struggling to maintain affordable housing, access to food, access to medications, etc., then it should be expected that their mental and physical health with T1D will struggle immensely, too. Only by addressing the SDOH can a person eventually focus on the demands of T1D.
- Your overall quality of life: There are a variety of screening tools available to assess a person with T1D’s overall quality of life and the toll their disease may be taking.
Is your diabetes healthcare team using these tools to support your emotional well-being as a person with T1D?
Your mental health matters. The responsibilities you carry every single day with T1D are immense and hard to even put into words. Let your healthcare team support you. Ask for help. The simple words, “I’m struggling with my mental health” could start the conversation.
