FormalPara Key Summary Points

The myriad of ways that people could face mental health changes with long-term type 1 diabetes has only enhanced our understanding of finding an immediate solution to this growing challenge.

People with type 1 diabetes over a longer duration of living with the condition are more likely to suffer from mental health issues such as, but not limited to, burnout and distress, frequent mood changes, blood glucose fluctuations, low self-esteem, anxiety, depression, and other psychiatric disorders. Such events significantly impact the quality of life and mechanisms of coping with the condition of such individuals over a longer time.

Global efforts are underway to address this challenge of mental and psychiatric disorders in people with type 1 diabetes immediately. Such an approach requires greater collaboration between patients, clinicians, society, policymakers, caregivers, and several organizations working toward this issue. Of several problems being tackled to address this situation, patient engagement and their perspectives play a crucial role in defining future research and treatment or management of the condition.

Our patient–clinician perspective article highlights the experience of a patient with type 1 diabetes and their ways of tackling the condition, awareness of when to seek support and help, and finding the appropriate channels to manage the mental health condition. Additionally, perspectives by the endocrinologist and a psychiatrist signify the benefits of an effective patient–physician dialogue and engaging patients in decision-making for a meaningful outcome.

Introduction

Living with type 1 diabetes mellitus (T1DM) can have significant and wide-ranging effects on the mental health of the individual. Whether the diagnosis is made in childhood, adolescence, or adulthood, living with T1DM impacts most aspects of daily life. The schedule and routine of the individual living with T1DM, along with their family and caregivers, can increase stress levels to the point of a medical emergency if matters are not managed in a timely fashion and with care and compassion.

A systematic review analyzed 38 studies on the prevalence of mental health disorders in individuals with T1DM and found anxiety (especially phobias) and feeding and eating disorders to be the most frequently reported struggles [1]. In adolescence, dealing with T1DM has been associated with impaired executive function [2] and reduced quality of life (QoL) [3]. Major depressive disorder (MDD) is a commonly reported condition associated with T1DM [4]. According to the Centers for Disease Control and Prevention, the likelihood of someone suffering from MDD is double or even triple the rate among those with diabetes compared to those who do not have diabetes [5]. Unsurprisingly, the mental distress from managing and living with diabetes (type 1 or type 2) impacts daily living and social experiences [6, 7]. These stresses collectively lead to higher glucose levels [8,9,10]. The experiences of individuals living with diabetes and developing coping strategies to balance their lives is a less explored area of illness management. The recently published guideline on diabetes and mental health by the Diabetes Canada Clinical Practice Guidelines Expert Working Group provides a comprehensive overview of mental challenges faced by people with diabetes and provides practical management recommendations [11].

The patient experiences mentioned below are self-observed and reported, complemented by a clinical discussion by expert clinicians.

This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.

Too Much to Handle: Perspective from a Person with Type 1 Diabetes

As a person living with T1DM for nearly 33 years, I (MNA) have experienced repeated cycles of downward spirals and upswings. Being diagnosed as an adolescent with little to no knowledge of the condition, living through the blood glucose management perils, and developing coping mechanisms to manage the illness successfully transformed me into what I am today: a positive and mentally resilient individual who knows what and how to manage the illness. However, even after 33 years, it has never been easy. I have had my share of mental health struggles and bouts of anger, stress, and depressive symptoms. It truly does take a village to manage every aspect of the illness; however, the primary responsibility is “self-management.” Injecting insulin four times daily since adolescence until I shifted to an insulin pump in the last decade has helped me take better control of my glucose management and, eventually, the accompanying wide range of emotions.

Like many people with diabetes, I had had my share of mental breakdowns, social isolation, and extreme moodiness that put me into a downward spiral and threw my life out of balance. However, I took it as a challenge to find a way to acknowledge, accept, and deal with the situation head-on to halt the downward spiral. And the fight continues.

As an adolescent, I faced burnout several times. I used to lock myself in the washroom and cry for hours, not knowing how to cope. I felt sick and could not communicate with my family and support system, as they, too, were naïve about diabetes management in the early 1990s. In the 2000s, I withdrew further into my shell as a result of incessant mood instability. I was not fond of finger pricks to check blood glucose levels and struggled to manage my emotions around eating. The stress and burden of managing T1DM pushed me to the brink. I would cry at night owing to my constant emotional pain and wish for someone to rescue me.

I had to put on a smiling facade when dealing with people, but I was broken inside. I had no one to speak to or with whom I could share my illness-specific concerns. I felt that counseling was not really for me. When I became of working age, the stress of work-related responsibilities, managing my expectations of T1DM, and balancing it with my personal life often hit me hard. I realized I was in a rut and had to accept that I was not myself. I avoided speaking to anyone at work except for work-related purposes. I stopped smiling and was aching inside. This might also have been related to higher glucose levels. I gained weight and developed increased insulin resistance. At one point, I needed to inject 60 units of bolus insulin four times a day. I was overeating and felt I was unable to make logical decisions. Reading motivational articles or listening to friendly suggestions and guidance made no impact. I did not feel especially negative, but circumstances forced me to react rather than respond.

Though not formally diagnosed with MDD, I felt depressed and knew I needed professional help. I tried to do all I could to stay positive but realized I had reached the tipping point.

Coping Mechanisms: Patient Recommendation

Earlier in my life, I was an athlete, a musician, and an avid book lover. I knew how to tackle obstacles through my sports education and creative ability to manage my emotions. I did several things to escape the rut and still engage in these practices. I am successful most of the time but still fail often enough. The only thing I do is “never give up on myself.” I outline these scenarios and coping strategies that have helped me stay mentally healthy.

Accept, Acknowledge, and Mindset Shift

I had to admit that I was in a rut and accepted that my mental situation forced me to take things slowly. I was going too fast and needed to take a pause. It was time to heal my body’s engine and refuel for better future efficiency. I took a humane approach to myself and acknowledged that we all can break down and that I am not a machine to run despite adversity. I made peace with myself and broke the taboo that it is a sign of weakness to ask for help. I changed my mindset to believe it takes strength to admit and seek assistance. I trained myself to say that every problem has a solution and to find an alternative path. Every challenging situation strengthens us, adding to our experience and learning, and makes us better people. I accepted that failing is okay if it is followed by picking oneself up and continuing the journey.

Incorporating “Me” Time

I realized I was not spending time in reflective solitude. I decided to take a break from social engagements and just cut off from everything that did not add to my peace of mind. I took therapeutic massages, increased my physical activity, spent time alone, and cut off from external engagements to seek a deeper connection. I listened to my body’s signals and began responding appropriately. I kept a journal, wrote songs, read books, and gave myself time to think over a cup of coffee without any distractions. I continued to spend time with family only and looked at bright, colorful things to bring out creativity for healing. I sought deeper physical, mental, and spiritual connections to help me heal. Breathing exercises and slowing my thoughts down helped me focus away from the outside noise.

Breaking the Discipline Schedule

I took a “diabetes vacation” twice in my lifetime—once in 2015 for over 2 months, wherein I disconnected from everyone except my physician, counselor, and family. The other was at the time I was experiencing diabetes-related fatigue in 2021, and I ensured spending time to get healthy, get good rest, disconnect from social media, and focus on internal clarity and mindfulness. This “diabetes disconnect” was a tip advocated by Dr. Polonsky, founder of the Diabetes Behavioral Institute in San Diego, California, and author of Diabetes Burnout. I got back to some old tricks to manage diabetes rather than being constantly connected to the system, sensor, continuous glucose monitor (CGM), and data devices. I disconnected and got back to the basics of management and survival. As an adolescent, I used to manage blood glucose without gadgets and reverted to “old school ways” for a while. I did not count carbs for a while, went with my gut feeling to know what I should eat and what I should not, just went with the flow, did not obsess about my sugar, and let my mind take a mini vacation. I reconnected with my inner self, engaged in sports, exercise, and creative activities, and focused on getting better and stronger mentally and physically.

Self-Talk

I made Najeeb, the person with diabetes inside me, my best friend. This helped me see things from two perspectives and understand what each one said. I converted all the negative thoughts and speech inside me to positive statements and a hopeful outlook continuously throughout the day. It is how you train and tame your mind, and it will speak the same language. This helped me see the silver lining in every situation related to diabetes burnout to decide what step was needed for my efficiency, better health, and managing moodiness and stress. The Najeeb-with-diabetes helped me understand the value he was bringing to me, and I made peace with that. This reunion was vital for me to develop a fighting spirit and a competitive attitude. I agreed that Najeeb-with-diabetes would put me down at times and may win over me in the future. However, as the sports saying goes, “It’s not over till it’s over.” I continue this conversation to this day, which is not only my motivation to bring out the best in me but a reason why I never give up.

Seeking Professional Help/Counseling

Lastly, I sought out professional support and would visit a hospital often. I spoke with the physicians who knew me, performed physical exercises, and shared details about my feelings. These regular conversations with the physician, the trainer, and the psychologist made me feel better about my entire situation. These collective steps were critical to restoring balance as I knew I would not be judged for what I shared and handled.

Little Big Lessons

These small yet practical soft skills have been critical to helping me manage my blood glucose, health, and mindset to the point where I am much stronger than I was as an adolescent. Today, my blood glucose readings stand at an average of > 86% on target over 90 days, touch 100% on certain “good blood sugar days,” and I am seeking out social activities to keep me engaged in activities that help me grow and stay motivated for my health and peace of mind.

Endocrinologist Perspective

As an endocrinologist, I have the opportunity to develop long-term relationships with people living with diabetes. Although our focus is often on achieving various targets to reduce complications and thereby improve the quality and quantity of life, we must never forget to consider the constant burden of disease management and the toll that can take on one’s mental health. As much as physical health is assessed, so should mental health. The association between diabetes and a variety of mental health disorders is well established. Although we may not be trained mental health experts, we are clinicians who get to see the person living with diabetes regularly. Therefore, we have the opportunity to ask questions, listen with care and purpose, and take note when things have changed. To do that successfully, though, we must first be aware of the potential for mental health disorders, have a high index of suspicion, and create an open and nonjudgmental environment in which the person would be comfortable sharing their thoughts. Sometimes, changes in their physical health may be a clue to their mental health. Because of the frequency with which diabetes visits occur, we may be the first healthcare contact to detect a problem. Upon suspicion of an issue, it is our job to help the person seek the help they need—social worker, psychologist, primary-care team, support groups, and/or psychiatrist. While seeking professional help and restoring balance, we can further help the individual by setting realistic goals and expectations around achieving risk factor treatment goals. It may not be appropriate to discuss one’s A1c and lipid levels at a visit when that is not the priority, and trying to do so in the face of more significant mental health issues will only damage the relationship. Heal the brain and heart, and then we can work on protecting them.

Psychiatrist Perspective

Despite being a psychiatrist, I maintain an active interest in what my endocrinologist colleagues are doing because mental health care and metabolic issues have had an increasing convergence in the past two decades. The majority of the people I see for mental health matters have type 2 diabetes, but the struggles outlined by the patient are a familiar trajectory for me to hear about. The psychological toll that a condition like diabetes takes on people cannot be underestimated. When decisions about every calorie and every step are tabulated and scrutinized, even the most resilient among us are susceptible to a myriad of consequences, ranging from anxiety and depressive symptoms to feeling traumatized and overwhelmed to the point of shutting down. People can avoid high-risk activities that are lifestyle choices, but when the substance that poses long-term, severe threats to one’s health and well-being is our daily sustenance, there is no escape. I remind myself that we are not simply treating a medical or psychiatric condition but a person with that ailment, and we must consider the human element in any interaction with diabetes care [12].

Healthcare providers are usually sources of knowledge, guidance, and inspiration, but we can inadvertently become inflexible, discouraging, and even stigmatizing. People facing diabetes-related stigma in treatment settings show worsening in cardiovascular and metabolic indices [11]. During the psychiatric residency, we are encouraged to develop a “third ear” in psychotherapy training to have a somewhat objective opinion of how we come across to the people we are treating. Someone who has achieved 80% of their glycemic target should be congratulated on this effort rather than having it disregarded to focus solely on the remaining 20% improvement. In this narrative account, the patient detailed multiple effective strategies that got him mobilized again after his life and diabetes care ground to a halt. Everyone involved in the care of people with diabetes would benefit from not losing sight of the person amid the objective data we get around glycemic control. A few earnest questions about troubling symptoms, impairment in one’s ability to function, and what people do for enjoyment put us on an excellent path to the early detection of psychological/psychiatric comorbidities.