Lauryn Rozum, MS, CCLS
UPMC Children’s Hospital of Pittsburgh
November is Diabetes Awareness Month! In full personal disclosure, I have been a Type 1 Diabetic for almost 28 years of my 30 years of life. I was diagnosed when I was 2 years old, so this month holds a special place in my heart. While the term diabetes is discussed regularly, there is more to it than meets the eye. The two most common types of diabetes are Type 1 Diabetes Mellitus and Type 2 Diabetes Mellitus. While the names may be similar, the diagnosis and treatment are very different. Type 2 Diabetes is the most common type and is what is most often heard discussed on medication commercials and (often incorrectly) in the media. With Type 2 Diabetes, the body does not produce enough insulin to properly break down glucose and can be treated with a combination of healthy eating, exercise, medication, and monitoring blood glucose levels. It is estimated that there are 525 million people around the world with Type 2 Diabetes. Type 1 diabetes, formally known as Juvenile Diabetes, is an autoimmune disease where the body attacks and destroys insulin producing cells in the pancreas. It is estimated that 8.7 million people around the world have Type 1 Diabetes. Management of Type 1 Diabetes includes taking insulin via injections or insulin pump and monitoring blood glucose levels through a glucometer and/or a continuous glucose monitoring system.
While Type 1 Diabetes is mostly diagnosed in late school-age to early adolescence, it can be diagnosed at any age ranging from infancy to adulthood. Seeing that Type 1 Diabetes is most commonly diagnosed prior to age 18, many certified child life specialists will encounter working with patients and families that have a Type 1 Diabetes diagnosis sometime throughout their career. Many child life specialists will meet with patients and families while they are admitted for the initial diagnosis and treatment plan, but majority of long-term care is focused in an out-patient clinic setting. Most hospitals, including my own, have strong plans of support for newly diagnosed diabetics and their families including Rufus the Bear from Juvenile Diabetes Research Foundation (JDRF), poke plans, school plans, Type 1 Everyday Magic by Disney and Lilly, and sibling support resources as well. But what happens when these patients and families are sent home with a new, life changing diagnosis just a few days later and then seen by their medical team approximately every three months?
Type 1 Diabetes is a chronic condition that has no cure. It required around-the-clock management and decisions were often made outside of the hospital setting. As with many or all chronic conditions, there are major mental health struggles associated with diabetes, especially burn out, and can be frequently observed in our adolescent population. Speaking from personal experience, the teenage years/early college were some of the most difficult for myself and my family to cope with managing my Type 1 diabetes. One thing we know about adolescent development is their need to fit in with their peers. Another thing we know is that adolescents are starting to find their own way and become less dependent on their caregivers. Those two factors along with dealing with a chronic health condition that requires 24/7 management can lead to our adolescent population at high risk of burn out. Type 1 Diabetes burn out can look like not checking blood sugars or giving insulin due to not wanting to be looked at differently, ignoring symptoms of high or low blood sugars, or just general feelings of indifference in caring for themselves which can lead to hospitalization and irreversible damage to many organ systems down the road.
We know that teens are beginning to think futuristically, but are they able to think futuristically enough to realize that the choices they’re making around their diabetes care will have consequences 10 years from now? 20 years from now? How can we help our patients, both with Type 1 and Type 2 Diabetes, understand that their medical care is important while also validating the exhaustion of a disease that has no breaks or end especially when majority of care is provided outside of the medical setting?
Beyond Type 1 is an organization whose goal is to change the way people live with diabetes, both Type 1 and 2. They have a section on their website focusing specifically on mental health and burnout from having diabetes.
Here are some specific resources directly from Beyond Type 1’s mental health section on their website Mental Health Resources for People with Type 1 Diabetes (beyondtype1.org)
REACH OUT TO FRIENDS AND FAMILY
Be open with your friends and family about how you’re feeling. No matter what you’re going through, you’re never really in it alone. At least, you don’t have to be. Don’t be afraid to tell them what’s on your mind. Starting with some venting and personal talk therapy is starting somewhere if you don’t want to pursue more professional options.
FIND SUPPORT IN YOUR LOCAL COMMUNITY
The National Alliance on Mental Illness (NAMI) is a nationwide grassroots association that organizes the work of more than 500 local affiliates, focused on raising awareness and providing support for anyone facing mental illness. By calling or emailing NAMI’s help line, you can be connected with appropriate local resources where you live.
PURSUE ONLINE THERAPY
There are also many online therapy options and apps for people who haven’t ever done it before and need or want to start while in lockdown. Always investigate benefits, plans, features, and pricing for yourself before use, but generally highly-rated services include Amwell, BetterHelp, Faithful Counseling, Pride Counseling, ReGain, Talkspace, and Teen Counseling.
ONLINE SUPPORT GROUPS
If you feel you need an in-between—between friends and family and therapy— seek out support groups online. There are many Facebook groups, for example, that provide ways to connect and share frustrations from one T1D to another. The people who understand type 1 diabetes best are those who are going through it too. Opening up to type 1 diabetes online support groups can be wonderful therapy and even provide humor in tough times.
Beyond Type 1’s community app allows fellow T1Ds to connect, available on desktop, as well as Android and iOS devices, while JDRF offers Type One Nation, where T1Ds can join relevant conversations and connect with their communities on messaging boards.
You may also find your people on Instagram and Twitter too. Do a little hashtag-digging to find them – you may explore #t1dLife, #t1dDaily, or #t1dLifeCoach, for example. There are many relevant accounts that exist for the community to suit every individual’s connection style.
If you or a loved one is in immediate danger, please do not hesitate to dial the National Suicide Prevention Lifeline: 1-800-273-8255. You are worth the call. Your life is valuable. The lifeline was designed to provide free and confidential support for people in distress. Crisis and prevention resources are immediately available to you.
The American Diabetes Association (ADA) has many resources as well surrounding diabetes and mental health including a mental health provider directory (linked below). The ADA also sponsors an overnight summer camp for children with diabetes. There are many camps located throughout the United States and provide children and teens with diabetes the opportunity to connect with peers their own age going through the same things they are. The link provided below will help find the closest one to your hospital.
ADA Mental Health Provider Directory | American Diabetes Association
ADA Imagine Camp | ADA (diabetes.org)
All in all, diabetes is a lifelong, chronic condition that impacts every aspect of a person's life, including their mental health. What are some ways that your hospital, endocrinology department, or child life team shows support for their diabetes patients during National Diabetes Month or year-round? Happy November!
Ada imagine camp. ADA Imagine Camp | ADA. (n.d.). Retrieved October 28, 2022, from https://diabetes.org/get-involved/camp
Ada Mental Health Provider Directory. ADA Mental Health Provider Directory | American Diabetes Association. (n.d.). Retrieved October 28, 2022, from https://professional.diabetes.org/ada-mental-health-provider-directory
Centers for Disease Control and Prevention. (2021, March 25). Just diagnosed with type 1 diabetes. Centers for Disease Control and Prevention. Retrieved October 28, 2022, from https://www.cdc.gov/diabetes/basics/diabetes-type-1-diagnosis.html#:~:text=The%20peak%20age%20for%20being,older%20(even%20over%2040).
Centers for Disease Control and Prevention. (2022, March 11). What is type 1 diabetes? Centers for Disease Control and Prevention. Retrieved October 28, 2022, from https://www.cdc.gov/diabetes/basics/what-is-type-1-diabetes.html
Diabetes overview. Diabetes Symptoms, Causes, & Treatment | ADA. (n.d.). Retrieved October 28, 2022, from https://diabetes.org/diabetes
Home. Beyond Type 1. (2022, September 14). Retrieved October 28, 2022, from https://beyondtype1.org/
Jackson, L. (2022, September 13). Mental Health Resources for people with type 1 diabetes. Beyond Type 1. Retrieved October 28, 2022, from https://beyondtype1.org/mental-health-diabetes/
Mental health: Living with type 1. Mental Health: Living with Type 1 | ADA. (n.d.). Retrieved October 28, 2022, from https://diabetes.org/diabetes/type-1/mental-health
Rufus, the bear with diabetes®, "2.0". JDRF. (2022, January 18). Retrieved October 28, 2022, from https://www.jdrf.org/blog/2022/01/18/new-interactive-rufus-the-bear-with-diabetes/