Blog
Diabetes Distress: What It Is and How to Support Yourself or a Loved One Through It
Julia Flaherty
Children's Book Author
Diabetes distress is often a combination of feelings that build over time for people with diabetes, whether feeling overwhelmed, frustrated, emotionally overloaded, or burdened by the disease. For many people with diabetes, diabetes distress can lead to burnout, depression, or heightened anxiety. Diabetes distress or burnout should not be generalized, however, and treatment should be tailored.
But before we get to treatment, it’s essential to understand what leads to diabetes distress in the first place! There’s no simple answer as to what causes diabetes distress, but people with diabetes understand the shared experience.
What does diabetes distress feel like?
A person with diabetes who is going through diabetes distress may feel isolated from their loved ones or want to disassociate from their realities. They may lean on unproductive coping mechanisms or feel discouraged from caring for themselves. People with diabetes experiencing diabetes distress may even start skipping check-ins with their doctors.
When someone with diabetes is distressed or going through diabetes burnout, loved ones may feel helpless in caring for them. Likewise, people with diabetes may feel that way about themselves. Diabetes can be incredibly frustrating with little reprieve, whether you’re an excellent self-manager or not. Relaxation and downtime are few and far between. Even worse, people with diabetes experiencing distress or burnout may blame themselves, feeling ashamed or guilty for how they’re handling life with diabetes.
The CDC reports that during any 18 months, 33 to 50 percent of people with diabetes experience diabetes distress.
While it’s practically unavoidable for people with diabetes to experience distress or burnout in their lifetimes, there are proactive measures people with diabetes can take to reduce how often it occurs. And for loved ones, we offer many tips for supporting your people through it when it happens!
For people with diabetes: discover what works for you proactively
First, let’s talk about proactive measures people with diabetes can take for themselves. People with diabetes may find benefits in various activities that can help reduce how often they experience diabetes distress or burnout.
Here are some routes people with diabetes may explore:
Therapy or coaching with a psychologist specializing in chronic illnesses can significantly benefit people with diabetes. Having recurring sessions can help prevent emotions from bubbling up and overflowing. By finding a therapist who gets you, you can talk about emotions as they come and work through them more productively. You can also work with your therapist or coach on improving your coping mechanisms, equipping yourself with the skills you need to be your own friend during emotional lows.
If therapy isn’t your thing, find your happy place. Everyone needs one…maybe two or three! For some people with diabetes, that might be strength training or kickboxing. For others, it might be pottery classes or goat yoga. Maybe it’s time with friends and family or visiting your favorite coffee shop! Whatever your flavor, making time for your happy place is just as important as making time for your diabetes because when you make time for your happiness, it can bolster your health.
"Making time for your happy place is just as important as making time for your diabetes because when you make time for your happiness, it can bolster your health."
Julia Flaherty, author of Rosie Becomes a Warrior
As the CDC states, medicine isn’t an effective option as treatment for managing diabetes distress. But connections within the diabetes community can offer pretty good serotonin! Remember, diabetes distress isn’t anxiety or depression, but diabetes distress can contribute to them. So, if connecting with a therapist or endocrinologist isn’t doing it for you, adding friends in the space on top of these essential activities can seriously make a world of difference. People with diabetes will always get it—whether you need a shoulder to lean on, someone to sob or scream with, or a virtual cocktail partner to laugh it all off with.
For loved ones: meet your people with diabetes where they are
For caregivers, friends, or family members, supporting your loved one comes down to their needs. Identifying those needs can take time and learning. They might not be ready to or open to telling you what’s going on when you’re ready to help, so please practice patience. Be open to being ready to help them when they’re ready. Meet them where they’re at.
Supporting your loved ones with diabetes is about asking well-intentioned questions and being there. Be an active listener. Active listening might not be verbal communication but picking up on their body movements, mannerisms, exhaustion levels, tuning into their continuous glucose monitor (CGM) graphs, etc. Talking to you might not be what they need, but they will surely appreciate your love. They will always need you in some way. Don’t be discouraged if talking isn’t what they need.
The more you go through it with them, the more likely they are to open up or the more likely you are to pick up on what best supports them through diabetes distress. Take the time; work with each other. You’re on the same team!
One last thing: here’s my advice—from personal experience!
At the end of the day, we must all find ways to make our problems more manageable. It is not the avoidance of them that makes us strong or helps us grow but the graciousness we offer ourselves in learning what we need to manage well. With every life problem, there is an opportunity to learn more about ourselves or find peace in just being—in forgiving our bodies for what they cannot do and celebrating them for what they can. Sometimes, there is no good solution except to live in our feelings.
Intellectualizing our feelings about diabetes is not actually feeling them. It’s okay to be upset; you just can’t let yourself live in that headspace permanently. You deserve better!
In my experience with diabetes distress and burnout, I have always felt better letting myself feel rather than avoiding the feeling. Feel through, not around. Feeling around will only lead to circling back to point A—in this case, the beginning of a diabetes distress or burnout cycle. While facing the feelings of your diabetes distress can be uncomfortable, trust me when I say it is necessary to move forward and to find new ways of moving forward. More than anything, trust me when I say you’re worth the investment. Diabetes is hard, but your will is rock solid.
About the author
Julia Flaherty
Children's Book Author
Julia Flaherty is the author and illustrator of “Rosie Becomes a Warrior”—a children’s book series designed to empower children with type 1 diabetes to live their happiest lives. Flaherty has lived with type 1 diabetes for 20 years. She is actively involved in the diabetes community. In her daily work, Flaherty is focused on affecting meaningful change for the diabetes community.