Diabetes distress. What is it? And why does virtually everyone living with Type 1 diabetes experience it? There are different ways to cope with this distress, but what helps me is the opposite of what one might expect.
Managing Type 1 is a medically and logistically complex job with no days off, no matter your other life obligations. It requires carefully calculating amount and timing of insulin administrations to match food eaten during the day, following a specified protocol to get accurate blood glucose (BG) readings and keeping track of its many essential supplies. But that’s the least of it when caring for a child with Type 1. In my experience, most stressful are the constant vigilance, uncertainty, unpredictability and high stakes involved. They are a perfect formula for anxiety, exhaustion and feeling powerless.
Parents often report feeling overwhelmed. Huge culprits, certainly for novices, are the constant worry and lack of sleep. You need to be on alert 24-7 to prevent blood glucose (BG) going too low (hypoglycemia) or too high (hyperglycemia). Fear of hypoglycemia plagues families living with Type 1, because it can cause coma or death within hours. Wearable devices such as continuous glucose monitors send BG readings continuously and remotely, but don’t take this fear away because they can lose signal or fail in other ways. Frequent alerts disrupt sleep, and already sleep-deprived individuals will wake up even in the absence of alarms for fear of not hearing them.
Type 1 diabetes is a serious disease, so you feel great pressure to manage it effectively. But achieving consistently in-range BG levels can elude your best efforts, leaving you feeling frustrated, helpless and sad. Many factors, known and unknown, affect BG levels, including hormones, stress, activity level, type of food, illness and accuracy of carbohydrate counting, insulin dosing and timing of insulin. Nothing—not strong will power, conscientious management, 24-7 vigilance, excellent diabetes equipment or the best support network—can replace a working pancreas, so when you try to replicate one, you become acutely aware of your inability to do so. You question yourself, and you worry about the complications that can develop if you don’t manage BG successfully over the long haul.
Insurance problems are quite distressing when they threaten to disrupt or deny access to critical supplies. Some insurance companies cover them without issue, while others make you jump through hoops to get them. Filling prescriptions is not a walk in the park either. Some insurance companies require that prescriptions for Type 1 equipment be filled at a participating pharmacy, while others require getting it from a durable medical company, or a mix of both. Your insurance company may suddenly stop accepting the hospital where you have been receiving diabetes care, forcing you to change your insurance carrier, pharmacy and medical supply company on a dime lest you be left without what you need. Other times, your policy may change, without notice, the brands of insulin it allows. And it’s not just the inconvenience. It’s the specter of not having the supplies you need when you need them, which is every single day for insulin. You must rely on your healthcare provider to work with the insurance company to solve the problem, leaving you in anxious limbo until they do.
I have also faced these problems caring for my son Casey who was diagnosed with Type 1 diabetes. When he was diagnosed, I questioned how I would keep up with both diabetes management and my busy work and family life. I have discovered over time that I feel better when I channel my distress into helping other families with Type 1. While it means I do more now than ever before, it helps counterbalance the distress. For instance, I write articles about Type 1 and its management for the local newspaper and I speak on podcasts. The gratitude from families living with Type 1 is so rewarding. Casey and I also held a virtual walk for diabetes at our preschool. The pride and joy on the children’s faces—especially Casey’s—is unforgettable. He also won the Juvenile Diabetes Research Foundation’s (JDRF) Rookie of the Year for that fundraising event. A few months later, we held a family Easter event with the Hammonton Lions Club to raise money for JDRF. Dozens of people volunteered their time, and dozens of local businesses sponsored the event or donated services or gifts for a raffle. Already emotional about the outpouring of community support, I cried when I saw many hundreds of people streaming into the event. By working and playing together, we—the whole community—raised $7,300 for JDRF.
A month later, Casey’s jiu-jitsu coaches held a tournament to spread awareness of Type 1 and raise money for JDRF. Also drawing strong community support, the tournament raised $820. Most recently, JDRF asked us to be the 2022 Family Team Champion for its October One Walk South Jersey, with Casey in the lead. We are eager to invite and walk with thousands of people who know what it means to find a cure for Type 1.
Channeling my distress to help others deal with Type 1 has helped me, Casey, and our family as well. Different people will find different ways to cope with the stresses of Type 1. I am grateful to have found a way that renews my soul while making Casey proud to represent others living with it.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.