If you took a survey of people with Type 1 diabetes and asked them to tell you what’s frustrating about living with diabetes, many would answer that the disease’s unpredictability drives them crazy. What worked perfectly yesterday doesn’t work today. But sometimes it’s emotional struggles that lead to poor diabetes management. Understanding why a person isn’t checking blood glucose or taking their medication is the an important step, and what motivates a person to do better depends on the reason for the lapse in diabetes management.
Here are five reasons why people with diabetes might not be managing well:
1. The Mourning Process
Faced with eminent threat, turtles retract into their shells. Porcupines roll up into a ball. We don’t have those options, but we can mentally retreat from the threat of a chronic illness that impacts everything we do.
Much like the five stages of grief that occur when a loved one passes, people with diabetes can experience a mourning process (and all of the steps involved) of a life without diabetes. Denial, anger, disbelief… all of these feelings can manifest in lack of diabetes care.
2. Independence and Immortality
This is common in teenagers who are navigating their way in the world and attempting to assert their independence. The “You’re not the boss of me!” attitude is usually coupled with the feeling that while complications may happen to others, it won’t ever happen to me.
As a former diabetes teen rebel, I wanted to make my own decisions regarding my care and push the boundaries of what was healthy. My family’s questions about my blood sugar readings didn’t feel supportive anymore; they felt intrusive and prying. I have no doubt that my parents felt frustrated with me, just as I felt frustrated with my diabetes…
People with diabetes can be judged based on their numbers, whether it’s from their medical team, their loved ones, or sadly, themselves. We tend to be our harshest critics. It’s defeating to see high blood sugars day after day despite your best efforts and the feelings of shame can shutter us into inaction. If you don’t check your blood sugar, you believe you won’t feel bad or ashamed at the number on the meter. One self-shameful day can turn into two, then a week, then a month of not checking.
Work, family, kids, activities, appointments, life… all can be stressful without diabetes. Add an unpredictable chronic illness into the mix and it can be paralyzing. The grind of everyday living can reduce people without diabetes to make unhealthy lifestyle choices, so it’s not surprising that our unhealthy choice du jour may be to let our diabetes management hang out on the back burner.
The financial burden of medication and supplies adds to the stress of daily living with diabetes. In the United States, a single vial of fast-acting analogue insulin without insurance can cost $150. With significant out of pocket costs and deductibles that need to be met annually, even those with “good insurance” are forced to make unpalatable choices about daily diabetes care.
Whether it’s a year or fifty since diagnosis, the sobering thought of never getting a respite from diabetes occasionally arises and festers. It’s difficult to wrap your head around the concept of being vigilant every day for the rest of your life to stay healthy, especially when your best efforts may not yield perfect results.
The “I don’t care anymore!” declaration may not be spoken aloud, but it manifests in the subtle lack of action. It’s not uncommon for all of us to have moments or days when one more lancet prick or needle pierce seems just too much to bear. A day of ignoring a high blood sugar or forgetting to take medication before a meal can easily turn into two days, a week, a month, and sadly, even longer.
For those experiencing denial, stress, shame, or burnout, additional support may be needed that reaches beyond family and friends. Behavioral medical professionals with diabetes experience can help traverse these complex issues with you. If the stress is due to financial restraints, there are resources available to help lessen the burden, including low-cost/free clinics and cost-savings programs for medication.
Two highly recommended books about diabetes burnout can assist you in understanding the psyche of a person with diabetes: Diabetes Burnout: What To Do When You Can’t Take It Anymore, by Dr. William H. Polonsky and Dealing with Diabetes Burnout: How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed Living with Diabetes by Ginger Vieira. Read them yourself and offer these books to your loved one.
Thanks to Dr. Nicole Bereolos, PhD, MPH, CDE for her insight and expert advice on this important topic. (Dr. Berelos has not just clinical experience; she also lives with Type 1 diabetes.)