The Daily Burdens of Managing Diabetes: Beyond the Numbers

Nicole M. Bereolos, PhD, MPH, CDE

Nicole M. Bereolos, PhD, MPH, CDE

Nicole M. Bereolos, PhD, MPH, CDE

Managing diabetes is a vast undertaking for people living with the disease, as well as their loved-ones (commonly referred to as “type 3’s”). There are many components to diabetes self-management, including monitoring blood sugars and dietary intake, engaging in exercise, taking medications, attending numerous appointments, and monitoring and treating hypoglycemic and hyperglycemic events. People with diabetes (PWD) refer to diabetes management as a full-time job that was not requested and remuneration is not received. There are many effective treatment modalities for diabetes, including oral medications, injectable medications, continuous glucose monitors, and many insulin delivery systems; however, behavioral change is also essential so that the individual and their loved ones can incorporate necessary modalities. There are multiple empirically-validated interventions to help with behavior change, however they are rarely incorporated into standard care. There are psychologists that are specifically trained in the psychosocial aspects of medical conditions, however few are trained in the minutia of diabetes management.

Unfortunately, there is not a “one-size-fits all” treatment plan for people with diabetes. This makes diabetes management more complicated for the healthcare professional as well as the person living with it. Living with diabetes is encompassing and seeking assistance from a psychologist can be an invaluable tool. PWD have unique psychosocial needs that all psychologists might not be familiar with.

  1. Affects every aspect of one’s life – Most PWD will say that a majority of their daily decisions are based on diabetes. It helps to shape behavior related to trying new foods, traveling, finances, sleeping, and physical activity. Even if one has a consistent schedule with regards to work, family, exercise, and eating, blood sugars can vary due to the effects of hormones and emotions. PWD will often limit new experiences due to fear related to negative effects on glucose management. Family members then begin to complain of rigidity and difficulty in planning family activities. Sometimes, the thought of trying something new can be overwhelming. This can influence one’s satisfaction with life choices and quality of life.
  2. The “what-if’s” – Life is full of many curve balls. Living with diabetes is another big one. PWD can have consuming thoughts related to: healthcare coverage of medical supplies, access to supplies they prefer (versus those on the preferred insurance list), diabetes-related complications that can occur even with the best glycemic management, the financial sacrifices of living with a chronic condition, fear of passing on “the gene”, fear about end-of-life care and who will be their advocate, fear about consequences of a low blood sugar while driving and having an accident, or having a seizure at night while no one else is home, etc. These are real-life concerns that PWD face and it can be challenging for these individuals to speak to loved-ones due to the fear of inducing additional fear in them. There is a concern of not wanting to pass the burden or being an additional stressor for the family. This makes it very difficult for the PWD to manage these fears more effectively.
  3. “You can’t eat that!!” – PWD are often told “you can’t eat that…you have diabetes” by well-intended people, not realizing the psychological effects those few words are having. Typically, this occurs with high carbohydrate/fat foods and alcohol. These well-intended individuals typically think of “that aunt who had diabetes and lost her foot because she ate tortillas everyday”, not realizing that the current thought is “all foods fit”. This approach is inclusive of all foods and beverages, and, although, there are some foods that are healthier than others, PWD CAN eat whatever they want, including dessert, pasta, and potatoes. The idea of a “diabetes-diet” or “diabetic-friendly” food is long gone. It is more about having healthy eating habits and eating in moderation. Yes, there are PWD that choose to eat low-carb, but that is certainly not a requirement to have adequate glycemic control. In fact, many PWD would rather have regular, full-sugar chocolate or ice cream than the alternative low-sugar/sugar-free options.
  4. Emotional up’s and down’s – PWD are not unique, they experience the range of emotions like everyone else. PWD experience good and bad things in life, but not everything is always about diabetes. Someone could be having a bad day for a reason other than diabetes, such as a fight with a partner or doing poorly on an exam. Emotions do add an additional layer of complexity, as stress alone increases blood sugar. Driving in traffic, dealing with insurance companies, paying bills, caring for a young child, for example, are all stressful events that can increase blood sugar, independent of food consumption.
  5. Numbers, numbers, numbers – Healthcare professionals measure a PWD’s success by numbers. There is intricate math that must be calculated prior to taking insulin injections. There are also insulin-to-carbohydrate ratios, drop values (amount your blood sugar drops with every unit of insulin), HbA1C values (a measure of average blood sugars over the preceding 8-12 weeks), post-prandial glycemic levels, fasting blood sugar levels, testing blood sugars X-times per day, and counting carbohydrates. There is also the cost of each copay, insurance premiums, and deductibles. It can be extremely easy for a PWD to become hyper-focused on these numbers and to engage in unhealthy measures to keep numbers within a certain parameter. Controlling eating behaviors and restricting insulin dosing (diabulimia) are common behaviors.

Having diabetes is not about being a “good girl” or “bad girl”. There are many things outside of food that contribute to changes in blood sugar. Living with diabetes adds additional levels of stress that people not living with a chronic condition can find difficult to understand. Working with a psychologist who is knowledgeable about diabetes can be vital to a PWD’s well-being. Psychologists need to realize that there are some underlying challenges that PWD face and that living with diabetes goes beyond one’s physiology. There are social, economic, political, and behavioral burdens for those living with diabetes. Lifestyle is a large component of diabetes self-management and psychologists are uniquely trained in this. The American Diabetes Association makes recommendations that comprehensive diabetes care include psychological screening and interventions, as well as appropriate referrals to qualified mental health professionals.

References

Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care2016;39:2126–2140.

Editor’s Note: If you have questions, or are interested in having Dr. Bereolos conduct a training, please email her.