Living with diabetes is a lifelong commitment and can easily lead to “diabetes burnout”. It is more common in type 1 diabetes since the diagnosis often presents at an earlier age. Taking daily insulin shots makes the diabetes challenge even more difficult. A new, small study confirms this already known and frequently discussed condition. “Diabetes Burnout” is real and can also occur with type 2 diabetes. Since type 1 and type 2 are considered, “somewhat different diseases”, the treatment for burnout should be more individualized as well. You and your health care provider need to distinguish between having depression, anxiety or “diabetes burnout” before a treatment plan can be developed. People with diabetes experience 20% more anxiety than those without it. They also have 2-3 times the amount of depression compared to people without diabetes. There is a definite mind-body connection. Burnout is different than regular anxiety and depression – it needs to be diagnosed. When it remains untreated, it can become another factor leading to destructive behavior, a higher incidence of diabetes complications, and worse overall health outcomes.
What is diabetes burnout?
Diabetes burnout or diabetes distress is a state of mind. It is not always deliberate or a choice. It occurs, “when you become both physically and mentally exhausted about your own care or as a care-giver helping someone with diabetes.” A core concept of diabetes burnout is, “a feeling of doing the same thing over and over again and being frustrated that it is not producing the right or desired outcomes.” The real problem is submission to the condition and totally giving up. Diabetes requires 24/7 care, without a break and can be overwhelming to anyone. You may feel detached, apathetic, isolated, judged, annoyed, inconvenienced and discouraged. Feelings of being alone, burdened, frustrated, tired, angry and hopeless/helpless can happen. Resentment finds a way into your life. Negative emotions swell when you have been trying so hard for management but not seeing positive results. People who have diabetes distress and burnout can’t decide if they control their diabetes or if their diabetes controls them.
How long can diabetes burnout last?
Diabetes burnout can come on at any time and last from a few hours, to days, to weeks, to months and maybe a lifetime if not diagnosed and treated. Almost all people with type 1 diabetes experience it at some point of their lives and up to 50% of all people with diabetes experience distress or burnout in their lifetime.
What things may cause/trigger burnout?
Diabetes burnout is specific to you. Each person’s experience can be unique. Some people hate pricking their fingers, taking daily medication and others are bothered by carbohydrate counting. You have a right to your feelings, but you do not want them to, “threaten your well-being.” Find out if something specific triggered the burnout or if it is just a generalized, overwhelming feeling. Is it life’s stress which makes your health less important? Did something specific set you off? What happened to make you want to give up or are you just worn out after caring for yourself after all this time?
Possible triggers of diabetes burnout:
- Checking blood sugars several times a day. Getting anxious and annoyed after each reading -what did I do wrong?
- Going to monthly, every 3 month or yearly medical screenings and evaluations: optometrists, retinal specialists, dentists, dietitians, CDEs (certified diabetes educators), neurologists, endocrinologists, cardiologists, psychologists, GI specialists and podiatrists. Continuous medical appointments and follow-up visits are time consuming and require constant planning.
- Shopping for healthy, fresh food. Cooking healthy food and eating only healthy food. The expense, reduced portions and food choices can be tedious.
- Carrying glucose tablets or carbohydrates for low blood sugars. Having glucagon shots ready for those with type 1.
- Taking daily medications/insulin. Taking medications correctly and on time. Filling medication prescriptions. Having to carry and take medications whether out for a meal or on a trip. Paying out of pocket or co-pays for all medications.
- Being prepared with diabetes supplies required for blood glucose management all the time.
- “Having to exercise” 5 days a week for at least 30 minutes, instead of just wanting to exercise.
- Relying on fancy, expensive and confusing technology: new glucose meters, insulin pumps, insulin pens, and continuous glucose monitors.
- The general cost and burden of diabetes.
Can you recognize the signs of burnout?
Occasionally, you may let diabetes management fall through the cracks. You may overeat during the holidays, knowing what can happen to your diabetes control and in spite of your diabetes. You may start to lie to family members and health care providers about your blood glucose readings. You may not even test and just record false numbers in your log book. You may simply overeat to prevent experiencing hypoglycemia and feeling awful. Guilt and isolation can occur. You could just stop taking your oral diabetes medications or skip the gym for weeks. Pay attention to your own feelings. Is this a rare one time feeling or a daily occurrence?
Standard assessment tools
You, your family or your physician may recognize this negative behavior without any formal tools. If there is uncertainty, then your health care provider may use special assessment tools. There is a 2-question test called the Diabetes Distress scale, DDS-2. They include:
- Are you feeling overwhelmed by the demands of living with diabetes?
- Are you feeling that you are often failing with your diabetes regimen?
If there are concerns noted, there is a follow up to this: a 17 question, DDS-17, which is much more specific dealing with 4 issues of emotional stress. Another standardized tool is Problems in Diabetes scale, PAID, which is a 20-item scale describing common problems and situations for type 1 or type 2 diabetes. Explore the Behavioral Diabetes Institute’s on-line site to find out more. They also offer a free quarterly E-newsletter.
Avoiding diabetes burnout
- Make a list of possible obstacles such as lack of time, finances or forgetfulness. Work through them with a friend, family member or part of your diabetes care medical team.
- Use checklists of what you need to accomplish and check them off as they are completed. Make sure the lists include what is important to you. It will keep you more motivated and organized.
- Health care provider support. See if you can connect with one special person on your team and set up a direct line of communication. It could be your certified diabetes educator, dietitian or social worker. It does not have to be your primary care physician or endocrinologist. Your go-to person can help you get back on track and refocus on what is necessary for proper diabetes care.
- Use family and friends to your advantage. Do you surround yourself with diabetes police? Those constantly checking on your behavior, telling you what you did wrong or being too strong for you? Then pull back. Find those people who offer support in a kind and gentle way without being judgmental.
- Ask for a social worker, mental health counselor, psychologist or a therapist if you are not getting the correct feedback to help you push forward. Find a mental health worker who specializes in chronic health conditions.
- Online support communities. There are literally hundreds of reliable websites to help you with needed emotional support. The American Association of Diabetes Educators has an online community page. They include patients, caregivers, providers and foundations with solid sharing and advice. Large forums are Children with Diabetes, Diabetes Daily, Diabetes Strong, Beyond type 1 Diabetes, Diabetes Sisters, Tu Diabetes. There are diabetes blogs and on-line E magazines such as diaTribe or A Sweet Life.
- Get off social media. Sometimes you are comparing yourself to everyone who is doing great and the pressure can be huge. Distance yourself until you are back in a better mental place. Use a simple journal to record your own feelings. Share with a professional if you want to. Read patient friendly diabetes journals which give you information and support without feedback.
- Local support groups. Some people prefer meeting in a live group situation, locally. Look up diabetes support groups through the hospitals, diabetes management centers and physician offices.
- Try new diabetes-friendly recipes to break the boredom in your regular eating pattern. Consider exotic and unfamiliar flavors using fresh herbs and different ground spices.
- Be proactive, not reactive. Try to alleviate the problem before it happens. Don’t stress about a few high blood sugars. Look at the AIC or time in range numbers instead. Do not criticize everything you do – find the positive in what you are doing.
- Be thankful and get out of your own head by volunteering for others.
- Take baby steps. Do not think in only black and white. Go to the gray zone. If you want to get your A1C down from 12%, take it 1% at a time. Figure out small changes you can easily make to help bring it down. Big goals can be unrealistic and exhausting.
- Understand there is, “no perfect diabetes control” hour after hour, day after day, for anyone.
- Fight fear with knowledge. Go to an accredited diabetes management program. Ask questions. Learn the facts. Be informed.
No one’s life is perfect and yes, diabetes can make life even more challenging on a daily basis. Each day is a different day, some more difficult than others. Remember, you did not give yourself diabetes, and luckily you are living with diabetes in 2020. Treatment and technology are on your side. Diabetes burnout is real. Learning to cope with proper management skills happens when you have a good understanding of your disease and a strong support system in place.