When you were first diagnosed with diabetes, perhaps one of your friends, a family member, or even a health care provider (HCP) told you something reassuring like, “Don’t worry, diabetes is easy.” Really?!? Then they went on to say all you need to do is make some teeny tiny healthy changes in your behavior, like exercise regularly, check your blood sugars frequently, take your new medications and don’t ever forget them, make sure your blood pressure never gets too high or too low, pay attention to portion sizes, and on and on. Oh and don’t worry if you start to feel overwhelmed, because you have a 10-minute appointment with your doctor next month. Certainly you’ll get all your questions addressed then. See, just like you were told, diabetes is easy, right??
Of course, you know that’s not the way it really is. Diabetes can be tough, even though well-meaning friends, family, and even some HCPs may not realize this. Not surprisingly, many people with diabetes are struggling. So, if you’ve ever felt down, discouraged, or frustrated about diabetes, know these are very common feelings. You are not alone! There are often also unconscious obstacles that can further dampen your enthusiasm to manage diabetes. Here’s what we have found to be the most common.
The Top Five Obstacles in Controlling Your Diabetes
1. Harmful Beliefs
How you think about diabetes has a big influence on how you feel and what you do. There are two common beliefs that can be problematic. The first is “diabetes is no big deal.” Perhaps a friend or even your HCP told you this. Perhaps you think since you aren’t taking medications, or are not on insulin, then your diabetes doesn’t need to be of great concern. Since long-term complications typically come on slowly over the course of years, it is seductive to think you can start worrying about them later. As one of our patients said, “I promise I’ll get serious about this disease, just as soon as something falls off.”
The second belief is “diabetes is a death sentence.” You’ve probably heard about complications associated with diabetes. It can be scary stuff, and if you become convinced there’s nothing you can do to stop them from occurring, who wouldn’t get discouraged? For those who have type 2, there are other misbeliefs that can cause you to feel guilt, shame, and discouragement, and these can get in the way of taking action. Many people believe getting type 2 is their fault. But type 2 diabetes is—to a large degree—a genetic disease. When you have the right genes, certain factors such as being overweight can trigger diabetes. More and more Americans are becoming heavier and developing type 2 because most jobs now require little physical activity, life is more stressful, and too many foods tempt us that are high in calories, large in size, and much too convenient. There is a powerful interaction between genes and the environment that leads to type 2 diabetes. Diabetes is not your fault, but there is a lot you can do about it.
2. Vague or Unreasonable Ideas about What to Do
Even people who have been through comprehensive diabetes education programs may not be entirely clear about what they need to do to manage diabetes. There is a lot to learn, and it can be confusing. Some people have overly demanding ideas about what needs to be done. One of our patients said, “I know I’m supposed to give up all my favorite foods, eat perfectly, and never cheat.” She believed she needed to be “perfect”, but since this is impossible to achieve, she ended up feeling like a failure every day. Other people have notions about what to do that are too vague, like, “I was told I have to start eating healthy, whatever that means.” It’s tough to be successful when you don’t have a clear, concrete, and achievable plan.
3. Poor Social Support
If you’re alone with diabetes, it’s tougher to deal with the disease. When you have people in your life rooting for you, making and maintaining some of the tough changes that diabetes demands may become more doable. For example, trying to make diabetes-friendly changes in how you eat is easier when your family joins you in that endeavor. Making time for regular exercise might be less difficult if your spouse volunteers to go with you.
But sometimes friends or family members provide you with too much support, taking on the role of the “diabetes police.” The diabetes police are loved ones who decided that God (or someone) deputized them to help you manage your diabetes, whether you like it or not. They say things like “Should you be eating that?” or “You seem upset, maybe you should check your blood sugar.” They are usually coming from a place of love and are trying to help—even though they are driving you crazy. Since most people don’t like being nagged, there is a tendency to act out and do the opposite of what has been suggested. What a mess!
4. Life Gets in the Way
Most of us live in a challenging environment for managing diabetes. If you have a lot of stress in your life, your diabetes care can suffer. If you are terribly busy, it can be hard to find the time to exercise or even to check your blood sugars. And most of us are terribly busy. Money is another big issue. Many people can’t afford their medications, and many don’t have enough money for health insurance. Perhaps the biggest culprit is the culture in which we live. In the United States, life is sedentary and food is served and sold in very large portions, both in restaurants and at home. And, as you know, these are not necessarily the healthiest foods in the world. So Americans grow heavier and heavier as the years go by. This is not because we are gluttonous or lazy, but it is the insidious influence of the culture that surrounds us. However, this doesn’t mean we are helpless. As discussed below, you can fight back.
5. Discouraging Results
Many of our patients have given voice to this problem. Here are some representative comments:
“I did everything I was supposed to and my blood sugars are still all over the place!” And, “I tried that new medication and I don’t feel any better.” When you feel like you’ve put forward your best efforts and you still don’t see the results you expect, it can be hard to stay enthused.
Coping with errant blood glucose results is probably the most aggravating aspect of this problem. Many people can start to develop a harmful relationship with their blood glucose monitor or continuous glucose monitor (CGM). It can start to influence how they feel. Blood glucose running too high or too low in the morning? Then you must be a bad person, a failure. When you start letting your monitor determine your self-worth as a human being, you may eventually start to hate it. And who wants to check their blood sugars then?
Solutions to Consider
Diabetes is tough because there are a lot of obstacles that make it tough. But that doesn’t mean there aren’t things you can do. Here are five solutions to consider.
1. Challenge Your Own Discouraging Beliefs
The most important step you can take is to get educated about diabetes. And since you are reading this article, you have already gotten started! If you are feeling scared or hopeless about diabetes, remember this: while poorly controlled diabetes can cause serious problems, well-controlled diabetes is the leading cause of… nothing! With good care, odds are you can live a long, healthy life. Your risk of running into long-term complications can be dramatically lowered when you’re working closely with your doctor to keep your blood glucose, blood pressure and cholesterol levels within a safe range. In fact, you may find that following a diabetes-friendly lifestyle that includes regular activity and a healthy way of eating can even extend your life. Did you know the world-famous Joslin Diabetes Center gives out medals each year to people who’ve been living well with diabetes for 50 years or longer? 50 years! And in the past 20 years, the number of medals awarded has more than tripled.
2. Find Out How You’re Really Doing
Frustrated that you haven’t seen positive results from your efforts? Maybe it is time to reconsider how you measure success. Many people judge how well they are doing by how much medication they’re taking. And if insulin is needed, that must mean your diabetes is now very serious. When people think this way, discouragement is almost inevitable. But let’s consider this: the individual who takes no medication and has an A1C of 9.0% is at a much higher risk of developing complications than the person who is on multiple shots of insulin and has an A1C of 7.0%. And remember that no matter what you do, type 2 diabetes changes over the years and can require more and different medications. This is not your fault, and it doesn’t mean that your diabetes is now “worse.”
Other common ways people measure diabetes success is by how well how they’re eating, how they’re feeling, or whether or not they ever see a blood glucose level higher than, say, 200 mg/dL. But none of these are appropriate ways to judge how well you’re doing. Instead, turn to medical tests that help determine diabetes health, like the ones that measure your A1c, blood pressure, and cholesterol. When the results of these tests are in a safe range, you can be assured that you are doing well and your risk of complications is pretty darned low. You, not just your doctor, need to make sure you get these tests done regularly (blood pressure and cholesterol at least once yearly, A1c every 3 to 6 months). And you need to know the actual numerical results of these tests and what they mean.
3. Develop a Sensible, Personalized, Action–Oriented Plan
To manage your diabetes more effectively, what exactly should you do? If you were going to make one positive change over the next week, what would it be—and why? And what is stopping you from taking this step? These are not easy questions to answer, but they are critical. To succeed with diabetes, you need a plan and a reason for taking action.
Set a specific, small, short-term goal for action. If you just have a vague sense that you should be “exercising more” or “checking blood sugars more often,” you might believe you are never doing enough. To start, pick one action that might have an impact and be specific. For example, exactly how much exercise this week? What are you going to do and when? Break it down into small steps that are achievable and reasonable. Don’t try to change everything at once; the best approach is one small healthy step at a time.
4. Seek Out Rewarding Relationships
If you only have time to make one change, this is it! If at all possible, don’t do diabetes alone. Reach out to people in your life for the love and support you need. At a practical level, invite one or more of your loved ones to join you in making a healthy change. For example, you will be more successful at diabetes-friendly dietary changes if you can convince your family and/or friends to take those same healthy steps along with you. Regular physical activity is much easier when you have an exercise partner. Don’t know anyone who might join you in, say, taking a walk around the park each morning? Then perhaps it is time to knock on a neighbor’s door. Make a new friend, and help someone else make a healthy change in their life as well. When you are looking for loving support, remember that the key is to be as specific as possible. Don’t just ask your spouse to “be more supportive”; instead, explain that you would like him or her to—for instance—sit with you at the kitchen table every morning when you check your blood sugars. Also, consider attending a diabetes support group or joining an online forum. It is a powerful experience to connect with other people who are going through some of the same, or similar, experiences. Your doctor, local hospital, or local chapter of the American Diabetes Association may be able to suggest a group in your area or suggest one of the online forums that might be good for you.
5. Do Something about Less than Rewarding Relationships
If your loved ones are acting like diabetes police, select a quiet, dispassionate moment to discuss this matter with them (or perhaps consider writing them a letter). Let them know that you understand they mean well, but they must realize that their nagging is not helpful. Remember, since they love you, odds are good that they will never stop trying to be helpful. Therefore, you must give them something to do, something different, instead. You might explain, for example, that always asking you “should you be eating that?” is not helpful, but if they could please remember to keep the refrigerator stocked with diet soda, that would be terrific.
Diabetes care is a job, and it is not a job you volunteered for! As we have described, there are many reasons why managing diabetes can be emotionally tough, but there are solutions as well. So don’t give up. With effort and support, you can live well with diabetes!
For more information about the emotional side of diabetes, please visit us at the Behavioral Diabetes Institute, www.behavioraldiabetes.org.
Want to know more about other common diabetes beliefs that can get in the way? Get the real facts by checking out BDI’s free booklet Don’t Freak Out: 10 Things To Know When Diagnosed With Type 2 Diabetes.
To learn more about other common discouraging beliefs about diabetes and strategies to fight back, check out BDI’s booklet The Emotional Side of Diabetes: 10 Things You Need to Know.
Work together with your doctor to help you choose a place to start that has potential for some real payoff with your diabetes. For more helpful examples and specific strategies, see Dr. Polonsky’s book, Diabetes Burnout: What to Do When You Can’t Take It Anymore.
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Financial issues is my personal adversary… the cost of a dexcom and insulin and needing to take time to exercise (safely, because I have nervous system damage from sepsis) requires so much… I was diagnosed with type 1 at 38 because of an autoimmune disease. Changed my entire life in ways I could never plan for. Has cost me everything I had… no more 401k (had to cash it out) no more stocks (had to cash those out too)… all just to pay for the basic stuff I need. Got my a1c from 15.4 to 6.1. Then Financial problems caught up with me and I lost my home, but finally got medical assistance… unfortunately living in your car during the hottest days on record isn’t good for insulin so a1c is 10.5 now.
Hard not to get depressed….
So sorry for what you are going through. Diabetes is hard enough to handle, but it is even tougher when life (like financial hardship) gets in the way.
I too was diagnosed with sudden onset type I due to autoimmune issues (age 57). Total agreement with the comment about life changing in ways I never imagined, starting with injecting insulin and learning there is no cure for T1D. I didn’t know anyone with diabetes, didn’t know whether I had type I or 2 (and didn’t know the difference). I read a lot and focused on the million things I needed to do EVERY DAY or else. I live alone and don’t have a support system, so was grateful to learn TCOYD would be in my city soon after I learned I had T1D. It was glorious. I’ve managed my blood sugars well the past 7 years but its a constant effort that sometimes has me running on empty in a dark tunnel. I feel shackled to an insulin pump and cgm, but I am also grateful that I qualify for help with insurance. I have several other chronic health issues I have to manage daily. I live on disability but feel like managing my health is my full-time job but I have no boss or co-workers. I plan to try “taking a vacation from diabetes.” Honestly never considered there are ways to do that short-term. Thanks for the information and suggestions. Most of all, thanks for the affirmation that living with T1D is HARD.
Absolutely Robyn, it’s VERY HARD. Hang in there. We don’t get (or give ourselves) enough props for doing everything we do on a daily basis, and you’re doing a great job. Glad you are part of the TCOYD family! 🙂
Great content! This is exactly the sort of thing I was looking for. Thanks for your help