I read desperate pleas from parents and spouses online about family members who are not keeping up with their diabetes management. It pains them when their loved ones are not checking blood sugars, lying about checking, or lying about the results if they do, or not taking insulin. They turn to others in the online forums for helpful advice and suggestions, and some of the responses are horrifying:
“Take them to a hospital and show them diabetics with amputations. Tell them that if they don’t take care of themselves, that’s how they’ll end up!”
“Bring them to a dialysis center and force them to talk to people going through dialysis. They’ll see what happens if they don’t check their blood sugar!”
“Show them pictures of wounds they could get! Scare them into action!”
“This type of fear-based advice is often misunderstood and not well accepted by the person with diabetes,” says Dr. Nicole Berelos, PhD, MPH, CDE, a clinical psychologist specializing in behavioral medicine. “More important is to have discussions about these concerns, rather than make assumptions about the daily hassles of living with diabetes and the endless possibilities.”
From the moment of diagnosis, people with diabetes already live with secret fears of complications. Forcing people with diabetes to view others with complications, in my opinion, is cruel. It’s also insulting to those, who despite their best efforts of diabetes management, may still have complications. Some people with very good blood sugar control can have a number of complications, while others with much worse control have minimal complications.
Dr. Berelos says there are two different kinds of support: positive and negative. Positive support can be seen when loved ones provide empathy, assistance in getting to appointments, or act as a sounding boarding without imposing judgment. Unfortunately, it is the negative support that often prevails. It is these “should not’s” such as: You should not eat that! or Shouldn’t you have checked your blood sugar? that become ever so frequent. In these situations, Dr. Berelos states, the person with diabetes usually gets angry and frustrated, which alone, can increase blood glucose.
If Fear Isn’t A Motivator, Then What Is?
An understanding of why a person isn’t checking blood glucose or taking their medication is the first step in being supportive. And what motivates a person to do better depends on the reason for the lapse in diabetes management, but I will start with this: hope and support. These two things apply to everyone, but it bears extra importance for those with diabetes.
Regardless of the reason, the conversation you have with your loved one about their diabetes management should end with one of the following:
“Diabetes is a difficult disease to manage. While I may not have diabetes, I want you to know that you have my support. How can I help you to make your diabetes feel more manageable?” Or…
“I am really concerned about you and know that diabetes is a big deal, can you teach me about what it is like to live with diabetes?”
Your loved one may not know the answer at that time, but it opens the door for more honest conversations.
Fear will not help. Providing support for your loved one, not accusations and admonishment for numbers on a meter (or no numbers at all on a meter), is what helps. It begins with that crucial first conversation to let the person with diabetes know that you are there, you care about them, and you want to support them. It’s the important step that many people forget in their quest to find the answer to a lapse in diabetes management: you have to ask the person with diabetes what they need. It’s with that understanding that you can help motivate them to better health.
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.)
I have multiple complications and have also faced many judgements, some from other pwd’s, regarding me “causing” them. This is painful and shameful. The only thing I can do is turn the other ear and focus on feeling proud that I continue to live an active and vibrant life.
Thank you for this, Christel. Very powerful stuff. I love the point about letting us know that you (a provider) are there, care about us, and want to support us.
As a parent of a young adult with diabetes at age 9 , I understand her interest in not being defined by her diagnosis. I also have enormous fears about the complications of diabetes. However, we always treated her with respect, asked our family to observe any dietary or other constraints she observed and did not say when she get ill (as best we could), “could it be your diabetes? What are your blood sugars?” It’s so hard and mostly for her.
I am not sure I can love this more. So agree. Parents need to realize this when dealing with their kids too. THANK YOU
I have multiple complications and have also faced many judgements, some from other pwd’s, regarding me “causing” them. This is painful and shameful. The only thing I can do is turn the other ear and focus on feeling proud that I continue to live an active and vibrant life.
Thank you for this, Christel. Very powerful stuff. I love the point about letting us know that you (a provider) are there, care about us, and want to support us.
As a parent of a young adult with diabetes at age 9 , I understand her interest in not being defined by her diagnosis. I also have enormous fears about the complications of diabetes. However, we always treated her with respect, asked our family to observe any dietary or other constraints she observed and did not say when she get ill (as best we could), “could it be your diabetes? What are your blood sugars?” It’s so hard and mostly for her.
I am not sure I can love this more. So agree. Parents need to realize this when dealing with their kids too. THANK YOU