The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.
I had only read the introduction when I wanted to cry. Why is there so
much judgement surrounding diabetes? Why do people living with diabetes
feel that they are either good or bad? Well, as Ginger points out, its
because there is so much good and bad mentioned when talking about the
disease.
Your readings are good or bad. They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one. The food you eat is either good food or its bad and a diabetic shouldn’t eat it. Your A1c when you see the doctor is either good or bad.
The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”. Another person had mentioned that someone had died because they had the “bad kind of diabetes”. I wanted to say that there is no good kind! You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way. It wasn’t my place to educate at that time.
The good kind I assume, is the kind that is managed by diet and exercise but is it really that good? You still have to live with guilt for each piece of food that enters your mouth. You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.
What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?
Personally, it is always bad. In all of those cases, our bodies have rebelled against us and are not working as they should. We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t. That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.
This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes. Sadly this is not the case. Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier. Unfortunately, that “good and bad” issue stops that from happening. People fear that they will be “bad” if they are on insulin. This further translates to the thought that those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.
I thought about other diseases and wondered if any others have it “bad”. Cancer has stages. Diseases like MS are referred to has having “full blown MS” versus the early stages. I could not think of any other disease that allows people to have the “good kind” or the “bad kind”. Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes. We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.
What is the answer? How do we fix this? I don’t think that there is a quick fix. I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”. We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.
Your readings are good or bad. They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one. The food you eat is either good food or its bad and a diabetic shouldn’t eat it. Your A1c when you see the doctor is either good or bad.
The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”. Another person had mentioned that someone had died because they had the “bad kind of diabetes”. I wanted to say that there is no good kind! You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way. It wasn’t my place to educate at that time.
The good kind I assume, is the kind that is managed by diet and exercise but is it really that good? You still have to live with guilt for each piece of food that enters your mouth. You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–”You have the bad kind of diabetes”.
What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?
Personally, it is always bad. In all of those cases, our bodies have rebelled against us and are not working as they should. We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t. That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.
This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes. Sadly this is not the case. Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier. Unfortunately, that “good and bad” issue stops that from happening. People fear that they will be “bad” if they are on insulin. This further translates to the thought that those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.
I thought about other diseases and wondered if any others have it “bad”. Cancer has stages. Diseases like MS are referred to has having “full blown MS” versus the early stages. I could not think of any other disease that allows people to have the “good kind” or the “bad kind”. Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes. We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.
What is the answer? How do we fix this? I don’t think that there is a quick fix. I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”. We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.
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