A few months ago I wrote about Eva Saxl, a type 1 diabetic who managed to survive World War II in the Shanghai ghetto by making homemade insulin. After immigrating to the United States, Saxl became a spokeswoman for the American Diabetes Association. During the era in which Saxl lived, there was a serious stigma attached to having diabetes. As a result, most diabetics went to great lengths to hide their condition from others. Saxl’s willingness to speak openly about diabetes was revolutionary.
As I researched Saxl’s life, I was particularly struck by the mention of prejudice against diabetics–all the more so because it seemed removed from my own experience. Although diabetes isn’t my conversation opener of choice, I’ve never had a problem explaining my condition if I need to. Until recently, if someone had asked me if I felt the need to hide my diabetes, I would have thought: Why should I? It’s not my fault that I have diabetes, and there are many situations in which it could be important for other people to be aware that I’m diabetic.
A few days ago, however, my brother Julian and I discussed the fact that even though we aren’t embarrassed to admit we have diabetes, non-diabetics often make us feel as though we should be. Once, when I went to have blood drawn before an endocrynologist appointment, a nurse asked me if I had a phobia of needles. I joked that it would be tough if I did, since I had type 1 diabetes and needed to give myself several injections every day. “It’s so sad how young people are getting diabetes these days,” she said, and launched into a discussion of child obesity and the benefits of whole grain versus white bread. It took me a few minutes to realize that she wasn’t just discussing diabetes in general, but was trying to give me advice that she felt I needed. My brother complained that when people find out that he has diabetes, they often exclaim: “But you’re in such good shape!” or “You don’t look like you have diabetes.” Both of us have also encountered the shock of friends or relatives if we eat anything sweet, or the admonishing “Are you sure you’re allowed to eat that?”
Comments like these reveal some of the misconceptions that many people still have about diabetes. The nurse lectured me about healthy eating because she thought that bad dietary habits had caused my diabetes. People are surprised that my brother is fit and athletic because they assume that diabetics must be overweight. Most of these false impressions can be explained away with little effort. Nevertheless, they have the potential to be extremely irritating. Why are they able to make us feel guilty or defensive when we have nothing to be ashamed about?
When Julian and I thought about it, we realized that all of these misconceptions boil down to one assumption: that you, the diabetic, have brought on diabetes yourself. This belief–which seems to have persisted from Saxl’s time–allows the non-diabetic to take the moral high ground. Even if we correct a specific misunderstanding (such as yes, type 1 diabetics can eat dessert sometimes), it’s hard to counteract the underlying impression that the diabetic is somehow at fault.
With all of the advances in diabetes research, it might seem strange that this misconception still exists. I feel that part of the problem has to do with the lack of differentiation between type 1 and type 2 diabetes. Type 2 diabetes, unlike type 1, is in part based caused by factors like weight, eating habits, and lack of exercise. Because type 2 is much more prevalent than type 1, it’s likely that if a non-diabetic has any contact with a diabetic, it will be with a type 2 diabetic. It’s also inevitable that most advertising about diabetes products is geared towards type 2 diabetics. Even Oprah’s recent episode on diabetes focused mainly on type 2. Keeping this in mind, it’s hardly surprising that most people are unaware of the differences between the two forms of the disease. However, it would also be an oversimplification to make an equation like: type 1=not your fault, type 2 = your fault. Type 2 diabetes is in part triggered by a person’s habits, but many type 2 diabetics also have a genetic predisposition towards the disease.
Ultimately, no one should assume that any type of diabetic deserves the blame for their disease. But this fact isn’t widely understood by our society. It seems to me that the only way to counteract the stigmatization of diabetics is not to hide the fact that you have diabetes, but instead to follow in Saxl’s footsteps and openly correct misconceptions whenever you encounter them.