While type 1 diabetes is caused by an immune system that destroys insulin-making cells, type 2 is often thought of as a disease caused by too much food and too little exerciseand indeed, it can be exacerbated by those factors. This perception unfairly casts type 2 diabetes as a willpower problem.
Genes and other risk factors play a complex role in determining who gets type 2 diabetes and who doesn't. While the likelihood of having type 2 diabetes increases with age and weight, that isn't always the case. Anywhere from 10% to 20% of all people who have the disease are not overweight. What's more, many overweight people never get diabetes.
"People think, 'Oh well, you deserve it: You've overeaten, you've abused yourself, and that's why you have diabetes,'" says Susan Guzman, PhD, a senior psychologist with the Behavioral Diabetes Institute in San Diego.
People with type 2 diabetes sometimes shy away from talking about it. At first Lisa Moore, 25, of Austin, Texas, wouldn't tell anyone. "It was probably a mixture of being a self-conscious girl in a society where looks are so important and the stigma of diabetes," she explains.
She felt that if she told people, then they would think it was her faultthat if she had worked out harder or eaten better, she might have prevented it. But when she did decide to tell her friends, she found them to be very supportive.
Kim Doty, 45, of Colorado Springs, Colo., was diagnosed with type 2 diabetes in 2006. "Diabetes is an epidemic," she says, "but your average person associates it with obesity and being overweight, and you kind of get the attitude from people that it's your own fault. There's a certain amount of shame."
Telling the truth can be empowering, for you and for others.
"Once you start talking, a person will say, 'I have diabetes,' or 'I know a person who has diabetes,'" says Loretha Huff, 60, who lives in Chicago. "It opens up the opportunity to share and lets you know that you're not the only one on a journey."
Lack of knowledge contributes to stigma
Talking about diabetes can help, because part of the problem is a lack of knowledge about diabetes in general.
"There's an important genetic contribution to developing diabetes that's out of people's control," says William Bornstein, MD, an endocrinologist at the Emory Clinic in Atlanta. "Secondly, it may be actually harder for folks with diabetes to lose weight, and that may be part of the disease as well."
In some cases, patients can develop complications after years of carefully controlling their blood sugar and people will still accuse them of causing their own problems because they saw them, say, eating a piece of cake.
"That's not true at all. I mean, their diabetes was under good control. In that situation, having a piece of cake was no worse for them than it is for anybody else," says Dr. Bornstein. "So I think that that's an unfortunate aspect of diabetes and we need to do a better job of helping understand that this blame is not appropriate and not helpful at all."