Dealing with the stigma of diabetes
It took me a long time before I let diabetes out of the closet. For years I avoided doing shots, testing my blood sugar and reaching for sugar in public when my blood sugar was low. Even today, after living with type 1 diabetes for 27 years, I am not totally comfortable telling people that I have diabetes. At first I kept quiet about diabetes because I didn't want to be different than my peers, but now I sometimes keep quiet because of the stigma attached to diabetes. And I know that I'm not alone. In my book, The Smart Woman's Guide to Diabetes, Sloan Wesloh explained her own hesitation to tell people about being diagnosed with diabetes.
"When I went to public high school, I was the only one in the entire school with diabetes. I went back to school two days after coming home from the hospital. I didn't know anyone with diabetes, and people were asking me why I had diabetes when I wasn't obese. I felt incredibly alone."
Janis Roszler, MSFT, RD, CDE, LD/N, author of Diabetes on Your Own Terms (Marlowe & Company), co-author of The Secrets of Living and Loving with Diabetes (Surrey Books), and co-author of Sex and Diabetes (ADA) says that stigmas can be dangerous for people with type 1 and type 2 diabetes. Stigmas emerge in the absence of accurate information. Roszler offers examples and dangers of common stigmas for people with type 1 and type 2 diabetes.
Type 1 diabetes stigmas
1. Because of the potential complications many believe are inevitable (not true), many people don't think folks with type 1 make good marriage partners. They also may not date or marry a man and woman with type 1 diabetes.
Danger of stigma: folks with type 1 may have a more challenging social life.
2. Some employers believe that type 1-related medical issues may interfere with their ability to work or they worry these individuals will have a hypoglycemic event at an inconvenient time.
Danger of stigma: Some employers could illegally refuse to hire folks with type 1 diabetes, may let them go from a position, or won't give them certain responsibilities.
3. Some misunderstand the role of insulin and think it gives a person an unfair advantage in sporting events.
Danger of stigma: The person with type 1 may have to repeatedly defend his or her use of insulin when entering competitions and may have to deal with dismissal from an event.
4. Some people feel that people who inject insulin and/or test their blood sugar in public are unsanitary and/or disgusting.
Danger of stigma: A person with type 1 may delay testing or injecting so that those around him or her aren't offended. That delay can be harmful or even life-threatening.
Stigma of type 2 diabetes
1. Individuals with type 2 diabetes may not be respected by others because they believe the individual with diabetes got it by living an unhealthy lifestyle and that it is entirely their fault (wrong). Genes and other risk factors play a role in determining who gets type 2 diabetes. While the likelihood of having type 2 diabetes increases with age and weight, that isn't always the case.
Danger of stigma: This belief leads some people to have less respect for folks with type 2 diabetes. This attitude can also undermine a person's confidence.
2. People with type 2 are undisciplined if they eat forbidden sugar-containing foods.
Danger of stigma: People with type 2 have to defend their food choices to those around them. They may also say no to foods they really want to have (and are able to have). This can make socializing, office parties, family gatherings far less enjoyable.
Kelly Love-Johnson was diagnosed with type 2 in her thirties and says, "It's sad to me now to think how hard I was on myself and how much I blamed myself for my disease, and sad that I was alone in the first weeks of my diagnosis because I refused to share it with anyone. But I'm also proud of the fact that I took control of it. I tell people now that my diagnosis saved my life."
How do we combat these stigmas?
Roszler says that folks with diabetes should make an effort to learn the facts about diabetes and feel confident with that information. They should also have a few good responses ready for any occasion: If someone says, "Hey, you have diabetes. You aren't allowed to eat that!" They might answer, "Diabetes care has changed. But, thanks for thinking of me."
A major factor in creating a foundation of understanding and acceptance of diabetes in oneself and in others can depend on the way the diagnosis is managed from the beginning. Meeting with a team of professionals that includes an endocrinologist, nutritionist, therapist and educator allows for the greatest success in managing and taking responsibility of the disease.
Interview with Janis Roszler, MSFT, RD, CDE, LD/N
Interview with Sloan Wesloh
Interview with Kelly Love-Johnson