CDP founder Chet Galaska kept his diabetes private for 30 years. He did this to avoid having others think less of him because of the disease. It was clear how ignorant people are about diabetes and, worse, how firmly they believe things that aren’t true.
To fight this he wrote The Diabetes Book: What Everyone Should Know. Through researching the book and speaking to many diabetics he realized that others try to sidestep the stigma just as he did.
Here are two facets of the stigma:
- Diabetics are blamed for getting the disease: “You were fat, lazy and/or ate too much sugar.” In fact weight, physical activity and diet are key to managing diabetes but they do not initiate it. It starts with genetics.
- Uninformed people feel empowered to fault diabetics for not behaving the way the critic thinks is correct: “Should you really be eating that?” Diabetics can eat anything: it’s what, when and how much.
Nobody needs unfair judgement and silence is the easiest way around it. But there are consequences. Nonexistent peer support can cause many to believe they’re the only ones who struggle with it and think they’re doomed failures. Fellow diabetics could tell them no one manages it perfectly and many live long, healthy lives. Others simply ignore the disease until they suffer irreversible life altering or fatal complications.
The program was developed by listening to diabetics and addressing real-life issues. We teach basics, dispel myths, offer rubber-hits-the-road advice on diet and physical activity, emphasize the importance of health care professionals (HCPs) and challenge diabetics to fight the beast.
Presenters are diabetics who bring first-hand experience that establishes credibility and facilitates learning. Peer support happens naturally among people who personally know how difficult and relentless the disease is.
Classes are held in familiar neighborhood venues and the number of participants is limited only by the fire code. We can reach many people – diabetics, those who care about them and anyone who wants to learn – at one time. CDP is free for participants.
We also do presentations for HCPs that explain how medical advice can inadvertently reinforce the stigma and suggest subtle changes that can make a huge difference.
Erasing the stigma requires an informed community. CDP engages government, media, education, business, nonprofit, church and civic organizations to spread the message.
The Centers for Disease Control says 30.3 million Americans (9.4% of the population) have diabetes and 84.1 million (33.9%) are prediabetic. It’s usually cited as the 7th leading cause of death in the United States but it’s worse than that. Death certificates typically note the immediate cause of death (i.e. heart attack) while ignoring the underlying cause (diabetes). When a study corrected for this diabetes jumped to number 3.
It’s astonishing that this killer is so widely misunderstood. If we’re truly serious about helping diabetics avoid early death, amputations, blindness, kidney failure, cardiovascular disease and other complications we need to engage everyone: diabetics, HCPs and the community at large.
The problem is social, not medical. Outcomes will not improve unless diabetics are respected instead of stigmatized and shame is replaced with pride.
Fixing this is what CDP is about.