Kathy* has lived with Type 1 diabetes since she was a child. The 30-year-old has always used her insulin pump privately, preferring to keep the disease concealed from friends, family and co-workers.
Her situation is not uncommon, says Sandi Dennison, chair of RNAO’s Diabetes Nursing Interest Group (DNIG) and Kathy's diabetes educator at the Windsor-Essex Community Health Centre. "People hide it because they’re afraid of discrimination," she says. "(A diabetes diagnosis) seems to overpower some people."
Patients experience a range of emotions after being diagnosed with the disease, Dennison explains. Some view diabetes as burdensome to themselves and others. Some feel ashamed because they think they brought the diagnosis upon themselves either by not exercising, not eating the right foods, or due to other issues in their lives. Dennison says this isn’t necessarily true. "The term obesity tends to be hooked to Type 2 diabetes," she explains. "But there are people who are not overweight who develop diabetes."
Despite this fact, this pervasive, negative perception of the disease prompts some patients, like Kathy, to go to great lengths to keep it under wraps.
But secrecy can be troublesome, especially if Kathy’s blood sugar were to plummet. She could be plunged into mental darkness, and no one would know how to provide help because they wouldn’t know she’s living with diabetes, Dennison explains.
Nurses can lend a helping hand when it comes to fighting diabetes discrimination. Listening to clients’ fears and concerns, and inviting family and friends to participate in learning more about the disease goes a long way toward quashing prejudice – perceived or otherwise. “If you’re…distressed all the time, it’s difficult to function and (see) positive outcomes,” Dennison says. “As health-care providers, we need to be mindful of that distress and help people work through it.”
According to the recently released Diabetes Attitudes, Wishes and Needs 2 global study, 28 per cent of Canadians with the disease have experienced significant emotional distress. Fifteen per cent have felt discriminated against. "It's very easy to forget, or not be aware of, the distress that people feel with diabetes," says Dennison. Diagnosed in 1963, she says she knows firsthand how it can change your life. "For some people, it's (the last) straw."
For more information about DNIG, visit www.DNIG.RNAO.ca
DNIG, which currently has more than 700 members, is interested in starting a learning series in partnership with RNAO’s Mental Health Nursing Interest Group (MHNIG). The two groups have met and are ironing out the details, and hope to have something formalized in the next couple of months. The goal will be to help RNs better understand the links between this chronic illness and mental health so patients like Kathy don’t feel like they have to hide their diagnosis. Visit www.DNIG.RNAO.ca for updates on this initiative.