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The Stigma of Diabetes

by Mary Ann Romans

How local physicians are helping patients move behind the stereotypes and get on the path to a healthier life.

For many, dealing with the stigma of diabetes often becomes part of dealing with the disease itself. Fortunately, new treatment and education initiatives, practiced by local health care providers, are focusing on improving patients’ quality of life.

Alexis Williams, a public health adviser for the National Diabetes Education Program (NDEP), tells us that most people don’t understand diabetes and its causes, and this includes the patients themselves. “We see people not wanting to talk about it,” she says.

Why is this the case? “People with diabetes often experience feelings of fear, blame and disgust, arising from stereotypes around diabetes and its management,” says Dr. Farah Morgan, a physician at Cooper University Health Care and the assistant professor of medicine at Cooper Medical School at Rowan University.

“Diabetes is not caused by people eating cake,” adds Dr. Jenine Vecchio, medical director of the Joslin Diabetes Center at Deborah Heart and Lung Center in Browns Mills. “There are so many more factors to it, and no one should blame themselves. It is a stigma that we try to educate people out of.”

Unfortunately, Morgan says, these stigmas can have a greater consequence because they often lead to poor self care. “For example, they may not want to say they can’t eat something or may not want to take insulin in front of others, for fear of deviating from the social norm,” she says. “People with diabetes on insulin often feel uncomfortable injecting insulin in social situations for fear of being viewed as drug addicts. All of these things prevent people from managing their diabetes well.”

How this affects health
The lack of self care can lead to additional issues, according to Dr. S. Jay Mirmanesh, medical director of Advocare Pediatric & Adult Medicine in Marlton, Sicklerville and Voorhees. If a patient develops low or high blood sugar, it could result in a change in behavior caused by the imbalance. This might just make things worse for someone who is already subject to public stigma for having the disease in the first place. Dr. Jean Marie Davidson, of Virtua Endocrinology, counsels that there is much for the public to learn about this disease. “Many of the complications of diabetes are associated with the lack of control [of the disease] and not the disease itself.”

“People tend to think that patients bring it on themselves by bad habits,” says Williams, of the NDEP. “Although this is not true, there is still a lot of guilt associated with diabetes.”

These feelings of guilt may be especially true for parents of children with diabetes. “Unfortunately, parents may often feel guilty or that others are judging them for ‘causing’ this problem in their child,” says Morgan.

Erasing that guilt and the associated stigmas of diabetes through educational initiatives and treatment programs that include emotional support is the focus of new initiatives by local health care providers.

The captain of the ship
If you or someone you love has been diagnosed with diabetes or has been told they are at risk for the disease, it is important to take charge, get educated and initiate care.

“Comprehensive diabetic self-management classes address many of these issues, and as endocrinologists we are generally anticipating what patients’ fears and barriers are, and we are addressing them,” Davidson says. She encourages patients to voice any concerns so health care providers can help in all possible ways.

“Patients need as much education as possible in all forms—resource materials, one-on-one and support groups,” she says. “They need to know what changes they can make to improve their overall health. Ultimately, they need to take ownership of their health and their lifestyle choices. The patient is the captain of the ship. We, as providers, are the navigators.”

Morgan agrees that people with diabetes should be provided with support groups and counseling to help them deal with some of the feelings of guilt and blame. Untreated, these feelings can lead to depression and make it more difficult to take control of the diabetes. “Our diabetes education program at Cooper offers peer support through group education classes,” she says.

The NDEP is also focused on education and support. “There is a big effort for helping health care providers direct patients and people at risk to the resources they need,” Williams says. “It is important for people to learn how to manage their own condition, and to really focus on both behavioral changes and learning new skills.”

New research has shifted how we see this disease, Williams explains. “While in the past, I think it has been unclear how diabetes has an impact on things such as depression (there has been a lot of uncertainty), there is now a bigger focus on patients addressing their emotions and how that ties in the managing the condition. Self-coping skills can really impact their self care.”

Providers may need to be educated, too
While educating patients is one of the most important components of diabetes management, according to Morgan, she also says family members should be present for diabetes education as well, so that they can understand the disease, resist placing judgment, and help their loved one implement lifestyle changes. “This may also help prevent other members in the household from developing diabetes,” Morgan says.

Stressing that education shouldn’t stop there, Morgan reveals that health care providers can often benefit from education as well. “Some health care providers may have stigmatizing attitudes toward people with diabetes, given the association with obesity,” she says. “Providers need to be educated on these behaviors and provide encouragement to patients for small changes, and avoid blaming patients for lack of changes. Perceived positive support from health care providers engages patients in their diabetes management.”

“As providers, we should educate ourselves so we can educate our patients,” Vecchio says. “That only makes sense. There are courses that providers can take to gain that education.” Patients should not be afraid to ask these type of questions of their providers.

Williams also urges patients to take the initiative to educate others on their disease. “There are a lot of helpful resources out there, and it is really important that people get good quality information from reliable sources. Having that knowledge and those skills will really make a difference in prevention and management.”

Children and Diabetes

The management of diabetes for a child can be very different from that of an adult.

“They often need to practice carb counting,” says Joslin Diabetes Center’s Dr. Jenine Vecchio. “Also, their different activity levels, and the fact that they usually are diagnosed with type 1, requiring insulin, makes managing their care a big team approach.”

Advocare’s Dr. S. Jay Mirmanesh cautions, “Children, especially the teenagers, are at higher risk for control of their blood sugar, so they may require more education and follow-up with their physicians [than do adults].”

“All children should be followed by a pediatric endocrinologist,” says Dr. Farah Morgan, Cooper University Health Care. “These children may feel stigmatized as they may require frequent trips to the school nurse to be given insulin or have their blood glucose monitored. It may be awkward for children, as their peers are unlikely to understand their disease.”

Strong parental support and involvement is key, adds Dr. Jean Marie Davidson, Virtua Endocrinology, no matter which type of diabetes a child has.

“Children with type 2 diabetes or pre-diabetes need aggressive lifestyle modification with institution of healthy behaviors, including increased physical activity and dietary changes,” Morgan concludes.

Resources

Advocare Pediatric & Adult Medicine
Locations in Marlton, Sicklerville and Voorhees
(856) 985-8100;
(856) 728-7900;
(856) 753-7374
AdvocareDoctors.com/DocMir

Cooper University Health Care
One Cooper Plaza
Camden
1 (800) 8-COOPER
CooperHealth.org

Joslin Diabetes Center Affiliate at Deborah Heart and Lung Center
200 Trenton Road
Browns Mills
(609) 621-2075
Deborah.org

National Diabetes Education Program
Bethesda, Md.
NDEP.NIH.gov

Virtua Endocrinology
1605 Evesham Road
Suite 200
Voorhees
(856) 673-3490
Virtua.org

Published (and copyrighted) in the Art of Living Well pull-out section of Suburban Family Magazine, Volume 5, Issue 4 (June, 2014).
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