While research shows reports of stigmatisation are prevalent among all age groups with diabetes, the situation is particularly harmful to vulnerable young patients, says a diabetes expert from Imperial London College Diabetes Centre (ICLDC).
Dr Amani Osman, a consultant paediatric diabetologist, explains that diabetes is a very visible disease, with identifiable characteristics such as blood glucose monitoring, insulin injections, dietary restrictions, and hypoglycaemic episodes, all of which can contribute to the experience of stigma.
“In younger people, who often feel pressure to be accepted by their peers, these aspects create a sense of ‘otherness’ and make it difficult for them to blend in.”
A recent study published by the American Diabetes Association, found that a majority of respondents with type 1 (76%) and type 2 (52%) diabetes reported that diabetes comes with stigma.
Dr Amani says the source of the stigma is usually ignorance; many people do not know that there are different types of diabetes, with different treatments, and the best way to deal with stigmatisation is to improve public awareness.
“Awareness campaigns such as ICLDC’s Diabetes.Knowledge.Action are helping by educating the public alongside the patients and their families,” she says.
Sometimes stigmatisation is enforced by the parents themselves. Dr Amani says that earlier in her career she found one set of parents took their child off the insulin pump she had prescribed. When she asked why, it was because they were concerned about public perceptions.
“Parents worry that their child won’t be able to get married or have children, for example. I reassure them that the child can still live a normal life, have children of their own, play, and have fun.”
Dr Amani says stigmatisation has serious implications. “Studies looking into the consequences of this stigmatisation have shown patients with diabetes experience feelings of fear, guilt, anxiety, embarrassment, blame, and low self-esteem and these negative emotions can affect overall mental health,” she says.
“This is a problem as these children are already at risk for depression associated with negative diabetes-related health outcomes and complications.”
She advises parents to look out for signs of depression in children with diabetes, particularly if they last more than two weeks. Examples include a depressed or sad mood, sleeping or eating too much or too little, lack of concentration, falling grades or getting into trouble in school.
“Both fear of stigma and depression can affect how well young people manage their conditions, so it is vital for parents to monitor their progress carefully.”