When discrimination leads to stigma in diabetes, do we need a shift in social behaviour? – Times of India

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Omar Sherief Mohammad, Cluster Head India, Middle East & Africa, RDC.
Access to diabetes care is one of the main reasons for its poor management in our country. One of the barriers that has been recognized is stigma and the role it plays in hampering diabetes management among people with diabetes. Studies in India and a substantial amount of global research show that people with diabetes face discrimination and isolation in several social situations. People with diabetes are often made to feel disabled, not capable of living a so-called ‘normal’ life. Some are even blamed for their condition, and their food habits are considered responsible for their disease. This largely happens because people with diabetes need to follow a special medical regimen and daily care routine in public.
Take the case of children with type 1 diabetes (T1D). Their treatment regime requires them to test their blood sugar during school hours, take their insulin shots on time and carry food appropriate to their condition. They come across as being ‘different’ and they are treated as such by their peers. As a result, these children, for no fault of theirs, develop a deep sense of isolation and discrimination. They feel ‘stigmatized’. According to studies that have explored this stigma that children and adolescents with T1D face, many of them struggle with self-esteem and body-image issues. It can affect their social relationships and can also have a deep impact on their education. What begins in childhood is often carried through into adulthood for people with T1D. Those who want to get married may face rejections because of their condition. At workplaces too, people who are seen taking the insulin injections might be considered incapable of certain tasks and excluded from important projects or not hired at all! The effect of this stigma is not limited to the patient but extends to those around them too. Parents of children with T1D also feel excluded by their friends and family because of their children’s special needs, which can have an impact on their mental health. An Indian study has established that social stigma related to T1D can lead to mental distress and depression in parents of children with T1D.
Research also shows that this stigma can affect the medical regimen of people with diabetes. They feel ashamed about monitoring their blood sugar level, taking their medications or insulin injections in public, or eating different food. Children rebel against the self-care practices required to keep their blood sugar under control. They skip their insulin doses or eat regular food with their peers, which can negatively affect their blood sugar level. This interferes with their therapy adherence and leads to severe complications such as kidney diseases, vision loss or nerve conditions at a younger age.
Therefore, the stigma of diabetes can negatively impact the social, emotional, and physical health of people with diabetes and their caregivers. To address this barrier to care, the discrimination needs to stop.
The ideal way to stop this is to bring about a shift in social behavior, but behavioral change is a long-term process and requires conscious commitment and persistence. Advocacy, education, and counseling are the important steps to drive this behavioral change. A collaborative effort between the government, private healthcare companies, and civil society is required.
Advocacy needs to start with evidence-building. Local data on stigma associated with diabetes is needed to demonstrate its impact on people with diabetes. This data can give further insights on the development of education and awareness programs and counseling interventions relevant to local communities. Measurement of the impact of these interventions is critical to their success and can guide policy development.
The education and awareness programs must start at the grassroot level with the training of Accredited Social Health Activists (ASHAs). They can in turn educate the community. Fun-&-learn programs at schools should provide information on T1D and its management. These programs can also demonstrate real life examples of adults leading a normal life with diabetes to make children see that their peers with T1D are not different from them. This will also motivate the children with T1D to not be embarrassed about their condition.
Research has shown that regular counseling for adults with diabetes, children with T1D, and their parents is important to help them cope with the stigma and discrimination. Civil society can partner with the government to provide these counseling services. Globally, the role of peer support groups has been well established to create a community of support that can help people with diabetes cope with their condition well. 13 14 15 Patient organizations can help arrange these support groups, which will facilitate sharing of experiences and ensure the emotional well-being of people with diabetes.
Community mobilization is required to end the stigma associated with diabetes. I believe that awareness on this issue cannot be created in isolation but requires the support of a larger ecosystem. There are currently about 74 million people living with diabetes in India and this figure in on the rise. Conscious effort needs to be made to create equal opportunities such that they too can find their place as valuable contributors to the society. It is their right to live in a society which does not discriminate against them.
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Views expressed above are the author’s own.
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