As a nation we need to pay careful attention to the unfolding diabetes epidemic in our midst and take stock of the fact that India is home to the second-largest diabetic population in the world. Data from the International Diabetes Federation suggests that India is home to 77 million diabetics, a number that is projected to rise to over 134 million people by 2045, as per the current trends. It is also worrying that COVID-19 has been implicated in the development of new-onset diabetes mellitus. This could add to the disease burden in the years to come.
Diabetes mellitus, or Madhumeha as it is known in Ayurveda, was a relatively rare chronic disease in India. In recent years, however, diabetes has exploded as a lifestyle disease. The number of diabetics in the country has increased by 124 per cent over the last 30 years from an estimated 26 million in 1990, to the current 77 million, as per data from the Global Burden of Disease Study (1990-2016). This dramatic increase in disease burden has been attributed to a number of factors—rising affluence, genetic predisposition and the sedentary nature of “westernized" lifestyles. While no one reason fully explains the epidemic of diabetes mellitus in India, we have over the years developed a better understanding of the disease and its implications for the population. It is important that we develop a comprehensive and holistic management plan for diabetes that reflects the realities and requirements of Indian society.
Why Women Don’t Practice Self-care
The earliest Western writings about diabetes management saw the illness as a test of moral fibre, discipline and character. Within the individualistic discourse of the West, strong-willed patients managed their disease well, while those who were “hedonistic", weak and lacked discipline failed to manage their illness. It is crucial that diabetes management protocols do not scare patients, and instead focus on improving self-care and lifestyle changes.
A healthy diet, exercise and medication, if required, are the fundamental building blocks of chronic diabetes management. While it remains a chronic disease with multiple manifestations and health complications, diabetes can be readily managed with a proper regimen of self-care. Yet every day, doctors deal with patients who consciously neglect diabetes care regimen, despite clear instructions of physicians.
As a puzzled doctor in Leslie Joe Weaver’s book Sugar and Tension: Diabetes and Gender in Modern India, a penetrating analysis of the diabetes epidemic in India, says: “Why would a perfectly intelligent, aware, educated person not follow things when [s]he knows that not following them is going to harm [her]?"
For years, doctors have been puzzled over why diabetic and pre-diabetic patients, particularly women, seemingly ignored medical advice and did not practice self-care. An early pioneering study, Impact of Gender on Care of Type 2 Diabetes in Varkala, Kerala conducted about a decade ago by the Achutha Menon Centre for Health Science Studies found a rather unusual explanation. In traditional Indian family settings, the woman of the household, especially older women, were trapped in caregiver roles where they were essentially conditioned to look after the health interests of the entire family and privilege it over their own. Self-neglect of diabetes care was exacerbated by the imperatives of household work, and the fact that women were forced to sacrifice their own health considerations for the sake of the larger family unit.
For instance, a typical habit involves Indian women in many households eating last after everyone else has finished eating. The woman eats whatever is left, and in resource-constrained environments this often means eating unhealthy foods, or sacrificing diabetic-diet norms. This happens as a consequence of both familial pressures and a woman’s own internalization of self-sacrifice as a virtue, as revealed by Dr Weaver’s anthropological enquiry into diabetes in India. The earliest manifestations of diabetes in Indian women often start with complaints of “tension" and stress. Blaming themselves for the inability to cope with familial pressures, such women can descend down a spiral of self-neglect and non-adherence to medical advice.
This finding, while driven by qualitative enquiry, is important because it has shifted the narrative amongst the medical community about diabetes care. As one doctor points out in Dr Weaver’s book, “In the ’80s and ’90s, physicians all over the world, including me, were in the business of scaring their patients. By the turn of the century, we all realized it didn’t help. Hope became a watchword for diabetes in 1999… [we] have to rethink strategies, and one of them is that instead of fear, we have to give them hope. It works better."
Patient Blaming Must Stop
Self-blame for developing diabetes, and self-sacrifice of regimen adherence are two important facets of diabetes care that have remained largely uninvestigated in the discourse around the disease. As doctors and public policy practitioners develop a deeper understanding of the nuances involved in chronic disease management, they are increasingly turning towards incorporating these elements into mainstream healthcare practices. One way in which this can be accomplished is by training medical professionals to transition from the language of patient blaming, which visualizes diabetes sufferers as people who lack self-control and discipline, to situating disease management regimens within the language of self-care and prevention.
The language of the stick—scaring patients into compliance—is unlikely to be effective. In order to promote adherence, a change in physician attitudes and design of regimens that do not assign any blame to the patient but use socio-medical interventions to promote compliance are important. Additionally, diabetes management should be incentivized by shifting the focus of women from a ‘caretaking’ role to a ‘self-care’ role—encouraging them to undertake regular exercise, follow a proper schedule for eating meals and prioritize health check-ups for themselves.
The solution to any chronic disease management lies in compliance, not coercion. Patient compliance, disease management protocols and optimizing quality of life for diabetic women requires public policies to be centered around the societal role of the patient, instead of being formulated or implemented in a vacuum.
Adhiraj Parthasarathy is a Director in the Development Monitoring and Evaluation Office, NITI Aayog. The views expressed in this article are those of the author and do not represent the stand of this publication.