Part 3: A silent burden | Can community support, social welfare policies bridge the gender gap in diabetes care?

Social support nets carry an indelible synthetic power. They see diabetes as a disease of gender, age, caste, class — a complex malady in need of complex, and compassionate, solutions.

Updated - August 19, 2023 10:27 pm IST

Published - August 19, 2023 08:45 am IST

Image for representational purpose only.

Image for representational purpose only. | Photo Credit: The Hindu

(In the concluding part of the 3-article series, The Hindu takes a deep dive into the gender gap in diabetes care in India.)  

Part One: For women, diabetes screening and diagnosis come with in-built challenges

Part Two: Who cares for women living with diabetes?

To Suradha, diabetes feels like a crude competition. How good is your monitoring setup? Is your insulin range ideal? How well do you manage your stress? The more you show, the more ‘disciplined’ you seem. “The way we talk about diabetes is more about ‘gamifying’ life to fit diabetes. It is exhausting to look at my life like that.” Nishtha Kanal, 33, is an unwilling participant too. “As a woman, there are a lot more balls to juggle in the air”. A ‘diabetes burnout’ grips her some days: “You just don’t want to take care of your blood glucose numbers and diet and routine any longer.”

If diabetes were a competition, it would be a game of poker, except the rules are hazy, everyone plays in pitch-black darkness, and unequal hands are dealt to some more than others. Diabetes cases in India are climbing as markets gush with processed and high carbohydrate foods; lifestyles become more sedentary; air thickens with pollution; stress levels grow unmanageable. Skewed gender relations govern the impact of these causes — women manage diet, stress, exercise, and environment from a tight range, as The Hindu has explored in previous instalments.

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“There are many routes to living well or poorly with diabetes, and these are not always the ones canonised in biomedical models of diabetes management,” Leslie Weaver remarks in her book Sugar and Tension.’ The current model treats the disease, not the person. What would diabetes care look like, when it is tailored to an individual conditioned to not care for themselves? 

A slow dismantling

“Families have a false kind of expectation that the minute our eyes open up, you should be around,” says Vandana Chatterjee, 56. It translates into a Pavlovian response of sorts, where “we tend to put our health always last”.

Charumita Vasudev, who researches inequity within families at Lancaster University, advances the idea of families taking on the role of caregivers too. Given gender norms and power hierarchies, she says, “early diagnosis, regular check-ups, proper mealtimes and constant monitoring can only be ensured if families are aware, mindful and accommodative of the nutritional, health and mental well-being requirements of women.” Put simply, social norms can consolidate to make diabetes into a team game rather than an individual sprint.

A 2018 study traced the role of social and family support in type 2 diabetes management. Support was interpreted as families appreciating the person if they stuck to a diet, reminding them about checking blood glucose levels, and accompanying them during exercise. While most patients ‘never’ received any support, those who did had “better self-management behaviours”.

Step one, says Dr. Vasudev, could be to push for equal distribution of household production activities. “It would help ease the mental burdens of managing both work, family and associated stressors.”

Community support

Vandana Chatterjee has seen diabetes up close, a beast that has walked alongside many in her family: parents, grandparents, aunts, uncles. “It’s only the odd person who doesn’t have diabetes,” she muses. Her father, a diabetic, experienced a heart attack but unlike the classic symptom of chest pain, his ache was limited to his shoulder. He eventually passed away due to multiple organ failure, brought on by congestive heart failure. Heart disease is a known complication of diabetes: high blood glucose causes blood vessels to narrow, reducing the supply of blood and oxygen, a damage that overtime weakens the heart.

“I fear that something terrible might be happening to me, but I wouldn’t know because symptoms are skewed when you have diabetes,” she says. Vandana is also a cancer survivor. Her family may be her personal ‘encyclopaedia’ on diabetes management, yet she still lives with a constant fear of repeating mistakes. “I don’t know if what I’m doing is right or wrong.”

Support groups like the Blue Circles Foundation fill this vacuum of uncertainty, building online and offline communities, a mix of experts and peers that create awareness about diabetes, its causes, and treatments. Their “Project Gaia” is designed specifically to bring women and girls within the radius of care. On their online communities, people often share contacts for finding cheaper sources of Continuous Glucose Monitors (CGM) which are exorbitantly priced.

“Living with a chronic, invisible condition like diabetes can be very lonely and isolating. Finding this group made me feel like I wasn’t by myself and that my issues weren’t just happening to me,” Nishtha adds, a validation that sees the unseen labour of managing diabetes.

Activists argue the uprising of support can spill over to workplace and education institutes too. As part of workplace intervention model conducted by the Public Health Foundation of India and Madras Diabetes Research Foundation, companies were required to weave in lifestyle changes as part of corporate policy. People with diabetes met daily 30-minute walk quota, participated in group exercise sessions, ate well-portioned, healthy food at the canteen -- practices which helped at least 25% of the participants reduce their three-month average blood glucose levels. Among other things, it reduced the burden on the individual of managing the condition alone.

Dr. Sona Abraham, a Kerala-based endocrinologist and diabetics specialist, hopes there are well-informed, robust social support systems, especially in the context of India’s mushrooming cases. “Women are at the heart of a nation’s health. If we give women the right tools to manage the disease and educate them, it will have a long-term implication — not only for them, but the family’s health in general.” 

Politics of self care

Women caring for themselves can be a protest against misogyny and medicine - both of which, in ways more than one, confine them to gender roles.

But not everyone wants to, or can, protest. Suradha, for instance, wonders if the current discourse places the burden on diabetic individuals to ‘fix’ themselves, especially if they lack the required means and resources. Dr. Balaji Gummidi, a field epidemiologist working in Andhra Pradesh’s Srikakulam district and a renal researcher from Geroge Institute for Global Health, says, women often let out a wry laugh when counselled about diet and stress. “They say who will go for a walk when they do so much at home, or how do they eat healthy if they don’t have the money to buy?”

Nihal Thomas, department of endocrinology, diabetes and metabolism, Christian Medical College, previously told The Hindu that expensive costs of fish, fruits and vegetables made diet a “social determinant” fueling the rise of diabetes cases. “We have to find ways to cultivate healthier food and maybe provide them through government schemes to make them more affordable and accessible,” he added. Mr. Thomas was one of the authors of papers published in The Lancet titled ‘Global Inequity in Diabetes 1’ and ‘Global Inequity in Diabetes 2’, which underlined colonisation and famines as historical factors that have shaped the alarming rise of non-communicable diseases in India. Both these contributed to poor education, lower socio-economic strata and reduced decision-making among women, all of which are now, he said.

“The government is currently concentrating on testing and providing medication. But what after that? They should also focus on giving them diet food and thinking about how to make exercise and stress management a part of diabetes care.”Dr. Balaji Gummudi

On similar lines, the public health discourse of the ‘diabetes epidemic’, researchers have argued, “tend to locate responsibility for diabetes within individuals, in the form of genetics and deleterious lifestyles, while neglecting the role of structural factors that contribute to this health disparity”.

The conversation, activists argue, must pivot to caring for women, a model where resilience is built by the government, for the community. Researchers in March this year proposed a framework for diabetes care that goes beyond biomedical suggestions. It included public transit for infrastructure, access to parks, physical activity in schools, direct cash transfers, and consumer-friendly food labelling, along with investments in public healthcare infrastructures. Reducing health expenditures, and holding counselling sessions about diabetes-related stigma and lifestyle choices, can bridge the structural gaps women face. People The Hindu interacted with also mentioned how mental healthcare, insurance, workplace and academic accommodations can be a positive force in shaping their health-seeking behaviours.

I ask Suradha what her ideal world looks like: it is one where she and her diabetes coexist, where she shows up for herself without feeling the pressure of ‘winning’ diabetes. For Nishtha and Vandana, their virtual communities are home to the reassurance, knowledge and support they need. Sita, a domestic worker, would pin her hopes on the state to make treatments affordable and accessible. No one size can ever fit them all.

There are no silver bullets with chronic conditions like diabetes. But social safety nets carry an indelible synthetic power — they ‘unsilence’ the individual suffering of living with a silent disease. They see diabetes as a disease of gender, age, caste, class, a complex malady in need of complex, collective and compassionate solutions. 

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