Part 2: A ‘silent’ burden | Who cares for women living with diabetes?

In patriarchal households where women are weighed down by care work, women are conditioned to put their needs last, jeopardising diabetes management and their mental health.

Updated - August 19, 2023 10:28 pm IST

Published - August 18, 2023 10:44 am IST

Image for representational purpose only.

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

(In the second of a 3-part series, The Hindu dives deep into the gender dimensions of diabetes care in India. Read part one here.)  

Let’s say the average human takes X decisions on a given day. A person living with diabetes will likely take X+180 decisions, a famous 2014 research showed. That is one decision every five waking minutes. What is safe to eat? When to measure your blood sugar? How much insulin to inject? Go too low, one risks feeling violently dizzy and nauseous due to hypoglycemia. Go too high, and one can be hospitalised for diabetic ketoacidosis.

Then there are decisions reserved for caregivers of a family. Vandana Chatterjee, 56, tries to achieve a decent count of steps and eat healthily to keep her type 2 diabetes in check. But should she go for a walk in the morning? Only if she wakes up an hour before her husband and children; that way, no one’s tea, breakfast, lunch is compromised. She thinks twice before buying a specific flour — low in carb, high in protein — for herself. “Buying a separate atta just to make two rotis for yourself is a problem - it’s also a drain on the family’s budget.”

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Diabetes demands discipline — sustained self-care, an unwavering vigilance over how one lives, financial autonomy to meet treatment costs. But this prescribed discipline presents a clinical and moral dilemma for women, whose choices are moulded by gender norms, family expectations and economic inequalities. It births a paradox of care: who will attend to women, now caught between domesticity and disease? 

‘Women put their needs last’

“For a caregiver to receive care, that’s an alien concept in the Indian household,” says Nupur Lalvani, a type 1 diabetic and founder of the support group Blue Circles Diabetes Foundation. “If the mother is unwell, everything comes to a stop. Who takes care of them? Do they even have that kind of environment?” Once diagnosed, diabetics take a crash course in biology, nutrition and physical health. But the curriculum glosses over a crucial lesson, that diabetes is also a disease of gender, caste and class.

Gender norms dictate that women eat last, and the quality of leftover food is lower than what other members eat — even in wealthier households, per Food Security for Equitable Futures (FSEF) research. Uttar Pradesh and Goa found skewed food distribution: women ate towards the end, saved for others, skipped a meal, ate leftovers (only rotis and chutneys, rice and salt).

Charumita Vasudev, a researcher with FSEF, says, “This becomes severe if families are facing financial stress that can come with a wide variety of external factors,” considering crop losses, inflation, family illness, job loss or health emergencies such as COVID-19. Moreover, women engaged in household-production activities at home often delay eating their first meal (research shows family members involved in work outside eat before leaving), and the long periods of hunger fed into their diabetes risk.

Notions of labour and productivity also dictate food allocation within families, shaping women’s dietary choices. In a household with limited economic resources, nutritious foods (which are also costlier) -- eggs, milk, fruits, meat -- are directed to fathers and sons, not wives and daughters, ample evidence shows. The latest round of the National Family Health Survey also pointed to a protein deficit in women’s diet, who were found to be consuming more simple carbohydrates over protein.

“Managing a chronic condition like this takes a lot more out of you as a woman, especially in very traditional families,” says Vandana. “We just don’t have the agency to say: I have to have my meals on time.” Food insecurity heightened the risk of metabolic syndromes, such as diabetes and heart diseases, among Latina women in the U.S., a recent study found. “Contributing to the prevention of metabolic syndrome would be ideal over treating the cardiovascular and metabolic outcomes associated with it,” one of the authors said.

India’s Public Distribution System (PDS) provides subsidised food grains to nearly two-thirds of India’s population living below the poverty line. Families are entitled to 5 kg of rice/wheat/millet — high glycaemic value cereals that carry more calories than needed and cause the blood sugar to dip. Some States have introduced healthier alternatives of millets and jowar, but rice remains ubiquitous, and there is currently no guideline that mandates a different diet for a woman with diabetes or prediabetes compared to an individual without diabetes. “We don’t have any nutritionist or dietician at the secondary care level to explain these things to women,” notes Dr. Balaji Gummudi, a field epidemiologist working in Andhra Pradesh’s Srikakulam district and a renal researcher from Geroge Institute for Global Health. The women he surveyed reported eating leftovers of the one dish prepared in the house.

Women are “conditioned” to put themselves last — a product of society’s devaluation of care work. “This has an effect...on the self-worth of women who prioritise over themselves the needs of those perceived as more ‘productive’ contributors to the household,” explains Ms. Vasudev, leading to women “neglecting, enduring and/or misunderstanding well-known symptoms which men would seek immediate care for”.

Money matters

“Women prioritise their health much less,” Dr. Sona Abraham, a Kerala-based doctor notes, in comparison to other members of the household.

One culprit is money. On average, a diabetic spends about ₹6,000- ₹17,000 per month, with drugs, lifestyle expenses, diagnosis and consultation, and surgery if needed. A glimpse from Vandana’s ledger: Metformin (twice a day) + supplements to manage complications such as hypertension + glucose meter + single-use strips (a box of 50 is averagely priced between ₹600 - ₹1,200) + continuous glucose monitors (₹5,000 - ₹7,000 per month) + doctor’s fee + blood tests. This excludes the cost of travel and investment in diet and exercise.

An analysis found the median annual direct and indirect cost for diabetes care is increasing in India, from ₹15,460 and ₹3572 in 1999 to ₹34,100 and ₹4200 in 2021; the cost was also higher among women than men for outpatient care. This racked up out-of-pocket expenditure for people in urban poor areas, per a Chennai-based study, whose expenses primarily included hospitalisation, medicines and investigation (Out-of-pocket healthcare expenditure in India is the highest in the world).

India plans to expand Ayushman Bharat Health and Wellness Centres to screening, prevention, control and management of non-communicable diseases like diabetes. While medicines and equipment are currently available free of cost at India’s Jan Swasthya Kendras, sometimes a shortage of specific insulin or doses means people resort to private vendors at a higher cost. Suradha, a type 1 diabetic, uses a glucose monitoring system, and finds 70% of her monthly expenditure goes into medical care .“I have never been able to completely rely on myself for medical care, just because the costs are high, inconsistent and super unpredictable.”

Patriarchal norms and lack of financial autonomy, especially in low-income households, often mean money is rarely allocated to treating and managing a woman’s diabetes, literature on healthcare spending shows. One out of every six married women with an income had no say in how the money is spent in the house, per NFHS-5. The average in-patient health-care expenditure is also substantially lower among women than men across socioeconomic groups.

There are also competing priorities: Ms. Weaver’s book Sugar and Tension documents multiple instances of women having to choose between purchasing medicines and glucometer strip tests; the rest goes into children’s education and household needs. Looking at diabetes as a disease of gender, caste and class is crucial, experts note, given that the diabetes epidemic is expected to peak most in low-income States.

Stress and stigma

“For most families, diabetes stops at getting the medicine for the wife or mother,” Dr. Gummudi says. “There is no care or follow up; they will not bother about diet, physical exercise, stress.” Physical exercise was a “zero” for the women he worked with. Many count domestic housework as the required physical activity, others feel “shy” about being mobile and walking around in their areas. “Women also don’t have facilities -- properly built roads, pavements or community facilities.”

Exercise is no walk in the park: Suradha, who lives with her parents, is often told ‘it’s not safe’ to step out at night. Vandana shares a similar concern. Late evenings and early mornings, when the sweltering heat withdraws, impose both “hostile weather and hostile environment, which is not safe for women”.

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Stress evokes an instant response from the body: hormones raise blood sugar levels in response to any emotionally taxing trigger. Managing stress, then, is central to managing diabetes. “Stress regulation, however, is not dealt with at all among women,” Dr. Abraham notes. It is not only the stress of a disease, but the stress of long working hours and managing familial responsibilities. Evidence, anecdotal and scientific, has found that patriarchal expectations, gender roles and intimate partner violence all take a toll on women’s mental health. Even household responsibilities and unpaid household work are linked to contribute to high-stress level diabetes. “Women sometimes tell me their husbands yell at them if things are not in place or some feel the pressure of being perfect. People are living in this constant fearful environment,” Dr. Abraham says. “Diabetes is about watching what you eat and exercise, but there are emotional and financial stressors, things beyond the biological condition which influence sugars to a large extent.”

In a household where a woman is weighed down by care work, they are saddled with the additional responsibility of caring for themselves, which is documented in research: the stress and sleep deprivation of attending to the family always intensified their diabetes.

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

There is a ‘social cost’ many pay for being diabetics too. Women are often told to ‘hide their diabetes’ from prospective partners, lest they will struggle to prove their worth as a ‘good wife and mother’. Diabetes is a high-investment, chronic condition, one that not only poses financial constraints but threatens women’s role as a caregiver in the family. Within the peer support systems in Blue Circles, Ms. Lalvani notes many women face social discrimination and stigma. When she disclosed her diabetes diagnosis, Suradha felt like she let out a “dirty little secret” out in the open.

Ms. Lalvani worries that the ‘diabetes epidemic’ may offset another health concern: eating disorders. Young women recently diagnosed have expressed hesitance about taking insulin, which may result in weight gain. Jaishree, 24, takes semaglutide, a type 2 diabetes drug that helps with blood sugar levels, but is also known to cause weight loss. “I have noticed random repulsion to food - something about the food -- the texture, the smell, the way it is plated -- makes me want to gag a little.” She is working with her gynaecologist to get off this medication and find alternative ways to manage it.

“Diabetes can be deeply isolating,” says Jaishree.

40% of patients with NCDs including diabetes, cancer and hypertension reported having depression while 30% with these chronic conditions have anxiety. Arun Kandasamy, a psychiatry professor at NIMHANS, previously told The Hindu that “the presence of depression worsens NCD symptoms, adversely impacts the quality of life, and increases the financial burden for patients and their families,” making it important to address mental health. Studies have also documented ‘diabetes burnout’ among people with type 1 diabetes.

“They often suffer in silence, they have nobody to share it with. It affects their sleep, their weight, other things which also indirectly leads to obesity and diabetes,” Dr. Abraham notes.

The guilt of caring for oneself

The ability to engage in ‘self-care’ work is mediated by social factors: gender, income, caste location. Blanket biomedical advice, which shifts the burden of care on the individual to ‘responsibly’ manage their diabetes, can be alienating. Evidence shows people felt infantilised for “being bad” or “cheating on their diets”. and “guilty” about failing to manage their diabetes routine.

But the guilt strikes both ways for women. Ignore your diabetes, and you’re not doing enough. Manage it too well, and you’re neglecting the share of care work. Women find themselves operating from a tight range: How do you weigh a 20-minute walk against cooking for your family? “We are raised with this guilt,” Vandana remarks. “How can you abandon your family, just because you want to go for a walk?”

In some cases, women are also shamed for not being disciplined enough or for consciously disregarding their own health. Suradha often feels like a “delinquent” in the eye of her doctors. “They assume it is my fault if I am not a certain weight at any given point”. She avoids doing cardio because her sugar drops almost instantly. Other times she deals with ‘shock and awe’ when mentioned she needs four insulin injections in a day sometimes. “When both these responses exist in the same breath, there is no winning,” says Suradha. Women also cite a lack of privacy within the household also as a deterrent to taking insulin or medicines on time, evidence shows.

“Being a woman and having a chronic condition means there are a lot more balls to juggle in the air.”Nishtha Kanal, 33

A study found that a woman’s ability to maintain a healthy diabetes lifestyle was influenced not just by exercise and good diet, but also the confidence to manage their disease. But the confidence chips away when the burden of care falls solely on them, and they are told they are doing it wrong. Some may also minimise the gendered stressors of a chronic condition. Nishtha Kanal, 33, says, “You’re dealing with diabetes 24x7, your hormones are on a 28-day cycle which affects not just your mood but also your blood glucose levels throughout the month. Every day sometimes feels like a battle that gets you exhausted by bedtime.” It irks her when someone says ‘It’s okay, diabetes happens to everyone. Just get on with it.’

Vandana acknowledges her family’s support: no one questions when she goes to the gym, or a doctor for blood tests. But her vigilance over her health has earned her the label of the family ‘hypochondriac’. Why do you keep checking your sugar? What’s the big deal?

How does one work around this paradox of care, when the syntax recognises the guilt that comes with placing diabetes at the centre of your life? “Women don’t take care of themselves, but they usually are much more receptive when you give them a purpose,” says Dr. Abraham. In an ideal world, the purpose would be self-preservation, of having the privilege to look after oneself. But the reality is cruder, where the ‘purpose’ of diabetes care is sometimes articulated as a means to an end -- a goal where women can earn, support their families, care for their children. Imagine warning young mothers, in their late 20s and 30s, what would happen if diabetes-related complications were to put them on dialysis. The woman usually agree: if they were to fall sick, no one would be a caregiver to them.

Coming: Part 3 on ‘Can community, social support bridgethe gender gap in diabetes care?’

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