A ‘silent’ burden | For women, diabetes screening and diagnosis come with in-built challenges

Getting to the point of diagnosis is harder for women, who routinely contend with financial dependence, skewed power relations at home and restrictions on mobility. 

August 14, 2023 10:35 am | Updated 12:10 pm IST

Image for representational purpose only. File

Image for representational purpose only. File | Photo Credit: Reuters

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

Manjot and Sita have never met, and perhaps never will. The former, in her 60s, was widowed years ago, lives in a sprawling New Delhi mansion, rarely steps outside. Sita, two decades younger, is employed as a domestic worker in one such house. Her day is braided with domestic chores and care work — for her employer and family of four. They have never met, but the two women share a pain: a chronic, awful throb in their legs, a symptom of type 2 diabetes. They also share an ill-advised pleasure: morning chai, made the same way, hot, milky, sweet. The tea goes against the conventional wisdom of managing ‘sugar’, a shorthand for diabetes in the sub continent. But it is cheap, convenient, easy.

They are among the 180 women documented in researcher Lesley Weaver’s book Sugar and Tension, which charts the multiple strands of women’s lives as they manage diabetes, a non-communicable, ‘silent’ illness.

India is the infamous diabetes capital of the world: its residents account for 17% of total patients globally. Latest estimates reveal more than 10 crore Indians live with diabetes, another 13.6 crore people are pre-diabetic — together they make up Pakistan’s entire population. All of them are at risk of obesity, hypertension and heart diseases, while living with chronic complications of the kidney, eye or foot. The burden is expanding in size, geography and demographics: rural areas and the Northeastern States are seeing cases like never before. Experts also say the age bracket is falling to include more people in their 40s and pregnant mothers.

If diabetes is a ‘ticking bomb’, early detection is the code to diffuse it. But getting to the point of diagnosis is harder for women, who routinely contend with financial dependence, skewed power relations at home and restrictions on mobility.

Clinical blind spots

Jaishree Kumar, 24, was diagnosed with type 2 diabetes last year. The symptoms existed for months: hunger pangs, dry mouth, sedentary lifestyle, weight gain, blood sugar fluctuations which to her “felt like anxiety attacks, but attacks occurring in my stomach”. “I never connected the dots or thought it could have anything to do with blood sugar,” she says. Her blood work revealed two things: PCOD (Polycystic Ovarian Disease) and high sugar levels. “But all I was told is to go back and exercise.” After being “shamed” and “yelled” at her for her weight, she visited another gynaecologist who looked at her Haemoglobin A1c (HbA1c) levels, sitting well over 6.5%. It was diabetes.

It was diabetes.

Jaishree’s misdiagnosis is not an anomaly. Nishtha Kanal, 33, was diagnosed twice – once with type 2 diabetes at 23, then at 30, when a Glutamic Acid Decarboxylase (GAD) autoantibodies test confirmed she was a type 1.5 diabetic. 

Diabetes takes many forms: type 1 (when the pancreas doesn’t produce insulin), type 2 (insulin is produced but less than it used to, and the body begins to resist it), and the rarer type 1.5 (when type 1 develops slowly). Gestational diabetes (GD) is common among pregnant women where hormonal changes make the blood sugar levels oscillate. Women and men with similar socio-economic status, biological conditions, and dietary and smoking habits, reported different experiences of diabetes, a 2021 study published in Scientific Reports found.

Menstrual irregularities, PCOD, chronic stress and obesity determined women’s risk factors, as per a 2023 paper. “It is necessary for gender differences in the diagnosis and course of type 2 diabetes to be taken into account to better protect women’s health,” one of the authors said. It found that the threshold for diagnosing type 2 is higher in women — their fasting blood glucose levels and HbA1c levels are within the normal range during early stages, leading to missed diagnosis.

Symptoms vary. Sona Abraham, a Kerala-based endocrinologist and diabetics specialist, says frequent urinary infections might be ‘the first sign of diabetes’ in women, along with vaginal yeast infection. About 50% of women report getting a UTI in their lifetime, but symptoms are easily missed due to the taboo and lack of awareness, especially during pregnancy. Women with diabetes are also more likely to get UTIs, one reason being that sometimes bladders don’t empty all the way because of diabetes, creating a perfect environment for bacteria to grow. 

A 2019 systemic review of gender differences in type 2 diabetes showed diagnosis and treatment are often delayed for women. While their diagnosis came on being tested for some other illness (such as PCOD), or a complication stemming from diabetes, men were diagnosed immediately after symptoms developed. Women underwent fewer investigative tests, were less likely to be monitored for complications and consequently, missed out on prescribed antidiabetic medicines and insulin, if needed.

A.B*, 27, was told she has GD when pregnant. The baby comes out, A.B.’s blood sugar levels were a concern. Their doctor tells them they aren’t doing enough to manage their sugar. A series of diagnostic processes later, it was found A.B. has type 1.5 diabetes, not GD.

They were treated wrongly for a different disease altogether.

Women’s health seeking behaviour

There is a checklist of sorts: if women have the time outside of domestic duties, residual money, childcare support, transport to visit the centre, acceptance from families. The fifth round of the National Family Health Survey (NFHS) also revealed how gender roles flame healthcare inequities: at least 23.2% of women cited distance to hospitals as a concern, 13.5% of them were refused permission to get medical help, 16.7% could not find someone to accompany them. Only 10.1% of women said they could take ‘independent’ decisions. A 2013 study - “Impact of Gender on Care of Type 2 Diabetes in Varkala, Kerala” - relatedly found inequitable access to resources prevents early diagnosis of the disease in women.

Experts also note the lack of awareness and delays have sedimented due to institutional gaps: limited public health infrastructure, wariness towards institutional deliveries, high cost of private treatment. A study found there was one biomedical physician per 1,800 people; only few are endocrinologists and diabetologists who could assist with specialised care. “Specialised doctors [including dieticians] and medicines are available at only secondary care levels. Women will have to travel to [private hospitals] to get these services, because in most cases, the PHC doctor is not well-trained to handle GD and medications are not available in local centres,” says Dr. Balaji Gummidi, a field epidemiologist working in Andhra Pradesh’s Srikakulam district and a renal researcher from Geroge Institute for Global Health.

These invisible barriers, along with poor awareness about diabetes, often mean women tend to put off seeking professional medical advice, experts note. “Women may suffer in silence a lot more. They don’t speak up — until things are dire,” Dr. Abraham says.

Power imbalance also exists between the doctor and women patients. Research shows communication between them is often “vertical” and “improper”, with women feeling hindered due to lack of female doctors and lack of privacy during consultations. “Family history influences people a lot more in terms of whether they seek early screening or not. unless someone doesn’t come to them and tell them that you need to be screened as they do self seeking.” 

States like Tamil Nadu and Kerala have tasked ASHAs and Anganwadi workers with door-to-door screening, doing glucometer checks, and counselling people. Taking health services to women is a necessity, but to build on it, Dr. Gummidi recommends specialised training for diabetes management. “The modules given to them were general, they weren’t trained about the gendered impact of diabetes, what symptoms to look out for or what care needs to be given.”

India in May this year announced plans to scale up diabetes and hypertension screening in PHCs, eyeing to reach 75 million people by 2025. States like Andhra Pradesh also undertake mobile health screening; a 104-numbered government vehicle, equipped with a doctor and lab technician, comes for monthly check-ups of sugar and blood pressure levels. Currently, diabetes screening is done for people above the age of 40 since they are thought to be prone to type 2 diabetes. While the Health Ministry mandated GD screening of all pregnant women as part of the routine antenatal package, experts noted “suboptimal” application of such guidelines at public health centres (PHCs).

But Dr. Gummidi noted that it is only women who are above 50 years who come for these check-ups owing to a stigma around the disease. Women in their reproductive ages “feel shy”. “They won’t go to the village health clinic centre or get medicines...If they do, they go to private hospitals which increases their out-of-pocket expenditure. It is hard getting them to recognise diabetes... they don’t want to be termed as a diabetic.”

Gendered roles, gaps in healthcare and the stigma of a chronic condition shape Indian women’s experience of a rising non-communicable disease. 

He recalls the case of a 38-year-old woman who was diagnosed with type 2 diabetes some months ago, but has refused to tell her husband. Is it fear, shame, or familial stress? All of the above. “Diabetes is for life — it needs lifelong care and medication... It is hard for young women to accept this truth.”

Reproductive bias

Somya Gupta, a Delhi-based gynaecologist, notes pregnancy often becomes the first time many are diagnosed with diabetes. For rural women in particular, it is their “first brush with medical check-ups”, when they visit the healthcare facility for ultrasounds and supplements. Pregnant women are at risk of GD — a condition which affects at least 50 lakh women annually. Women with GD are also predisposed to developing type 2 diabetes, or other metabolic disorders and NCDs such as heart diseases later in life.

ALSO READ | Early diagnosis, treatment of diabetes in pregnant women benefit infants: study

If left untreated, the condition can cause complications for both the mother and foetus, including preeclampsia, stillbirth, hypoglycemia (low blood glucose). Those first crucial years till puberty can influence the metabolism of the child, research shows. The first three months of pregnancy - when the foetus is developing - high maternal blood sugar levels can increase the likelihood of the baby developing congenital defects. “Undiagnosed and untreated diabetes in women, particularly in reproductive age groups, can have devastating consequences if they become pregnant,” Dr. Gupta notes. But “women – regardless of their education and literacy -- are not aware how critical ruling out diabetes and controlling blood sugar levels in pregnancy is.”

Pregnant women are advised to return for follow-up sessions within the first six weeks of delivery and then one year. But Dr. Gupta remarks that “many women are lost to follow-up”.

Still, pregnancy in a way injects a fluorescent dye on the gendered risk of diabetes. Experts agree diabetes screening and care is at its most operational for a reproductive body. Ante-natal check-ups are mandated and checking blood sugars falls under the job charts of ASHAs and ANMs. Andhra Pradesh is currently piloting an application for ANMs (ANMOL app) to “identify and track beneficiaries throughout their reproductive cycle”. How many vaccinations are given to the child? What postnatal care was given to the new mother?

Nupur Lalvani, the founder of the support group Blue Circles Diabetes Foundation, sees a trend among people in the community: when pregnant, women’s blood sugars are excellent. “It’s teamwork, everyone’s pitching in. They’re managing to control their numbers. And boom, once the baby comes, everything goes out of the window.”

“Why is it that this amount of care is accorded to women only during pregnancy?”

As part of the government’s Integrated Child Development Scheme (ICDS), pregnant women and lactating mothers receive a special diet (chikki, jaggery, eggs, millets, milk and multigrain flour) - which is beneficial to manage diabetes as well - “to meet the nutritional standards”. The same ingredients — specifically millets and jaggery — are not provided under the Public Distribution Scheme (PDS), which provides five kg of rice (low-carb diets are advised to people with diabetes), dal and sugar in limited quantities. Anganwadi centres cater to nursing mothers and infants, but currently, there are no specified guidelines or support for screening Type 2 diabetes, despite its prevalence.

After childbirth, Dr. Gummidi notes, the care shifts away. “The woman is forgotten, and she has to be responsible for her own health.”

Coming: Part 2 on ‘Who cares for women living with diabetes?’

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