Dil Kumari Tiwari didn’t know the painless lump on her right breast could have killed her. She had the lump for some time but did not believe it necessary to have it checked. It wasn’t painful and she didn’t think about it much. But, when Tiwari, who has been a thyroid patient for 10 years, visited the doctor for a regular check-up, she happened to mention the unusual lump.

After further examination, doctors confirmed Tiwari was in the second stage of breast cancer. After a series of treatments, including a major surgery to remove the lump and routine chemotherapy, Tiwari is now cancer-free. However, she believes if she knew the risks and symptoms of breast cancer, she could have detected it much earlier.

A number of studies have discovered that a majority of Nepal’s women are unaware of the importance of going for regular health checkups, especially when it comes to screenings for breast or cervical cancer.

“I didn’t know about breast cancer so I wasn’t aware of screening methods, such as self-exams, mammography and clinical examinations,” said 50-year-old Tiwari, who is illiterate. “If I hadn’t visited the doctor for my thyroid examination, I wouldn’t have known about my breast cancer and maybe I wouldn’t have survived.”

According to those studies, when they are aware, many women report embarrassment over such screenings, especially in front of male doctors.

One 2012 study that surveyed 110 women in Kathmandu on breast cancer knowledge and screening practices showed just 33 respondents had heard about breast cancer, while 26 were conducting regular screenings in the form of self-exams and mammograms.

A further study on health literacy in 2016, among adults in Lalitpur, discovered only 19.59 percent of 148 female respondents had undergone cervical cancer screening. The low rate was attributed to shyness and ignorance.

The World Health Organization defines health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.”

Low health literacy is associated with a lack of knowledge about health as well as the healthcare system, poor access and utilisation of health services, all of which lead to poor health outcomes and health inequality.

The WHO has also positioned health literacy as a key mechanism to meet health-related Sustainable Development Goals.

Doctors say that a majority of Nepali women have inadequate knowledge about their overall health, including reproductive health as well as their right to seek health care.

According to Dr Aruna Karki, a gynaecologist at Kathmandu Model Hospital, a large number of women come to the hospital in the late stages of their illness due to a lack of health literacy.

“There are many cases related to reproductive health, such as infertility, urinary tract infection, fistula, prolapse, unnatural discharge, and cervical cancer, for which women need to seek treatment,” said Karki. “However, 80 percent of women have admitted that they didn’t care about the early symptoms, because they didn’t have knowledge of their illnesses.”

When it comes to sexually transmitted diseases, many young people don’t seek help until the condition is severe due to ignorance of the disease and the stigma attached to sex, she said.

Various studies have shown a correlation between women’s education and health-related behaviours.

While the 2011 census shows that the literacy rate for females is quite low, at 57 percent; a 2015 paper on maternal health in rural Chitwan found that out of 673 women, only 30 percent of women with no education sought medical help and delivered babies in clinics or hospitals.

However, education attainment may not necessarily determine a person’s health literacy, according to Dr Prajjwal Pyakurel, assistant professor at the School of Public Health and Community Medicine at the BP Koirala Institute of Health Sciences. Pyakural says research has also found that while low overall literacy may impact health literacy, the relationship between them is complex.

“Although women may be highly educated, they may still possess low health literacy which can prevent them from seeking required treatment,” said Pyakurel.

For instance, 33-year-old Swekshya Karki, who holds a graduate degree, didn’t know she had an ovarian cyst until she decided to visit gynaecologist after failing to conceive multiple times. Ovarian cysts are fluid-filled sacs or pockets in an ovary or on its surface.

“I used to have unbearable period cramps and irregular periods. However, I didn’t think about going to the doctor since period cramps are regarded as normal and I didn’t think much about irregularity,” said Swekshya, who now takes medication for the cysts.

According to Swekshya, her doctor told her the cysts could have been treated easily, had she gone to the hospital earlier.

Like Tiwari, Swekshya also said she had never had regular health check-ups. Although she knows about cancer screening tests, she has neither undergone a mammogram for breast cancer nor pap tests or pap smears for cervical cancer.

According to gynaecologist Karki, even women who know about the positive impact of regular health check-ups are often unable to visit the doctor due to busy schedules at home.

Nita Shrestha, a 50-year-old retired teacher, didn’t know she had anaemia until she took a blood test for diabetes, that too, after being pressured by her husband to go to the doctor. Shrestha acknowledged she had intentionally neglected her health.

“Women in general are too occupied with their household activities that they forget to prioritise themselves,” said Shrestha.

According to the 2016 Nepal Demographic and Health Survey (NDHS), Nepal has made substantial progress in improving access to maternal healthcare access. The survey shows Nepal’s maternal mortality ratio decreased from 539 maternal deaths per 100,000 live births to 239 maternal deaths per 100,000 live births between 1996 and 2016.

The survey also found 81 percent of women were aware of AIDS and 77 percent of women recognised the risk of contracting HIV through unprotected sex.

However, Pyakurel said there is still a health disparity in seeking health care due to illiteracy, gender roles, poverty and geographical difficulties. Providing information and knowledge about different health-related issues could address social determinants of health by empowering people to take care of themselves, families and communities, he said.

“Measuring health literacy levels of people and coming up with health literacy interventions in the form of advocacy programmes and campaigns on different health-related issues can provide system-level solutions to address self-care and improve disease management in the society,” said Pyakurel.

Tiwari says she now knows about the preventive measures and symptoms of breast cancer, she makes sure her daughters undergo regular breast cancer screenings.

“Both of my daughters have undergone a mammogram,” said Tiwari. “I want them to learn from my journey and not be ignorant regarding cancer.”