Listen to women in pain
In college, I had a friend who felt compelled to attend classes and theatre practice, despite debilitating pain, on the first day of her period. On more than one occasion, in the middle of practice, I was met with the sight of blood pooling at her feet. In my early teen years, when I experienced irregular and painful periods, the doctor informed me that I was “just not used to” the monthly cycle of blood and discomfort. When abnormal hormonal fluctuations triggered an autoimmune condition, one which leaves me bedridden for days at a time, doctors had no answers for me for a long time.
Recently, India’s first genome-wide study of endometriosis shed some light on the role genetics play in the manifestation of the condition. It is a great step in addressing the underrepresentation of South Asian people in the genetic research on the condition. It opens the door for more research, conversation, and a deeper understanding of a condition that has been criminally understudied and misunderstood.
While the broadening public dialogue and scientific research are positive signs, the larger question remains: Why are reproductive disorders so poorly understood? Why do women, across history and geographies, have their pain dismissed and minimised when they seek help?
The answer is as simple as it is unjust: Society and medicine still hesitate to take women and their pain seriously.
For 4,000 years, a wide range of physical and mental illnesses in women were labelled hysteria — with barely any cures beyond spells, sexual abstinence and condemnation. Today, it can take several years and doctors for women to be diagnosed with PMOS. For endometriosis, it can take up to 12 years for a confirmed diagnosis. In the meantime, the damage only compounds.
Across the world, and in India in particular, women are lauded for their pain tolerance — menstruation, childbirth and menopause — and derided if they complain. Author Hilary Mantel, in a 2004 essay on her experience with endometriosis, wrote, “People talked — and still do — of a ‘low-pain threshold’. I didn’t want anyone to think I had that.” Thankfully, she didn’t have that. Instead, several years later, of course, she discovered what she had was endometriosis. And the payment for the diagnosis was “part of my bladder and my bowel, my womb and my ovaries.”
In India, in particular, where menstruation is still considered a taboo in large swathes of the country, and speaking of reproductive health, let alone any abnormalities around it, is shrouded in shame, fear, and ignorance, the conversation is far from where it needs to be. Chronic pain and illness are an incredibly isolating reality to contend with. Having that experience compounded by stigma, cruelty, and gendered bias makes the cost much higher for women’s physical and mental health and future.
After 12 years of hospital visits and unexplained illness, my friend was finally diagnosed with endometriosis. A delayed diagnosis culminated in several surgeries, and an adequate resolution remains a pipe dream. At 17, I was diagnosed with Polyendocrine Metabolic Ovarian Syndrome (PMOS). A few years after that, I finally had a diagnosis for the autoimmune condition. By then, the damage was serious enough that even with the best care, a surgery, at this point, seems unavoidable.
A society that refuses to treat its women with care and their pain with dignity can only reproduce similar patterns in medicine. This is why medicine alone cannot do the work. It needs a society that doesn’t rank women’s pain, one that cares enough to listen. The question is: Do we care enough to change?