Some thoughts on the pain gap

My back pain engulfs every part of my existence. When I begin to lose sleep over it, a friend tells me to picture the pain. “Giving it shape or form helps one resolve their troubles,” she says, quoting her therapist. I close my eyes and tell her it feels like an entangled heap of wires, but it is light, not heavy. We laugh – it sounds profound enough, but we aren’t sure what to make of it. 

Then one evening, while doodling on the margins of a newspaper, I realise that the entangled wires represent the mental struggles accompanying my physical ailment. I scribble words like panic, anger, guilt and love next to the doodled mess of wires. At the centre, I write womanhood in bold letters and encircle it with a thick border. I send my friend this image and she responds confidently that these words are layers that need to be peeled. 

I scribble words like panic, anger, guilt and love next to the doodled mess of wires. At the centre, I write womanhood in bold letters and encircle it with a thick border.

To experience physical pain is to work through helplessness and hope – simultaneously. This dissonance also spotlights the push and pull between the woman and feminist within me. The woman seeks acceptance; she is afflicted by the reality of her bodily pain and mortified of letting go of her duties. The feminist is in search of strength; she dismisses socio-cultural constructions of the body, and believes rest and healing are critical for survival. I conscientiously try to reconcile the two. Without doubt, I know, co-existence and even intermingling of both constructs within me is in reach. 

Panic and anger

How could I be imagining pain that I can literally locate on the body with the point of a finger? 

I hobble my way into a hospital and describe the mix of sensations (tingling in the feet, a sore back, difficulty in walking) to the doctor. I have had similar symptoms six years ago and it eventually led to an “unpreventable” surgery. The doctor tests my leg movements and brushes off my concerns. “The symptoms don’t match your description,” he says. He thinks I am imagining the pain to be of higher intensity than it actually is because of my past experience. He speaks with such authority in his voice that I struggle to counter it. I return home with a prescription for painkillers, and confusion. How could I be imagining pain that I can literally locate on the body with the point of a finger? 

Over time, the pain juxtaposes with debilitating mental exhaustion. I fight tears in bed each night, sometimes because of the intensity of the pain and sometimes because I fear what lies ahead. I feel responsible for this recurring pain: did I sleep wrong, sit with bad posture, carry something heavy, work too obsessively? When the pain escalates, I can neither appreciate the melancholy in Lata Mangeshkar’s voice nor the spirit of Metallica or Pink Floyd.

The pain viscerally transforms all my senses. 

The next doctor I visit asks if I have a low tolerance for pain. He emphasises “low tolerance” in such a deliberate manner that I am almost ashamed. He makes it seem too trivial and my visit to the hospital too frivolous. Pain is now panic.  

I start journaling. I describe the nature of the pain – pinching, knotting, tingling, pressing, mechanical, discomfort, sharp. I rate the intensity, keep notes on frequency, mark other symptoms and record day-to-day dysfunctionality. If medical examinations discredit my pain, this could be another way to archive it. When things get worse, this is the only proof that it was building up all along. 

The third doctor asks me to get an MRI. When we look at the report on his screen, we see a disc bulge which has been causing a pinch in the nerve from the hip to the toe. He speaks to me with grandfatherly gentleness. “We will try our best to resolve it. But you should have tried to fix this earlier,” he says. He does not indicate the need for a second surgery, but does not deny the need for it either when I ask explicitly. But there are too many risks to a second surgery and not addressing it is easier. The pain is now anger and rage.

At times, I rebel against the pain by keeping busy at the desk, responding swiftly to emails, coding interview data, attending meetings, and organising files and folders. The ailing body does not procrastinate. On other days when the pain manages to strike harder, I give up – only because the body shuts down.

After having painkillers and a motley of other medicines for over three months, my periods become irregular. It has other hormonal implications for a female body. Unfortunately, this is not an easy conversation that can be had with male doctors. 

Because I am a researcher, I approach this academically. I embark on an untenable Google journey. I don’t search my symptoms; I know better than that. I search for literature with a combination of keywords: chronic pain, women’s bodies, gender disparities, etc. It is immediately clear that there is less research and funding to understand women-specific health concerns, such as extreme menstrual pain or PCOS. But tens of studies also describe how in cases of gender-neutral pain such as musculoskeletal pain, headache and arthritis, women’s self-reported pain is misdiagnosed as an emotional or psychological response, or considered to be an exaggeration. A review paper published in 2018 that looks at gender bias in treatment of pain points out that “women’s identity was influenced by pain in combination with society’s expectations, which included having a paid work, being a spouse and a mother, and being responsible for household and social relations.” 

The feminist in me uses this data and theory to make sense of my experience. I am a woman with caste-class privilege of network, education, wealth and even medical insurance from my workplace, and yet, I struggle. Women from socially marginalised backgrounds experience poor health outcomes and are routinely ill-treated by service providers. A friend suggests visiting a hospital that apparently uses a more holistic approach to treatment. There’s so little to lose at this point that I decide to give it a try. Talking about pain is also doing mental work: should it be underplayed so one doesn’t fit the trope of a fumbling woman or speak one’s mind because the pain is real? As my first conversation with the fourth doctor progresses, I sense comfort and end up  laying out all my vulnerabilities. 

It is empowering. He listens without judgement, neither dissing the pain nor the panic, both of which have become raging beasts by now.  

Treatment takes time and that is the one thing women don’t have. 

When I suggest that the cause of the pain is unclear, he says, “it could happen to anyone.” The largest number of patients visiting the hospital are those with back issues. There is victory in knowing that my pain is not a sign of womanly weakness or an outcome of twisted fate. 

One day, I ask timidly if I have to learn to live with the pain and organise my life accordingly. “No. Why should you?” he says, suggesting that a full recovery is possible. And still, we know of so many women who simply learn to ‘cope’ and ‘stay positive’. Treatment takes time and that is the one thing women don’t have.  

During one of our meetings, he suggests that the back pain is exacerbating due to stress. This is perhaps the first time I register that my body also carries the burden of my mind. When he asks if something is triggering stress, I know instantly what it is, but hesitate to tell him because there is no way to know what his political leanings are. When I mention this to a friend in passing, she reminds me that a doctor-patient relationship warrants that kind of trust. Later, I tell the doctor that as a feminist, the current political environment affects me deeply. It is something female friends talk about all the time. Stress perhaps manifests itself in different forms; in my case, it feeds the pain in my body.  

Recovery is a slow – and blurry – process. Multiple ailments interlace. The woman’s body and the feminist’s mind are coping with separate problems but are entangled like the ball of wires.

Guilt and love

To be a mother is to constantly engage with guilt. It is an everyday exercise.   

“Ignore the pain. If I fall sick I never stop. Who will cook and clean then? Even a cup of tea won’t get made in my house,” my friend’s mother says jokingly as she brings me a dabba of her winter special undhiyo. “You have to be brave,” she adds. 

I think of the only memory I have of my mother ever being sick. Over 25 years ago, I had returned from school one afternoon to find her lying in bed, her fractured hand in a cast. She was in pain, but smiling so I wouldn’t worry. That evening she was surrounded by her students who brought us home-cooked food and bouquets. When the fridge had finally emptied, my mother was back in the kitchen taking over from us despite our numerous protests. “I can’t sit idle,” she told me. By calling her recovery a form of idleness, my mother had unwittingly articulated her sense of responsibility towards the family and the house. Unconsciously, I suppose, my father and I were grateful to have her take charge again. We probably went back to swapping television channels that night without feeling admonished for indulging in what was, in fact, the ultimate idling away. 

I worry about sundry domestic chores I can’t do anymore, those my mother used to do for me. Then I get upset with myself because I have read enough to not feel guilty over household chores that are assumed to be a woman’s primary duty. The clatter in the kitchen as women unendingly engage in kitchen work rarely ever guilts a man in the living room who is reading a newspaper or browsing on his phone. One study points out that women prioritise childcare and household work despite the pain, while men with musculoskeletal pain hand over these tasks to their spouses. 

I feel distressed about the impact my condition is going to have on our 10-year old. “How does a child understand his mother’s condition, which makes it difficult for her to get out of bed?” I ask my husband one day. To be a mother is to constantly engage with guilt. It is an everyday exercise. 

My son was two when I started my PhD. Since then, I have trained my brain to stay away from the blame of being an absent parent while traveling for work. But the physical ailment triggers the most tangible motherly guilt because I am absent even when I am here. I wonder if my son’s memories of us trekking on the hills of Himachal will be replaced with that of me lying in bed, flinching in pain. Then instead, I hope as he grows up, he will look at this phase with humour and acceptance like the narrator in Em and the Big Hoom by Jerry Pinto. 

“What’s the score?” my son asks when he sees me this morning. “About 3-4,” I tell him. “That’s fantastic,” he says, giving me an extended hug. A few weeks ago, when the pain was at a 9, I had told him it was only a 6. But children are more perceptive than we like to believe. He knew from the look in my eyes that it was worse than what I let out. “You don’t have to hide it, Amma,” he said. “You will be fine. You have to be patient and you are already one!” he claps, adorably amused by his own wordplay. 

When my husband travels on work, our mothers come to our rescue. I watch my mother-in-law move deftly from one task to another, never complaining. A month later, my mother picks up seamlessly. I am acutely aware that my recovery is dependent on their labour. I wonder why this form of dependence seems more burdensome now than when I was pregnant with a child. But how many get such support from other family members for lingering health conditions?  

I also increasingly rely on love imparted by female friends on WhatsApp groups. They send me cheerful GIFs and jokes. When I apologise for talking about my pain, a friend quips that it sounds strange only because women don’t talk about their bodily trouble enough. 

After she says that, the group buzzes all afternoon. One mentions her aunt’s ailment that went undiagnosed because she never talked about it, another talks about women in her family who constantly overworked despite pain. “My father will scream even if he gets a tiny scratch; do you know the number of cuts and burns my mother shrugs off while working in the kitchen?” asks the third. 

My calendar reflects unfinished fieldwork and unwritten papers. Professional anxiety takes over. What if I am unable to get to work again? We know how easily women who take a break can fall off the labour market and become dispensable. A feminist perspective can often make work a central identity, and professional slowing down can feel like a personal loss. 

I disappear on sick leave and feel guilty about colleagues having to pick up my end of the work to meet impending deadlines. I tell a colleague-friend on the phone about feeling embarrassed about my absence. He reminds me that I have stepped up for others in the past and that feminist practice entails “accepting solidarity as much as giving solidarity.” His words make me weep some more. 

I watch my breath at various points in the day, hoping the tangled wires will grow even lighter eventually. I read feminist literature, sing aloud, and observe plants, trees, birds and insects in the garden — things that I once did out of sheer joy are now my coping mechanism.

Note: An earlier version of this piece was published on News 9.