I was on a patient visit, to understand why some of our TB diagnosed patients were not consuming their medicines and to further motivate them to eat, take care and routinely consume their medicines. On one such visit we came across a home besides a corn field where a man was tapping his foot on his sewing machine. We went in and he immediately stopped doing what he was doing.
I asked, ‘आपकी पत्नी से मुलाकात हो सकती है? (Can we talk to your wife?)
He said ‘आप बताये आपको बात क्या करनी है (You tell me what is it that you wish to know)
I was strictly instructed to talk to the patient in charge and if possible, a guardian but the focus was supposed to be the patient. However, something in the way he responded made me feel like there was more to this story. Through our conversation, the husband very frankly mentioned that his wife has fourth stage ovarian cancer. Hence, she has not been taking TB medicines for the last two months and even the doctors have given up. I was stunned into silence by the incredible frankness – an acceptance of the situation. My colleague asked some of the routine questions and also gave some advice as to what some of the next possible steps can be. After regaining myself a little, I steeled myself to ask the question that was bothering me – had there been no signs before? How did it reach this extent before any warning signs?
Her husband told me that she had been experiencing unnatural pain and irregular periods for a while but controlled herself through local medicines and periodic pain killers and hid this news from her family. All of this was revealed only after she was diagnosed with TB. On my way back, while sitting on my colleague’s scooter, with the wind within my hair, I wanted to simply cry. But more importantly the question that kept bothering me was; why did that woman not express her pain earlier and rather choose to stay silent?
After this incident I started noticing this a lot more. It is not an issue that is only faced in rural India or that only women from lower-income households tend to hide their pain. My understanding of the situation led me to see that this is something all women tend to do. Some more than others of course.
There is a young girl, my colleague at work. She is like a sister. One day she asked me for a sanitary pad. Another 10 days later she was looking extremely tired and weak and upon questioning she told me that she was on her periods, again. Out of curiosity and also not being able to keep anything within me, I asked her about her menstrual cycle and she told me ‘कभी भी चालू हो जाता हैं, दीदी (they start at any time)’.
I asked her to give me more detail. She told me that along with her periodic cycle being extremely irregular, she has a growth on her breast that has been around for a while. She said it very casually. I was surprised at her lack of seriousness regarding this. She saw my face, laughed and told me ‘क्या दीदी, आप घबरा गए हो, यह तो सबके साथ होता है। मेरी दोस्त को भी ऐसे है, और वह धब्बा कभी छोटा होता है तो कभी बड़ा’ (You have become worried at this only? This happens to everyone. One of my friends has it, sometimes the mark increases and sometimes decreases). I immediately sat her down and made her realise the seriousness of the situation and the importance of getting a check-up soon.
Through a few conversations with other colleagues, I gauged that this comes from a lack of awareness about one’s body but also inherent fear as to who to go to incase of some issue – “किसको बताये, कौन मदद करेगा” (who to go to, who will help)?
Not long after these incidents I myself was sitting in an icy-cold ultra-sound room. My stomach had been creating trouble for me for a while now and after seriously delaying it, when the situation got serious, I consulted a doctor. I had never got an ultra-sound before. While examining me the doctor was asking me a whole host of questions and in all honesty, I had the answer to none of them. My ignorance and possible naivety, resulted in me not knowing my own body enough. The signs were all the same; lack of awareness about one’s body, fear of approaching someone and even disregarding one’s pain.
While, in that freezing cold examination room I realised all this and also realised that I am one who has all the possible means of getting the information that I need, but I choose to remain ignorant. Therefore, in what position, was I myself lecturing my colleague on getting checked, when months down the line I myself was in a similar situation. I re-visited all those times, I had ignored when my period cycle was messed up or if I had avoided seeing a certain mark or tumour on my body. My colleague and I are ones who have the potential of getting the help we might need and we have people who might even hear us out. What happens to all those women who don’t have these resources or even such a support system?
I wished to investigate the reasons for this in detail – during a conversation with a group of our women volunteers, I posed this question to all of them – “Why do we not get a checkup when we know something might be off?” I wasn’t looking for any particular reason but the responses I got touched home and resonated with what I myself felt. I might not be ready to entirely open up to this possibility, but the truth was staring back at me.
‘हमे लगता है की सबके साथ होता है, लेकिन हम डरते है की अगर हम बोले और सबका साथ नहीं होता है तो मेरे साथ क्या हो सकता है’ (we think this happens to everyone, but in case we open up and people don’t have similar situations, they will judge us),
‘हमे लगता है अपने आप ठीक हो जाएगा’ (we think it’ll get okay on it’s own),
‘हम वह हिस्सा किसी और को कैसे दिखा पाएंगे’ (how will we show that part to anyone else),
‘डॉक्टर जो बोलते है, हम और डर जाते है’ (whatever advice the doctor provides, instead of consoling, its more worrying).
I remember having all these thoughts when my stomach was not okay as well. Whether this is a result of lack of awareness, lack of proper sex-education or patriarchy is up to us to investigate. But the truth that I have realized is, that it is inherently ingrained in us, women, to keep our issues to ourselves, until and unless the situation gets serious and is out of our hands.
According to an article by the Times Of India, ‘One woman gets diagnosed with breast cancer every 4 minutes in India, and one woman dies of breast cancer every 13 minutes’, making it the most prevalent cancer among Indian women. Women in India are generally diagnosed at a later, more advanced stage with poor prognosis’. As per another article, Ovarian cancer is the third most common gynaecological cancer in Indian women … most often it is diagnosed in Stage III or IV.
In both articles, the common aspect is – late diagnosis. It is almost scary to assess that you have symptoms, something is bothering you; but you to choose to stay silence until it is almost the reason for your potential death.
I’ll be honest, this piece is not one where I will be offering a solution, because I myself don’t have one. Keeping quiet about my pain and keeping silent about what is bothering me. So, I will open up this discussion to you for potential solutions. However, what I will motivate you to do and what I aim to do myself is make more women around me aware of the issues they might be facing and to encourage them to talk and express themselves. Simple self-examinations that are essential is to monitor your menstrual cycle to notice anything unnatural and to even do a breast self-exam for breast awareness.
It is true that problems may tend to reveal themselves at a later stage, but opening up a space where one can express their discomfort can definitely be a first step. What do you think?
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