I Am A Cancer Survivor, So Don’t Tell Me What My Pain Is Or Isn’t!

Trigger Warning: This deals with the first person experience of a cancer survivor, and how insensitive words can minimise or gaslight their pain.

You could have been the bravest during your cancer treatment, and you could have emerged from it more or less unbroken. But when it’s time for the annual follow-up check-ups, the ambience of the path labs, however prettily done, and the energy of the moment grip your heart with a creepy warm, uneasy hold.

Most of us survivors banish thoughts and words like cancer, death, and fear from our consciousness. We don’t want to manifest anything of that sort. We focus instead on the lessons we’ve learned and the things of true value- moments with our family, our breath, the ability to make a meal for those we love, to be able to go to the bathroom, to take a deep breath without writhing in pain, to be able to change the linen all by ourselves; the various examples of mini-independence we take for granted daily.

Waiting for a post surgery mammogram

This year, I found myself in the waiting room of a plush path lab in South Mumbai. I was there for a simple mammogram. I tried not to think of how much more it hurts post the surgery. As I waited and spoke to the nurses, their Relationship Manager who had been around, approached me. In her mid-forties, well-dressed and confident, she really believed in the concept of their establishment- a one-stop shop for all kinds of tests and scans and an all-women staff for women.

After going through a year plus of surgeries and treatments I had been attended to by tens of capable male and female doctors, nurses, attendants, and technicians. Having an all-woman staff now for one test was not on my mind at all. In my current frame of mind, it brought me zero comfort. I forget why the lady approached me and what she was asking, but the conversation veered to my chest X-ray.

“Have you had a mammography before?” she asked.

A strange question I felt, as she knew I was breast cancer survivor. I had had my fair share mammograms over the past three years. But she was asking me about “mammography,”. My doctors used to say “mammogram.” And another had said “breast X-ray.” So to be clear I was understanding correctly I asked, “Umm, mammography is the same thing as mammogram right? The painful thing where the breast is pressed between plates?”

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She then said, “Nothing is painful. It’s all in the mind.”

But she didn’t answer me. Instead, she dismissed my words immediately with a shrug and a wave of hands. She then said, “Nothing is painful. It’s all in the mind.”

She then proceeded with urgency to tell me about the various plans they had to offer me – exhaustive plans that cover all kinds of tests for all kind of things. I looked through the plans she showed. There was a package for cancer. It had about 25 kinds of tests and scans included in it. It had a 5000 Rupee discount offer going on. The conversation went back to mammograms, and I found myself using the word, “painful” again. A bizarre déjà vu followed, and with an all-knowing expression she too repeated, “Nothing is painful; it’s all in the mind.”

I contemplated then, if I whacked her hard, would she feel pain, or would she tell herself it’s all in her mind?

Or perhaps she is a survivor herself and would share something she learned along her journey. I continued to listen and in the conversation that followed, she mentioned, “My relative in America had cancer.” Her knowledge of the experience of cancer and the surgeries and chemotherapy and radiation and everything came from a “relative in America.” She wasn’t even a care provider to have at least seen things first-hand.

Non-survivors – please watch your words!

Cancer has taught me many things. Of them, one is that it is okay to speak up in a way that I am comfortable, which is to speak without aggression, but speak I must. And so I said calmly, “The pain we feel is not just in the mind. It is very much in our bodies. With the strength of our mind, we do overcome it, but the pain, it is very much there. It is not nothing.”

She seemed distracted. Her focus still deep on the curated package of the twenty-five odd tests, that she believed was perfect for me. Meanwhile, I had lost interest in the mammogram itself. I got it done another day in another place, where they didn’t tell me that my pain was nothing.

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