Posted by Viji Venkatesh on January 04, 2011
The story that follows is of two mothers in India, each of whom was facing their own struggles to overcome stigma, showing us that in our own intimate circles, as well as in our global community, together we can change the face of cancer. There is so much we can learn from them about facing cancer with dignity, with pride and with courage.
It was my first meeting with the young lad; a bright-eyed and sharp looking fourteen year old who had just been diagnosed with leukaemia. He was accompanied by his mother who took me aside the very first minute she could to warn me against mentioning the word “Cancer” in the hearing of her child. ‘I do not want him ever to know he has this disease; he will never recover from the shock,” she said. It broke my heart to see her struggling with this secret she had sworn to keep from her beloved son; the heartache she had to hide.
My mind went back to some weeks ago when another concerned mother had begged me to show the very same consideration to her sons; only this time it was the lady herself who was diagnosed with cancer. “Please do not call home ever and do not mail anything to our home address,” she had insisted “my sons will not be able to bear the shock of knowing their mother has cancer”.
Both these loving, caring mothers were, without even realising it, caught in a web of conspiracy and silence which would only isolate them further with nothing but the stigma of cancer for company. Fear, ignorance, prejudices, the myths and misconceptions surrounding cancer has forever led people to view it as a sinister, contagious and worst of all a shameful disease, often thought to be brought upon themselves through some misdemeanour on their part.
In both these cases it was nothing but the fierce desire to protect a loved one from the anguish that exposure to the situation was sure to bring about. What was unfortunate was that the perceived stigmatization and the enforced silence would only prevent the acceptance that was essential to ensure good management of the disease. Hiding the diagnosis from the patient or /and the primary caregiver could become the biggest deterrent to good compliance and therefore effective treatment.
Prolonged counselling sessions eventually chipped away at the insecurities and unveiled causes for the need for the secrecy: Fear of being ostracized by family, friends, school mates and co workers came first. But most of all it was the inability to realise that in those closest to you, one finds support and sustenance. And they would move heaven and earth to make the world the best place for their loved ones to be in.
But what a relief once there was no need to hide anything anymore. Like the mother who was the patient said, once she shared the diagnosis with her sons it was as though the greatest weight was lifted off her shoulders. Even the fact that she had cancer was easier to handle. Meeting other mothers and families in similar circumstances at support group meetings went a long way in convincing her that her sons had the right to know. Now, the proud mother tells me there is nothing she does not know about her disease which her sons have not scoured the internet for and given her the latest updates for. “They are my eyes and ears,” she says proudly “What would I do without them?"
And going back to the young boy from whom his condition was being kept a secret, a secret that was becoming more and more difficult for the mother to keep; the doctor shared with me that the young lad was very much aware of his diagnosis but was happy to let the mother believe that he was in the dark. He apparently was; with help from the internet learning all about his cancer. He confided in me saying that he was aware of his rights as a patient but as a son his duty to keeping his Ma happy came first. It is now eight years since the diagnosis and the once young teenager who was kept in sheltered silence is now an adult lending his broad and capable shoulder for his Ma to lean on and take courage from.
The mothers in this story represent the strides we are already taking together, in India and beyond, towards de-stigmatizing cancer, towards self-empowerment, and towards not keeping silent at all.