Cancer Survivors Face Discriminations in The Workplace in India

(Excerpted from ‘Hope Soars’; Edited by Jyotsna Govil; Published by Vitasta and Indian Cancer Society, Delhi; Price: Rs 395; Pp: 214)

Life with a diagnosis of cancer is about survival. In India, it is also about self-respect and your rights as a survivor.

I was diagnosed with a cancer called as Hodgkin’s lymphoma in 1986. I was studying in Canada then where treatment was rigid and financially draining. There is a recognition that offering psycho-social support to a person with a life-threatening illness is as important as physical care.

Support groups made up of your peers especially people going through a similar experience. Being with them provide a safe and therapeutic environment in which to express feelings, share fears and learn how best to cope with an illness. It was no surprise that when I returned to India after my encounter with cancer, setting up an emotional support group was uppermost in my mind. I was fortunate to meet a friend and a survivor a cancer named Mr. Jitendra Tuli.

After the diagnosis is made and treatment begins, everybody in the family was affected. One has to cope the fear, isolation and despair that accompany the news of a life-threatening illness such as cancer. This is followed by the toxic side effects of the rigorous treatments that follow. One has to cope with the lack of proper communication and information. The stigma attached to the disease can be overwhelming.

As treatment progresses, the all or nothing approach slowly gives way to the laborious task of staying alive day after day and week after week. Survival entails coping and struggling with the illness, its treatment and its side effects to the body. Mounting expenses and disruption of the family schedule can trigger stress and depresion.

It is the period of extended survival after treatment that is perhaps even less well recognized for its traumatic nature. The person wants to resume normal activity. Yet body and mind are not ready to respond. Physical strength diminishes while the mind is full of anxiety and ready to interpret each new symptom as a recurrence of the disease.

There are no sympathetic doctors or nurses available to turn to now except for periodic check ups. You will have to learn to deal with these new challenges at the home and at the workplace by yourself.

There is no “getting back to the way it was” for you and members of your family. Something has intrinsically changed both within yourself and outside. It is best to acknowledge it. You will have to renegotiate your relationship with the “healthy” world all over again and formulate a new sense of what is normal for yourself.

Unlike in the West, there are few organizations or trained individuals to assist a cancer survivor to deal with sensitive issues that may crop up such as sexuality and changed body image. It is the other way around in India. You are expected to pretend all is normal. Failure to resolve these issues leads to increasing frustration and alienation between partners who were once close.

Cancer survivors have no legal rights that they can enforce to protect themselves against “perceived” discrimination in the work place. If they do not lose their jobs, they are often relegated to perform unimportant tasks. They are also not considered eligible to apply for any kind of health or life insurance.

Those who lose a limb may receive some disability benefits. But for the vast majority due to their physical limitations find it difficult to perform at the same level of intensity as they did earlier. There is nothing to compensate. A program for the rehabilitation of cancer survivors is practically non-existent.

The next phase is not cure but permanent survival. One arrives at a stage where the possibility of a recurrence is considered. As part of this process of survival, one is forced to re-evaluate your life and focus on that which has greatest meaning for you.

The crisis of cancer is an opportunity to open communication channels among members and to come even closer for many families.

“Cancer… gives you an experience so intense, so frightening that it’s almost like being launched from a pad. You must change… Life is finite and can’t be predicted. It could be cancer or it could be the truck coming around the bend. One has to wake up, live a day, every day, as if it matters. It just isn’t the same any more. Because of that, all kinds of things become possible,” says Valerie, a 30-year-old breast cancer survivor.

(Excerpted from ‘Hope Soars’; Edited by Jyotsna Govil; Published by Vitasta and Indian Cancer Society, Delhi; Price: Rs 395; Pp: 214)