Social costs of killer disease on patients, families
Moses Otieno was diagnosed with bone cancer at the age of 16 years. He can easily be picked out of a crowd.
That is not because of the crutch that has become his constant companion since his leg was amputated in 2014, but largely for his go-getter attitude and confidence.
It has been a long walk to where he is today, but his journey, like that of many cancer survivors, has been fraught with many challenges.
“When I got cancer I was in Form Two. I asked myself many questions like why the disease chose me. I was young and physical appearance was very important so losing my leg was a big deal,” he said.
Otieno’s worst fear was that society would reject him. The social impact of cancer on patients and families is rarely discussed, but is an issue that many have to content with, in addition to the financial toll.
David Makumi the vice chair of the Non Communicable Diseases Alliance of Kenya says the social impact of cancer on families is an underreported and unappreciated issue.
Marriage break ups
“Sometimes patients are more worried about what the disease will do to their marriages and families more than about money. Some end up getting divorced. It becomes more difficult when they have wounds or swellings. They are isolated by their families and society,” he said.
Mukami said some cultural and religious beliefs that cancer is a curse or wrath of God does not help the situation. He described some religious communities as cancer-illiterate for driving the notion that cancer affects bad people.
“Issues of sexuality for cancer patients have not been addressed. This really affects the family,” he says.
A director at the Kenya Network of Cancer Organisations (Kesho), Elo Mapelu underscored the social impact of cancer, saying he is currently in five WhatsaApp groups to raise funds for people who are going through cancer treatment or have succumbed to the disease.
“Cancer is a massive financial drain on the family. Some are ostracised and looked at as foreigners or unproductive,” he said.
Social stigma
Hospitals, he said, are also perpetuating the social stigma facing cancer patients.
“In many hospitals, the cancer ward is a no-go zone. They are usually isolated,” he said.
For Otieno, the social effect of a cancer diagnosis, was eased by the fact that his family stood by him and refused to treat him different because of his condition.
“My mother would ask me to do the same things I used do such as washing clothes and dishes. When I refused to come out of the house for weeks because my foot had been amputated, she looked me in the eye and told me that no matter how long I stayed indoors, my foot would not grow back. It was a harsh reality, but it was the truth.
“I decided that I still had a life to live so I went back to school in 2015, completed my exams and got a C. After that I went to the University of Nairobi and did a course in sign language,” he said.
Today, he is creating awareness on cancer in Kariobangi, Korogocho and other informal settlements through his organisation, Save 1.
