‘I wanted to die’

Pemba has struggled to be accepted by her community since she was diagnosed with leprosy, but the counselling she has received at Anandaban Hospital is gradually restoring her confidence.
 

Pemba has piercing blue eyes and a gentle manner. She is 80 years old but travelled for several days to reach TLM’s Anandaban Hospital in Kathmandu, Nepal. She has some serious disabilities due to leprosy and her hands are extremely disfigured.

Pemba explains that she has lived with the consequences of leprosy for over 40 years. At the time she was diagnosed there was no adequate cure for the disease. But she did receive available treatment from a local charity hospital and a very caring doctor.

In the far west of Nepal, where Pemba is from, very little is understood about leprosy; many misconceptions and myths surround the disease. Because of this Pemba has suffered painful rejection.

She cries when she explains the hurtful way she has been treated. ‘At the time people in the community rejected me, but my husband loved me and the doctor cured me. Because of the doctor’s care and my husband’s love, I am still alive, otherwise I would be dead.’

Friends and neighbours in the village either ignored her or said awful things to her. She was not welcomed into people’s home or invited to attend celebrations and community events. ‘I was very worried at that time when people said all those things, I wanted to die,’ Pemba says tearfully.

Things have improved slightly, but Pemba is still concerned that her grandchildren will get the disease. The counsellor at Anandaban explains to Pemba that it is not a genetic disease so she shouldn’t be too worried about that.

‘Sometimes I’ve shared about how I’m feeling with my family, but not with the community,’ Pemba says. ‘They don’t want to talk to me.’

‘Nowadays it’s alright because in our community there are many festivals and now they invite me and if I can’t go they bring me some things from the festival. Before, they didn’t invite me.’

And Pemba has suggestions for how to reduce the stigma even further.

‘I think maybe if some of our people from the village came to the Mission Hospital and met people with the disease, or heard about it on an FM radio program, they would change their feelings.’

The Leprosy Mission in Nepal, and in many other countries around the world, is attempting to do exactly as Pemba suggests; educating people about leprosy through as many means as possible so that misunderstandings and myths can be stamped out. In this way people-affected by leprosy can enjoy the same rights and quality of life as everyone else in their community. 

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