Mulela’s story: I refused to give in to stigma

After experiencing horrifying discrimination from her community because she had tuberculosis and HIV, Mulela refused to be crushed.

After experiencing horrifying discrimination from her community because she had tuberculosis and HIV, Mulela Mulima* refused to be crushed. Instead she found the strength to speak out, to help others and change people’s attitudes.

Mulela, from Kanyama township in Lusaka, Zambia had been a street kid and was destitute for many years before she was forced into marriage. She is now a mother of two children.

In 2005, Mulela became ill with tuberculosis (TB). She said: “My husband never really cared for me, as he would leave home for weeks to go and do his business.” Their house was situated near the main road and, every morning, she would wake up with swollen legs and sit by the roadside. As people passed near her home, they would give her money until someone told her elder sister in the village about her condition. Her sister came immediately and took her to her village.

Waiting to die

Mulela asked her grandfather and sister to take her to the hospital, because she had a feeling that it was TB. Instead, they insisted she saw a traditional healer, who made tattoos all over her body. After this, Mulela became very ill. She could not walk or talk with her ten-year-old daughter, who took care of her by ensuring that she had something to eat.

At that time, her grandfather would come into her room and peep through the blankets and say: “Today it looks like we won’t see the sun together.”  He even asked men to bring shovels and picks to dig her grave. Mulela recalls: “I smelt death, as everyone was just waiting for me to die. I became so frail that I started to see angels on my left and right sides.”  Her family finally took her to the hospital where she was put on TB treatment but she could not take the medicine consistently because no one was providing her with food or care.

One day, some Catholic women paid Mulela a visit and left her some money, which she used to travel to her sister’s house in Lusaka. On her journey she slept on the back seat and, at every road block, the driver of the bus was asked why he was carrying a dead body. Her daughter, who was with her, would lift up the mother’s arm in order to convince the policemen she was still alive.

Facing stigma

Once at her sister’s place, Mulela decided to go for voluntary counselling and testing and discovered she was HIV positive. She said: “I never really understood where I got the virus from, but I’d previously had a tough life on the streets.”

The doctor prescribed antiretrovirals and TB drugs and, this time, she stuck to the treatment. However she did not reveal her HIV status to her sister, as she was afraid.

One day Mulela decided to go to church and, as she listened to people’s testimonies, she raised up her hand and shared her own story. Before she could even finish, the pastor asked her to shut up and never talk about HIV and antiretroviral drugs in his church ever again. After that, he preached a message directed at her, stating that God was punishing her for all the sins she had committed.

“I felt so bad because all the people in church moved away from where I sat,” she said.

Speaking out

Mulela was introduced to a support group for people living with HIV by a friend who was a member of the group. She said: “It was difficult for me to disclose my status at first but, when I realised there were so many people suffering out there, I decided to share my story. The people I talked to were happy that I was being open.

“After that, I became a free-minded person who was able to give health education and raise awareness in the community, including the churches, about HIV and AIDS and TB. I support those who are in the same situation by helping them to come out and disclose their status to their families and friends.”

Mulela is now working as a peer educator at a clinic where people can seek HIV testing and treatment. She says the situation in her community is improving for people living with HIV. As more people are being open about their status, other members of the community are beginning to accept them, reducing stigma and discrimination.

She has even helped pastors understand that HIV is not a punishment from God. The pastor who chased her from the church has apologised to Mulela for treating her badly and asked her to forgive him.

*name changed

Read more about HIV and human rights

Image: Brainstorming at an anti-stigma workshop in Zambia.
© Nell Freeman for the International HIV/AIDS Alliance

COMMENTS

WORDPRESS: 3
  • comment-avatar

    Constance; this is a great story. Congratulations and keep it up

  • comment-avatar
    Lindy McCatt 4 years

    What a heartwarming story! What a brave and courageous woman.