When peer support becomes your life

Barbara, an expert client from TASO Masindi, suspects she might have contracted HIV around 1988 from her boyfriend at the time. She was a young sheltered girl who was excited to have captured the attention of a rich older man. Sadly, he had relationships with several other women one of whom had HIV. It was said that he died due to excessive alcoholism, but she recalls that he showed signs of wasting away and had a rash. By the time he died, they were separated even though she bore him a son in 1989.

It wasn’t until 1990 that she was tested for HIV in Jinja. After informing her that she was HIV positive, the counselor informed her that she only had six months to live unless she adhered to the guidelines she had given her. Prior to testing her parents had sent her to tailoring school so that she could have a skill to take care of her children. But the minute they found out that she was HIV positive, they abandoned her and her children. In their words “She was a waste, after all she was going to die”.

Barbara received care from a mobile care home in Jinja until 1991 when TASO Jinja was opened. Her registration number was 37. At TASO she received ongoing counseling, vitamins, tea during break time and occasionally porridge to take home. She is grateful that Jajja Noerine visited them regularly and encouraged them to keep fighting until a solution was found. Those are the words that kept her going. There was no Septrin prophylaxis or Antiretroviral Therapy at the time.

After a while she was depressed and felt the need to hide from her neighbours who stigmatized her and her family. She then went to live with her older sister in Nairobi. Her sister had just gotten married but was willing to care for her and her children. While in Nairobi Barbara fell sick, she went to a private clinic where she revealed her HIV status so that they could give her appropriate care. At the clinic they were happy to see someone openly declare their HIV status. They formed a support group called Upendo where she was invited to talk to and encourage others living with HIV.

In 2000, Barbara returned to Uganda but went to live in Masindi where she joined the Philly Lutaaya Initiative set up by AIDS Information Center. While there she was trained in Public speaking and she continued to work with the HIV sensitisation teams in the communities. She also volunteered with several other support groups such as NACWOLA and later Mama’s Club which was formed in 2004. 

When TASO finally opened its doors in Masindi in 2005, Barbara was again one of its pioneer clients. With her skills she became an expert client, she continued to share her story in communities and support women who were too scared to disclose to their families.

Barbara had 3 children, all HIV negative, but unfortunately she lost two of them. Her surviving child is doing well and is able to take care of her since she is nolonger engaged by TASO on full time basis. As an expert client, she continues to share her knowledge and experience with the people around her in the hope that she is making a difference in their lives.

Barbara’s story spans over a period of 32 years. And while you can hear the pain of abandonment and hardship in her voice, you can also hear courage and the zeal to carry on until a solution is found. She feels that for as long as she is alive, no one in her community should die an AIDS related death because of lack of knowledge or stigma. 

We applaud her for sharing her story with us.