How I overcame loneliness and HIV stigma as a young mother

© Jaqueline Mushi for Frontline AIDS

Sophia has faced isolation, poverty and low self-esteem. But with support from her peers, the future is looking brighter for her and her daughter.

Sophia doesn’t remember her mum. She died when Sophia was only five years old. A few years later, her brother John got ill. By the time he was diagnosed with HIV he was very weak. He was just ten when he died.

Sophia was sent to live with her grandparents, and that’s when she was tested for HIV. She doesn’t remember anyone else in her family being tested, or being told the results. They immediately separated her clothes and dishes and even soap from the rest of the family. But no one told her why this was happening. She also remembers having to take medicines from 2006 though she didn’t understand what they were for.

Confusion, stigmatisation and insecurity set the tone for Sophia’s early life.

Sophia was 12 when she was told she had to leave her home in Moshi in the Kilimanjaro region of Tanzania and was sent to Dar Es Salaam to live with her uncle.
There she continued her schooling, and remembers her aunt taking her for hospital appointments, but she still didn’t know why.

During a school lesson on HIV it dawned on her that this was the reason for the hospital visits, the reason she was taking medicines, and the reason for her brother’s death.

Finding support among peers

When Sophia, as a young adult, came to terms with her HIV diagnosis she wanted to do something to support other young people facing HIV-related discrimination. She became a volunteer Community Adolescent Treatment Supporter (known as CATS) In Dar Es Salaam with the Kimara Peer Educators, part of the Frontline AIDS READY+ programme. She liked the fact that she could speak to other young people around treatment adherence and to be part of a community.

“I felt a connection with young people living with HIV, I wanted to help other young people to accept their status,” she says.

But in spite of her growing self confidence and her desire to support and inform other young people about HIV, her ingrained lack of self-esteem and fear of rejection remained.

Sophia was working on data collection at a supermarket when she met her boyfriend. He was older. She told him she was living with HIV, and also about what had happened to her mother and brother, and she asked him to wear a condom when they had sex but he said he didn’t like them and refused. Long-stigmatised and lacking confidence, she was afraid if she didn’t agree he might leave her.

Rejected by family – again

They were together for nearly a year when she missed her period and Sophia realised she was pregnant. Her overwhelming feeling was of fear – of her uncle’s reaction and that her baby might be born with HIV. Her aunt was secretly supportive and Sophia managed to go to the nearby health clinic for treatment to prevent transmission of HIV to her baby. She hid her growing bump, but by seven months it became obvious and her uncle angrily confronted her.

He demanded a meeting with her boyfriend. He came to the house with a relative and Sophia’s uncle demanded he marry her. He refused and disappeared. She later heard he’d moved to Arusha. He has never seen Sophia’s baby or asked after her.

After that, Sophia’s uncle asked her to leave, and his wife sent her to another aunt – this time her mother’s younger sister. It wasn’t a happy move – her new aunt constantly demanded money from Sophia’s relatives claiming it was ‘for the baby’ but keeping it for herself. Her greed caused a family rift and the new home felt chaotic, unsafe and unstable.

Coping as a single mum

Feeling insecure and anxious about her future, Sophia turned to her fellow CATS. They were there to support her during her pregnancy and the gruelling two-day labour and birth of her daughter, Gracious.

Sophia is not happy about being a single mum, but she is coping. She has found a strong supportive community in the CATS, and they have also helped her financially at times. She is working hard and is saving a little towards starting a business and being able to provide for Gracious.

Supporting other young women like Sophia

Sophia’s story is not unusual. Her situation – a young woman living with HIV without any means of support or companionship – is repeated across Tanzania, and Africa.

Adolescents and young people are highly vulnerable to HIV – not least because they cannot easily get information about their sexual and reproductive health and rights. Peer pressure, gender discrimination and cultural taboos all have an impact too. So much so that AIDS is the leading cause of death among 10-19 year olds in sub-Saharan Africa and the second most common cause of death globally.

Frontline AIDS supports young women like Sophia through programmes like READY which are designed to empower and build resilience in adolescents and young people. One of these programmes, READY+, aims to reach 30,000 adolescents and young people living with HIV in Tanzania and in eSwatini, Mozambique and Zimbabwe with sexual and reproductive health services and mental health support.

CATS play a vital role providing information, counselling and support to other young people living with HIV in clinics and during home visits. They encourage young people struggling with side-effects, ‘treatment fatigue’, self-stigma or a lack of support to stick to their HIV treatment and claim their right to a full and healthy life.

The READY Movement is led by the Global Network of Young People living with HIV (Y+), with vital financial, practical and emotional support from Frontline AIDS and its partners.

Jaqueline Mushi is the READY+ Programme Officer for REPSSI, the lead project partner in Tanzania.

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Community Adolescent Treatment Supporter (CATS)StigmaTanzania