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Beyond the stigma: How we found strength and acceptance after HIV diagnosis

"I want people to understand that if you are HIV positive, you don't die," she smiles. "You just live differently with a purpose."

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by Irene Murimi and Lina Nyamorata

Health12 November 2025 - 22:47
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In Summary


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    HIV treatment drugs.

     One quiet morning, some 35 years ago, one woman from Nakuru County got news that changed her life forever.  She had gone to take an HIV test but was not prepared for the outcome. The HIV test results left her terrified. She felt her world crumble.

    It was not the first time she had heard about HIV.  After all, she had lost her husband to HIV, but the test result showing her as positive left her momentarily devastated. Within a flash, many things passed through her mind, but then she drew strength from stories she had heard of how others had lived with the virus. She immediately chose to join efforts by women's groups that she knew, in fighting stigma and living positively.

    On December 1, the world comes together to commemorate World Aids Day, dedicated to raising awareness about HIV and Aids, honouring those living with the virus, and remembering those who have passed on.

    For decades, all over the world and even in Kenya, where thousands of individuals still carry the virus since it was first reported in the country in 1984, people have marched the streets to demand free treatment and to confront discrimination and stigma.

    In this struggle, one totem has come to represent the struggle for an AIDS-free society - the red ribbon.

    On World Aids Day, there are three people whose HIV positive life stories are a reminder that living with Aids is no less of a struggle than one of hope and acceptance in courage.

    They are a reminder of the fact that HIV is not an automatic death sentence, but also a guarantee of hope and self-dignity.

    In Kenya, the National Syndemic Diseases Control Council says more than 1.3 million people live with HIV and Aids. Women and young people account for the largest percentage of new infections. 

    Despite progress in treatment and prevention, stigma continues to threaten lives and discourage testing.

    The Nakuru woman is now a mother of three children, and has lived with HIV for more than two decades. She suspects she contracted it from her deceased husband, who had contracted the virus in prison. "I couldn't believe it at first," she cried.

    "I was terrified, I was furious, and I was humiliated. I was so horrified in my head to the point of just giving up on life because I thought everything was really over," she adds.

    Through therapy and medication at the Nakuru Level 5 hospital, she regained strength and acceptance. She now runs a peer support group for women recently diagnosed with HIV.

    “I use my story to remind them that life goes on,” she says. “HIV doesn’t define who you are.” Her group meets weekly to discuss adherence to treatment, nutrition, and self-esteem. I again found the courage to live. She survives to leave a mark on others and to inspire others to live and to dream. "I want people to understand that if you are HIV positive, you don't die," she smiles. "You just live differently with a purpose."

    The Ministry of Health has shown that such community-based support programmes have helped improve antiretroviral therapy (ART) adherence by 40 per cent in the last five years. Stigma levels have also declined, especially in urban areas where awareness campaigns are stronger.

    Dr Peter Mwangi, a counsellor and HIV awareness advocate at the Kenya Network of Women with Aids (KENWA), says stigma is still one of the biggest obstacles in rural Kenya.

    “People fear discrimination more than the disease itself,” he explains. “Many delay testing or skip medication because they don’t want to be seen collecting drugs at clinics.”

    Dr Mwangi believes education is key. “When people understand HIV as a manageable condition, they stop associating it with shame,” he adds. “Our focus is now on mental health, family support and empowering patients to speak openly.”

    Another advocate, who is 23 years old, represents a different face of HIV in Kenya. Born with the virus, he has never known life without medication. Growing up in Kisumu, he kept his status secret throughout primary and secondary school, fearing rejection from his peers.

    "I remember sitting in a biology class when we learned about HIV," he recalls. "The teacher spoke about it like it were a death sentence. I felt like everyone was staring at me, even though they didn't know."

    It wasn't until he joined the university that he found the courage to disclose his status. At the university, he connected with other young people living with HIV through a student support network. "Meeting others like me changed everything," he says. "I realise I wasn't alone, and I didn't have to hide anymore."

    Now a youth ambassador with the Kenya Aids NGOs Consortium (KANCO), he travels to schools and universities across the country, educating young people about prevention, testing, and living positively with HIV. His message is particularly powerful for young adults who make up a significant portion of new infections.

    "Young people today have access to better treatment and information than my parents' generation did," he explains. "But stigma still exists, especially in relationships. Many young people living with HIV struggle with disclosure to partners or fear they'll never find love."

    Back in Nakuru, the mother of three continues to live with purpose. Her children, all HIV-negative, are her biggest motivation. “I want them to see that strength is not in hiding,” she says. “It is in living honestly.”

    Many people fear discrimination more than HIV itself.

    Her journey reflects the theme Beyond the stigma. It reminds society that HIV is not a death sentence but a call to compassion, education and action. For thousands like her, living positively means more than survival; it means reclaiming dignity, one day at a time.

    In Nairobi, a caregiver of a mother who is HIV positive with a mental condition reveals how her mother lived in stigma for over 10 Years. Miriam (not her real name) recalls how she used to wonder why her mom kept going to Coptic Hospital for years, claiming she was just going for regular check-ups.

    One day, her mother went missing, only for Miriam to be called from Coptic and be informed about her mom’s ongoing clinics that she had never missed for 10 Years.

    That is the day Miriam’s world darkened. She couldn’t believe that her mother had been fighting this monster alone for that long. She recalls how she called her brother to inform him, and he cried aloud, not believing all those years the mother kept it a secret.

    Considering her mother's mental condition (dementia), it is a secret that they have kept within themselves (siblings) to protect their mother to the grave. Her mother’s condition has improved, and the viral load is undetectable.

    However, Miriam has to take her to the clinic every six months for viral load tests as well as ARVs refills. This has become hard since the mother is mentally challenged and uncontrollable. The psychiatrist ruled out any suggestion that the virus could cause dementia.

    ‘Irene, can you imagine your mother carrying such a burden for over 10 Years, keeping it to herself? It is such a heavy load that I wish and I pray that one shouldn’t be accustomed to it for fear of judgment and rejection. Look where it has landed us. It led to severe depression,” Miriam concludes with a sigh.

    Ongoing research highlights that stigma and discrimination remain significant barriers to quality life and effective care for people living with HIV/Aids.

     According to a 2021 study led by Galit Zeluf Andersson, despite advancements in HIV treatment and expanded access to ARVs, stigma leads to delayed testing, poor treatment adherence and psychological harm such as depression and anxiety.

    This results in worse health outcomes and accelerations. Studies emphasise that addressing stigma requires comprehensive multi-level interventions that are beyond healthcare settings. 

    Effective HIV/Aids stigma reduction requires holistic approaches addressing social, psychological, legal and healthcare dimensions with active participation of people living with HIV.  Enhancing quality of life and social inclusion with PLWHA goes beyond reducing negative attitudes, alongside efforts to protect their privacy and rights in healthcare and research environments.

    Alice Maina and Alvin Mwangi contributed to this article.

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