Through videos, I illustrate why lifelong HIV medication is no joke
Cleopatra Wanjiku, 30, was diagnosed with Hiv and Aids in 2007. She uses her social media platforms to create awareness and debunk myths about the disease.
What you need to know:
- There are other young people who would want to share their stories but are silenced by these perceptions.
- As a young woman who’s looking forward to motherhood, I hope to be part of Kenya’s story of ending HIV infection in children by 2027 and ending the Aids epidemic in the country by 2030.
Wanjiku Cleopatra, 30, is a HIV advocate and the founder of the Voice of a Black Child, an organisation that focuses on HIV sensitisation, sexual reproductive health, contraceptive awareness, and the fight against stigma. She shares her story.
“On the evening of December 30, 2020, I finally broke free online about my HIV status. It was a momentous declaration, one that I had taken weeks to prepare for. Before that, I psyched myself up, did some quality videos, and even had a photoshoot. On Facebook, I teased the curiosity of my friends. In reflection, it was not merely a playful act but a subconscious creation of accountability partners. Having primed them, they would surely ask for the story.
At the time, I didn’t even have a massive following compared to the combined following of more than 50,000 that I have now. By then, I was also running my business and I felt the need to inspire people to get tested and know their HIV statuses. Being diagnosed at the age of 13 hit me like a tonne of bricks. The first thing that came to mind when the doctor revealed the diagnosis to me, in the company of my close relatives, was death.
In school, the images used to educate us about HIV and the haunting spectre of sickness had imprinted deep fear about the virus. I struggled to wrap my head around the fact that I’d be tethered to medications for the rest of my life. I also wondered how I would keep it all under wraps. In 2007, the year I was diagnosed, the disease was still saddled with stigma and extreme secrecy.
I lost my mother to the disease and it scared me that I would die. Before I spilled my story on social media, I took my time and consulted my dad, relatives, and anyone who might be directly affected. They all asked this question in many forms: ‘Are you sure?’ I was. At home, before I went online, my drugs were on full display.
On my social media platforms, I have encountered disheartening instances where some quarters tend to perpetuate judgement and bias about the disease.
When I come across such, I engage them, humanising my experience and of other patients. With most people, their opinions evolve. What I see is that some quarters lack knowledge or exposure to HIV and Aids.
Because of my work on social media and what I do with my organisation, I get to interact with different groups of people. Over the years, there’s been a persistent notion, albeit slowly dissipating, surrounding the physical appearance of someone living with HIV and Aids.
Even in the present, I still encounter individuals who express surprise, telling me that I don’t fit the stereotypical image they have in mind of someone with the disease. It’s a statement that takes various forms, from hushed whispers to more overt expressions. The perception that there’s a specific ‘look’ associated with the disease has long been debunked by medical science and first-hand experiences.
Yet, societal perceptions, often shaped by outdated information or persistent stigma, continue to cling to these misconceptions. When people tell me that I don’t ‘look’ like someone with HIV and Aids, I challenge their assumptions. The truth is, there is no singular appearance for someone living with the disease. Progressively, much has been done to sensitise people and the stigma is dissipating, although not at the pace that many of us with the condition hope for.
Because of the secrecy, there are still many cases of non-adherence that are tied to denial and individuals who don’t know of their status. Data from the US Centres for Disease Control and Prevention reveals that nearly 40 per cent of new HIV infections are transmitted by people who don’t know that they have the virus.
Of the questions frequently posed by my followers, inquiries about the HIV and Aids symptoms and PrEP (Pre-Exposure Prophylaxis), a dosage taken to prevent infection, take centre stage. Interestingly, I got the latter after the weekend. It’s an understandable concern, and I always open the conversation by acknowledging the significance of their curiosity.
However, my response is often a gentle nudge towards the crucial first step — getting tested. I also get many messages of encouragement and enquiries on navigating situations where a relative has not disclosed their HIV status. While it’s true that the disease is now more manageable than what I imagine my mother struggled with, it is still a great cause of concern and I enlighten people about other sexually transmitted infections that they may contract.
Taking lifelong treatment is not easy. When instructed by doctors to take medicine at a specific time, you must do that to ensure the efficacy of the medicine. Whenever I am travelling, I pack my drugs and keep a reminder of the same. In my video narratives, I try to provide a first-hand glimpse into the intricate experiences surrounding HIV.
I craft these visual stories with an intention to confront complacency and especially to those who trivialise the disease. There are other young people who would want to share their stories but are silenced by these perceptions. As a young woman who’s looking forward to motherhood, I hope to be part of Kenya’s story of ending HIV infection in children by 2027 and ending the Aids epidemic in the country by 2030.”
