As two storytellers prepare to share experiences shaped by HIV and tuberculosis at Nairobi’s Mainstage, The Moth is challenging audiences to see the people behind the diagnoses and reconsider how Africa tells its public health stories.
A tuberculosis diagnosis can become the defining detail of a person’s life in the eyes of others. So can an HIV diagnosis. Yet for the people living through these experiences, illness is rarely the entirety of their identity.
There are relationships to preserve, dreams to pursue, families to build and decisions that extend far beyond hospital visits and medication.
It is this dimension of health that The Moth wants audiences to encounter when five storytellers take to the stage in Nairobi on November 7 under the theme Now or Never.
Two of the five stories involve infectious diseases, but the organisation is deliberate about not allowing the diagnoses to overshadow the people telling them.
One follows a woman’s desire for love and motherhood despite an HIV diagnosis. The other explores the relationship between a young man and his grandfather, with tuberculosis forming part of a wider story about tradition, family and finding a different path.
For Sarah Austin Jenness, The Moth’s Executive Producer, this distinction is central to how personal storytelling can change public understanding of health.
“The story that includes TB is really the story of a boy and his grandfather,” she explains, noting that tuberculosis is present in the account but is not its driving force.
Similarly, the story involving HIV follows a woman’s longing for love and motherhood rather than making her diagnosis the centre of her identity.
The approach challenges a familiar pattern in public health communication, where people are frequently introduced through the conditions they have, the treatment they receive or the statistics they contribute to.
While such information is essential to understanding disease burdens, it rarely captures what living with an illness means beyond the clinical setting.
For The Moth, the starting point is the individual, not the disease.
“Story first rather than issue first,” says Chloe Salmon, the organisation’s Editorial Director of Podcasts and Radio and one of the directors of the Nairobi show.
The distinction is particularly relevant in Africa, where HIV and tuberculosis remain major public health concerns, despite advances in diagnosis, treatment and prevention.
Health authorities have invested in awareness campaigns, testing programmes and treatment services. Yet stigma and misconceptions continue to shape how people experience these conditions and interact with healthcare systems.
Dr Michael Maina, a medical doctor at Kenyatta National Hospital and psychiatry resident at the University of Nairobi, says one of the greatest difficulties patients face after receiving a serious diagnosis is processing and accepting it.
For some, the diagnosis raises immediate questions about their future, relationships and how they will explain their condition to family members.
Although treatment may be available, the emotional consequences do not necessarily disappear with the start of medication.
Maina argues that healthcare professionals must recognise these experiences as part of patient care rather than treating diagnosis and treatment as purely medical processes.
He acknowledges that busy hospital departments can make it difficult for healthcare workers to give every patient sufficient time. However, he says even brief opportunities to listen and demonstrate empathy can make a difference.
The persistence of stigma, he adds, is partly rooted in the emotional associations people develop around certain illnesses.
Public health campaigns have also tended to concentrate on prevention and awareness, sometimes without giving people living with the conditions enough space to lead conversations about their own experiences.
“If they will come with them, do it, and actually lead them. That will create a sense of empathy,” Maina says, advocating for people with lived experiences to become more visible in health communication.
He recalls how stigma can affect patients seeking care at comprehensive HIV clinics, where the possibility of meeting someone they know may discourage them from attending.
Some may leave without receiving care and delay returning because of the fear of being recognised.
Such experiences reveal a gap between the availability of medical services and people’s ability to access them without fear of discrimination.
For Maina, health statistics cannot adequately capture the emotional period following a diagnosis, including the uncertainty patients experience as they consider how their condition may affect their families and relationships.
He believes healthcare professionals need to spend more time listening instead of allowing the pressure of busy facilities to overshadow the human needs of patients.
His perspective gives the storytelling initiative a broader public health dimension: improving health outcomes requires attention not only to treatment but also to the experiences that influence whether people seek and remain in care.
Breaking the single narrative around illness
The challenge of representing people beyond their diagnoses is also central to the work of Maureen Amakabane, a Senior Instructor at The Moth, who helps storytellers develop personal experiences into narratives that connect with wider audiences.
She argues that health stories have too often been told through a single perspective, leaving important dimensions of patients’ lives outside public conversations.
” Stereotypes come as a result of single narratives,” she says, explaining that hearing from people who have lived with HIV or supported someone through the condition can help challenge stigma.
For Amakabane, the value of personal storytelling lies in allowing people to explain how an experience changed their understanding of themselves and their relationship with the world.
Rather than concentrating exclusively on the medical condition, trainers work with storytellers to explore what happened, how they experienced it and how it shaped their outlook on health and life.
She says this approach can also expose information that conventional health narratives overlook, particularly around access to treatment, medical care and the implications these have for quality of life.
Her concern is that when public conversations rely on a narrow representation of illness, audiences risk understanding the diagnosis without understanding the person.
Authenticity, she insists, must remain with the storyteller.
“The storyteller is the one who guides us on what goes into the story as opposed to us telling them what you want to hear,” she says.
That principle is especially important when people are sharing experiences involving HIV status, medical histories and other sensitive information.
Chloe Salmon says storytellers are encouraged to determine what they feel comfortable revealing, including choosing not to disclose the identities of other people involved in their experiences.
A person should not feel compelled to share information simply because it might make a story more compelling.
For Salmon, allowing storytellers to retain control over their experiences is essential to creating an environment in which they can communicate honestly.
She believes personal narratives can also make audiences more receptive to conversations about health because the storyteller is not necessarily trying to persuade anyone of a particular position.
Instead, they are describing what happened to them and inviting others to understand their experience.
The distinction, she argues, can help audiences move away from viewing people through a single identity, such as being HIV-positive or having survived tuberculosis.
They begin to encounter individuals with different ambitions, relationships, personalities and experiences.
What health statistics leave out
The Moth’s approach raises a question for African health communication: how can health institutions balance the need for reliable data with the experiences of the people represented by that data?
Statistics remain essential for measuring disease burdens, tracking treatment progress and informing resource allocation. But they cannot independently explain why someone delays seeking care, fears visiting a particular clinic or struggles to accept a diagnosis.
Jenness says she has attended numerous global health conferences and meetings where scientists, researchers and policymakers present extensive data and reports, but personal experiences are less visible.
When personal stories are introduced, she believes they create opportunities for audiences to engage with health issues from a different perspective.
She points to The Moth’s experience with more than 1,000 graduates of its storytelling workshops, saying personal narratives built around dialogue, memory and emotional experience can help listeners understand circumstances beyond their own lives.
“Personal stories that include dialogue, sense memory, your own emotional journey, can help people walk for five or ten minutes in your shoes and see the world from a different perspective,” she says.
Jenness adds that she has witnessed stories change hearts and minds, influence policy and encourage people to engage with global health issues they might previously have considered distant from their own lives.
The organisation therefore sees storytelling as a way of bringing public health discussions closer to the communities and individuals at their centre.
Its Global Community Program has also worked with scientists and researchers who initially did not consider themselves to have personal stories worth sharing.
Through the workshops, Jenness says, participants have discovered ways to communicate their experiences and connect more meaningfully with colleagues and communities.
The implication for health institutions is that storytelling need not be limited to patients. Researchers, healthcare workers and policymakers also have experiences that can help audiences understand the realities behind their professional work.
However, storytelling should complement rather than replace scientific evidence. Personal experiences can illuminate barriers and consequences, but they cannot independently establish disease prevalence, treatment effectiveness or the success of a health intervention.
The opportunity lies in bringing the two forms of knowledge together.
The responsibility of telling other people’s stories
For journalists and health communicators, the conversations also raise questions about representation and whose experiences receive attention.
Amakabane encourages journalists to pay closer attention to what matters to storytellers rather than allowing established narratives or popular expectations to determine which experiences deserve attention.
She argues that a storyteller’s own account should guide how their experience is presented.
Salmon similarly emphasises the importance of allowing individuals to decide what they are comfortable sharing, particularly when stories involve medical information or other people whose privacy may be affected.
Josephine Macharia, producer of the 2026 Mainstage, makes a related appeal to journalists covering the event.
She says audiences should listen not only to the story presented on stage but also to the wider questions it raises.
These could include questions about stigma, access to healthcare or family responsibility, including what happens to children when a parent dies.
Macharia believes journalists should carry that curiosity into their reporting, looking beyond the immediate account to investigate the issues that remain unexplained.
“Lead with curiosity,” she advises.
Her observation is particularly relevant to the story of Mahmood Bangura, a Sierra Leonean social scientist and educator who became guardian to his niece following a death in his family.
His experience raises questions about family responsibility, children’s welfare and the informal support systems that emerge when parental care is disrupted.
Although it is not an infectious disease story, it reinforces the Mainstage’s wider interest in experiences that reveal the social realities behind issues often discussed in broader policy terms.
For journalists, the challenge is to recognise these connections without forcing every personal experience into a predetermined public health narrative.
Taking African health stories beyond the stage
The question of what happens after the stories are told remains important, particularly for an organisation seeking to build a global storytelling community.
Nairobi has become an important location for The Moth’s Mainstage, partly because of its accessibility to storytellers from different countries in the region.
Macharia says the choice is not based on Nairobi being more important than other African cities, but on the relative ease with which participants from neighbouring countries can travel there.
This year’s programme brings together storytellers from Kenya, Uganda, Nigeria and Sierra Leone.
Beyond the November 7 performance at the Catholic University of Eastern Africa, The Moth is also exploring opportunities to expand storytelling platforms in Nairobi through open-mic events.
Salmon says the organisation wants people to have opportunities to share experiences outside the formal Mainstage setting, including through its Global Community Program and its story-submission channels.
She also hopes audiences will carry the experience into their own communities by becoming more willing to share stories and listen to experiences they might otherwise overlook.
The organisation’s international reach offers another opportunity to amplify African narratives.
Jenness says The Moth is developing relationships with radio and television outlets to create more opportunities for storytellers to reach audiences beyond live performances.
She also points to support from the Gates Foundation, which has backed much of the organisation’s global work, particularly its commitment to stories concerning women and girls and maternal and child survival.
The organisation hopes that continued support from foundations, companies and other partners will help elevate personal experiences that contribute to conversations around reducing maternal and child deaths.
Yet the broader challenge remains how to ensure that these stories translate into sustained public engagement rather than ending when the performance is over.
For African health systems, the opportunity is to recognise that patients are not merely recipients of medical services or numbers in national reports. Their experiences can help identify gaps in communication, access to care and the social support needed to improve their quality of life.
For journalists, it means looking beyond the diagnosis to understand the person, the circumstances surrounding their experience and the institutions that shape their choices.
And for audiences, it means reconsidering the assumptions they carry about people living with infectious diseases.
When the five storytellers take the stage on November 7, HIV and tuberculosis will form part of two accounts, but neither condition will define the individuals telling them.
That distinction may be the most important lesson from The Moth’s approach to health storytelling: a person can live with a disease without their entire life becoming a story about that disease.
