Storytelling workshop
For decades, leprosy has been associated not only with physical suffering but also with stigma, discrimination, and deep psychological scars [1]. In communities where the disease is still present, people affected often face exclusion from education, work, and even family life [2]. For field practitioners, the challenge has always been clear: how do we move beyond clinical interventions to address the silent but devastating impact of stigma? One emerging answer lies in an ancient human practice: Storytelling. [Access the article]
Why storytelling matters in stigma reduction
Traditional public health approaches to neglected tropical diseases (NTDs) like leprosy have often focused on treatment and prevention [3]. While essential, these strategies overlook the psychosocial burdens carried by those affected [3]. Studies highlight that internalized stigma, shame, and isolation can be as disabling as the disease itself [2].
Storytelling, when facilitated in safe and participatory spaces, is proving to be a powerful contact intervention. It creates opportunities for individuals to voice their lived experiences, reclaim agency, and challenge societal misconceptions [4]. Instead of being defined by disease, people become visible as neighbors, artists, workers, and friends. As one participant of a recent project reflected: “For the first time, I felt seen.”
Acting workshop at Karachi beach
The Storytelling Game Changer Project in Pakistan
In 2024, a new initiative titled “Challenging stigma through engaging people affected by leprosy in innovative methods of storytelling” was launched in Pakistan, supported by International Federation of Anti-Leprosy Associations (ILEP) members including the German Leprosy and Tuberculosis Relief Association (GLRA), and led locally by the Marie Adelaide Leprosy Center (MALC) [5].
The project set out with ambitious but practical goals:
- Establish the first community-based group for people affected by leprosy in Pakistan.
- Create a safe community center for regular peer meetings and workshops.
- Train participants in diverse storytelling methods - film, photography, music, painting, dancing, acting and narrative writing.
- Produce and screen participatory videos and art pieces in communities, clinics, and with policymakers.
- Build long-term capacity by training participants as peer facilitators and trainers.
Dance workshop on a public bus
Over one year, 15-20 participants living with leprosy engaged in a cycle of training, creative production, and community outreach. Their personal testimonies were shaped into short films, songs, and art pieces, later screened in villages, schools, and even at national advocacy events [6].
How the approach works
The project followed a phased methodology.
Phase 1 began with a five-day kick-off workshop where participants explored different forms of storytelling. Monthly follow-up sessions then reinforced skills and provided a safe space for ongoing expression. This stage culminated in the creation of participatory videos documenting both challenges and successes.
Phase 2 focused on editing and screening these stories. Community screenings were held with subtitles for wider audiences, ensuring that healthcare workers, religious leaders, and local authorities could engage with the realities of stigma firsthand. Online platforms like YouTube and Facebook further extended the reach of the narratives.
For engagement practitioners, this process illustrates a key principle: the intervention itself is not the video or artwork, but the act of storytelling, the empowerment, connection, and healing that occur when people are trusted to tell their own truths.
Impact and lessons learned
The outcomes are encouraging. Baseline and endline assessments using validated tools show improvements in psychological health and reductions in internalized stigma. Beyond numbers, participants report increased self-confidence and stronger peer networks.
Community members who viewed the films often shifted from fear to empathy. Dialogue sessions following screenings created opportunities for questions, myth-busting, and renewed inclusion. For example, religious leaders in certain areas began to publicly advocate for compassion and support rather than avoidance.
The project also delivered concrete outputs:
- 15–20 trained storytellers with lived experience of leprosy.
- 15–20 participatory short films.
- A 35-minute documentary showcasing the process.
- A new community center acting as a hub for ongoing support and advocacy.
From local pilot to global potential
This work in Pakistan builds on similar efforts in India, Ethiopia, Nigeria, and Colombia. The approach has proven adaptable, low-cost, and culturally resonant. Simple tools like mobile phones make video production accessible and sustainable.
Globally, engagement practitioners can draw three main insights:
- Center lived experience. People affected by NTDs must be co-designers, not just participants.
- Prioritize safe spaces. A dedicated community hub fosters trust and continuity.
- Think beyond awareness. Storytelling is not just about educating others, it is about healing, empowering, and transforming identities.
Policy and advocacy implications
For storytelling interventions to move from pilot projects to systemic change, they must be embedded into national and global health strategies. Practitioners and donors alike should consider:
- Integration: Mental health and stigma reduction should be core components of NTD programs, not optional extras.
- Funding: Participatory approaches require modest but sustained investment.
- Monitoring: Using validated tools ensures that psychosocial outcomes are measured and valued.
- Scaling: Sharing best practices across countries can accelerate adoption and adaptation.
Toward a new narrative
At its heart, this project demonstrates that sharing is healing. By reclaiming their voices, people affected by leprosy in Pakistan are reshaping narratives, from exclusion and silence to resilience and visibility. For engagement practitioners, it is a reminder that sometimes the most powerful tools are not new technologies or costly campaigns, but simple, human acts of storytelling.
The challenge now is to sustain and scale these efforts, ensuring that the voices of those affected remain at the center of the journey toward zero leprosy.
References
- Somar P, Waltz MM, van Brakel WH. The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members - a systematic review. Glob Ment Health (Camb Engl). 2020;7. pmid:32742673
- Koschorke M, Al-Haboubi YH, Tseng P-C, Semrau M, Eaton J. Mental health, stigma, and neglected tropical diseases: A review and systematic mapping of the evidence. Front Trop Dis. 2022;3:808955.
- Fastenau A. Neglect of mental health issues and lack of integration of psychosocial interventions in Zero Leprosy Roadmaps: A critical oversight. PLOS Ment Health. 2024;1(4):e0000140. doi:10.1371/journal.pmen.0000140
- Vegt N, Visch V, Spooren W, van Rossum EFC, Evers AWM, van Boeijen A. Erasing stigmas through storytelling: why interactive storytelling environments could reduce health-related stigmas. Design Health (Abingdon). 2024;8(1):46–77. pmid:38746072
- Fastenau A, Brüggemann R, Ibrahim N, Salam A, Mckane L, Murtaza A, et al. Sharing is healing: The power of storytelling to transform mental health in the field of neglected tropical diseases. PLOS Ment Health. 2025;2(8):e0000400. doi:10.1371/journal.pmen.0000400.
- Peerzada S. Zero Leprosy highlights stories of struggle and success. Dawn [Internet]. 17 February 2025; Available from: https://www.dawn.com/news/1892446