Understanding Stigma - Listening to people living with Neglected Tropical Diseases (NTDs) in Nigeria
Stigma is a negative set of beliefs about a group of people with specific characteristics1. Stigmatising beliefs and associated behaviours stem from ignorance or a lack of awareness and fear, which in turn drive prejudice, discrimination and exclusion of people with those characteristics.
Social stigma creates barriers to participation in all areas of life and perpetuates cycles of poverty. It negatively impacts people’s quality of life and can prevent them from playing a full role in society, even undermining the effectiveness of targeted interventions if people are kept out of sight by their families or feel too fearful or ashamed to come forward and participate. This increases the likelihood of dependency on others, of having lower incomes, poorer health and achieving a lower level of education. There are over 1 billion people with disabilities in the world, often affected by considerable community stigma and resultant discrimination and exclusion. This is a huge waste of human potential as well as an abuse of people’s basic rights.
High levels of community stigma surround many neglected tropical diseases (NTDs), particularly those that are highly visible such as leprosy and lymphatic filariasis. These conditions, when left untreated, can result in disabling symptoms including nerve damage and paralysis, loss of fingers and toes, swelling due to lymphedema and other visible changes in skin condition such as lesions or thickened skin2.
In this paper we hear from people living with leprosy and lymphatic filariasis in Benue State, Nigeria. Their testimonies were gathered through focus group discussions and key informant interviews conducted as part of the Mind Skin Link project in Nigeria3. They disclose the harmful impacts that living with such highly visible and stigmatized conditions can have on all aspects of their lives and wellbeing. Their testimonies are hard to read, but are important to hear and reflect on, particularly for those of us working to improve inclusion in NTD services. Contributors to the paper make it clear that stigma reduction must be central to our efforts to support greater inclusion. The Mind Skin Link project listened and responded with a package of interventions to identify and address mental health, anti-stigma and wellbeing needs for people with visible skin NTDs.