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Why we must talk about leprosy, stigma and mental health

March 30, 2017

This article was written by Paula Soares Brandão , a person affected by leprosy, a nurse, a MORHAN volunteer and a member of ILEP’s Panel of People Affected by Leprosy, and by Priscila Soares Santos Matos, a psychologist based in Brazil.

Leprosy is known as a “neglected disease”, but it is an under-reported public health problem in many countries.  Beyond the effects of the disease itself, people affected by leprosy still experience stigma, discrimination and many limitations imposed by society; they are often excluded and their human rights are violated.  Not only does this stigma and discrimination affect the mental health of people affected by leprosy, but it also limits the possibilities they have for overcoming the problem.

Stigma, leprosy and mental health

So what is stigma?  Stigma is a term of Greek origin that was related to bodily signs and disgrace. It has existed for centuries, and reflects a mix of stereotypes, incorrect beliefs, negative attitudes, prejudice and discrimination. People who experience stigma are seen as socially unacceptable by others and are devalued and publicly excluded.  In some cases when people become aware of being stigmatized, they accept the negative views and apply it to themselves. Low self-esteem and strong negative feelings – such as guilt, self-doubt, anguish, anger, fear and sadness can all result, impacting on their mental health.

Stigma can also greatly influence a person’s search for treatment and cause them to hide symptoms, for fear of becoming a social outcast. Over time and without treatment, the impairments caused by leprosy can be severe and permanent, leading to further discrimination and isolation.

The potential for people to experience severe depression due to stigma and discrimination is clear.  Depression can reinforce feelings of social exclusion, interfere with work and daily life, reduce social interaction and lead to further isolation and in severe cases can even push a person towards suicide.  Depression in people affected by leprosy is complex and multifaceted, both a consequence and a cause.  Indeed the depression may also lead to, or accentuate a lack of self-care which can worsen impairments.

The experience of depression in people affected by leprosy is not just an individual issue, but is linked to the social context: the ethical and moral values of the culture and society. It is important for health professionals and community members to realise the pervasive history and “meanings” of the disease for people.  Depression experienced by people affected by leprosy is clearly a complex issue, as there is no simple cause or solution. It is very different for people who have been institutionalized and isolated, both physically and emotionally, compared with those who are more recently diagnosed who may struggle with more acute depression and self-stigma compounded by public stigma. Whatever the cause of mental health problems amongst people affected, we need to talk about the link between leprosy and depression.

Whatever the cause of mental health problems amongst people affected, we need to talk about the link between leprosy and depression.

The way forward

There is a way forward in tackling stigma induced exclusion and mental health issues. For instance, the implementation of Community Based Rehabilitation strategies can contribute to inclusion, empower individuals, reduce discrimination and improve the depressive condition of people affected by leprosy, as they can understand, have their rights respected, and take care of themselves. Preparing health and community professionals to understand and support people with mental health concerns enables them to use their technical knowledge and positions of authority in positive ways.

If we don’t adequately recognize or appreciate the symptoms of mental illness, the effects can worsen over time. It is essential for service providers to support the independence and the “mental health self-care” of people affected by leprosy. This represents a tremendous challenge, but one which must be faced head on.

An important aspect of tackling these issues is through research.  There is very little research in this area of leprosy, stigma, mental health and depression.  We need to conduct research on how to effectively implement public policies that ensure the full exercise of human rights, especially access to health care and education, and reduce discrimination of those affected by leprosy.

People affected by leprosy who also have depression are very susceptible to public stigma. Overcoming leprosy therefore demands reflection and action by society in the face of intense discrimination and its consequences. WHO and ILEP are committed to a vision of “Zero Discrimination” against those affected by leprosy, but for this to happen, change needs to start now. Governments, civil society, health professionals and especially those affected by leprosy need to come together, think and act to build a world free from leprosy and discrimination.
Join the conversation using #LetsTalkLeprosy and help us achieve #ZeroDiscrimination

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