“They keep my cutlery and kitchen utensils separate from theirs, this is very upsetting for me, I feel like taking poison and dying.” This statement, shared by a man from India with lymphatic filariasis, exemplifies how he is being stigmatized by his family because of his disease. This is just one of many heartbreaking situations faced by people affected by a neglected tropical disease, or NTD.
Devex President and Editor-in-Chief Raj Kumar speaks to Ellen Agler, CEO of The END Fund, about how the coronavirus pandemic has impacted her organization's efforts to treat neglected tropical diseases.
A significant proportion of people with an NTD such as lymphatic filariasis, leprosy, or trachoma — to mention a few — develop poor mental well-being, depression, or anxiety. This is not a direct effect of the disease itself, but often a result of stigmatizing behavior from family members, neighbors, and even health workers.
Fortunately, we can take action to reduce stigma and discrimination. Recently, a group consisting of people personally affected by NTDs, researchers, NGO staff members, and mental health professionals joined hands and developed the Guides on Stigma and Mental Wellbeing. These guides are available with free access online. There are many reasons we should focus on stigma and discrimination.
Stigma is more harmful than disease
NTDs are a diverse group of infectious diseases that prevail in 149 countries, often in poor areas, and affect more than 1 billion people worldwide. This means that 1 in 8 people globally have an NTD. Many NTDs are not treated in time — or at all — and those affected may suffer from severe complications, visible impairments, and disabilities. Cultural and local beliefs, fears, and incorrect ideas about the diseases and their complications often lead to stigma and discrimination.
Many studies show that stigma is one of the most important aspects of NTDs to address, but it is often overlooked. Moreover, most people affected will argue that the stigma and discrimination is more harmful than the disease itself.
All aspects of a person’s life may be impacted, including relationships, social participation, opportunities for education and employment, social status, and mental well-being. These psychosocial consequences are often more difficult to conquer than the physical consequences — which is exactly why we should give them more attention.
What can we all do?
The Guides on Stigma and Mental Wellbeing share information on best practices and on how stigma manifests, how it can be reduced, and how to assess a person’s experience of it. These practical tools in the guides may help aid workers or global health practitioners recognize and counter stigma and discrimination in their personal or professional environments.
Here are five key ways to help reduce stigma and discrimination:
1. Listen, exchange, and reflect. Listening, talking, and reflecting are essential components of psychosocial support and family counseling and can help people become empowered to deal with the issues that arise from their condition. The purpose of listening is to give someone a safe space to tell their story and to acknowledge their feelings, beliefs, and thinking. Good listeners listen with their heart and mind, ears, and eyes.
2. Identify the sources of stigma and discrimination. When stigma and discrimination are detected, we need to identify where these are coming from. Quite often, sources of stigma are from those closest to us. While many people with NTDs receive love, care, and support from their loved ones, family members, friends, neighbors, and even health workers can also be sources of discrimination.
3. Promote participation. People affected by NTDs can provide key insights into what is needed to address their problems. Therefore, actively involving them in decision-making to improve their quality of life is vital. It creates ownership and empowers them to make interventions more successful. Make sure to avoid tokenism; this has an adverse effect and only fuels stigma and discrimination.
4. Reduce prejudice through contact. Programs working with different stigmatized diseases around the world have achieved good results when they facilitate direct contact between people holding negative attitudes or showing discriminatory behavior and those who are affected.
5. Create positive images. We need positive images of people with NTDs. The images of people affected by NTDs are often negative, which contributes to stigma. Media play an important role in framing people with NTDs and other health conditions, and journalists should receive training to ensure the use of nonstigmatizing language and images to portray people affected in a dignified manner. Additionally, opportunities can be provided for people affected to participate or exhibit their work in cultural, sports, or art festivals.
Stigma is one of the most important aspects to address with any health condition. Mental well-being is just as important as physical well-being — maybe even more so — but this is often overlooked. There are many practical tools out there, waiting to be used. In the end, this is not a public health issue, and maybe not even a human rights issue — it is a human dignity issue.
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