Three people share their real-life experience of having an NTD and how it can impact mental health.
Having a Neglected Tropical Disease (NTD) is a life-altering experience. Often, people lose mobility and experience disability due to their illness. In many places, people with NTDs are rejected, called names, or avoided due to stigma and fear. All these factors can cause a decline in a person’s mental health.
Unfortunately, mental health support is not always available for people experiencing NTDs. In many places, it doesn’t exist at all.
Francis, Emmanuel, and Decontree are from rural Liberia, where Effect Hope works with partners like the Ministry of Health to strengthen NTD case management, and have lived experiences with NTDs. They are also peer advocates, leading support groups for others impacted by NTDs where they live.
This paper documents their experiences with NTDs. It was published through REDRESS, a consortium partner of Effect Hope, with support from researchers Laura Dean, Hannah Berrian, and Rosalind McCollum from the Liverpool School of Tropical Medicine.
Francis, Emmanuel, and Decontree outline the challenges and stigma they encountered while navigating treatment for their NTDs, emphasizing how it impacted their mental health. They explain that in Liberia, NTDs are often called “embarrassments” and the depression that accompanies it is simply referred to as “feeling bad.”
“When we first started experiencing the signs and symptoms of our illnesses, we often did not tell anyone because of fears concerning stigma or judgement,” they write. “This is what led to us feeling distance between us and our communities and families.”
Initially, all three went to faith healers for help, believing that their symptoms were caused by the supernatural. It is common for many people with NTDs to seek the help of traditional healers as a first course of action. It is widely thought, in many places, that these diseases are the result of curses or witchcraft. However, these treatments are generally ineffective.
Francis, Emmanuel, and Decontree eventually sought help at healthcare facilities. However, they still experienced anxiety. “When we went to the health centre we were often scared about what they would tell us and were fearful of starting treatment,” they write.
These fears can sometimes prevent people from seeking help. Although treatment places a person on the road to recovery, it can be full of unknowns and overwhelm.
“These fears can challenge mental well-being,” the three write. “Ensuring that there is support in place for people who need this treatment is really important to us.”
In this paper, Emmanuel, Francis and Decontee offer the following practical suggestions, based on their experience, to decrease stigma and increase mental health support for people impacted by NTDs in Liberia.
Include people with lived experience of NTDs in the healthcare system
Listening to the experiences of people impacted by NTDs could be a step toward change in healthcare systems.
“We believe that people with lived experience of NTDs could have a more formal role within the health system…enabling them to be a lived experience focal point in districts, counties and at national level.”
This could include inviting people impacted by NTDs to speak at conferences or other organizations to increase awareness.
If more people understood how NTDs affect mental health, it could help counteract stigmatizing beliefs that cause mental distress for those experiencing NTDs, especially when seeking treatment.
Build relationships by caring for practical needs
Many people with NTDs struggle with the disease alone with little access to support.
To counteract this, the three suggest that people with lived experience of NTDs could deliver supplies to people currently battling NTDs. Delivering items like soap, food, or gauze supports practical needs and may create opportunities to build relationships that offer hope to those struggling.
It is easier to speak candidly about mental health and refer people to the right help within trusting relationships. “We can provide psychosocial support talking together using the peer advocate training we have had and refer them to the clinic if needed,” they write.
Building relationships this way could help connect people experiencing NTDs with peer support groups. These groups are led by peer advocates like Francis, Emmanuel, and Decontee who have lived experience with NTDs. Before leading a group, all leaders undergo specialized training focused on how to effectively support the mental health of people affected by NTDs.
Peer support groups foster connection, which bolsters mental health. “Within peer support groups people can share their stories; we also share jokes and this encourages us to stay together.,”
In addition, these groups often facilitate teaching new skills like hairdressing or tailoring to help members regain financial independence, especially if they have lost their source of income due to illness.
Break stigma through conversation
Many people struggle with NTDs in silence due to shame or stigma.
“The same secret we were keeping, they are keeping it, too,” the three write. “So, if an affected person can go into the community and talk to them, maybe some people will come out with the sickness.”
If more people with NTDs are equipped to have conversations about these diseases, it could help counteract stigma and misconceptions. It could also educate by teaching people where NTDs come from and change beliefs that they come from curses or witchcraft. This also might increase chances that the person will seek treatment.
Looking ahead with hope
Emmanuel, Francis, and Decontree emphasize that hope helps reduce sadness. When more people affected by NTDs share their stories, it gives others hope and vision for their future. It might even inspire more people to become peer advocates who can uplift more people impacted by NTDs and support their mental health.
Many people who have NTDs feel like there is no hope because they cannot see a way forward. Hearing stories of others who have been through NTDs and emerged on the other side with a thriving life can revive hope. It is a living example for others with NTDs of what is possible.
Your donations help us work with partners to implement important mental health interventions for people with NTDs. This includes training peer mentors like Francis, Emmanuel and Decontree so more people can access support groups.
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