Exercise 3: Effects of stigma
This exercise explores the effect of stigma on the mental wellbeing of people affected by NTDs, their families, community and society. See Annex Guide 1: Training exercises and tips for further details.
What is mental wellbeing and what are mental health conditions?
Wellbeing is when a person is able to live the life that they want to, fulfilling their idea of a good life, according to their own definition of success. It usually includes achieving social expectations and having fulfilling relationships with other people.
Mental wellbeing refers to when a person is emotionally in control, able to work productively, and cope with difficulties, which is called resilience: the ability to adapt to and bounce back from challenges and and stressful times (such as adversity, trauma, tragedy, threats and failure). Mental wellbeing is not just about an individual being able to keep functioning adequately; it also means bein part of a community and being able to access support networks available in the environment.
Mental health conditions can be described as ‘problems experienced by a person which affects their emotions, thoughts or behaviour, which is out of keeping with their cultural beliefs and personality, and [which] produces negative effects on their lives or the lives of their families’.
Mental health conditions occur in all societies and across people’s lifespan. Common mental conditions like depression and anxiety that are often a result of stressful environments or negative experiences are more common in people affected by NTDs.
What is the impact of discrimination on mental wellbeing?
Discrimination and prejudice can have many negative consequences on the people who experience them. They can restrict a person’s ability to participate in activities in their community or family. They can reduce a person’s chances for education and employment. In some cases, people who have to endure discrimination and prejudice have their basic human rights denied.
Each person experiences the impact of a health condition, and any associated stigma, differently. However, experience and observation show some common impacts stigma has on the lives of people.
Stigma, discrimination and prejudice have a negative impact on the mental wellbeing of a substantial portion of people affected by NTDs. People who have a chronic health condition are more at risk of developing mental health issues in their life course than people who don’t. It is estimated that one in two persons affected by NTDs will experience depression, anxiety and/or suicidal thoughts at some point in their lives. This is a much higher prevalence than in the general population and it can affect individuals deeply.
Those affected by health conditions marked by stigma and discrimination along with mental health issues might experience a multiple burden: one that is associated with the health condition (leprosy, lymphatic filariasis etc.); another that is associated with physical impairments, a third that is associated with mental health conditions; and a fourth that is associated with participation restrictions and social exclusion that may result from disability and / or stigma.
Why does mental wellbeing matter?
Mental health problems can be seen as a continuum from milder or temporary distress through to more significant conditions that can cause disability if they prevent people from participating in society as they would like to. Where someone is on this continuum depends on the duration, the severity of the symptoms, and how much they are restricted from being part of society or functioning how they would like to.
When they reach more severe stages, mental health conditions can result in low access to medical care, treatment compliance issues and increased limitations on activity and participation. In the context of NTDs, this is very important, as it means that someone with a stigmatised NTD and depression will struggle more to cope with life challenges than someone who does not have depression.
Mental health conditions can be disabling. They can affect a person’s mobility, for example if they can’t manage to leave the house; they can also affect a person’s ability to concentrate, study and work. They are often referred to as psychosocial disabilities. They are associated with a lack of educational opportunities and exclusion from income generation and employment opportunities. Given that NTDs are often prevalent among vulnerable populations, the combination of NTDs and mental health conditions might be life threatening. Mental health conditions can cause people to die early; because someone with a mental health condition may have limited access to care, may not follow medical treatment, or in severe cases, because they end their life by suicide.
People can recover from mental health conditions
With the right support, people can find solutions to their problems, strengthen their coping mechanisms and recover from mental health conditions. Most people with common mental health conditions are best supported by counselling therapies and community-based interventions to address the causes of their distress. In some more severe cases, medication is helpful, but it is unusual for inpatient treatment to be necessary. What matters most is to take a holistic, person-centred approach and consider the physical, mental and social needs of the person. It has been shown that psychological treatments, for instance, can be as effective a treatment as medication. See Guide 2 for further details on this.
Mental health care is not restricted to specialists, and there is now comprehensive evidence to show that basic mental health care from any health worker can have a substantial positive impact on people. In low- and middle-income countries, where NTDs are endemic, mental health care services are often not integrated into disease control programmes or are integrated in a very limited way; this is referred to as the treatment gap. To bridge this gap, global programmes recommend the training of the health workforce and of communities in providing basic mental health care services.
It is important to note that theories and tools in mental health have mainly been developed in high-income countries. Mental health conditions can be culture specific; for instance, eating disorders are mainly found in Europe and North America, and so are treatment tools such as counselling. Treatments should therefore seek to be as culturally sensitive as possible.
A young woman diagnosed with Hansen’s disease (another name for leprosy) in integrated leprosy services in northern Brazil, participated in a self-care group and overcame depression. In her words: ‘Because of what I've been through [referring to rejection by her own family]... Today I have overcome. I can say that I am already a victor for overcoming all these difficulties, the sadness, and the depression that I went through, and I am here today, and I say: “I'm very strong, […] today I feel happier, thank God I feel happier, before I could not look at myself in the mirror, today I can already look in the mirror, and see me...!”’
(Source: LRI Project 7061846, focus group discussion 8)