Leprosy is a disease caused by the bacillary microorganism Mycobacterium leprae. The organism has high infectivity but low virulence, therefore most humans are immune to clinical infection. However, through a combination of host, environmental, and pathogen factors, a few people do indeed develop leprosy.
Leprosy is, unlike most other contagious diseases, an illness which arouses not only fear of infection, but also horror and disgust – leading to aversion and social ostracism. This unique reaction is called the stigma of leprosy and includes:
- social rejection
- loss of employment
- failure to obtain proper housing
The stigma of leprosy may be defined as the loss or spoiling of the patient’s true identity as a person. In leprosy, this stigma remains unaffected by the great advances made in early diagnosis and treatment, with multi-drug treatment (MDT) and reconstructive surgery to restore normal appearance and function.
The diagnosis of leprosy can be made early enough to prevent any visible deformity or functional disability. However, concealment of early lesions until disfigurement occurs is the rule in many endemic regions. At this stage permanent disability has already become inevitable.
The image that most people have of leprosy as a condition which causes lifelong disability thus persists, and perpetuates the perceived need for hiding the diagnosis from others till it is too late to help completely.
Reasons and types of stigma
The stigma of leprosy has three distinct roots:
- the historical legacy of its being a curse or the result of sin
- the physical deformity and disability that result from the disease, such as leonine facies, loss of eyebrows and eyelashes which give away the fact that the individual had leprosy, loss of fingers or toes, and foot drop
- the leprosy ulcers have an unmistakable appearance and natural course
The stigma of leprosy was separated by van Brakel into public and self-stigma. The effects of public stigma are seen as:
- evading or avoiding the leprous individual
- maintaining a rigid distance, physical and social, between the leper and others in society
- feelings and expressions of deep repulsion at the deformity of leprosy
- absence of social support, in the shape of acceptance, employment, financial security, and social connection
The leprous patient develops a feeling of self-hatred and loathing, expressed as:
- low self-esteem
- lack of socialization, probably driven by the thought that others do not accept the knowledge of leprosy
- avoiding contact with loved ones directly or indirectly
The stigma of leprosy occurs over several stages. First, the way that society thinks of leprosy determines the emotional response to the knowledge that an individual is leprous.
A negative emotional and cognitive response to leprosy reflects in negative behavior towards the leprous patient, because of the latter’s loss of social value.
The outcome of this stigmatizing process takes the form of discrimination against leprosy patient, accompanied by loss of the prior place and value that they occupied and possessed in general society.
The stigma of leprosy has great and widespread consequences on both patient and family. First, it prevents the early diagnosis of leprosy as people who fear that they may have it simply avoid all opportunity to have the diagnosis confirmed, giving space for the development of disfiguring skin and nerve involvement
Fear breeds concealment, which prevents a lepromatous patient from coming for regular treatment, or from taking care of body parts which should be protected from trauma (for instance by wearing orthotic appliances). This in turn worsens the condition of that part and ensures the occurrence of permanent orthopedic sequelae.
The diagnosis of leprosy still dooms a person to instant exile from family and community. Wife, family, and friends alike dread and avoid the person even though he is no longer infective. This leads to deterioration of one’s social and personal health situation.
Public health programs are not made use of as fully as they might, because of the stigma of being associated with this diagnosis. Though good screening and chemo- or immune-prophylaxis programs are in place in many endemic nations, people do not utilize them simply out of reluctance to face the stigma. As a result their benefits do not reach all those they are intended for, and disease transmission continues through unreached disease reservoirs.
Social and economic inequalities not only are allowed to continue following a diagnosis of leprosy, but worsen at all strata of society, involving all interactions - with individuals, the family, the social institutions, and society as a whole.
Social importance of the condition
This data serves to underline the social importance of making a diagnosis of leprosy, which is not merely a medical condition but one which impacts the social quality of life. For example, in India (which harbors the largest number of leprosy patients in the world) socioeconomic ostracism correlates with low educational levels, backward class origins, and with the presence of disfigurement.
Religious rituals, selling food items, and employment were the categories in which the stigma was most keenly felt. Friendships between patients and others, including their children, were restricted by the disease. Also, it must be noted that both men and women were equally affected.
Treatment of leprosy is hampered by the reluctance of patients to even consider having this diagnosis made, or of undergoing treatment if this will let others know that one has leprosy. The wearing of orthotic footwear or attending a leprosy drug administration center are thus activities which leprous patients avoid in order to keep the knowledge of their condition from society at large.
On the other hand, plastic surgery to reconstruct eyebrows, restore a nasal bridge, treat foot drop, or heal ulcerations, will be welcomed if offered in a discreet setting. Thus the setting up of programs to control leprosy is handicapped by the need of leprosy patients to avoid their association with the condition.
Fighting the stigma of leprosy
In spite of the persistence of an intensely negative attitude towards leprosy, it is important to realize that vigorous educational efforts on a community basis do lead to perceptual changes over time. The community leaders need to be motivated through intensive and continuing exposure to the truth about leprosy, to do their part in getting rid of the pervasive shroud of horror surrounding the condition.
The greatest need of today in this field is to change these viewpoints and promote early diagnosis and treatment, which in turn are virtually guaranteed to prevent deformity and disability in affected individuals. This will go a long way in breaking the vicious cycle of stigma-concealment-lack of treatment-disfigurement and disability-stigma.
Moreover, well-paying jobs must be made freely available to all leprosy patients, so that they can build up their self-esteem and become financially independent. This will enable all those who are willing and able to gain access to skill development programs, and embolden them to take their place in society. This is called socioeconomic rehabilitation, and it will play a crucial role in changing the public attitude towards leprosy.
Reviewed by: Dr Tomislav Meštrović, MD, PhD