Box 15 Dimensions of stigma

Concealability

The extent to which the condition becomes obvious or can be hidden from others.

Course of the mark

The way the condition changes over time and its ultimate outcome.

Disruptiveness

The degree of strain and difficulty stigma adds to interpersonal relationships.

Aesthetics

How much the attribute makes the character repellant or upsetting to others.

Origin

Who was responsible for the acquired stigmatizing condition and how.

Peril

Perceived dangers, both real and symbolic, of the stigmatizing condition to others.

who are stigmatized have high exposure to health risks and low access to protective factors and treatment.

Sometimes coping with stigma surrounding the disorder is more difficult than living with any limitations imposed by the disorder itself. Stigmatized individuals are often rejected by neighbours and the community, and as a result suffer loneliness and depression. The psychological effect of stigma is a general feeling of unease or of "not fitting in", loss of confidence, increasing self-doubt leading to depreciated self-esteem, and a general alienation from the society. Moreover, stigmati-zation is frequently irreversible so that, even when the behaviour or physical attributes disappear, individuals continue to be stigmatized by others and by their own self-perception.

People with some neurological disorders (e.g. epilepsy) and their families may also be subjected to other forms of social sanction, such as being excluded from community activities or from societal opportunities such as education or work. One of the most damaging results of stig-matization is that affected individuals or those responsible for their care may not seek treatment, hoping to avoid the negative social consequences of diagnosis. This leads in turn to delayed or lost opportunities for treatment and recovery. Underreporting of stigmatizing conditions can also reduce efforts to develop appropriate strategies for their prevention and treatment.

Epilepsy carries a particularly severe stigma because of misconceptions, myths and stereotypes related to the illness. In some communities, children who do not receive treatment for this disorder are removed from school. Lacking basic education, they may not be able to support themselves as adults. In some African countries, people believe that saliva can spread epilepsy or that the "epileptic spirit" can be transferred to anyone who witnesses a seizure. These misconceptions cause people to retreat in fear from someone having a seizure, leaving that person unprotected from open fires and other dangers they might encounter in cramped living conditions. Recent research has shown that the stigma people with epilepsy feel contributes to increased rates of psychopathology, fewer social interactions, reduced social capital, and lower quality of life in both developed and developing countries (22).

Efforts are needed to reduce stigma but, more importantly, to tackle the discriminatory attitudes and prejudicial behaviour that give rise to it. Fighting stigma and discrimination requires a multilevel approach involving education of health professionals and public information campaigns to educate and inform the community about neurological disorders in order to avoid common myths and promote positive attitudes. Methods to reduce stigma related to epilepsy in an African community by a parallel operation of public education and comprehensive treatment programmes successfully changed attitudes: traditional beliefs about epilepsy were weakened, fears were diminished, and community acceptance of people with epilepsy increased (24).

The provision of services in the community and the implementation of legislation to protect the rights of the patients are also important issues. Legislation represents an important means of dealing with the problems and challenges caused by stigmatization. Governments can reinforce efforts with laws that protect people with brain disorders and their families from abusive practices and prevent discrimination in education, employment, housing and other opportunities. Legislation can help, but ample evidence exists to show that this alone is not enough.

The emphasis on the issue of prejudice and discrimination also links to another concept where the need is to focus less on the person who is stigmatized and more on those who do the stigmatizing. The role of the media in perpetrating misconceptions also needs to be taken into account. Stigmatization and rejection can be reduced by providing factual information on the causes and treatment of brain disorder; by talking openly and respectfully about the disorder and its effects; and by providing and protecting access to appropriate health care.

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