Stigmas Around Leprosy in Nepal

by Niharika Khanal

Assistant National Public Health OfficerSCOPHNepal Medical Students’ Society

In the Nepalese dialect, the disease Leprosy is known as "Khusta Rog". "Rog" simply means disease and the main term "Khusta" attributes to the flexed nature of the hands and feet. It is woeful, that a disease that has been eradicated from most parts of the world is still an endemic in Nepal. Therefore, a lot of research has been carried out on the disease in Nepal. The researchers that have been done are diverse and a lot of them are around the preexisting stigma that is associated with leprosy. The majority of people in Nepal follow Hinduism and like most people of belief, have their own set of superstitious sentiments. There are a number of conditions that the Hindus of Nepal, like to impute to being cursed by God. Leprosy is one of such condition. It used to be, and in some parts still is, believed that the disease was acquired because the individual had dishonored God in some way and they would perish due to the disease unless they atoned their deeds and managed to receive God's benediction.

The main reason leprosy falls under the category of "cursed" diseases, is believed to be due to the fact that the manifestation of the disease is grossly visible. The wounds and crippled hands tend to repel people. Different studies have shown that the main reason we are yet to eradicate the disease is due to the preexisting stigmas around it. Individuals with leprosy tend not to visit hospitals and try their best to hide their diagnosis. Therefore, in a struggle to conceal their condition they comply poorly to medications and the spread of the disease remains unhalted. Also, the sick generally resort to faith healer with the hope that they would help them connect to God and cure their disease. Also, there are a number of ayurvedic medication regime that claim to cure the disease. Due to these scenarios the sick does not receive the required doses of the MDT and succumb to this otherwise curable illness.

There have been projects run in Nepal that aims to uproot these believes and educate people about the true nature of the disease and the fact that it is curable. Fortunately, these efforts are showing positive results and such pejorative believes are gradually fading. There has been significant improvement in busting the myths surrounding leprosy especially in the urban areas of Nepal. In the rural areas, though the condition is still dire. The existing discrimination based on gender, caste and socio-economic status further fuels the stigma. If the sick individuals, are of the marginalized group they tend to be massively stigmatized. Those who do not fall into this category find ways to make the marginalized a wager for their illness, for example if a person of high caste acquires the disease, he/she will make claims that they got cursed by drinking water from the hands of a lower caste individual.

Even in the cities people still face difficulty continuing their jobs and keeping up with the same kind of life like they had before. People do not prefer to buy items from someone who has leprosy. They have difficulty getting married and being part of family events. Some of the apprehension is due to the fear of transmission of the disease but a lot of it is due to deep rooted false beliefs. There are claims of discrimination by family members and spouses as well. On the other hand, in most cases the family members are also subjected to discrimination. For example, a child of a person with leprosy has difficulty making friends in the community as the other children are advised by their parent, to avoid that particular child. Such circumstances push the patients to be mentally disturbed. Sadly, there aren't enough counselling facilities available at present for the sick and their families. It is indeed high time that we educate ourselves and our community regarding these health conditions. People with curable conditions should not suffer due to the fear of being ostracized by the society. The efforts to eradicate the diseased must be strengthened and implemented in every nook and corner of the country. Often a lot of these projects fail to reach the rural most parts of the country, as there is inequitable development in Nepal and there are certain places completely isolated with no proper communication and transportation facilities.