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Experiencing leprosy - LEPRA Health in Action

Experiencing leprosy - LEPRA Health in Action

332 M. L. Heijnders

332 M. L. Heijnders Here, Charma Rog was believed to be a non-stigmatizing disease. On the contrary, in the explanatory model of Charma Rog people did not only use the Charma Rog out of defence, but they appeared to actually believe they had Charma Rog. This difference in the use of the word Charma Rog can be explained in several ways. Some people, as a way of managing the stigma, told the ‘story’ that they had Charma Rog. It could have been that some were very consistent in doing this and stated that they had Charma Rog during the interviews. Perhaps others might have begun believing it themselves. Their concealment behaviour would, in the case of Kustha Rog, be the normal reaction to the stigmatizing disease, and in the case of Charma Rog, a reaction to what they ‘had learned to do’, concealing the disease became a way of living with it. Another explanation for the use of the word Charma Rog can be found when comparing the number of the defaulters and the RFTs between the two types of explanatory models. It was found that half of the defaulters interviewed stated they had Charma Rog. This was in contrast with the RFTs of whom only ten people stated that they had Charma Rog. An explanation for this could be that the people who had discontinued their treatment and whose disease had not been cured yet, feared that it might continue to progress and that the stigmatizing reactions of others could still start and for those reasons denied having Kustha Rog. Denying Kustha Rog is thus related to feelings of insecurity and can thus be a strong contributing factor in non-adherence to treatment. Finally, an explanation for this difference in the use of the word Charma Rog could be that they really believed they did not suffer from Kustha Rog, as their symptoms were different. The different uses of the word Charma Rog may thus refer to differences in interpretation of the disease leprosy, which have consequences for how people cope with their disease and its treatment. PEOPLE ATTRIBUTED MULTIPLE CAUSES TO THEIR DISEASE AND SOUGHT HELP CONSEQUENTLY As leprosy and specifically Kustha Rog was not just a disease, but was perceived as a progressive, stigmatizing disease, many people, after they were told that they had leprosy, questioned themselves as to how and why they had contracted it. The perceived causes of leprosy formed another category of meaning. Most of the persons interviewed attributed multiple causes to their disease. The different causes mentioned by the interviewees show great similarity with the categories found by Hyland. 9 Some informants believed in a metaphysical cause. People believed their illness was God’s will and their fate. They believed they had committed a sin in their previous life and that this disease was their punishment. Another cause, closely related to the divine punishment, is the belief that this sin and therefore this disease are inherited by future generations. A few informants believed that the disease had been called upon them by a witch or wizard, or by a person who was jealous of them. In relation to metaphysical causes people went to a traditional healer. Many stated that leprosy was infectious and could be transmitted through jutho (a person’s food leftovers), using the same eating utensils, sexual intercourse, and being in proximity to the person affected. Another naturalistic cause was that people believed their disease could have originated from within the body, because their blood was perceived as damaged, bad, or impure. Weakness due to old age or hard work, and having many worries due to poverty were also cited as causes of leprosy. The naturalistic cause was most often mentioned in combination with the physical separation within the family and the social stigmatization of

Experiencing leprosy 333 persons affected by leprosy. People who believed that their disease was contaminating mostly stated that out of fear of transmission, others would ask them to stay away and would isolate them eventually. Remedies related to this cause were either treatment sought at the traditional healer, or at a medical practitioner. Only two persons suggested germs as the cause of their disease and both went to a private practitioner. The results of the analysis show that people do not have to believe in germs as causes for their disease in order to seek and continue medication at the health post. The majority believed in both a metaphysical and naturalistic cause and stated that they had faith that the medicines could cure them. MEANING OF MEDICATION AS A STRONG MOTIVATION TO ADHERE TO TREATMENT Leprosy medication was perceived as something very important and as a way of preventing their disease from becoming worse and visible. In addition, it was perceived as preventing (further) stigmatization. These interpretations of the leprosy medicines motivated people to continue treatment. Some experiences with their disease and its treatment reinforced this motivation. However, other experiences with their disease and its treatment influenced their intention to complete treatment negatively. A strong motivator to continue medication was their understanding of Kustha Rog. The interviewees believed the medicines could cure visible symptoms and especially wounds, or could prevent (further) development of those visible signs of the disease. This belief in the efficacy of the medicines was reinforced when they experienced a reduction in their symptoms. Another experience that strengthened people’s belief in the efficacy of the medicines was their observation that others had been released from treatment after their disease had been cured and this motivated them to continue treatment. However, other factors related to treatment could influence this intention to continue treatment in a negative way. Some people reported how after one year the quality of the services at the health post where they collected the medicines, declined and how after some time they ‘had no more patience and stopped taking the medicines’. Other people reported risks that were related to the medicines they had to take. The interviewees reported two such ‘risks’. One was the severe side-effects experienced. Most of these were regarded as problems they had to cope with. However, if the side-effects became more severe, some believed that the medicines, and thus the care delivered by the health post were unsatisfactory and reconsidered their decision to continue or not with treatment. The second ‘risk’ experienced was the risk of exposure. Many people tried to hide their disease. Visible symptoms, monthly visits to the health post, the blisterpack with the medicines, and for some their skin turning black due to clofazimine, were all things they wanted to hide and were seen as triggers that could lead to exposure and thus could endanger their social position within the community and family. AFTER EXPERIENCING SIDE-EFFECTS THE MAJORITY DO NOT SEEK HELP AND SOME DISCONTINUE TREATMENT Another category of meanings that influenced the way people dealt with their disease and their treatment were the side-effects experienced. Many people interviewed had experienced side-effects. For the majority, these were only minor and not so troublesome. These often

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