case report suffering beyond skin: experience of illness

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Cite this article: Vieira MP, Bernstein IJA (2018) Suffering Beyond Skin: Experience of Illness Experienced by Individuals in Treatment of leprosy, in Salvador, Bahia. JSM Clin Case Rep 6(5): 1161.

*Corresponding authorMartins P. Vieira, Department of Public Health, Static University of Santa Catarina, Brazil, Tel: (071)9912-9916; Email: [email protected]

Submitted: 09 October 2018

Accepted: 06 November 2018

Published: 12 November 2018

Copyright © 2018 Vieira et al.

ISSN: 2373-9819

OPEN ACCESS

Keywords•Leprosy•The disease experience•Narratives

Case Report

Suffering Beyond Skin: Experience of Illness Experienced by Individuals in Treatment of leprosy, in Salvador, BahiaMartins P. Vieira1* and Iriart JA. Bernstein2

1Department of Public Health, Static University of Santa Catarina, Brazil2Federal University of Bahia, Brazil

Abstract

Leprosy is a disease caused by Mycobacterium leprae and etiologic agent is transmitted from person to person through prolonged contact, and through patients in the form of multibacillary (lepromatous or borderline) without treatment. It remains a serious public health problem in Brazil, and in the northeast it is especially common. This study aims to understand how patients diagnosed with leprosy feel during the treatment in the city of Salvador, Bahia. From an anthropological perspective the objective of this study is to understand how patients felt during the diagnosis, changes in the body and the social impact of the disease in their lives. Eighteen narrative interviews were conducted with patients receiving treatment for leprosy in Salvador. The results highlight the social impact of the disease on people’s lives causing unemployment, family conflicts and exclusion. In some cases, changes in the body have implied identity transformations caused by the fact that the person is no longer able to recognize themselves. We also noted that the individuals themselves often feel a sense of guilt or the need to find out who is responsible sought for their contamination. Therefore, infected individuals clearly demonstrated a lack of support for social and 33 professional integration, which still exists today.

INTRODUCTIONLeprosy is a disease caused by the etiologic agent

Mycobacterium leprae. It is transmitted from person to person, through prolonged contact, and by patients in the multibacillary form (dimorph or virchowiana) without treatment. It is important to note that 90% of the world population has a natural defense against bacillus, even if they live or live with an infected individual. The evolution of the bacillus occurs slowly and chronically, taking approximately six months to five years to reach its fullness. Leprosy is transmitted through the upper airways, but we can also find the bacillus in ulcers, breast milk, urine and feces [1].

Penna et al., show that since 2009 the disease is a serious public health problem in some areas of the world. Cases of the disease have been reported in 141 countries, with 93% of them concentrated in 16 localities, mainly in Brazil and India [2].

Nardi et al., indicate that Brazil, since 2009, is the main responsible for the endemic in the Americas. In 2011, our country recorded 29,690 new cases of leprosy, with the northeastern region responsible for 12,575 cases 27 [3].

Despite these alarming records, one of the advances related to the disease in the country is that its treatment is available in basic

health units and in hospitals throughout the country. However, it is observed in the reports of people affected - in treatment and even cured, that experience in experiencing a patient with leprosy goes beyond the physical sequelae, generating many internal conflicts and difficulties of reintegration, whether in the family, social or professional environment. One of the problems directly associated with leprosy is social reintegration and redemption of self-esteem [4].

Baialardi [5], pointed out that some women, after discovering a positive diagnosis for the disease, were afraid to socially relate to each other, since this fact caused malaise among all, and most contacts involved in daily living consider the disease still as incurable.

Minuzzo [6], in a study carried out in the municipalities of Duque de Caxias, Niterói and Petrópolis, in the State of Rio de Janeiro, with men - patients who had the Multibacillary form of the disease, visualized the great social vulnerability narrated by them and indicated that the fear of discrimination still continues, having been pointed out by all the subjects participating in his research.

Silva points out that the individual in leprosy treatment, still today, is struggling to recover their affective bonds, to recover their self-esteem, to share their feelings and to relate.


Vieira et al. (2018)Email: [email protected]

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Silva et al. [7], affirm that it is necessary to observe the different senses given by the subjects affected by the disease, as well as how the experience of being a carrier of the disease can influence the lives of these people. The experience of being a carrier of leprosy has been considered a very relevant theme in socio-anthropological studies, since it allows to approach how individuals are situated in relation to the disease experienced by them.

According to Alves and Rabelo [8], responses to the problems created by the disease constitute socially and refer directly to a shared world of practices, beliefs and values.” Most studies on the experience of the disease, however, address chronic diseases, and few address the experience of patients with acute diseases and infectious, parasitic and epidemic diseases [9-11].

Theorizing about patient narratives (illness narratives), proposed the concept of “biographical rupture,” stating that chronic disease is a disease without cure, leading to a reconsideration of the biography and identity of the person . Through narratives, people seek to regain control over their lives [12].

Although leprosy is not properly considered a chronic disease, we consider that the concept of biographical rupture can be used to address the experience of patients with this disease. On the one hand, the diagnosis of leprosy has a huge impact on people’s lives; on the other hand, some patients may take years to obtain the correct diagnosis, in addition to presenting reactional outbreaks to the medication, becoming “chronic” for long periods. Other patients still have permanent sequelae left by the disease.

Leprosy causes major bodily changes: it is a disease that can cause cutaneous, nervous, otolaryngological, ophthalmological and systemic manifestations. Transformations are differentiated and may occur in any part of the body, such as: one or more spots, sensory disturbances, uneven spots on the surface of the skin, small lumps (papules or tubers), hair loss, decreased sweating and pains in the affected nerve trunks. Some of these injuries are caused by the low immune status of the body [13].

In addition to cases of cutaneous aggravation, there may also be complaints about the peripheral nerves (cubital, median, sciatic, popliteal and tibial). Severe consequences may also occur, such as: paralysis, amyotrophy, and deformities. In some cases, we observed eyebrows (madarose) and intense infiltration and accentuation of the natural furrows, which profoundly alter the face physiognomy (leonine facies). Frequent attacks of the nasal mucosa, followed by coryza, a stuffy nose (in some cases bleeding) and a fussy voice. If there is no treatment, nose deformity and septum perforation may occur [14].

Body injuries can also affect mouth, tongue, larynx and pharynx. The subjects affected by the Virchowian form usually present sudden worsening and appearance of new lesions, such as lumps - nodules - nodular hypodermis [15-17].

In the perspective of the social sciences, the body is socially constructed, in close connection with the biological. Being in the world is bodily and our experience of the world is built through the body [18].

The experience of the body with leprosy changes the subjects’

relationship with themselves and others. The individual affected by leprosy will probably have mild or severe body alterations and, nevertheless, 36 will have to use coping strategies to be able to follow their daily activities. The sick body presents limitations imposed on the subjects, destabilizing their routine and triggering changes, whether in the search for a normalization of life or other ways of being in the world with the disease and its restrictions. This study aimed to understand the experience of the disease in subjects diagnosed with leprosy, under treatment in the city of Salvador-Bahia.

From a socio-anthropological perspective, we sought to address how patients experienced the diagnosis, the changes in the body and the social impact of the disease in their lives. One of the limitations of disease experience studies, however, lies in the fact that they investigate very little the macro-social context and do not analyze the mediating categories between private experiences and the structural factors that affect them [19-21].

In order to transcend this limitation, we will seek to contextualize the patients’ narratives in light of the broader sociocultural context in which they are inserted.

Public policies for the control of leprosy in Brazil

At the onset of the illness in the country, and until the 1950s, subjects who presented with a skin problem that someone suggested was leprosy was automatically removed from family, conjugal and professional living. He was sent to a colony hospital, away from the cities and isolated, where he would remain until he died. Most of the time, this citizen could not receive visits from family or friends. There he would have to start a new life, without ever knowing what had really happened, of what “evil” he had been affected, and why, after all, he was locked up there.

It was not until the 1960s that the compulsory hospitalization of the subjects affected by leprosy in Brazil was abolished. This fact remained, however, for more than a decade without being respected in some Brazilian states. In the 1980s, the movement to reintegrate people affected by the disease took place: “The most important fact in the history of leprosy in Brazil was the mobilization and organization of patients to create their own fighting entity. Leprosy patients and people interested in the cause founded, on June 6, 1981, the Movement for the Reintegration of People Affected by Leprosy-Morhan”.

In the 1990s, the decentralization of services and the municipalization of hospitals occurred, with the proposal of the Unified Health System [22].

In 2007, a law was approved that sought to indemnify the subjects who were internally compulsory, but it was only from 2008 that these payments began to be made, after Provisional Measure 373, signed by President Luiz Inácio Lula da Silva, was transformed in Law 11, 520/2007, instituting a pension indemnification for the isolation.

The year 2013, there is still a great lack of information regarding the disease. Nowadays, the goal of policies to control leprosy in Brazil is to diagnose, treat and cure all cases before the onset of sequelae.

The Ministry of Health has been investing in actions to



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control the disease in a decentralized and (little) participatory manner. However, it is necessary that municipalities, states and society contribute with attention and care towards their patients. In some centers of reference in the treatment of the disease in the country, there is participation of multidisciplinary teams, such as the presence of psychologists and social workers, whose mission would be to soften the impact of the diagnosis and to help the individuals in general, however these practices constitute facts isolated.

Here in Salvador, where the research was carried out, we had a psychologist who worked as a volunteer in the dermatology outpatient clinic, while in the period of her masters research, she stayed in this city. However, most of the subjects under treatment in the country do not have free psychological support and are offered by services directly linked to the treatment of leprosy [23].

Explanations about medication use, prevention of physical disabilities, as well as behaviors that patients should follow, such as family involvement in the communicator examination, are usually guided by the nurse or the pharmacist. The monthly notification of these patients is made by the nursing team, and the medication delivery, by the pharmacy. It is difficult to see a physiotherapist in the primary care services or in the reference centers for the treatment of the disease in the country. The physicians are more appropriate in the clinical part, even though there are many patients to be seen for the rest of the day, and it is not restricted to only the serious cases that should attend the reference hospitals of the disease throughout the national territory. When these patients are cared for in basic care, in the Basic Units of Care of the Family Health, the time is even more restricted, since in these places are attended the most diverse clinical cases.

METHODOLOGYThis is a Qualitative Study with an anthropological perspective,

with narrative as a research technique for the construction of the experience of the disease. The subjects of the research were patients in leprosy treatment at HUPES (Professor Edgard Santos University Hospital) in Salvador.

For the selection of subjects, the following criteria were used: being over eighteen years of age, being on leprosy treatment, residing or being treated in Salvador / Bahia, having time to conduct the interviews, wanting to participate in the research and authorizing the publication of the testimony. All the interlocutors signed the informed consent term and all the cited names are fictitious [24].

Contact with the interviewees was carried out at the HUPES dermatology clinic, which is one of the reference points for the treatment of the disease in the city of Salvador [25]. The care for patients with dermatological problems, including those who are on leprosy treatment, occurs once a week in the afternoon shift.

The patients that seek this type of care come from several municipalities in the state of Bahia, and come from different social classes. The age range is also quite varied, and since leprosy is a contagious disease, patients with several members of their family sometimes appear to take contact (check if someone in the family

has been infected).

The treatment time of each individual varies from 6 months to 1 year, depending on the bacillary form that it presents. This will also depend on how the patient will react to the medication: reacting well, getting the treatment on time, showing adverse reactions to the medication, going to the clinic for a few years. Women are always advised not to become pregnant, since the medication causes poor fetal formation and the medication for this group of patients is only authorized by negative pregnancy test.

Production technique and data analysis

Narrative interviews were carried out with 18 patients, having as triggering questions: when did you find out that you were sick? How was your trajectory in the search for treatment? Has there been any change in your life after diagnosis? Has your family or work environment changed? Do people know about your treatment? Tell me about it. Do you have any stigma related to the disease? Have you suffered any discrimination with regard to the disease? Can you tell me a few facts about that? The interviews covered a number of topics, such as how long each individual took to find themselves ill, how long it took them to seek therapeutic help, and whether they noticed any different signs or symptoms in their body. We sought to know the individuals’ knowledge of the disease, as well as the knowledge of their relatives, co-workers, friends and spouses. If there was any significance attributed to the disease, its coping strategies and its current situation, after diagnosis and initiation of treatment.

For the analysis of data, we use narrative analysis that, according to Bury , allows us to analyze the ways in which lay people manage their illnesses in daily life. For this, we can count on three forms: contingent narratives, moral narratives and core narratives (central, at the core). We can differentiate them as follows: 1. In contingent narratives - subjects are concerned with the reactions of relatives and loved ones, seeking strategies to be used to mitigate the effects of the symptoms acquired by the disease, and analyze the practical and emotional consequences with which they will have to deal with in everyday life. 2. Moral narratives: they are related to the way in which the subjects take care of or justify themselves in front of the alterations of their body and they are questioned on the causes of the illness, if they were of genetic origin or by other events of the life, such as punishment or inappropriate behavior [26]. The “Core” Narratives are related to how the subjects construct their experience, using specific forms of language, such as: slang, symbolic connotation related to the disease, their particular way of referring to it.

Ethical considerations

This research was approved by the Research Ethics Committee of the ISC-UFBA (Institute of Public Health) and the Ethics Committee of HUPES.

PRESENTATION OF RESULTS AND DISCUSSION OF CASES

Brief description of the interlocutors

Name, Home, Age, Marital Status, Income, Education, Occupation:



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Melissa -Salvador- 55- Single- 1 to 2 minimum wages- Fundamental- Seamstress

Eva- Euclides da Cunha- 80- Single- Above 8 wages -Fundamental - home

Michelle- Salvador- 35 -Divorced- 1 to 2 minimum wages- Fundamental- domestic

Emerson - Camaçari -55 -separated -1 to 2 minimum wages- Fundamental -carpenter

Carlos Valença- 29 -Solteiro- Above 8 salaries- Superior- teacher

Ademar- Salvador- 60 -Casado- 1 to 2 minimum wages- Fundamental -

Gerson- Salvador- 59 -House- 1 to 2 minimum wages- Fundamental- retired

Eduardo- Entre Rios- 50-married- 1 to 2 minimum wages- Fundamental -pintor

Kleber -Salvador -75 -Casado -Over 8 salaries- Superior –auditor

Vitor- Itabuna- 25- Single- 1 to 2 minimum wages- Fundamental -aposentado

Arlete -Salvador- 40 -Solteira- 1 to 2 minimum wages- Fundamental-home

Renato -Salvador -27- Single- 1 to 2 minimum wages- Fundamental - motorist

Jussara- Lauro de Freitas -54 -solteira- 1 to 2 minimum wages- Fundamental - home

Felipe- Valença -28 -solteiro- 1 to 2 minimum wages -Fundamental -charger

Marcelo -Lauro de Freitas- 55- married- 1 to 2 minimum wages- Fundamental -driver

Rodrigo- crown island -49 -married- 5 to 8 minimum wages- Fundamental- Trader

Ana–Salvador- 50- divorced- 5 to 8 minimum wages- Pharmaceutical- superior

Andrea- Salvador- 36- widow -5 to 8 minimum wages- Nursing- technique

The subjects that participated in this research are both male and female. They are residents both in the city of Salvador and in some municipalities of the interior of the State, such as: Euclides da Cunha, Camaçari, Valença, Entre Rios, Itabuna, Lauro de Freitas and Ilha de Coroa.

They all treated the disease here in Salvador. The ages of these interlocutors varied between 25 and 80 years. Half identified themselves as single and the other half married, divorced, and only a widow.

Most of these subjects (12) have income between 1 and 2 minimum wages. Most of these interlocutors only attended elementary school.

The subjects’ entrance into the “world of disease”: moral narratives of fear and guilt

All subjects, after being diagnosed as having leprosy, experienced relevant changes in daily life, both personal and social issues.

This fact had an enormous impact on the lives of all the subjects interviewed. In his narratives, the search for attribution of meaning to illness, the construction of moral discourses Bury, which addresses the fear of stigma and discrimination, of its possible transmission to others, self-blame for having contracted the disease or the accusation of those responsible for their illness or delay in diagnosis [27].

Fear stands out in all interviews. Everyone was very afraid that someone would know they were sick: fear of the family knowing, fear of being abandoned by the spouse, fear of the neighbors turning away and fear that someone from work would find out and they would be automatically dismissed.

... I do not dare say I had leprosy .... For fear .... will they see me in the same way? I do not know ... so I’m afraid ... (Michelle, 35, retired, single)

... no, I never said details ... I’m just saying that I’m doing treatment ... but I never went into details, just for my family .... I’m afraid ... (Gerson, 59, married retired)

... if I say ... 90% of the laymen will think it is a highly contagious disease ... then ... that whole thing ... fear too ... I preferred to be silent ... (Kleber, 75 years old , married, tax auditor retired)

... but I do not tell anyone that I have this ... I’m afraid people are going to think that it catches on..ai I do not speak ... (Arlete, 40 years old, single, domestic - general services)

... There were some people I told ... other people did not ... if they ran close to me? (Jussara, 54 years old, single, from home)

The discovery of the diagnosis was also associated with the fear of infecting other people: when these subjects discovered their positive diagnosis for leprosy, they naturally tried to do a retrospective until when they observed physical changes in their body, as well as the discovery of living with someone who was sick . But they associated the discovery of the disease, above all, with the fear of having transmitted the bacillus to somebody, even in a period when they did not know that possibility and therefore had taken no precaution for prevention (social, family and professional contacts).

Ana experienced the discovery of the diagnosis with great regret and fear: as she worked in a pharmacy, she felt responsible and frightened at the possibility of having transmitted the bacillus to someone else. This made her herself want to get away from work; today he works with handicrafts.

The illness generates the need in the subjects to attribute meanings to the illness and to seek an intelligible explanation for their suffering. In their narratives, the moral discourse around guilt was very present, alternating self-blame or the search of guilty for the transmission of the disease. Dona Eva, for example, blamed the neighborhood where she lives, in a city in the interior, for being a “place with a lot of people infected and untreated.” She



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lives near an old leprosarium in a municipality near Salvador, and attributes to the former isolation hospital, already disabled, the transmission of the disease.

Already other interlocutors self-blame themselves for not avoiding situations of possible real or imaginary contagion, or even for not being able to arrive at the correct diagnosis more quickly. Felipe, for example, blamed himself for having had a relationship with an ex-girlfriend even though she had contracted leprosy. In the interview, he says he did not know if she had had the treatment. Carlos felt “guilty” for finding himself with low immunity against another disease (he was treated for lymphoma), which he said made him vulnerable to leprosy. Andrea, who is a health professional, blamed herself for not being able to identify the symptoms of the disease and confused her with other dermatoses, delaying the diagnosis.

The delay in arriving at the diagnosis (which in some cases took years of pilgrimage by the health services) has generated revolt, indignation and insecurity regarding health services. Patients residing in the interior blamed the health services of their municipalities for not having trained professionals to diagnose the disease quickly. They refused, after receiving the diagnosis in the capital, to follow treatment in their hometowns, because they felt insecure with the professionals of the cities of the interior. There was also a fear that the confidentiality of the diagnosis would not be guaranteed in their cities.

The transformation of life after diagnosis: the limitations to work

When asked about what changed in their lives after the diagnosis, many interviewees cited the relationship to the job and whether or not they had the conditions to do so. Although they were mostly active, they observed some bodily changes and limitations due to medication (swollen skin, joint pain, decreased muscle strength, nausea, weakness and the appearance of some sequels), with the majority of the interviewees stopped working. Some reported not having the same physical condition as before, feeling unable to perform some functions:

... it was the following, I worked, I always liked to work ... I gave my hard ... and had my resistance ... and after these treatments that I started to do, I do not know if it’s these pills that I’m taking ... the effects of it, something ... I know I can not stand to do anything more, nothing, nothing, nothing !!! (Felipe, single, 28 years old, porter)

... I could go out to work ... my life was another ... (Jussara, 54 years old, single, unemployed) ... I work as a painter ... but I could not work anymore, I was 3 years without working, he was very weak ... (Eduardo, 50 years old, married, painter)

Among women, only one interviewee was able to continue her work normally, because of the flexibility of her type of work and because she was autonomous. This occurred soon after diagnosis and adherence to treatment. Melissa worked as a seamstress and could make her schedules. When there was any picture of edema or joint pain, she could stop work, and then make up for lost time. Only her brothers knew about her treatment, which made it possible for her to remain secretive about her clients.

For Michelle and Arlete, more than physical limitations, it was the stigma that prevented them from continuing to work on their old jobs. They worked as housekeepers when they learned of the diagnosis, but a drastic and traumatic change occurred shortly after starting treatment. Michelle reports that she was dismissed from her job after her boss, who was a doctor, noticed skin rashes in her ears and was suspicious that she would have leprosy. His mistress asked her to leave work, and immediately get help for therapy. She reported that she could pick up her personal belongings from an employee in the building where she worked, preventing her from climbing to her workplace to say goodbye and pick up her belongings. Soon after this experience, the patient realized that she should keep her health information secret [28,29].

Arlete, also a former domestic maid, was instructed by her employer to stay away from work while on treatment. However, when the treatment was over, she gave up on remaining in the same job because she felt fragile with the situation and realized the fear that the mistress had to approach her. He looked for another job and at the time of the interview worked in a hotel. In his new job, he never commented that he had leprosy treatment, for fear of being fired as well.

The person with leprosy, even after treatment, is marked as a source of potential contagion, causing fear and defensive attitudes by other people:

... when I was going to have some water ... I would stay there: in that glass do not drink ... when you drink your water, you separate your glass! Separate your plate! That thing ... (Felipe, 28 years old, single, porter)

... one day I was drinking water in a glass and the next day the mistress already gave me water in a disposable cup .... I know it was the fear, right? (Eduardo, 50 years old, married, painter)

In the narratives of these subjects, our attention is drawn to the importance of work in the construction of the identity of men. When these subjects could not exercise their role of provider, they not only felt physically limited, frustrated, and unable to play their role in the family.

Carlos complains that he suffered insinuations at work, that he could seek support in government and retire, even though he was young and active in the profession. Interlocutors who carried out professions that demanded greater bodily effort, such as mason, carpenter, painter and porter, complained of the physical limitation presented shortly after the beginning of the medication. Another common factor was that they did not comment on being treated for leprosy for fear of losing their jobs.

Two others, who worked as drivers, were dismissed from their duties. One because he was stigmatized and changed occupation in the company, the other because he could no longer practice his profession due to edema and joint pain in his hands, as well as the limitations in performing simple abduction and adduction movements of the ants. ...

... we work with food, then someone who knows ... gets that concern .... but every time we use a plastic bag to put a loaf of bread, we have the glove ... we never get it with the direct hand, always with the glove, but the person who does not know



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imagines that it contaminates there ... (Rodrigo, 49 years old, married, merchant)

... at work I had a lot of trouble, I still have ... I did a job interview for a company, to be a driver, I took the test .... when my boss took my cap he asked what was this stain ... you know, everything started ... I’m a chamberlain today, but I also have some restrictions there ... I work in the city council ... people get kind of like that, sometimes they get something at the fingertips ... not to touch me ... I do not work in a cap, I work without a cap, so ... they look at me like that, sometimes I’m sitting and they look at me like that .... (Marcelo, 55 years old, married, driver-civil servant)

... something that caught my attention were employees who acquired leprosy to be able to request retirement ... but it’s in the law, for example, today I’m 29 years old, if I get there today and ask for my retirement application I can get it. (Carlos, teacher, 29 years old, single)

Vitor, just 25, who had previously worked with his uncle on various occasions at the home of decorations, completely lost his physical availability for work. He had gait gait, thumb claws on his hands, edema throughout his body, and often suffered from reactionary outbreaks. He reported that he had been hospitalized several times in Salvador, at the hospital where he was treated. Vitor, however, does not complain about having to perform the treatment and does not omit from his close relatives or friends his status as a leprosy patient. He always had a family member accompanying him on the trips to the clinic, and his only complaint was that he could not do any work. For him, all these problems were due to the delay in being diagnosed with the disease.

Physical sequelae, which may result from late diagnosis and even lack of disability prevention screening, have become a major concern of those treating these patients, and certainly of the individuals themselves.

Fuhr et al., conducted a review of the literature between the years 2002 and 2012 on the physical disabilities resulting from leprosy in the country. It was verified that the majority of the population relates disability directly to the disease, because when compared to other diseases, it is the one that causes greater disability in the patients. Early detection of leprosy is still the most effective way to prevent or reduce these deficiencies, and treatment is the most efficient way to avoid neuropathy. However, monitoring of muscle strength and sensitivity is a great ally in the prevention and recovery of daily life activities.

Peres, in a study carried out in Cascavel, Paraná, observed the functional capacity of some subjects with sequelae of leprosy to perform physical activity. He noticed that when these subjects were submitted to adequate training, they had improvement and a significant increase in rehabilitation, as well as in daily activities.

Barbosa et al., conducted a study characterizing the functional limitation and its limitations in daily life activities, experienced by interlocutors living in Sobral, Ceará. It became clear that there is a need for health services, either in basic care or in specialized centers, to create a scale of verification of the degree of disability installed in these individuals during treatment and

post-discharge. Continuing care, professionals should perform preventive tests and try to recover the physical disabilities, often resulting from silent neuritis.

The narratives carried out in the course of this study point to the importance of work in the life of these interlocutors, and the disabilities limit the subjects during and after treatment. It is necessary that these patients receive support so that their social and labor reintegration takes effect. However, as we can see, there are few possibilities to perform exercises for the recovery and prevention of these possible physical sequelae due to leprosy in basic health units or in reference centers for treatment of the disease. With nowhere to go to prevent physical disability, these individuals are practically at the mercy of not having any neural impairment attained. The physiotherapy services offered to SUS patients are not necessarily specific for leprosy treatment, even though there are few health professionals qualified to perform this function. Just as we have the need for specific training for physicians to be able to make diagnosis and basic treatment of leprosy, we also have the urgency to form multidisciplinary teams that attend to this fraction of the population that suffers in the most varied outpatient dermatology clinics throughout the country.

Marital and affective relationships after diagnosis

The diagnosis of leprosy can have a devastating impact on marital and family relationships. One of the interlocutors, Emerson, reported that the fear of contamination drove him away from his wife, who went on to avoid bodily contact.

He reports that prejudice started in the house when his daughter discovered that he was doing treatment of the disease. She said that whoever was affected by the bacillus would have no cure, and the treatment would have no end. When his wife learned that he was taking leprosy treatment, he became afraid of contracting the disease and began to avoid any physical contact with him:

My wife was frightened ... and I separated because she was like that with me, afraid, that’s no use for that relationship. She did not even touch me ... (Emerson, 55, separated, carpenter).

Already Carlos began to have problems with his girlfriend due to the loss of the sensibility in the distal members. He reported that he had difficulty sensing intercourse. That worried him a lot, but he did not try to hide his concerns, frustrations, and fear of being abandoned by her. The subject is very delicate, and Carlos did not want this part of the interview recorded. After the recorder was turned off, he expressed his anxiety and doubts about the prognosis, and the fear that the sequelae resulting from the disease would be irreversible.

The case of Carlos calls our attention, because the only support for couples existing in the basic health units and in the reference centers of the disease in the country, when one of the partners is diagnosed with leprosy, is the presence of a psychologist. Most of the time, this health professional attends voluntarily, because we hardly have a hired part of the team. The information can also be passed to the spouse by the nursing team, when there is a need to do the communicant exam, which is when the individual who is doing the treatment communicates to the family that everyone



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needs to do a bacilloscopy, biopsy or physical examination to detect whether or not they were infected. If all is well, they will be referred to the BCG vaccine as a prophylactic form.

Support networks

Support networks were important in coping with leprosy.

Several patients report moments of great anguish and loneliness. However, getting through this became more tolerant when done in the company of someone:

... I went into a depression, I did not have the support to go to the doctor, I just wanted to stay in the house ... here comes this person (neighbor) ... who did not exclude me, did not see me that way people spoke ... because I turned red, time that I could not stand walking ... and my nose was bleeding a lot ... so this person who gave me that strength ... (Michelle, 35, divorced, retired)

They are statements that reflect the importance that each of these subjects gave when revealing or not being treated for leprosy. They tell where and in whom they sought support without fear of discrimination.

Our attention is drawn to the lack of training of support groups for patients on leprosy treatment in the basic health units and in reference centers for specific diseases. Since there are groups to take care of the most diverse clinical diseases considered chronic, why is not there a specific one to care for people affected by leprosy? And when there are, why are not they spread and spread all over the country? These patients need guidance and guidance for their family members, all to try to reduce fear and prejudice, and not just focus on drug treatment.

The body with leprosy

The body with leprosy can undergo several transformations. There are moderate cases, in which the symptoms are more evident than the signs, which can often go unnoticed. There are, however, cases in which the signs are quite evident turning into body stigmas: claudicating gait, mobile or rigid claws, facial transformations, many rashes on the skin and reddish or hypochromic spots.

For Martins et al., the experiences of the disease experienced by individuals who have a physical limitation are constructed and legitimized by several meanings attributed by society or by the same social group. It is evident that such limiting indices go beyond the physical dimension, especially as they reach culturally constructed standards.

The corporal transformations were pointed out as a cause of great suffering for the people interviewed, especially those who stigmatize the body and denounce the disease immediately.

For Goffman, stigma was most often constructed and is directly associated with the “unusual” conditions that some subjects are forced to experience, such as: physical disfigurement, abominations and deformities of the body, inserted here as incapacities visible and limiting effects of leprosy.

Michelle reveals that physical change alone has already been a trauma: nodules in the ears, lower limb injuries, swollen body, stretch marks in the belly, hair loss, darkening of the skin, fatigue,

and limiting muscle strength.

Ana, in her testimony, reports that the spots that appeared on her body bothered her too much. They made her change her habits and her clothes and limit her social relations. She was relieved that she had not had a stain on her face, for if she had it so clearly she could not hide it, which would surely make her even more depressed.

Andrea reports that it was not easy to deal with the disease. It has spots on the lower limbs and experienced moments of isolation at work; the blemishes attracted attention, causing the hospital’s own colleagues to question what they were and whether they were being treated properly, as well as whether that would not be contagious.

The bodily transformations resulting from the illness cause a strangeness between the person and his body. Several interlocutors reported not being able to look in the mirror for not recognizing themselves in the projected image. The corporal transformation implies an identity transformation in which the person no longer recognizes itself as it was before the illness:

... my skin ... my ear got all swollen, it was huge ... the people were looking at my legs ... all stained ... so when I started to do the treatment ... yes yes, it was so much question ! ... I wanted more was to hide ... changed everything because I feel weight in my legs to this day ... I feel weakness, I am not that person anymore ... it is time that I feel a lot of pain in my body. .. I’m not that person anymore ... already 4 years old and there’s time that I have to have enough brains ... it seems that everything will come back ... (Jussara, 54, solt, unemployed)

The visible marks on the body provoke self-stigmatization in which patients report not being able to leave the house because they are not able to face the questions of the people, or to seek to hide their condition of patient. An interlocutor reported that it aroused the curiosity of the neighbors, who asked if she had the AIDS virus.

Another patient abdicated her love life out of shame. She could not undress in front of her boyfriend and began to isolate herself, opting to remain years without any affective relationship:

... I really enjoyed my tan ... and today, today my life, Maria, has changed! ... liked to sunbathe ... to go to the beach ... to have a husband ... not to be ashamed to show the body before the illness ... ... my feet sprouted all of lump ... In the ear they left and that was when it started to burst, my ear was all lumpy ...... everything changed after I discovered that I was sick ... your body changes and it arouses the curiosity of others. My hair fell ... the people thought that I was 52 aids ... because of the predinisona my body broke in the belly, my breast broke all ... (Michelle, 35 years old, retired, divorced).

The body with leprosy is no longer a silent body. For several respondents, it is a body that signals their presence through pain:

... these pains that I feel ... I did not feel these pains ... not very strong, I did not feel these pain ... never in my life I got to feel these pain .... nor at work, could dawn the day working ....... everything I do I start to feel pain in the body, if I do a little exercise .... when I came from la ca ... it was a torment I came from the lapa up here



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... I get tired, my legs start to hurt ... it starts to shake, the cold sweat starts from the body ... the pain is getting worse every time ... it starts at the knee, from the knee it goes to the leg ... from here to the next side ... here is giving those stitches, those things like that .... I do not know ... since the time that the treatment began I started with this ... and the difficulties increasing ... (Felipe, 28 years old, single, porter)

In an attempt to preserve themselves from stigma, people seek to hide their condition, choosing as an answer for those who ask about apparent signs of diseases that are not stigmatized.

... When they ask me I say it’s allergy. (Eva, 80 years old, retired, married) ... I say it’s high blood pressure, this and that ... many do not even think the problem is leprosy, that leprosy exists (Melissa, 55 years old, single, seamstress)

CONSIDERATIONS Through these narratives, we try to understand the

experience of the disease experienced by these individuals affected by leprosy. We can not fail to mention that late diagnosis is strongly related to suffering, stigma, physical limitation and apparent sequelae. Knowing of such frailties, the subjects, many 53 times, administered this search for help, going through several emotional states: as pain, depression and isolation.

Leprosy still marks the course of life for many people who have had the misfortune of being struck by a bacillus that slowly appropriates its body, destroying nerves and skin. It is of fundamental importance and relevance to mention the failures of the health system, which still needs to train its employees so that they can deal with the illness and with their patients in a way that can collaborate so that the stigma is diminished, not exacerbated.

Although in treatment, the individual can limit his prospects of prosperity in married, social, family and professional life. We must warn people at all times that leprosy has a cure, and that the treatment is outpatient. However, we emphasize the fact that in the unconscious of the majority of the population, especially in

the northeast region, there is the prejudiced image of the leper body. This symbolic and limiting condition of the body and the individual affected by the disease makes him lack the strength to run after his goals, remaining lost, disoriented, without often having to follow his life.

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Vieira MP, Bernstein IJA (2018) Suffering Beyond Skin: Experience of Illness Experienced by Individuals in Treatment of leprosy, in Salvador, Bahia. JSM Clin Case Rep 6(5): 1161.

Cite this article

https://www.ncbi.nlm.nih.gov/pubmed/22147024





http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-81452010000200003



case report suffering beyond skin: experience of illness

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