Hansen’s disease and mental health

Hansen’s disease and its millenary history of fear and discrimination have consequences that extend far beyond physical impairment, commonly causing suffering, compromising social relations and the psychological well-being of those affected, and calling for multidisciplinary clinical management (1).

In the 1980s, during the implementation of multidrug therapy (MDT) for the treatment of Hansen’s disease, the first scientific articles were published highlighting the need for special attention to the mental health of persons affected by Hansen’s disease (2,3). Psychological changes are closely related to fear of physical suffering and disfigurement of the body, and to the social stigma related to Hansen’s disease. The latter can generate a process of social distancing and weakening of affective ties with family and friends, and reduce future opportunities for social networking (4). Moreover, it can severely restrict personal and occupational development and the ability to form relationships and have children. The diagnosis of Hansen’s disease often causes apprehension and anxiety in the patient and his or her relatives, as well as a feeling of powerlessness to cope with a contagious disease historically marked by stigma and exclusion. Thus, the diagnosis of the disease may represent an important risk factor for the onset of mental disorders in individuals with biological predisposition and the course of its clinical course may persist chronic stressors, contributing negatively to the recovery and maintenance of psychic well-being (5).

The very diagnosis of Hansen’s disease, as it occurs with other neglected tropical diseases in Brazil, can also mean for the individual the concreteness of abandonment and marginalization by public power and society (6).

Appropriate assessment of the mental status in the context of a person affected by Hansen’s disease is essential to identify his or her understanding of the disease and prospects for treatment, as well as his or her fears and expectations, taking into account the clinical stage the disease has reached and beyond the ways in which the disease has been developed and accepted. Psychiatric evaluation must be constant, in time with clinical follow-up, since comorbidity contributes to the reduction of self-confidence and, especially, of self-care, and may interfere in a deleterious way with the evolution of the disease (8). In addition, depressive and anxious states can further compromise the interactive capacity and social well-being of these individuals (9). However, the diagnosis and treatment of mental disorders are hampered by infrastructure barriers such as low availability and difficulty in accessing public mental health services and the appreciation of physical symptoms over psychological and behavioural symptoms (4). Thus, in Hansen’s disease and mental disorder comorbidities, the discrimination and stigmatisation that historically mark both are doubly condensed.

Common mental disorders are more prevalent in persons affected by Hansen’s disease than in the general population, having been identified in 41.9% (6) and 70.4% (7) of two clinical samples, being more frequent among female patients. Depression is the most frequently diagnosed mental disorder among persons affected by Hansen’s disease and is most prevalent when there is physical deformity, social isolation and inability to perform daily activities. Body dysmorphic disorder has also been observed among patients with greater disability and among those who have developed physical deformities (4). High rates of suicide attempts and suicide have also been reported (2,9). Symptoms of anxiety are present from the early clinical stages in view of the concerns and difficulties associated with the diagnosis of Hansen’s disease (10). Specific mood changes such as sadness, apathy, low self-esteem and negative self-image, as well as feelings of loneliness, are also frequent among people affected by Hansen’s disease. Self-harm may be associated with feelings of guilt, anguish or shame, and desires for self-punishment and escape from the everyday problems imposed by the disease (10). The lack of knowledge about Hansen’s disease among the general population produces a mistaken social conception of the disease, generating discriminatory actions that are the genesis of negative behaviours of reduced self-esteem, self-confidence, self-respect, cooperative capacity, the opportunity to get a job (8). All these factors are also amplified by the presence of physical deformities. (11)

Adverse effects of multidrug therapy (MDT) can also have a deleterious impact on the mental health of Hansen’s disease patients. Dapsone can promote neuropsychiatric manifestations such as psychosis, headache and fatigue (12). High-dose prednisone, used for a long time to treat Hansen’s disease reactions, can trigger mental disorders such as mood swings, with psychomotor agitation, irritability and insomnia and, in more severe cases, depression with psychotic symptoms. In addition, clofazimine causes changes in skin colour (4), which are recognised in many communities as indicators of treatment and therefore disease. Although such rust staining is temporary, it can cause fear and apprehension in patients, relatives and social contacts and can have a strong impact on self-esteem and social relationships.

A multidisciplinary approach to persons affected by Hansen’s disease, including mental health care, is essential to ensure early diagnosis, appropriate treatment and assisted psychosocial rehabilitation of persons affected by Hansen’s disease through comprehensive psychiatric care (8).

Some approaches have been adopted to alleviate the psychological suffering of people with Hansen’s disease. Among these, the promotion of therapeutic workshops (1) has proved effective in reducing depressive symptoms and improving the quality of life. Thus, the workshops sought to rescue the experience and autonomy of the patients, aiming at confronting the stigma, recovering the self-image and resignifying the life history. Pharmacological treatments using psychotropic drugs for anxiety and depression disorders can be prescribed and the clinical evolution, accompanied by trained professionals. Reconstructive surgical interventions (10) have been significantly effective in reducing the mental suffering and psychological stress of persons affected by Hansen’s disease with physical deformities installed. Such surgeries help to recover functional and aesthetic aspects, as well as reducing explicit indicators of the disease, reducing stigma and contributing to improved quality of life and self-esteem. Even so, post-surgical psychological follow-up is still essential to reduce insecurities and facilitate re-socialization.

Also from a mental health point of view, Hansen’s disease can be considered a neglected disease. There is still a long way to go to improve mental health care for people affected by Hansen’s disease in Brazil and the world.