Double stigma in mental health: epilepsy and mental illness

Abstract

Background Epilepsy and mental illness share similar problems in terms of stigma, as a result of centuries of superstition, ignorance and misbeliefs. Stigma leads not only to discrimination and civil and human rights violations but also to poor access to healthcare and non-adherence or decreased adherence to treatment, ultimately increasing morbidity and mortality. Despite continuous efforts in fighting stigma in these conditions, there is very limited knowledge on the phenomenon of double stigma, meaning the impact of having two stigmatised conditions at the same time. Aims To discuss double stigma in mental health with special reference to epilepsy. Method Articles were identified through searches in PubMed up to 31 October 2019 using the search terms ‘epilepsy’, ‘psychiatric disorders’, ‘stigma’ and additional material was identified from the authors’ own files and from chosen bibliographies. Results Double stigma is gaining attention for other stigmatised medical conditions, such as HIV, however, the literature on epilepsy is almost non-existent and this is quite astonishing given that one in three people with epilepsy have a lifetime diagnosis of a psychiatric condition. Felt (perceived) stigma and psychiatric disorders, particularly depression, create a vicious circle in epilepsy maintaining both, as depression correlates with stigma and vice versa as well as epilepsy and depression serving as bidirectional risk factors. This phenomenon has no geographical and economic boundaries as similar data have been reported for low-income and high-income countries. Conclusions Governments and policymakers as well as health services, patients’ organisations, families and the general public need to be aware of the phenomenon of double stigma in order to develop campaigns and interventions tailored for these patients.

People with epilepsy still feel stigmatized

“…Although three quarters of our cohort claimed to be in good health, about 60% stated that they had experienced symptoms of depression. It should be noted that patients suffering from both epilepsy and a psychiatric condition may be subjected to double stigmatization 18 …”

“…It should be noted that patients suffering from both epilepsy and a psychiatric condition may be subjected to double stigmatization. 18 Some older studies have revealed that stigma is positively associated with impaired self-esteem, self-efficacy, sense of mastery, perceived helplessness, increased somatic symptomatology, increased rates of anxiety and depression, and reduced life satisfaction. [19][20][21] Baker et al 22 undertook a systematic review on this topic in North and South America, Europe, and Australia and found, from the 33 papers from 25 studies, that being married was associated with lower levels of experienced stigma.…”

Neuropsychiatric and Cognitive Comorbidities in Epilepsy

“…Epilepsy is still a highly stigmatized condition, leading to discrimination and marginalization. 11 The social limitations (eg, loss of driving privileges), the unpredictable nature of seizures, and the potential social embarrassment associated with them can lead to poor self-esteem, social withdrawal, isolation, and distress. At the same time, several biological factors contribute to the increased occurrence of psychiatric disorders.…”

Perceptions about mental healthcare for people with epilepsy in Africa

“…'Double stigma' is the impact of having two co-occurring stigmatized conditions within the same individual, such as epilepsy and mental illness. Ultimately this can result in reduced ability to access healthcare, discrimination, decreased adherence to treatment, poor health outcomes, and poor quality of life [7]. Increasingly, improving the mental health and quality of life of PWE is recognized as a treatment goal in its own right [8].…”