The thesis extract this month explores peoples' perception of public knowledge about agoraphobia and their experience of "coming out" to family, friends and others.
Public Perception of Agoraphobia
The study shows that research participants often struggled to understand their agoraphobia and were often unable to properly explain their mental illness to others. These research participants believed that the public was often ignorant and misinformed about agoraphobia and its effect on sufferers' lives. People argued that the public perception of agoraphobia was constructed by the mass media (e.g. television programmes) and publicised misinformation (e.g. dictionaries that incorrectly defined agoraphobia). Some people reported that family, friends and others either dismissed or minimised panic attacks as an unpleasant experience and ridiculed the individual's claims that it was a very distressing and disabling experience. Therefore, the public reaction to people with agoraphobia was directly influenced by the meanings attached to the mental illness by misinformation in the public domain.
In the study, research participants stated that they either feared, or had experienced, negative value judgements from family, friends, colleagues and others, due to negative attitudes towards mental illness. People reported being labelled as 'nuts' or 'crazy' and in some instances were 'joked about' by family, friends, colleagues and others. In some cases, the stigma and discrimination towards them made people feel that they no longer belonged among 'normals' in society. The stigma and
discrimination often forced these people to hide their mental illness from family, friends and others. When people made a public disclosure that they had an anxiety disorder it often led to social embarrassment which led to the avoidance of further public disclosure.
Hidden Agoraphobia
The Ph.D. makes an original contribution by showing that research participants' fear of the public disclosure of their mental illness and their fear of negative value judgements often forced them to hide their agoraphobia from others. In the study, people reported that they were fearful that public disclosure would lead to them being treated differently following the disclosure. In the study, people hid their agoraphobia from others by shifting the focus of attention from themselves to other family members' problems, putting on an 'act' to mask their agoraphobia by selection of public places/situations where they felt safe from having panic attacks. This strategy of non-disclosure and avoidance often led individuals to deliberately distance themselves from family members with resulting increased social isolation and alienation.
Making Excuses
The study shows that research participants often felt ashamed of having panic attacks, and feared negative value judgements and social embarrassment, and felt the need to protect their privacy by regularly making excuses to others to hide their agoraphobia. Therefore, people's self-interaction (e.g. feelings of shame and embarrassment) was interwoven with, and influenced their social interaction. In the study, people were shown to use lies and deception as a normalised part of their life as a form of social survival which they may not have otherwise developed during their life. People regularly made excuses to avoid doing things and to manipulate others into doing things that they could not do themselves, which enabled the individual to survive everyday life (e.g. supermarket shopping, paying bills, etc). However, people reported that the regular usage of lies and deception often damaged their self-image and feelings of self-worth. People often experienced an internal conflict between the desire to be a truthful individual while needing to be a dishonest person to socially survive.
In addition, people reported that the regular making of excuses and avoidance behaviour led to social distancing from others and that when family members and friends learnt about the lies and deception they often distanced themselves from the individual.
In summary, the study has shown that most research participants regularly made excuses to avoid places and situations where they fear having a panic attack. Also people lied to protect their privacy and to avoid the social stigma and discrimination associated with mental illness. However, research participants often suffered a crisis of conscience about their lying and deceiving of others. Arguably, these people would not have had to hide their agoraphobia if mental illness was more socially understood and accepted.
Coming Out about Agoraphobia
The Ph.D. study makes an original contribution to knowledge by showing that research participants often experienced the need to tell others that agoraphobia is a part of their identity and life experience, to gain acceptance and understanding from family and friends. The study has shown that people often struggled between telling the truth about themselves or hiding their mental illness to avoid negative value judgements and discrimination. These people were careful to tell others that they knew they could trust to be understanding and supportive, while continuing to hide the truth from strangers. Unfortunately, some people who did tell family, friends and others encountered ignorance, lack of understanding, and disbelief that they had panic attacks due to the lack of visible symptoms. People often felt uncomfortable and emotionally distressed when telling others, due to the fear of making a fool of themselves, being seen as a mentally unstable person and the possibility of social isolation and alienation from their families and friends. In some cases, people made a partial disclosure to others about having a mental illness by claiming to have claustrophobia, which is more readily accepted and understood by the general population. In addition, the person's claim of claustrophobia allowed them to escape the panic attack and feeling of entrapment in the public places/situations without the social stigmatisation attached to revealing to others a more serious mental illness (i.e. agoraphobia). In summary, the study has shown that research participants often struggled to come out about their mental illness due to the fear of negative reactions from others. Hopefully, as public awareness increases about agoraphobia and stigma and discrimination reduces to mental illness, people will be more willing and able to disclose their mental health disabilities.
By David Lemon (Note: The articles are extracts from an unpublished Ph.D. thesis")
Via the Agoraphobic Group ( Canterbury ) Christchurch , New Zealand
