Objectives: To explore the range of meanings attached to the term ‘mental illness’ for those who have direct personal experience of mental health difficulties. Although mental health researchers and professionals struggle to define the concept of mental illness, the term is still widely used. While researchers engage in debate around these issues, which may lead to new concepts and approaches, our debate should be informed by the voice of those most affected.
Design: A qualitative design was employed, focusing on basic thematic analysis of written responses. This first phase of data collection and analysis forms part of an ongoing project involving further rounds of data collection and interviews.
Methods: A snowball sample of 24 participants, self identifying as having experienced mental health difficulties, was recruited using mostly social media and discussion boards. Google forms was used to present five specific questions relating to how the phrase ‘mental illness’ is perceived by self and others. The questions were open ended, and participants responded by typing.
Results: Personal definitions of mental illness related frequently to themes of: levels of functioning, negative consequences (including social isolation, and dehumanisation), defining by symptoms, aetiological definitions (including chemical imbalance), and definitions relating to normativity. Themes relating to diagnosis experience, public perceptions, and specific recommendations to mental health professionals were also explored.
Conclusions: Participants had varied and often strong responses to the language used around mental health difficulties. Awareness of themes identified has potential to improve interactions between support service users and staff, promoting well-being.