Lorna Howe and her colleagues found the people they interviewed - all diagnosed with the illness - had strived to avoid the label.
In all, the researchers conducted in-depth interviews lasting up to 90 minutes with seven participants diagnosed with schizophrenia. There were three men, four women (average age 44), and they'd been diagnosed between 6 and 17 years previously. They were currently under the care of an NHS community mental health team in England.
Howe's team transcribed the interviews and looked for interconnecting themes in the participants' testimonies - a process known as interpretative phenomenological analysis. The overall picture was of a dilemma, in which the participants needed the diagnosis to access treatment, but had feared and avoided it because of its stigma. "I was too scared to tell the doctors what my real symptoms were so they could treat me," said Carol.
Once they'd received a diagnosis of schizophrenia, the participants described how they attempted to hide it from other people. They mentioned the media's role in propagating the violence-schizophrenia link, and the way that mental health professionals used alternative terms, such as psychosis, as if they were conscious of the stigma associated with the s-word. "People are always afraid of saying that word to me," said Carol. "... because it is a dirty word."
The participants also spoke of the lack of understanding about schizophrenia, and the chasm between the perspectives of their clinicians who tended to see it as a biological illness (a "chemical imbalance") and the perspectives of other people in their lives. "My mother ... all she said was 'I told you, it's because you're psychic ...," said Janet. The biological emphasis from professionals was seen as limiting hope for recovery, and the researchers said this encouraged "individuals to become passive recipients of care."
Another theme was managing stigma. Janet said she avoids telling people about her diagnosis - "nobody likes rejection, so I just don't put myself in that position". Most of the participants saw themselves as "normal" despite their diagnosis. "... to have people treat me like that, you want to say, 'Look, I'm not that bad'," said Ben.
The final theme from the interviews was "accepting diagnosis" - the participants described how the label had given them access to treatment and an understanding of their problems. "It was like a relief in a way that at least they knew now what I already knew, that I'd got this schizophrenia," said David. There was one exception - Janet said she accepts that she has mental health problems, but she rejects the idea that she has schizophrenia.
Howe and her colleagues pointed to some useful lessons from their interviews. Untreated schizophrenia is associated with poorer outcomes, so the results suggest more needs to be done to overcome delays in treatment caused by ill people's fearful avoidance of a diagnosis. Clinicians' evasion of the term schizophrenia, and their focus on biological models, may spread confusion and undermine hope. "Professionals may need to take the lead and break their 'conspiracy of silence' surrounding schizophrenia to allow the public and those with a diagnosis to follow," said Howe and her colleagues.
Howe, L., Tickle, A., & Brown, I. (2014). 'Schizophrenia is a dirty word': service users' experiences of receiving a diagnosis of schizophrenia. Psychiatric Bulletin, 38 (4), 154-158 DOI: 10.1192/pb.bp.113.045179 [open access]
The August issue of Psychiatric Bulletin is a themed issue on stigma in mental health
Post written by Christian Jarrett (@psych_writer) for the BPS Research Digest.