2.4.1.1.1 Experiencing Confusion
A theme in nearly all participants’ narratives was the experience of confusion, often expressed in absolute or existential terms, as John describes:
John: I didn’t know what was happening… to me I found it almost impossible… to really exist… once I’d had the breakdown (p.2:10)
As John’s account suggests, these experiences of confusion typically coincided with acute episodes of illness, when mental illness had taken over participants’ lives and had left them feeling bewildered. Participants frequently described questioning their identity and even the boundaries of reality at such times, as Megan described:
Megan: so many thoughts bombarding each other and not really fully forming, voices, visual hallucinations, not knowing what was real and what wasn’t (p.12:26)
Such episodes were described by some participants as terrifying and highly
isolating. For these participants in particular being acutely unwell had been a very disturbing experience, with long-lasting effects.
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In addition to this general confusion almost all participants described confusing faith experiences and psychotic experiences, with the two seeming to ‘blur’ into each other. Again this occurred most often during acute psychotic episodes, as Helen describes:
Interviewer: we’ve talked about the, the kind of maybe the physical world, the area of mental illness, the spiritual area of life and would you draw lines between those experiences?
Helen: Um, normally I would, when I’m well I would, yeah, but I think it kind of, it gets a bit blurred when [I’m] unwell. (p.24:29)
Losing the ability to distinguish the spiritual from the psychotic often seemed to cause confusion beyond episodes of illness and sometimes left participants with unanswered questions for many years. This long-term confusion is apparent in Grace’s account of a confusion between faith and illness which began in her teenage years:
Grace: those, episodes, which to me were faith episodes, have then become confused into becoming a psychotic belief really… and yet that was
supposedly a faith experience because every time I heard God telling me to look up a verse I did it and to me that w- so then all of a sudden everything blurred and I didn’t know what was religio- uh religion until now, until last year – I didn’t know what was illness, (p.25:27)
This is a rich and insightful excerpt which deserves closer inspection. While Grace claims that her confusion about the boundary between faith and illness has recently
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been resolved, she does not sound convinced. Her hesitancy, the way she interrupts herself and her alternation between the past and present tenses all suggest that she remains unsure. Indeed she appears to be distracted by these issues as she speaks, suggesting that far from being resolved this uncertainty remains an ongoing source of anxiety for her, continuing to colour her experience of her faith and her psychosis.
For some participants this confusion was triggered or exacerbated by external factors, such as professionals, other Christians or the Bible, particularly when the guidance obtained from these sources seemed contradictory, as Megan found:
Megan: On the one hand I’ve got people from church telling me that the Bible is the ultimate word of God, which I still believe it is. But then you’ve also got the people that are meant to be in charge of you, the people that are well, the people looking after you, telling you something completely different and you’re not sure in your own head what’s real and what isn’t and then it’s confusing and then it almost makes you doubt your faith and then you start feeling guilty because you’re doubting things (p.14:6)
Megan’s description implies that the confusion she experienced between faith and illness related to a clash of cultures between Christianity and the mental health system. This cultural rift was implicitly apparent as a source of tension in most participants’ accounts.
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Another external factor which can be interpreted as causing confusion was the withholding of information by professionals. In particular participants described not being given their diagnosis and only finding it out later, sometimes by co- incidence.
Carol: I sort of leaned-over and saw what was written in the notes and it was actually on the back of the card that they, that they give you, that the nurse – you get weighed and it, it got written on the back “has had psychosis” or “this is a psychotic patient” type –that word was mentioned on, on a, on a card for all and sundry to see – and that’s when I suddenly realised that the episode in hospital with my son was, was, was called “psychosis”, and that was the first time that that word was mentioned. (p.12:8)
Carol’s account suggests a feeling of anger that such a momentous diagnosis had been withheld from her for some years and yet was readily shared between professionals.