Insight as a Barrier to the Diagnosis and Treatment of Mental Illness

In this short post, I want to talk about how insight can be problematic for patients and clinicians. This topic tends not to receive as much attention as other topics relating to clinical practice in mental health.

I’ll be drawing on my experience of a second psychotic episode in 2022 as an illustrative example, which will require some preamble prior to the main argument. I have also written a first person account for Schizophrenia Bulletin that describes both episodes in further detail.

My first psychotic episode occurred in 2014. This episode was more straightforward from a diagnostic standpoint. I presented with paranoid, delusional beliefs about being on a reality TV show (following a brief period of a more straightforward threat to life delusion). In my interactions with clinicians, it was quite easily to establish my disconnection from reality from both my verbal reports of my ideas and views as well as my observably bizarre and disorganised behaviour. This type of presentation is not the focus of the present piece, but I offer it as a point of contrast against my 2022 episode.

In 2022, I was sectioned again following attendance at A&E. I had been aware that my mental state was deteriorating for several months. In late 2021, I asked the GP if I could restart an antipsychotic. This was followed by a series of consultations with a community psychiatrist, who concluded that I was not experiencing psychosis largely because I had asked to recommence medication. The thinking was that this behaviour was not typical of people with psychosis, a position that I understand in logic but disagreed with in practice. On that clinician’s advice, I discontinued the medication and began to deteriorate again throughout the first quarter of 2022. My ideas were of the same type as my first episode (persecutory, paranoid) but the content was qualitatively different. I wasn’t focused on surveillance, or the idea that my world wasn’t real but a staged TV event. Instead, I became much more fixated on my wife, believing her to be hurting our daughter in secret, poisoning my food and drink, moving my belongings as a form of abuse, and cutting my hair while I slept. These suspicions became firmly held beliefs, and I routinely attempted to discuss these ideas with my wife, rather unsuccessfully. Not because she was not receptive to my experiences, but because I never received the admission of guilt to which I felt entitled. My ideas became so concrete that I moved out of the family home and registered my concerns with social services via a MASH referral. , Thankfully, the social worker assigned to my complaint failed to treat me with any seriousness. My wife and I managed to resolve some of my concerns through relationship counselling, but the idea that I may be becoming unwell was obstructed by both the community psychiatrist’s assertion in 2021 that there was no psychosis and the fact that my beliefs focused specifically on my wife and our relationship.

The above situation changed when I returned to the family home and began to hear my neighbours conversing in their garden. I interpreted their words through a persecutory lens, namely due to ideas of reference (my main symptom when unwell). Convinced that they were talking loudly, about me, to make some sort of point, I confronted them directly. This resulted in a significant argument, and once it had ended I decided to call the first response line to explain my experiences and seek help. A few days later, I felt unable to tolerate the uncertainty of everything and took myself to A&E. My thinking at the time was that this was the best place to seek help. If I were unwell, this would be determined by the assessing clinicians, and if I wasn’t, perhaps social services could be alerted to my concerns by the assessing clinicians. Either way, I could find some support there. I was quickly sectioned, and this is the point where insight began to problematise my admission and inpatient spell.

Once I had received a professional opinion on my mental health, I was able to relax and resolve some of the difficult ambiguities in my thinking. I didn’t have to wrestle so much with questions of whether my wife was against me or not, whether she was tampering with my drinks or hurting our daughter. Someone had determined that I was experiencing psychosis, and I had been sectioned. I had been sectioned before, also for psychosis, and so on the balance of probabilities I could be somewhat assured that I was experiencing overvalued ideas or delusions and was at that time unable to trust my perceptions.

My mental state continued to deteriorate once I reached the inpatient unit. I confided in an advocate that I felt I would be treated differently because I had formerly worked for the Trust that was caring for me. I also mentioned my concerns about my daughter’s wellbeing. These were relayed to the psychiatrist and wider multidisciplinary team, and I went through periods of removing my wife from the next of kin record, reinstating her, and removing her again as my mental state changed. During my first ward round, I tried to explain my situation. My ability to somewhat recognise that psychosis was the more likely explanation for my experiences led my assessing clinicians to explain that people with psychosis do not typically say that they have psychosis, an observation I’m inclined to agree with. I nevertheless detected variations in my presentation, with delusional ideas becoming stronger at certain parts of the day and weaker after I’d had telephone conversations with my wife and mother in the evenings. In many of these conversations, I’d ask my mother to retain messages that I wanted to have publicised at my point of death, and so on. The fluctuating nature of this presentation and the presence of a degree of insight led my assessing clinicians to query psychosis, query my claim that I was experiencing delusions (which, again, is understandable as delusional people are by definition incapable of recognising their delusions as such), and explore other avenues of inquiry, such as revising my diagnosis from paranoid schizophrenia to complex post-traumatic stress disorder.

My clinicians also liaised with the community psychiatrist who was of the view that no psychosis was at play. They reported having ‘a different view’ from this psychiatrist, although it was never explained to me with what they disagreed or in what way.

Looking back, there were points during my second episode where I was unquestionably delusional. I was routinely certain that I would be brutally murdered once back out in the community (a theme present in the early days of my first episode), and recall feeling this way even while on leave with my family. I was so preoccupied with my impending death, and the view that it had been orchestrated by my wife, that I was unable to finish the meal we were eating in a local pub. I remember my stomach turning as I cut into a medium rare steak. Again, one would be justified in wondering how someone with such strong beliefs of such a nature could end up in the position of being granted leave, especially with someone who was so central to those ideas. This, again, speaks to the problem of insight that I’m trying to convey in this piece. Throughout the 2022 episode, I oscillated between frank psychosis and periods of significant insight. The treating clinicians, seeing me only once a week, rarely got an opportunity to observe these changes. And, because I had periods of such insight, I opted to hide in my room with the curtains drawn to avoid my periods of illness causing unwanted negative interactions with the nursing staff. This didn’t help things, as the staff were forced to report that I had not been engaging, further complicating the assessment and treatment process.

When I compare the two episodes, although the first was in many ways more traumatic and dramatic, the clinicians had a much clearer picture of my illness and mental state. During the second episode, it was anyone’s guess as to how unwell I was, whether I was indeed delusional or just fixated on overvalued ideas, and how much risk I posed to self and others. As the medication began to take effect, the process of listening to the idea that I was unwell became much easier and lasted for much longer periods.

In many ways I feel privileged to have experienced the kind of episode that I did in 2022. Not many people who develop delusional beliefs experience the opportunity to challenge them without medication, albeit in my case only briefly. It’s also hard to articulate how disorienting the experience was, as on the one hand I was making a concerted effort to engage with my family and enjoy our time on leave while also fundamentally distrusting my wife and worrying about our daughter - and of course my nearing murder.

My recommendation to clinicians reading this would be to look out for such presentations from individuals who have had multiple psychotic episodes, and to avoid interpreting this internal confusion as a sign of malingering or some other clinical picture, such as personality disorder. I am quite aware that psychiatric diagnosis is careful, precise, and difficult work. I am also aware that it depends on the quality of clinical observations, and I wonder if my treating clinicians would have benefited from more information on my record, drawn from more interaction with staff. I had less than a handful of interactions with the nursing team over a three week period inpatient spell. Had there been more, perhaps the clinicians would have been able to form a more coherent picture of my experiences. They did a fantastic job in the general absence of such information, based on a review of my notes.

I also think the junior doctors with whom I tried to interact could have made more of an effort to chat to patients. The junior doctors were often seen on the ward, pushing an ECG machine down a corridor or working on a laptop in the office, but even when one was sat nearest the office door he made no effort to get up and answer when I knocked. I also passed a note to the junior doctors with information about my performance on several psychometric tests, to see if that information could be useful. I’m not sure the note ever made it to the clinicians, as there is no record on the system of any notes being passed or any discussion of their content. I personally believe, when working on a diagnosis, that information about discrepancies in WAIS subscale scores (indicative of some neurodevelopmental issue) and perseveration errors on the Wisconsin Card Sorting Test could be clinically helpful, especially in the context of attempting to establish whether a patient has schizophrenia or complex post traumatic stress disorder. I was also referred for an autism assessment following a conversation with a clinical psychologist, which came back negative.

This is not to criticise the care I received in 2022. Although I had minimal staff contact, I was given access to a range of support not present in my 2014 spell. I was seen by a psychologist, consultant nurse prescriber, and pharmacist for starters. There were, however, and only in my opinion, gaps in observation that missed an opportunity to track the progression of my ideas and probe my risk profile. In my case, I am relatively passive in response to the belief that I’m going to die horribly. In my younger days, like in 2014, I would have resisted this idea more aggressively.