I am proud to be a psychiatrist. Despite often feeling stigmatised by medical colleagues,
I have always derived a great sense of personal reward and satisfaction from my chosen
line of work. I believe psychiatrists are blessed to be in a position to assist people
at times of great personal distress and emotional turmoil, often when they are at
their most vulnerable. As psychiatrists, we are only too well aware of the stigma
and negative attitudes our patients face in society in general. There can be no doubt
that many of our patients with severe mental illnesses are marginalised to the fringes
of society, often leading their lives in depressing isolation. They are often ostracised
by others, who treat them with contempt. Our patients are often made to feel like
‘freaks’ by an intolerant and ignorant society. They are rejected as pariahs. To some
degree, these attitudes are borne out of a fear of the unknown (or at least, poorly
understood), and in the case of psychotic patients, a misperception that they are
a danger to society.
I am sure that all psychiatrists, like myself, try to have an understanding of how
this must feel for our patients and, in so doing, we strive to treat them with compassion,
empathy and humanity. I am also sure that the vast majority of us robustly back the
plethora of campaigns that aim to destigmatise mental illness in our society. But
what happens when you suddenly find yourself on the ‘other side of the fence’? This
is the scenario I have recently been faced with, and that has challenged my genuine
dedication to the anti-stigma cause. And so it is after a great deal of reflection
and soul searching that I have decided to ‘come out,’ and write this account of my
own experience of psychotic illness, and more specifically the stigma I experienced
along the way.
How it all began
Last year, I was suspended from work following an allegation of a rather disturbing
and sensitive nature (which was later proven to be completely baseless). Needless
to say, the entire episode was nothing short of traumatic. The experience was surreal
beyond imagination, not least because I had absolutely no clue as to exactly what
the allegation referred to. I was not (and still to this date have not) been provided
with any more information as to what, when, or where the alleged incident occurred.
Perhaps most people presented with a similar set of circumstances would find themselves
feeling equally bewildered and bemused. It seems to me, that if one does not have
any frame of reference around which to process such an event, an adverse impact on
one’s psychological well-being is inevitable. Alas, it was against this backdrop of
complete secrecy and a wall of silence, that, perhaps unsurprisingly, conspiracy theories
and paranoid ideas began to take over from rational thought. Before I knew it, I was
experiencing highly systematised, persecutory delusions, and was convinced that my
life was in grave danger. A precipitous descent into full-blown paranoid psychosis
ensued, which culminated in a hospital admission and treatment with antipsychotic
medication.
Is openness the right decision?
I have been advised by many people, not least family and close friends, all of whom
undoubtedly have my best interests at heart, to remain tight-lipped about both the
allegation and my ensuing illness. Perhaps my decision to speak out about my experiences
are at least partly driven by a desire to break free from these shackles of secrecy.
I feel that other people’s wishes to conceal this whole episode have served to compound
and perpetuate my own sense of shame and embarrassment as a result of experiencing
a psychotic illness. Perhaps this is a cathartic exercise of candour, designed to
enable me to feel liberated from the air of secrecy that has surrounded my illness?
Who knows....
Of course, I can understand where they’re coming from. I have no doubt that their
main concern is the effect that such openness will have on my future career. They
are certain that to openly admit to a psychotic illness would be ‘career suicide’,
and that I would never be considered for a senior job. After all, what department
would want to hire and work alongside a colleague whose mental stability is a source
of constant concern. Surely they would prefer someone dependable and resilient to
stress. Of course, I can completely understand this perspective - who would choose
to work alongside someone who may end up on protracted periods of sick leave? Who
would choose someone who might become paranoid towards them, might start to believe
they are being plotted against, or might start behaving bizarrely in some way when
at work? Surely it would be easier to simply avoid such potentially awkward situations,
and hire someone with a clean bill of mental health? I myself would certainly have
thought along these lines. And so did my treating psychiatrist: to some degree, at
least. Looking at his correspondence to my employing trust, he clearly attempted to
minimise the psychotic quality and severity of my illness, preferring to conceptualise
it as a ‘severe adjustment disorder in the context of extreme stress’. He also made
a point of explicitly stating that I did not have schizophrenia. There is no doubt
in my mind that his objective in euphemising my condition was as a damage limitation
exercise for my career prospects. In essence, it appears that many doctors (including
psychiatrists), expect or anticipate that there will be inevitable discrimination
against fellow medics who have had a mental illness.
The great leveller
The most difficult time I had to endure during my illness was when I was admitted
to a psychiatric unit. Fortunately, I was only admitted for 1 day, but short-lived
as it was, the impact it had on me will endure far in to the future. This was when
the truth really hit my between the eyes - I was now a bona-fide mental patient. I
have never felt such an acute sense of dismay and helplessness as I did at that precise
point. Here I was, the newest patient on a ward on which I used to work - it just
didn’t seem real. It was my worst nightmare realised. Upon reflection, this period
was also when the stigma of my illness came to the fore. Not only was I embarrassed
to be there, the staff with whom I used to work alongside appeared equally embarrassed
for me. The pity was written all over their faces. And I must confess that my own
prejudice towards mentally ill patients surfaced. Despite evidently needing acute
assessment and treatment, through my psychotic haze, I still felt I was for some reason
better than or at least different to the other patients on the unit. I felt the need
to distance myself (both physically and psychologically) from the other patients -
I needed to reassure myself that I was not one of them. But, alas, I was. I was no
better than or different to them - I was just as unwell, and just as human as the
rest of them. I was just as vulnerable and susceptible to mental illness as the rest
of them. I was just as breakable as they were. I was no longer this superior being,
the ‘doctor’ to their ‘patient,’ I was their equal. Despite the fact that I hated
every moment of my admission, it was a great leveller. Any airs and graces I had all
but disappeared in the course of that day.
Self-stigmatisation
In the immediate aftermath of my episode, I felt a sense of deep-seated shame and
guilt. I never thought that a life event, traumatic as it was, could have had such
an adverse impact on my mental well-being. I felt as if I had let down not only my
wife and my family, but also myself. Prior to my illness, I identified with myself
as a resilient individual who was able to deal with stress and adversity. However,
the illness, perhaps unsurprisingly, knocked my confidence, and with it, my self-belief.
I now viewed myself as a ‘weak-minded’ individual.
And so it is with the concept of ‘self-stigmatisation’, where the stigmatised individual
actually relates to others’ negative attitudes towards themselves and their illness.
If you yourself share the negativity you might endure, and view such attitudes as
‘understandable’, then where is the motivation to fight it? I experienced these feelings
until fairly recently following my psychotic illness, and almost felt that I didn’t
deserve to be treated the same as everyone else, or indeed, the same as my pre-psychotic
self. It’s strange how the stigma of mental illness affects one’s self-identity so
profoundly.
Another aspect of feelings of shame in the immediate aftermath of my illness, relates
to the behaviours and actions that were integral manifestations of my psychotic experience.
For example, at one point I confronted a neighbour because I believed they were spying
on me (in fact, I approached the police about this, such was the conviction of my
beliefs). Looking back on this incident now, I feel utterly mortified. My sense of
embarrassment regarding this particular incident is indescribable. And thus, rather
than approach this neighbour and explain that I was mentally unwell at the time, I
continue to choose to avoid them. Perhaps I still have some way to go to being at
ease and open with my illness after all. That’s stigma for you, I guess. I reflect
on this particular incident frequently, and wonder how patients must feel when they
have recovered from an acute episode of their illness, but can still recall embarrassing
behaviours. Consider those recovering from acute manic episodes in particular, many
of whose illnesses are highlighted by extreme, reckless, chaotic and disinhibited
behaviour. Their sense of humiliation must be profound, and must linger in their minds
long after their mania has subsided.
Stereotypes and prejudice
My family and friends must also be certain that people will judge me negatively, just
as they do my patients, and that I too, will be labelled a ‘freak’ or a ‘nutter’.
And as much as they care for my welfare, I guess there is also an element of shame
and embarrassment for my family through association. After all, if they were slightly
embarrassed to tell their friends that their beloved doctor son had chosen to become
a psychiatrist, how would they feel telling their friends that he had also now become
a psychiatric patient. How they must have imagined their friends mocking, ‘it’s true
what they say isn’t it, it takes one to know one, I told you all psychiatrists were
mad themselves!’ After all, it is not an uncommon perception, even among medics, that
you either have to be ‘mad’ to do psychiatry, or that exposure to ‘mad’ patients will
eventually make you ‘mad’ too. An interesting chicken-and-egg debate among medical
students, as I recall from my own university days!
1
I suppose I’m not doing much to dispel that particular myth. Indeed, many of my most
stigmatising experiences came from within the medical profession, as opposed to the
wider general public. Most of these incidents were borne out of negative stereotyping
of mental illness. The most memorable example came when I met with the medical director
of the trust in which I was working, with a view to finding out more about the allegation
I faced. During this consultation, it became clear that this very senior doctor believed
my circumstances were essentially self-inflicted, commenting that such false accusations
must be an ‘occupational hazard’ in psychiatry, and that, as such, I only had myself
to blame for choosing the specialty. It became clear that he seriously believed that
many psychiatric patients must have a propensity to make deliberately false, malicious
allegations, as if this trait is in their nature. I was initially quite taken aback
by his prejudiced stereotyped attitude towards psychiatric patients, until I came
to realise his opinions were shared by many of my medical friends too. It is this
kind of negative stereotyping that contributes hugely to the stigma of mental illness.
That is not to say psychiatrists should take the moral high ground over their medical
counterparts on this front. Indeed, it seems that we our the most hypocritical when
it comes to prejudiced attitudes towards our own patients. And I include myself in
this. I wonder how many psychiatrists can honestly say they treat all their patients
with equal regard, irrespective of the diagnostic label with which they come attached?
I am certain many psychiatrists hold prejudiced and stereotyped preconceptions, and
make negative judgements when they are asked to assess a patient with a diagnosis
of borderline personality disorder or drug/alcohol misuse. Most would far prefer to
see patients with ‘real’ psychiatric illness, such as schizophrenia. What is this,
if not an extension of the prejudiced attitudes our medical colleagues display towards
psychiatric patients as a whole? Are psychiatrists, then, as supposed advocates of
mentally ill people, not guilty of the greatest hypocrisy when it comes to challenging
the negative stereotypes associated with mental illness?
The stigma differential
As far as wider society’s viewpoint of mental illness is concerned, there seems to
be a differential degree of stigma and prejudice attached to different mental disorders.
Depression seems to be more widely understood and accepted these days, and people
with depression seem more at ease in disclosing their illness. Additionally, the ‘understandability’
of depression, particularly as a reaction to adverse life events, makes it a more
palatable proposition to others. By contrast, it seems that psychotic illnesses have
a much greater stigma attached to them, partly due to persisting misconceptions (for
example dangerous and violent people), and partly because they lack the ‘understandability’
of depressive illnesses, in that their symptoms are completely alien concepts for
many people. Thus, people find it more difficult to put themselves in your shoes.
I experienced this differential stigma at play when it came to being open about my
own illness. I have no doubt that I would have found it far easier to disclose to
people that I had depression as a result of an extremely stressful period, as opposed
to a psychotic episode. However, although I would have been more at ease admitting
to depression, I am not so sure that I would have received as sympathetic a reaction
from most. In the case of depression, many people, although being able to ‘relate’
to the condition in such circumstances, will have underlying emotions that the individual
needs to ‘snap out of it’, or ‘pull themselves together’ or ‘get a grip’. They will
view this reaction as a sign of weakness and self-pity in the individual, which will
in turn elicit feelings of annoyance or irritation, rather than sympathy. Conversely,
although the psychotic experience will be far removed from ‘normal’ experiences, people
would be less inclined to view it as a character flaw, and more as a genuine (albeit
alien) ‘disease’. They may also perceive it to be less under the control of the individual,
and thus may be more sympathetic to them.
This differential stigma also extends to my own willingness to open up about my illness.
On the other hand, I think that I have only been able to open up about my illness
because it occurred within the context of an extremely distressing situation, and
because it seems to have been a transient phenomenon. I have no doubt that had I been
diagnosed with a chronic psychotic illness (such as schizophrenia), which did not
occur in the context of severe stress, and that had not abated completely, I would
not have been able to write this article. Furthermore, had this been the case, I have
no doubt that people (friends and family included) would be treating me very differently:
with greater caution, wariness and a persisting sense of disconnection and estrangement
towards me. It is clear that they have only been able to accept my illness because
it was short lived and transitory, a thing of the past, which can be resigned to history:
‘As long as you’re back to normal now, that’s the main thing’.
Accepting a mental health diagnosis
So what have I learnt from my experience of psychosis and the stigma that comes as
part of the package with such an illness? Looking back now, the experience felt like
the classical stages of the grieving process, as described by Prochaska and DiClemente.
For a period of time in the aftermath of my illness, I went through stages of denial,
anger, bargaining and depression, and it seems as though the stigma attached to the
illness contributed to these stages more than the actual experience of mental illness
itself. As the title of a recent article in the Independent newspaper eloquently puts
it, ‘the stigma of mental ill health is worse than the illness’. Ultimately, achieving
a state of acceptance of one’s illness in reality means learning to overcome the stigma
that is attached to it. For only then is one able to embrace the illness, process
it positively, and move on with one’s life with some degree of confidence. Based on
my own experience of psychotic illness, it seems clear to me that the many people
who have a mental illness would have a far better prognosis if they didn’t have to
deal with the associated stigma and negative attitudes from society at large. For
it is this aspect of mental illness that proved the most difficult to overcome. Long
after the acute psychotic symptoms have abated, it is the stigma that is the residual
source of persisting distress, and functional impairment. For stigma has the power
to irrevocably destroy one’s sense of self-worth, and to grossly distort one’s self-identity.
Concerns for the future
I am relieved to say that I am enjoying a period of sustained mental stability, that
I can only hope continues. Interestingly, the issues that might impede my recovery
to full functioning seem to relate to issues of stigma. For example, I have recently
returned to work on a phased basis. It is with some trepidation that I have resumed
my training, perhaps unsurprisingly, after such a protracted period of sickness. Prior
to returning, I had a long discussion with my clinical supervisor about the possibility
of becoming unwell again while at work. How would this be picked up at an early stage,
so as to minimise the distress to myself and, of course, to avert any potential for
patient harm. It was something that I had hitherto not given much consideration. I
had to admit to her that I may well find it difficult to actually openly disclose
any paranoid ideas or other thoughts that may be suggestive of a relapse (working
on the massive presumption that I would be able to identify such thoughts as symptoms
of illness in the first place!). I tried to imagine how I would actually go about
informing my supervisor that I was experiencing ‘abnormal’ thoughts, if such an eventuality
arose. It was at this point that I realised admitting to such ‘symptoms’ continues
to be a source of embarrassment to me. The thought of approaching my consultant and
saying something along the lines of, ‘Hi there, I think I might be developing paranoid
ideas, and I think I’m hearing voices’, makes me cringe to my core. But why? If I
had returned to work after a long lay-off following a bout of physical illness (for
example heart problems), would I have any issues informing her that I was experiencing
chest pain? Of course not. So what is the difference? It comes down to the shame and/or
embarrassment of admitting to mental ill health as compared with physical, and this
is another facet of the stigma associated with such illness. And so we can see that
if such issues around stigma impede one’s ability to seek help in a timely manner,
surely they could potentially have an adverse impact on one’s future prognosis. And
so it must be for many of our patients - they don’t seek help proactively because
of feelings of shame and embarrassment regarding their illness, as opposed to deliberately
disengaging because of a poor therapeutic alliance with their team, or lack of insight
in to their illness. For myself, at least, I have realised that I will always find
it difficult to openly admit to symptoms suggestive of a relapse, purely as a result
of the way I perceive others will view my illness.
Stigma can rear its ugly head in the most subtle of ways, even in situations where
people mean no ill will. When I go to the pharmacy to collect my prescription, I notice
the chemist’s double-take at the list of medications, followed by a sly glance at
me and a whispered conversation with their colleague. Of course, they mean nothing
by this, but one can’t help wondering what they are thinking about you. I do not recall
the same pharmacists batting an eyelid when the only medications I was prescribed
were lansoprazole and ferrous sulphate - no stigma attached to indigestion or anaemia,
then. Such changes in behaviour towards oneself aren’t particularly upsetting in and
of themselves, but they do contribute to the general air of negativity one feels when
living with mental illness. You just know that people view you differently than they
did before.
So, you may ask, why did I come to the decision to share my experience of psychotic
illness, particularly in the face of advice to the contrary from so many quarters.
At the end of the day, I surmised, all my anti-stigma support for my patients wouldn’t
mean a thing, unless I was willing to practise as I preach, and to put my money where
my mouth is. After all, what kind of a psychiatrist would I be if, after preaching
to my own patients not to be ashamed or embarrassed about their conditions, I chose
to conceal my own illness? To my mind, this would make me nothing short of a hypocrite.
I would like to think this decision came in the form of an enlightened ‘Eureka’ moment,
but alas, this is not the case. Rather, it has been a constant struggle with mixed
and ever-changing emotions, and I still don’t know how it will affect my future. It
is very likely that potential employers and concerned relatives will view this as
a foolhardy exercise, rather than one of personal dedication to the cause of destigmatising
mental illness. However, should that be the case, I have concluded that this would
reflect negatively on them, and not me.
So now that I have learnt to accept my psychotic illness, I hope that I may be able
to use it to my advantage in my clinical practice. I genuinely believe the experience
has improved my capacity to understand what my patients are experiencing on a much
more personal level. In essence, I would like to think it will help me become a better
psychiatrist. Like mental illness, the stigma that comes with it is a multifaceted
and complex concept. From my own personal experience, the stigma associated with mental
illness is just as debilitating as the symptoms. For although most patients will usually
get some (albeit temporary or partial) relief from their undoubtedly distressing symptoms,
there is no such reprieve with stigma - it is unrelenting in its negative impact.
Stigma has the power to smother you with its secrecy and prejudice. The word may be
used metaphorically in the context of mental illness, but it sometimes makes you feel
as if you are literally marked or stained.