"psychosis", "hearing voices", "schizophrenia", "schizotypy" and "ego
dystonia."
Words are important but concepts more. Those phrases mean different
things to academics and experts with experience by their understandings
are more refined than the public who may see all of those as the same
thing and probably not know what schizotypy or an ego dystonic state is.
The term schizophrenia has meant many things and definitions I've read
are poor. The medical model says its is a severe and dehabilitating
mental illness with a lot of causes and triggers experienced by
approximately 1% of the population. It is a state involving profound
hallucinations and delusions with extreme distress and dysfunction. It
is associated with many things however none of those are predictors in
the individual.
Experiencing psychosis, hearing voices, schizotypy or ego dystonia is
not schizophrenia. Psychosis can happen in many illnesses - physical and
mental. It can be induced by drugs, or a "psychosis-like" state - the
differentiation is because psychosis is an internal experience and
drug-induced psychosis can be psychosis (temporary delusions and
hallucinations) but look like it to the external observer. Schizophrenia
is considered by the medical profession to be a lifelong illness with
expectations of high levels of detrioration on a wide number of
measures. The medical model also considers it a brain disease. In
earlier posts I've highlighted a brain imaging study in children that
showed those with a schizophrenia diagnosis according to DSM-IIIR have
higher rates of grey matter loss than other matched children. I need to
read more about this I'm afraid however I suspect that not every person
in the UK who has a diagnosis of schizophrenia shows the same brain
matter loss patterns. There is a large amount of variability in a
diagnosis and traditional concepts of enduring diagnosis and poor hope
of recovery are less true nowadays but there is still desperate need for
progress in this area.
Some people who have experienced psychosis may get an diagnosis of
schizophrenia later on which is why the DSM-V revision is including the
controversial pre-psychotic or psychosis risk syndrome (I forget its
name in DSM-V but those two terms are what are used in the literature)
diagnosis. The controversy is about the medicalisation of what is a
normal state of being. I'm not going to go in depth into what is a
complex question (what is normal?) at this juncture but to explain that
the medicalisation of the human condition has always been about a
decision about what is normal and what needs to be treated and it runs
the high risk of overdiagnosis.
Hearing voices may precisely mean auditory hallucinations however in
mind there is some confusion over whether the term also includes people
who have thoughts in their stream of consciousness that are not their
own. I believe that this state is described as ego dystonia but I am not
very sure. Confusion ensues with the addition of the concept schizotypy
which, as a concept, is now becoming an illness when it was considered
normal through the new personality disorder schizotypal axis and
pre-psychotic risk syndrome. This is another concept I have limited
understanding of however the point of this information is two-fold. Ego
dystonia, schizotypy or experiencing auditory hallucinations, hearing a
voice in your head, having an inner dualogue or dialogue are not
schizophrenia either, They are one or two of the cluster of symptoms
in the official diagnostic criteria but there are other criteria that go
to make a diagnosis of schizophrenia and these are states observed in
people with other diagnoses, for example bipolar or schizoaffective,
puerperal psychosis or depression. Confusing the picture even further,
some people would consider that the experience of hearing voices was
just a different experience of the stream of consciousness - a
misunderstood alternative state of awareness.
The other point is about the problems of concepts and language. The
internal experiences described my mental health terms and labels is very
complicated and the words are assumed to be communicative. They aren't.
"Schizophrenia" in the minds of far too many people is totally
misunderstood and the problems caused by language are a barrier to
promoting a better understanding of this condition amongst the
consensus. In the book Madness Explained by Richard Bentall he robustly
criticises psychiatry's ability to reliably diagnose schizophrenia and
the program How mad are you? makes the same point in a public-friendly
format so theprofessionals are little better at understanding the concepts.
The other states I've described such as schizotypy and ego dystonia are
not, in themselves and at this current time, illnesses however are
experienced by people when they are ill and can cause high levels of
disability and distress to some people. I first heard the term "ego
dystonia" in a paper written by Professor Marius Romme published in the
British Journal of Psychiatry around 1992. It was about his study of
hearing voices copers however after the interviews he noted that all the
copers had an ego dystonic state and implied that this was different to
hearing voices. I took it to mean what I was going through which was the
perception that not all the thoughts in my stream of consciousness were
my own and that they were coming from something else. There were times
that I felt controlled by this something else - the effect was not just
on my stream of consciousness. It affected my body parts and I felt
parts of the external world were being controlled. There are times when
it was like living in a nightmare. I would guess this is psychosis,
delusion and probably paranoia. I'm still unsure whether its enough to
get me a diagnosis of schizophrenia. Many people would require more
information to make that diagnosis, like my psychosocial functioning and
length of severe delusions.
The public are unaware of the high number of people who have psychotic
experiences or unusual states of consciousness. It is not something that
is spoken about so the assumption is that these experiences only have a
poor outcome. Copers don't talk about it in UK society because it will
make them look mad. I self-disclose a lot and in doing so I find more
and more people either know people who've been mad or have experienced
madness themselves.
A large part of the severe disability of schizophrenia is caused by the
social disability assocatied with the various states of mind covered by
this term. I dealt with the worst of it without medical care of any form
though I worked in an unusual workplace and I'm tough at times. The
workplace environment had very low levels of mental health stigma and
had good mental health awareness. I withdrew from social functioning as
much as possible because I was unable to understand changed reality and
while I could handle the paranoid psychosis with all my conscious will
there were times where I didn't have the strength. What that means is
that even though all my senses were telling me that people could read my
thoughts or had information about my life that they couldn't have my "I"
would push against it all to say that it wasn't true.
It was the only way to survive the external world. The workplace
environment was like no other. It was a workplace first and foremost,
and not recognised as a form of therapeutic community or healthcare
environment. It came with all the stresses of a normal workplace, the
interpersonal strain, politics and management (and employee) idiocracy.
However the culture and the people were unlike other places. I was
befriended, I think, by someone who would go out with me. I'd withdrawn
from my old friends because of a percieved and real sense of guilt and
shame for things I'd said and done when I was in a long crisis as I came
off the medication and I was seriously thinking of killing myself at the
time so it would be better that they forgot me. That small bit of social
contact was perhaps the most I'd have during this phase. I continued to
come into work whenever I could and many times in a state where my
manager would have preferred me not to be in the office for my health
and their sanity but I continued on as this husk of a person just
turning up to work and interacting as little as possible.
I think they thought I was pretty weird (and I still think they do but
I'm ok with that) but were much more accepting of me than other
workplace environments would be, and that's something I can't be
thankful enough for. I was bereft of hope for a long time. There were
days that the knowledge I was going to kill myself soon anyway were the
happy thought that got me through the day. My consciousness had been
shattered and my experience of daily life was like living a distorted
nightmare that felt completely real. Medical services would have
sectioned me and drugged me up. I'd have probably ended up on a section
3 at least, perhaps.
After some time the every shifting but intense psychosis started to fade
and I noticed a return to feeling my senses working again as they used
to. It was slow but gained apace. My mood lifted and that was a
wonderful time for someone who had been living in hell. Happiness is
most easily defined, perhaps, as the state after intense misery because
it is never clearer.
My state of conscioussness has calmed. It is my belief that I am a lot
wiser, smarter, tougher and perhaps more sensitive through this
experience having through it the way I have done over the past three or
four years rather than had I have sought help from psychiatric mental
healthcare. I must admit I've recently attempted to engage with services
to get a therapist so I'm not saying that NHS mental health services are
totally useless or without purpose. Its just what they would do to me in
my case and with the new medico-legal framework will have worse outcomes
for me, even with some of the terrible things I've had happen to me and
I did to myself while I went through this.. The experience has also made
me question the psychiatric paradigm of psychosis, hearing voices (etc)
and schizophrenia.
It is not an illness if a person is capable of living with a different
experience of consciousness. Some may consider it abnormal but that is a
value judgement just like the value judgements through old diagnoses
like drapetomania (slaves who kept on running away) or homosexuality.
The list of people who have experienced unusual states of consciousness
is lengthy and includes people like Freud and Jung....
.......I could turn this into a lengthy essay because there's more
information. I think I've made the point I started to make and rambled
on a bit more than I should. Its sunny outside and my brown skin is
looking pasty. I need to go outside.
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