So I stumbled over a video on YouTube recently: it's a genuine, non-parodied advertisment for Seroquel XR which is beamed into homes in the States on a regular basis. Until recently, I was blissfully unaware that our American cousins are subjected to this manner of sickening trash. And they call us the nutters.
Now. Seroquel XR is the commercial name for Quetiapine. I have, to my knowledge, known and been close to three people who have been prescribed it, all of whom suffered with acute episodes of psychosis. The person who sticks most in my memory is N, who is in part the inspiration for this blog and who deserves a whole post of her own (one which I hope to write at some point soon). Suffice to say, however, that all three occupied a mental universe about as far away from the depression described in this advertisment as it is possible to get. Their psychosis was so severe as to disrupt their lives entirely for a period of years, and to be the cause of numerous hospitalisations.
It is interesting to note that in 1997, Quetiapine was cleared only for use in the treatment of schizophrenia. Since then, it has been steadily cleared to treat more and more mental health conditions, from OCD to Post Traumatic Stress Disorder and - most recently - depression. Thing is, its track record is not exactly peachy. AstraZeneca, the company who manufacture the drug and very kindly offer
financial help to those who cannot afford dangerous and inappropriate
medication, have had around 10 000 lawsuits filed against them
by patients and their families whose prescriptions resulted in
everything from severe insomnia to death, most notably in the case of several American soldiers and veterans, who died after
receiving Seroquel XR as a treatment for PTSD.
Given this, I hear you cry, why in the name of all the things is it being prescribed as an anti-depressent - let alone advertised as a quick n easy, prescribed-over-the-phone booster drug? Hell, how is it still on the market? Well, unsurprisingly, it makes AstraZeneca a shit ton of dolla. The more conditions it can be used for, the greater the revenue for this heartless shower of bastards. God bless the free market, eh?
Nineteen Plus Seven
Blog charting the real(ish)-time exploits, thoughts and encounters of a common or garden manic depressive from diagnosis onwards.
Thursday 16 August 2012
Wednesday 8 August 2012
The Trouble with Doctors: Part Two - Breaking the GP Barrier
So
to summarise the discussion downblog: despite most having had no
mental health training whatsoever, GPs are the 'ongoing physicians'
for the majority of those living with mental illness. What this
means in practice is that the 75% of those suffering with mental
illness (half the UK population, incidentally) receive no treatment
as a direct result of having been 'bounced back' from access to this
treatment by GPs who misunderstand their symptoms. For those who do
access treatment at GP level, it is often the case that only the
symptoms present at the time of their visit are treated, and then
often with inappropriate drugs. So, as happened to me, a bipolar
patient might present with symptoms of depression which are treated
with an anti-depressant. This induces mania. The patient does not
seek help whilst manic as they do not believe that anything is wrong,
and very often no intervention is made from other channels (family,
friends etc.). So the wider problem goes either misdiagnosed or
undiagnosed entirely. The patient then returns to the GP when in,
say, a mixed state. The GP interprets this as depression and
anxiety, prescribes more anti-depressants along with highly addictive
tranquillisers and the cycle begins again, except this time there's
the problem of nascent drug dependency to contend with as well. At
no point is the patient referred on to a specialist, which would
break this cycle. In addition to the ignorance of many GPs, one of
the most powerful forces keeping this cycle going is, in my
experience and that of many of my peers, the inability of the patient
to communicate the extent of their condition. This can be down to a
number of factors, for example the catatonia induced by depression,
the racing thoughts and self-loathing which come with mixed states
and obstruct your ability to articulate yourself; or the shame and
self-deception to which you are subject during periods of relative
clarity. So whilst the medical profession umms and aahs over whether
or not to actually train general practitioners in this fairly
important area of medicine, what can we do from our side to overcome
this problem of communication and access the treatment we need? It
is in this spirit that I present the first of a series of points
which helped me along the way to just that. It is not intended to
be instructional – if anything it's a wish-list of things I wish I
had been told at age 16 – but I do hope it will provide some
practical tips on navigating the murky machinations of the mental
health system, and a few cheap laughs along the way.
1. Honesty. It's pretty
hard to be honest with yourself about what your brain does, and what
it induces you to do, when you suffer from a serious mental illness.
As I touched on in Part One, not only have you got all that
no-fuss-please-we're-British-ness flying around, you also probably
don't want to admit to yourself just how weird this shit can get.
In addition to all the scary moods, thoughts and voices, chances are
you've probably acted on them at some point; done some pretty
socially unacceptable things, and some things you're so ashamed of
you can barely believe it was you who did them. If you've ever
experienced psychosis, you also almost definitely did not believe
that your visions and voices were symptoms of mental illness at the
time. In retrospect, for a long time I was stuck in limbo somewhere
between ignorance of my condition and knowledge that something
was awry but lacking the capability and will to stare it in the
face. As anyone who has experienced this curious state will know,
it is not for nothing that 'limbo' is another word for 'purgatory'.
I wanted desperately to be better, but that would have necessitated
admitting I was crazy, and I really wanted
not to be crazy. Equally, I wanted a diagnosis that would confirm
my suspicion that something was indeed rotten in the state of 19,
but I was terrified to ask for it, in case my condition and the
behaviour to which it gave rise turned out to be simply the result
of a series of unsavoury character flaws.
For me it was a slow
journey from this seething mass of contradictions to finally
achieving a diagnosis which made sense to me and (so far, fingers
crossed) effective treatment for it. The one factor present in
every single leap forward, however, has been an increased capacity
for honesty with myself and others about my condition and its
effects. I believe that the single most helpful thing anyone could
have done when I first became seriously ill was to have encouraged
me to acknowledge the exact nature of my symptoms and reassure me
that, rather than making me a spectacular failure of a human, they
simply meant that I had a condition which was manageable. I
recently went with my sister, S, to an open meeting of her eating
disorder support group where this was the central theme. Overeaters
Anonymous (don't be fooled by the name – the group supports all
those dealing with compulsive eating, so anorexia, bulimia and
compulsive overeating are all represented) is, like its Narcotics
and Alcoholics namesakes, a 12-step programme. As such, it is
pretty prescriptive in its methods and there are certain elements of
the programme which I find difficult to swallow, not least the rule
that participants must acknowledge the existence of a 'higher power'
and relinquish control of their addiction to it. However, the
programme does involve levels of self-interrogation and contingent
bravery for which I wholeheartedly salute its members. Step Four,
for example, consists of making of a 'moral inventory' in which
participants must list all their 'flaws' and all the 'wrongs' they
have ever done to anyone as a result of their addiction (in this
case an addiction to food and compulsive behaviours around it). In
Step 5, they must use this to admit to their higher power, to
themselves and to another human being the exact nature of their
'wrongs'. Here again, although I am somewhat uncomfortable with the
term 'wrongs' in the context of a severe mental illness, the overall
process – that of investigating, exhaustively, all of the symptoms
and effects of one's condition – was remarkably similar to the
process which eventually helped me to break down the barrier to
effective treatment. Before making an appointment to see the GP, I
wrote down over a period of weeks (enough time to work myself up to
seeing them, and to take plenty of breathers from what was a pretty
horrible task, frankly) exactly what my immediate and historical
symptoms and episodes were, warts and all, even and especially the
stuff I really wanted to bury. This way, I had a 'cue sheet' for
when the going got tough, and one which I could always give to the
doctor to read if I couldn't face saying certain things aloud.
Also, when it came to writing my letter of self- referral, already
having something on paper made doing this under pressure a lot easier
and reduced the risk of my wimping out and not putting the really
shit bits in as simply copying it out made me detatch from the
process of writing. Prior to doing this, I also went through what I
had written with D. This was crucial – like the members of OA I
had the pleasure to meet, I had spent years in fear of what I think
and do when ill, and of the fact that these things could very well
make me a fundamentally bad person. For the OA members and for me,
the experience of someone you love and respect knowing your darkest
thoughts and deeds – and consequently really knowing you rather
than the sanitised version you are struggling to project –
and accepting you anyway brought about an almost immediate shift in
thinking. For me, if such a wonderful person had heard and
understood all the things I thought were terrible about me, and
responded with 'that explains a lot. Now I understand , and can
actually help you rather than worrying that my girlfriend was
kidnapped and replaced by a neurotic doppelganger. Still love you.
Do you want hug and some of my pie?' then maybe I could start to
consider the formerly ludicrous possibility that I was not quite so
rubbish as I had always imagined.
2.
Enlist the troops. Basically, this is the creation of the 'support
network' that all mental health professionals will advise you to
have. Whether it's the one person you initially told about your
intention to seek help, a dedicated support group (this comes highly
recommended if you are worried about involving friends or family too
closely), or a group of close friends, get yourself a mini-army who
will support you through the following steps: they will be the
people to have your back in appointments when necessary, to speak on
your behalf when you find it too difficult, and to keep you on-track
during the whole process.
3. Setting Objectives. Ridiculously, my City
sales training (yeah yeah yeah, I was a recruitment consultant for
lawyers, I lasted six months ie. the point at which hypomania and
the novelty of playing Mad Men dress-up had simultaneously begun to
wane, please laugh) probably played a big part in helping me
communicate with my GP. Much like an actor is taught to 'know their
motivation' for a scene, you must set an objective for every single
sales call and meeting you enter into. In most cases the objective
will be a small step towards a larger goal which seems scary and
unachievable on its own. For example 'today I will get this person
to send me their CV' with the overall goal being 'I will manage to
persuade both them and the client that they are the best person for
the job even though they are massively underqualified, have zero
experience and a patchy work history and don't want to work for them
anyway thereby securing a hefty commission cheque and not getting
sacked'. Once this principle was transferreed to my October visit
to the GP, my objective became 'today I will get my GP to refer me
for further treatment' with the overall, big scary goal being 'I
will get better, stop self-harming, stabilise my mood, hold down a
job, engage in further study, manage and enjoy a functional
relationship, and avoid completely self-destructing every 6 months.'
4. Objection handling. This dark art
is one of the first things any sales trainer worth their salt will
drill into their trembling recruits. In the legal recruitment world,
objection handling is the practice of trying to get someone to stay
on the phone to you after you've called them in the middle of a
really important Lawyer meeting and tried to sell them an imaginary
job (in the hope that they'll go for it so you can tell them it's
unfortunately now off the market but do they want to interview for
this one instead except it's totally a waste of their time but it
does help you hit your targets) and they have – entirely
justifiably – told you to fuck off. There's a little acronym for
doing this, LAARC (not to be confued with LARPS, or indeed 'having a
lark' which it is emphatically not) which goes:
Listen
(carefully to the objection), eg. 'I don't want another job. My job
is a nice job and in case you hadn't noticed we are in fact in the
middle of the biggest global recession for 80 years you
ridiculous parasite'
Acknowledge
(their concern) eg. 'I appreciate that you are content in your
current role'
Assess
(the root of the concern)eg. 'I can understand that you are reluctant
to look into the market right now given the current economic
climate'
Respond
(by offering a lovely solution. There is always a lovely solution,
even and especially if it is an outrageous lie) 'But you're
obviously also very career-conscious and I'm sure you wouldn't want
to miss out on the ideal role so why don't you come in for a chat
(during which we'll ply you with coffee, biscuits and smarm,
convince you that your current firm is about to take a nose-dive
and that your career hangs in the balance unless you apply for
this shiny shiny job Right Now) and we can let you know as and
when interesting things come up.
Confirm
(your course of action) 'So what I'll do is I'll book you in for a
meeting with myself and my colleague tomorrow at 8am'
Translate this to a GP situation and
you get something like this:
L:
'You don't look too depressed and you're not manic. Here, have this
Cytalopram, it will take the edge off.
A:
'I appreciate that my full range of symptoms might not be immediately
obvious'.
A:
'I can understand that you want to treat the symptoms of depression'
R:
'I am not manic at the moment, and when I am I do not believe
anything is wrong but I have had several episodes (hand over cue
sheet if necessary). I am currently coming out of a very severe
depressive episode (indicate on cue sheet if necessary) which is why
I have been able to get myself here at all. Anti-depressants have
not helped in the past as they induce mania, so I would rather not
take Cytalopram'.
C:
What I do want is a long-term solution that will enable me to live
with my condition. I would like to be referred to a psychiatrist,
please.
Repeat as necessary, with help from
the troops if needed. In the process, you will more than likely
demonstrate a much greater knowledge of your condition, needs, and
the mental health system itself than your GP, and they will agree to
refer you.
So hoorah! Objective achieved! GP
Barrier broken! At this point, however you will need to arm yourself
for the next step: achieving a correct diagnosis and a programme of
treatment that works for you. In Part Three, we'll look at the
strange science that is mental health diagnostics and the fabled
guinea-pig approach that many psychiatrists seem to take to drug
treatment. Until then, good luck, and happy barrier-breaking!
Tuesday 31 July 2012
Gizza job...
Take a look at this:
http://www.bbc.co.uk/iplayer/ episode/b01lldrc/ Panorama_Disabled_or_Faking_It/
Skip to
minute 25 for the bit where an assessor from Atos (the private company employed
by our glorious overlords to decide whether - I say decide whether , I mean
'affirm that' - those shirkers on the incapacity-benefit-as-was are actually
incapacitated or whether they just need a bit of 'tough love' to get them over
their breast cancer/schizophrenia/ amputation and back onto the checkouts) asks a lady who
has made multiple attempts on her life 'why she's not dead yet'. Then check out
Malcolm Harrington, the govt's independent reviewer of this surprisingly
unpopular scheme, as he gravely reveals he 'doesn't like' that 'some people'
might suffer as a result. Nice house, Mr Harrington. Experienced much incapacity
have you? How about 92 quid to last the week, seen much of that? And how about
losing your health, independence and job, only to be told 'hey, you've got one
arm, right? You've got a finger? You can push a button! Button-pushing's a job!
Back to the JC-Plus with you, you scrounger.' And all because some bright spark in Whitehall decided that, rather than trouble his mates with some ACTUAL TAX it made way more sense to recoup their failings via you. Cos I don't think you'd like that
much, either.
Monday 30 July 2012
The Trouble with Doctors: Part One - Getting the Buggers to Listen
A snazzy new report courtesy of the good people of the London School of Economics hit
the headlines recently, suggesting that whilst mental illness is now
thought to account for half of all illness in the UK, only a quarter
of those who suffer receive any treatment. Well, jolly good and
about time. The bit that really interested me, however, was barely
touched upon in the press bar a few sweeping statements about
'doctors not taking patients seriously'. It transpires that GPs, in
the vast majority, do no mental health rotation during their training
whatsoever. This despite the fact that they are – in the words of
the report – the 'ongoing
physicians for nearly all mentally ill people.' This is
particularly striking as it reflects one of the
principal issues I and many of my peers have continually come up against, and
which is evidently still widespread. The ignorance of many GPs when
faced with a patient suffering with a mental health condition is a
huge barrier to receiving a correct diagnosis, let alone correct
treatment, and can be especially confusing and demoralising if you
are seeking help for the first time and/or when you are relatively
young. As a now-hardened mental health service user, accustomed to
navigating the murky waters of the NHS in pursuit of a treatment that
actually works, I thought it might be useful to throw in my two pennorth on the subject. The experience of seeking help will be
different for everyone, so I don't wish to sound prescriptive (a pun!
A doctor pun! Ahahahaa, ugh.) but there are a few things I've learned
along the way that I wish I had known ten years ago, so I thought I'd
set them down in the hope that someone else might find them helpful
too.
Chances are that when you were very
young, diagnoses were a piece of cake. You're ill: you get taken to
the GP. They know all about ill. They'll give you some of that
banana flavoured stuff and you've probably got a half-decent shot at
some Calpol too, brilliant, yum. Better now! As you get a bit
older, you realise that although it is not unknown for your GP to
misdiagnose a physical complaint, the onus is on them to look at
what's wrong and tell you how to fix it, perhaps referring you on to a specialist in
the process. It therefore comes as something of a shock to realise that mental diagnoses operate in the opposite way. This fact alone is, I believe, one of the least-understood facts about the struggle to get help and treatment. If someone has never received treatment for anything other than a physical ailment, it is understandable that they would have the same view of doctors as we did as children: all you have to do is turn up with your symptoms and they will fix them. For example, when I turned up at my surgery with an achy back and trouble
weeing, I had no idea that it was a kidney infection, or that I would
need to see this doctor in that hospital and take this drug to get
well. I just said 'I've got an achy back and trouble weeing, any chance
you could sort it out?' In stark contrast, the entire mental health diagnostic process relies
on you, the patient, telling the doctor exactly what is wrong and exactly what you need, often writing your letter of referral to the appropriate specialist
yourself. Say this is the first time you have ever experienced symptoms of depression, or psychosis, or mania: it is very unlikely that you will have the knowledge of they metal health system, or even the vocabulary, to articulate this. There are also two further issues specific to bipolar which I have outlined below:
- Attempting a visit to the doctor in the first place when in the throes of either depression or mania is tricksy to say the least. For a start, when manic, it is highly unlikely that you will even recognise that you are ill and in need of intervention. You will probably be too busy bouncing around in the manner of a sleep-deprived, inhibition-haemmoraging pinball, throwing out all your clothes and furniture and declaring that you have decided to live forevermore without the hindrance of material possessions (ahem). In the opposite state, meanwhile, you will probably be rocking in a corner under a duvet and unable to leave the house, let alone get dressed and be in a waiting room with Other People. In the short windows of clarity between this state and depression, chances are that you're so ashamed, terrified and relieved it's over you decide to file the episode in the box marked 'This Never Happened' and carry on.
2. So help-seeking is generally
limited to times of depression. This brings with it its own set of
barriers, and generally if you do summon up the courage to make it
down to the GP (no mean feat), you run into murky waters again. In
some cases, the terror of going out in public may have spurred you
on to discard the Holey Leggings of Depression (HLD) and reach for
actual clothes, makeup and sunglasses the size of Russia. In
practice, this often leads to the irritatingly common objection that
'you don't look depressed'. Even when in full possession of HLD,
weepy and horribly anxious, many GPs will seem suspicious of the
fact that you have come at all, working on the logic that if you are
un-depressed enough to have actually left the house then you are
clearly not in need of help.
3. There is probably a fairly sizeable part of you that doesn't
actually want to believe that something is wrong. You've heard
stories about this kind of thing but you'd really rather it didn't
apply to you, even if it has being going on for years: after all, being bipolar means you must be Proper Mental and you're not sure you're ready to face up to that. In the case
of my peers and I, you're also British. This means that when they
give you one of those godawful questionnaires, you know the ones:
'how depressed are you from 1 – 10, 1 being fine and dandy and 10
being suicidal' even if you are in fact a 9, you are hardwired to
reject melodrama and most importantly, not to want to be any trouble
to the nice doctor. For those not familiar with our peculiar Limey
ways, this cartoon should illustrate it perfectly:
In reality, of course, any drowning
metaphors are liable to be much more Stevie Smith in nature. On a
slight tangent, Smith managed to pack what is for me the truest and
most haunting evocation of depression into twelve lines:
Nobody heard him, the dead man, But still he lay moaning: I was much further out than you thought And not waving but drowning. Poor chap, he always loved larking And now he's dead It must have been too cold for him his heart gave way, They said. Oh, no no no, it was too cold always (Still the dead one lay moaning) I was much too far out all my life And not waving but drowning.
But I digress. The merry dance illustrated above is one that many
sufferers of mental health conditions lead with their GPs , leading
them to be 'bounced back' from accessing the treatment they really
need as they never even get to the referral stage. At 'best' they
might be fobbed off with some Cytalopram (for the uninitiated this is
the cheapest available anti-depressant on the market and the go-to
drug for the symptoms of anxiety and mild depression at GP stage. Of
course, these symptoms are often only a fraction of a wider condition
and it is actively dangerous to prescribe it to those with bipolar as
it can induce a manic phase: in my case Cytalopram had no effect
whatsoever, so my GP bumped me up to Fluoxetine – Prozac, basically
– which, being a stronger 'upper', sent me spiralling off into
hypomania.). My October 2011 trip to the GP shows how rife this potentially very damaging course of action is: even with my entire mental health history - suicide attempts, crisis team interventions, manic episodes and all - literally at his fingertips, my GP nodded at me for three minutes as I faltered through my symptoms before interrupting me to attempt a Cytalopram prescription rather than look it over.
Essentially, there is a huge Catch 22 at the heart of
the system: a correct diagnosis is to a sufferer what an Equity Card
is to an actor - you can't get one until you're deemed ill enough,
and when you are ill enough you're too ill to seek one. This can go
on for years and lead to the situation we are now in, i.e. 75% of us
going without treatment for some pretty disabling conditions, unless
the cycle is broken. Hopefully GPs will indeed be required to
undergo mental health training at some point, but the worlds of
academia and politics move slowly, and policies such as these take
years to show any real results. So until then, it's down to us
crazies to make sure we get the treatment we need. As a young adult
knocked for six by the onset of my condition, I really was pretty
ill-equipped for this task. Over the years, however, and with a bit
of help from the most unlikely of places, I discovered a few things
that helped me through the barriers above and got me the diagnosis
and treatment I needed: I'm putting them into some kind of coherent,
legible form for my next post, so watch this space!
Saturday 2 June 2012
Putting My Money Where My Mouth Is
So yes. Intervention. It really was
swift this time: historically in times such as these I have form for
letting my highs fly and my lows fester, or for adopting the somewhat
flawed TRH (Trying Really Hard Not To Be Crazy, see downblog) method.
The point of hauling myself to J's offices back in October,
however, was precisely to break this cycle and to find a way of
living and working with my condition which did not involve the rug
being pulled from under my life every few months. In short, I wanted
to find a way not to shun my bipolar or to reject it, but to live and
work with it as I would with any other chronic condition, from
epilepsy to diabetes. As more and more awareness is generated of
what conditions like mine actually entail, such theoretical
comparisons have become commonplace in the debates surrounding
serious mental illness. This can only be a good thing; however, it
strikes me that we still have a long way to go before this theory can
be applied in practice, especially in public spheres such as places
of work and study. Clearly, as is widely discussed, there is much to
be done on the side of employers and institutions to address the
widespread stigma and ignorance around mental illness, but the
question that arose during my most recent episode was this: what can
we, the very people with first-hand experience of serious mental
illness, do to bring an end to our prejudicial treatment at work and
study? As the City wide-boys who trained me for my short-lived legal
recruitment role used to say 'communication is a two way street'.
(NB, they also used to bandy around the phrase '8 is late, 6 is safe'
to describe desirable starting hours, and favoured the use of
'onboard' as a verb, but ignore that. Also, if you're rightly
wondering how on God's green earth someone like me ended up selling
lies to lawyers for a living, I was hypo at the time so it was GREAT
for precisely 3 months and has provided a lifetime of anecdotes which
I imagine I will share in another post at some point). One thing I
have noticed, though, is that the culture of silence surrounding
conditions such as mine seems to ensure that many sufferers keep
schtum about their illnesses, calling in sick to work or lectures
with 'food poisoning' from time to time or simply walking out
whenever an episode hits. This perpetuates the vicious cycle of
employers/tutors believing sufferers are any manner of Bad Things
from 'flaky' to outright dangerous, and sufferers feeling guilty
about their conditions and believing that they are incapable of doing
a 'normal' job. As someone who has matched the above with startling
precision all my life, one of the most difficult things I found
myself doing during my most recent episode was breaking this cycle.
It was also possibly one of the best, and it went a little bit like
this:
Barring relatively minor fluctuations
in mood, this was the first really bad episode since the one last
Autumn which kick-started this whole blogging business. I spent a
merry Sunday mainly pacing the flat, intermittently cowering in
corners and bashing my head against the walls (I should also add that
I live above a pub, which on any given Sunday tends to resonate with
the inescapable sound of people being bloody happy and functional.
This Sunday, they were having a vintage music festival, upon which it
would appear the entire population of South East London had descended
for good, clean, loud fun. Any fellow depressive will, I am sure,
recognise the depths of self-loathing to which this will induce one
to sink). In a moment of clarity inbetween the waves of 'orrible, my
brain did shut up for long enough to let through the realisation that
I probably shouldn't attempt to teach the next day. I merrily called
in with 'food poisoning' the next morning and consoled myself that,
in a couple of days I would be fine. Fine! Fine.
By the time a couple of days later
rolled around and I had begun to hear everyone in the (silent zone of
the) library vying with the voices in my mind to provide reasons why
I should top myself at my earliest convenience, and suggesting a
variety of imaginative ways in which this could be achieved, I called
D. Still valiantly clinging to the notion that I could definitely
teach a class in two hours' time and that I was just being weak and
needed a bit of a pep talk, it came as something of a shock when he
informed me in no uncertain terms that this teaching lark was not
going to happen. Instead, he theorised, I needed to go and see my
tutor to explain the problem and take some time off. This proposal
was alien to me for two reasons:
1. Actually getting in there with an
explanation before hitting the peak of an episode was an entirely new
concept. There was a little bit of my racing mind which was already
two weeks down the line, at the bit where I break down whilst
teaching, run for the door and never come back, change vocational
direction at the first sign of a rise in mood and begin the whole
sorry cycle again. Surely this was the only way, no?
2. I hate Taking Time Off. Mainly
because I still associate it with failure, even though I know
logically that that's not remotely the case. This is probably why
I've always had to have Time Off forced upon me to date. For all
that I've espoused since my diagnosis, and for all that I've
documented here whilst mentally well, namely the importance of seeing
bipolar as a fundamental part of oneself, the importance of learning
to work with it, it being 'normal', all of it went immediately to pot
the moment I became ill again. There is nothing more humbling,
nothing more guaranteed to make you feel like an invalid than being
overwhelmed by the sort of madness that renders you unable to
recognise what is/is not real and forces you to be utterly reliant on
others to make this distinction for you. During this episode, my
bipolar definitely did not feel like it was a part of me. It was a
tornado of an exterior force, one that I was battling with tooth and
nail for control. Perhaps most painfully, there was a part of me
that recognised, at least some of the time, that the world I was
momentarily inhabiting wasn't real and that I really was quite ill.
Far from consoling me, my depressive state turned this into yet
another reason to despise my malfunctioning brain. The Czech have a
word, litost, which defines this feeling. It literally means 'a
state of torment at catching sight of one's own misery', though my
friend R describes it, in a much more British way, as 'feeling shit
about feeling shit'.
There was, however, a tiny, embryonic
Voice of Reason (possibly shoved into my wailing brain by the
ever-reasonable D) which managed to break through the cacophony long
enough to ask: 'well, mate, if you're not going to put your money
where your mouth is, treat this and – crucially – represent it to
others as a manageable long-term condition, then who is? Who else
is going to demonstrate the 'real face' of bipolar disorder if not
the real people who live with it? Stretch out the Delhi Belly for as
long as you like; walk out and turn off your phone if you want to,
but it will mean that you don't really believe any of this stuff you
write about; you'll just be perpetuating the very stereotype you
purport to fight.' So, never one to be trumped by a metaphorical
embryo, I dragged myself down the corridor to my tutor's office, sat
down and did it. And miraculously, it was fine. No scenes, no being
frog-marched off the premises, just practicalities and a
non-intrusive kind of concern. If anything, there are actually two
huge positives to come out of all of this. Namely:
For the first time ever, I actually
listened to myself and others and accepted, however grudgingly, that
I really wasn't well, and that cancelling life for a little while
would mean getting better more quickly and not enduring months of
self-abuse (not the fun kind).
I managed to take responsibility for
said cancellations rather than forcing myself to follow through with
commitments until I either fucked up so spectacularly that my I would
never be allowed back through the door, or walked out and stopped
taking their calls. Although it went completely against the grain,
it really was a step towards re-establishing some kind of self-esteem
and relieving some of the contingent anxiety of being ill again: no
matter how crap I felt, I actually managed not let anyone down or
(hopefully) to lose too much respect. They knew the score, and I had
a grace period of the dreaded Time Off in which to recover without
worrying about fulfilling unachievable commitments .
Of course, I could have just got really
lucky and hit upon one understanding tutor. It's also undoubtedly
the case that education is one of the most sympathetic sectors
(something tells me I would have got a slightly different reaction
from the denizens of Cannon Street). But I think and dare to hope
that it is not just that, and that my experience represents a small
step forward for sufferers of mental illness in employment and
education. And perhaps it has something to do with the one thing the
City did teach me (apart from how to keep a straight face when
someone shouts, with all sincerity, 'IF YOU WANT A FRIEND, GET A
DOG!!!' during your training) namely that whichever industry you are
in, in our commercialised, 21st century world, you are a commodity.
Whether you represent money-making value or
keeping-us-at-the-top-of-the-league-tables value, you are worth
something to the people at the top. This means that, alongside their
contractual duty of care, it is in the interests of whichever
organisation you are a part of to do whatever is necessary to help
you get better, back on track, and performing for them. Although it
can be a little dispiriting to think of things in this way, what it
means in practical terms is actually pretty good for us – by being
upfront about what we need and why, by talking openly about our needs
and the practicalities of recovery, we instantly dispel many of the
myths around serious mental illness simply by virtue of representing
them in the same way we would if we had epilepsy, or even the flu.
By demonstrating that our conditions are manageable and showing that
we take responsibility for them, we enable those who really need to,
to see first-hand that we are not the dangerous, undesireable flakes
that purveyors of stereotyping would have them believe. We also
become an active part of the goal we share: that of setting mental
illness on a par with long-term physical conditions. It is for this
reason that I believe the shift in the way that I think and
communicate with others about my condition may be one of the most
important steps on the road to living with it successfully.
Wednesday 2 May 2012
SCHIZO NAZI HAS SKY IN JAIL: the language of marginalisation, from Suffragettes to schizophrenics.
In our bid
to secure a future a the top of the food chain, every human society
has created behavioural boundaries governing its members to ensure
that we keep our animal instincts in check. The French philosopher
and all-round bad boy Georges Bataille (who spouted a lot of rubbish,
but came up with a few gems of which this is one) theorised that, by
suppressing our instinctive urge to career through life having loads
of sex and killing each other for japes, we could gang up and develop
our superior intellect enough to become the dominant race. The eight
world religions reflect this, having broadly the same rules based on
controlling our more animal of urges (don't kill, be nice to your
neighbour, avoid the temptation of the wanton shag) and therefore
channelling our energy into Getting Shit Done, 'shit' in this
instance being furthering our dominion over nature by building cities
and pyramids and things, and inventing stuff along the way to make
this quicker and more comfortable such as the wheel, the telephone
and Perfect Fried Chicken. Trouble is,goes the theory, we are
actually still animals at heart, so we get a bit restive after too
much rule-following and need to let off steam at regular intervals.
Recognising this, societies the world over have created handy
amendments to the rules above, which I like to summarize in the
following way:
Don't kill. Unless they've done something really bad, like a murder or being a funny colour. Then think of a really nasty way to off the bastards and do it in public. You may like to bring a picnic, and the kids.
Be nice to your neighbour. Unless
you're bigger than them and they've got something you want, in which
case you can go to war with them. Take care to think of something
vague yet ominous to justify this, such as 'they're threatening our
way of life!' and repeat until you and enough people believe it. Then
go wild on their ass.
Avoid the temptation of the wanton shag. Don't rape people, or have sex with your mate's partner. In fact, don't have sex at all, unless you're married, and then only for the purposes of procreation. Unless there's a war on, in which case feel free to lay your sweaty mits on as much non-consensual sex as your smutty heart desires.
This errs somewhat towards the extreme end of the scale, but it demonstrates the need we have to transgress our boundaries. What's also interesting is the fact that, once we've broken the rules of society, we feel the need to reassert ourselves as a society almost immediately. When we declare war, we instantly define ourselves in opposition to the enemy. Communities become stronger in the face of this common foe; old divisions are forgotten as we come together, united by virtue of not being the undesireable thing. It doesn't really seem to matter what 'the undesireable thing' is; what's important is that everybody gets to gang up and wreak some destruction whilst also feeling reaffirmed in the safety of the community by virtue of not being the bad, scary thing over there. Societies have been performing this ritual at various levels since time immemorial, and being the language geek that I am, one of the most interesting things I discovered when researching this phenomenon was the recurring terms and imagery used to describe the 'undesireable'. I've outlined these below:
1. THE UNNATURAL MONSTER. This is a
tabloid fave - it's a pretty poor day at New International if at least one
paedophilic or serial killing monster has not been EXPOSED or found
to HAVE SKY IN JAIL. We also tend to call things that we find
particularly abhorrent 'unnatural' - old Hamlet's fratricidal murder,
for example, was 'most foul and unnatural,' whilst the film of serial
killer Aileen Wuornos' life is entitled 'Monster'. From his cell in
the Bastille, the Marquis de Sade produced a life's work which still
terrifies society today, chiefly because it goes against this very
rhetoric. De Sade continually returns to the idea that his heros and
heroines – a jolly bunch comprised chiefly of rapists, thieves,
gluttons and murderers - are by definition not only natural but an
incarnation of the violence, unfairness and indiscriminate make-up of
nature itself. It is the society around them, with its restrictions
and hypocrisies, that is unnatural. And all things considered, for
all our protestations about the 'natural' goodness of humanity, he's
got a point. Millenia of history tells us so - rape, murder and
paedophilia have existed for as long as we have. They are no less
human than we are; indeed, they are by very definition human traits.
Trouble is, as a wise poet once said, our poor human souls cannot
bear very much reality; the idea that we are in such perpetual
proximity to the violence of nature is a pretty scary concept when
you've built a civilisation on suppressing it. So just as we corset
our natural landscapes into cities, we continue to squeeze animal
instincts into an unnatural model of 'humanity', ram our fingers into
our ears and carry on.
2. THE MAD PERSON. This term was and is still applied to all manner of societal pests, including de Sade, but also the Suffragettes (who were also, somewhat predictably, 'unnatural women') and, most recently, Anders Breivik. The word 'mad' is an interesting one. Although it is still used to reject the traits of the labelled person, unlike 'unnatural' or 'monstruous', there's a hint of derision in there too. You don't laugh at a monster. You don't dismiss one. A monster is a threat, to be feared and slain as soon as possible. A madman, though? A madman might be dangerous, but he does not inspire the same fear. You can definitely laugh at a madman (witness the pay-per-view sideshow that was the Victorian asylum). In colloquial English, something can be 'mad' if it is ridiculous, or unexpected. Laughter and derision allow us to dismiss a threat without necessarily needing to purge it in the same was as we would an 'unnatural' monster.
3. 'ILL'. This innocuous little syllable is by far the most problematic of our defences against the undesireable in our midst. It gets pulled out of the hat routinely once the outright rejection of the 'unnatural' and derision of 'madness' have failed to keep the undesireable at bay. It's a final hurrah of an attempt to keep a taboo on its last legs wheezing through another generation. To illustrate: it is 60 years ago exactly that a man who played a central role in my being able to type this and you being able to read it, father of computer science and creator of the Enigma machine Alan Turing, took his own life. He had been arrested for homosexuality, and chosen instead of going to prison to accept 'treatment' for his 'illness' in the form of chemical castration. Shortly afterwards, he dipped an apple in arsenic. Gosh we've come so far, haven't we? As far as..oh yeah, as far as extremist Christians proposing the advertisment of 'gay therapy' on our public transport. Oh good. (That's a bit faecetious, clearly we have in fact come a long way since Turing's time, but it's worth raising the point that this unspeakably destructive philosophy is still alive and well in relation to something as fundamental as one's sexuality.) The most poignant example of the use of 'illness' to describe the undesireable, however, is currently Anders Breivik. There's been much speculation surrounding the mental state of the perpetrator of the 2011 Norwegian massacre, with the press – always suckers for a good ol' psycho killer, let alone a white supremicist one to boot – getting stuck right into the juicy headline-generator that is a potentially schitzophrenic Nazi. So far, so standard. Then King's College psychiatrist Simon Wessely went and kicked up a heck of a buzz amongst us mental health scenesters by going on the record stating that Breivik does not in fact show symptoms consistent with schitzophrenia. He goes on to say that society 'comforts' itself with the erroneous idea that horrific acts must be linked to - if not the direct result of - mental illness. For this, Simon Wessely, I love you (call round sometime; there can be cake. And gin. How we'll laugh, putting the world of mental health stigma to rights!) Schizophrenia is one of those conditions that most people have heard of, but have very little real idea about. People often confuse it with multiple-personality disorder, or simply think of it as big, bad, scary and definitely Proper Mental (which makes it a handy term to chuck about if you want to make someone sound bad, scary and Proper Mental). A recent study showed that the perception of sufferers of psychosis (one of the defining features of schizophrenia) as violent has more than doubled in prevalence since the 1950s. In reality of course, those with schizophrenia are in fact significantly more likely than the rest of us to be victims of violent crime. Far from being calculating agents of destruction, they also experience high incidences of homelessness and isolation, in great part due to the fact that the active psychosis is the third-greatest cause of disability, topped only by quadriplegia (total paralysis) and dementia, and followed by paraplegia (partial paralysis) and blindness. It is, to put it lightly, a nasty, nasty thing to suffer – after my limited brush with psychosis I cannot imagine existing with the kind of terrifying hallucinations it induced on a day-to-day basis, let alone doing so whilst holding down a job, paying rent and 'engaging with wider society'. It should come as little surprise, really, that pretty much anyone who has ever experienced a psychotic episode will tell you that once in its grip, they are far more likely to be found cowering under something, trying to shut out the voices and the visions and/or smoking themselves into an even earlier grave than their 15-year average reduced life expectency and 5% increased suicide risk would suggest, than going at anyone (other than themselves) with a knife. Still less, reasons Simon Wesseley, meticulously planning and executing a massacre.
A couple of final thoughts on the 'ill label': firstly, one of the most worrying thing about it is that as soon as we call something an 'illness', we also suggest that it can be 'cured'. This has allowed societies to carry out all manner of horrific 'treatments' from lobotomies to the chemical castration suffered by Turing. Indeed, in the case of 'undesireable elements' such as homosexuality and severe mental illness,'cures' have historically owed much more to the philosophy we adopt during wars and executions – ie. a 'purging' of a the undesireable. It's really no surprise that the group mentioned above who recently proposed to advertise 'anti-gay therapy' on the capital's buses call themselves the 'Cure Issues Trust'. Secondly, the Breivik debate has thrown up an oft-mooted opinion that labelling a criminal mentally ill excuses their crimes to an extent. I would argue the opposite. The 'illness label' does indeed serves as an excuse, but it is not the 'sufferer' who is excused, it is the rest of society. Society declares that the 'ill' person is not like them; they are an aberration. They are 'unnatural'. It's a neat loophole which allows society to acknowledge the actions of the 'ill' person whilst keeping them safely outside of the definition of 'humanity'. Society at large is thus 'excused' from the possibility of being 'ill', of being 'unnatural'. The effects of these attitudes are unbelievably damaging to those who suffer with de facto mental illness. To tackle the 'cure' issue first of all: my bipolar is not something I can cure. It's something I can't change, and which – as I've blogged before – is as fundamental to my makeup as my hair colour. What I'm doing is learning to live in partnership with it, not purge it out of myself. Just like when nutritionists tell you to listen to your body and feed it what it needs, I'm in the process of listening to my brain, and learning to give it what it needs to work as well as it can. And if I say so myself, it's not functioning too shabbily at the moment. But to the problem of society 'excusing' itself from Freaks Like Us: in addition to the woeful misrepresentation of severe mental illness via the SCHIZO NAZI HAS SKY IN JAIL-style headlines we're subjected to on a daily basis, it's this action of 'excusing' that keeps us firmly in the box marked 'undesireable'. Admittedly, we've come some way since the days of Bethlem, but it won't be until we address the myth that we stand outside of society because of our conditions that real progress will be made. Being 'ill' is just that – being ill. It is what it is; we have our episodes and we manage them as an epileptic would manage their fits. We are not to be feared, or pitied, or laughed at. Actually, scratch that; I don't mind the laughing so much – I have been known, at the height of a high, to iron the socks of everyone in my shared house at 3am. A relative was convinced that there were friendly aliens hiding in the trees outside her flat. If you can't find humour in that, I probably don't want to be part of your society anyway.
Tuesday 24 April 2012
#googleeffect: mental health and employment prospects
In response to today's
#googleeffect discussion on Twitter, sparked by this blog post by Erica Crompton on the Rethink Mental Illness site re: how being open about one's
mental health may have an adverse effect on employment prospects.
I studied languages as an
undergraduate, and as my year abroad approached, I applied for the
popular British Council Assistantship scheme along with the majority
of my peers. The scheme is the preferred option for the year abroad
amongst language students the length and breadth of the UK and has an
acceptance rate of something in the region of 97%. Being the young,
naïve bug that I was, I declared my mental health history to date in
the relevant box of the application form, attached the requisite
medical documentation and sent it off. I then got on with what any
self-respecting Francophile would do, namely lounging around in cafes
smoking Gitanes, and daydreaming about the soon-to-be-realised
prospect of lounging around in cafes smoking Gitanes in my adopted
country, prefarably whilst being propped up by wistful wisps of men
named Jean-François.
A short while later I received a
lengthy email from the admissions team which I have abridged for your perusal below:
...as your application stands at the moment, there is a serious
question mark as to whether the French authorities will accept it.
The fact that a candidate suffers from or has suffered from drug
overdose, anxiety and depression is something which any school
employing a language assistant will require clear information about
before they consider making an offer of appointment as all language
assistants are in charge of classes of young people.
We will need a full report from the psychiatrist who treated you
(giving the cause and history of the depression, and including
details of the drug overdose), as we feel this will clarify the
situation from the French authorities. Without this report, we cannot
be sure they will accept your application.
I would very much appreciate it if you could ensure that the
psychiatrist’s report reaches us no later than 31st
March. You must be prepared to meet any charges this report may incur
yourself, since I am afraid the British Council does not have any
funds for this.
You can probably
guess what the outcome of the tedious exchange that followed was.
Needless to say, I was indeed deemed a risk to myself and others, and
the French authorities did not see fit to accept my application.
Incidentally, I've since tutored French to young people with learning
difficulties, become an ESOL mentor to a refugee and her child, and
currently work as a bilingual nanny, the proceeds of which are
funding my training to teach English as a Foreign Language. To the
best of my knowledge, I've yet to scar a pupil of any age too deeply,
although I am teaching the Five Kinds of Conditional this week, so
I'll keep you posted. As for my year-abroad adventures, I managed
to find a French university that would have me and, amongst other
things, signed up for every theatre course going and found myself
part of a trilingual troupe performing in France and Germany. To
those who are as concerned as I was with the pressing effect of my
rejection on my and Jean-François' nascent love affair, I can also
safely report that I didn't do too poorly in this regard either.
Not bad for a year's work.
The effect that
the exchange with the BC did have, however, was to drive me deeper
than ever into the MH closet. It confirmed my suspicions that being
honest about my health would lead to being viewed with suspicion
(what I like to call the susp-vicious cycle, ho ho ho). It also
played a part in ensuring that I continued with the TRH approach
(Trying Really Hard Not To Be Crazy, see down-blog), which, as anyone
who has attempted it knows, does not have a tendency to end well.
It is my belief
that until we reach a point where mental health issues such as mine
and the thousands of others in similar situations are understood as
what they are: chronic, manageable conditions, we will not see and
end to the attitudes displayed in the correspondence I received
above. The fact is that, whilst we must applaud the much freer and more open discussion of mental health over the last 20
years, there still exists a great deal of fear and ignorance around what
certain conditions really entail. The words 'bipolar' and
'psychotic', for example, are often used to dismiss a person's
behaviour, to set them outside the acceptable norm and label them as
weird, or scary. As soon as we do this, as soon as we allow
ourselves to give a knee-jerk reaction to a convenient buzz-word, we
are essentially giving the OK not just to rejecting a person but to making them the subject of derision and, often, of ridicule. Scratch the surface of the email above, and it's
not hard to fish out a couple choice examples: equating a suicide
attempt to a “drug overdose” is poorly worded at best; however,
implying that depression and anxiety could lead to my causing harm to
my students is woefully ignorant. Similarly, the idea that all
depression is subject to the laws of cause and effect, rather than
being simply a state in which one exists for variable periods of
time, betrays a lack of common understanding of a condition affecting
a sizeable percentage of the population.
Given these attitudes, it comes as no
surprise that many people choose, like me, to blog anonymously. To those who waive their anonymity, I salute
you, and I hope that in the not-too-distant future there will be no
need for any of us to fear the stigma to which open discussion of our
conditions might give rise.
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