Friday, 30 November 2012

MIND campaign for better crisis care...

Mind are currently campaigning for better care for those experiencing a mental health crisis.  This is my contribution; my own experiences of crisis care and a few thoughts along the way...

I have experienced mental health services in two different counties and crisis care has been next to non-existent in both.  The worst occasion involved being told I was a “waste of time” and to “just go away” by a nurse in A&E, after being taken there by concerned police officers.  This was a few years ago, and since then my treatment in general has improved (due to changes in treatment criteria) so I will focus on the more recent and relevant experiences of 'crisis' care.

One thing that really sticks out is the futile, circular nature of trying to access crisis services, especially out of hours.  For a start, it seems that everyone you speak to tells you to call someone else – GP, Crisis Team, A&E, the Police.  In my experience, this does not lead to any support, yet if the person/service you speak to is actually concerned you may be at risk, they resort to calling the police rather than offering any help directly.  The police can't do anything except take you to A&E to be assessed, perhaps under a section 136. I have been assessed many times in A&E by the Crisis Team, who talk to me for a bit, raking up all sorts of upsetting things from the past and dismissing any present issues, and then send me on my way.  If I'm in a particularly anxious state I might be given a sedative or two to take home.  The ridiculous thing is, the Crisis Team always say “call us if you need to”, yet it is usually them who have called the police in the first place when I rang up in crisis!
I have also spent nights in police cells when the crisis team had refused to see me but the police were too concerned to just let me go.  In addition, I have been held in the '136 suite' on several occasions waiting for assessment.  Although the daytime room there is fine, the room for overnight is basically a cell – a plastic mattress on the floor and a toilet in the corner, without the basic dignity of somewhere to wash your hands after using it.  Both here and the police cells are the last places anyone in crisis should be.  Also, there is usually a lengthly wait to be assessed wherever you are – the longest I waited was eleven hours (under section so couldn't leave).

I feel my experiences of crisis care are particularly unfortunate, as they have actually contributed greatly to my present mental health difficulties.  I have nightmares and flashbacks of these occasions, and seeing things that remind me of them sends me into a confused, anxious state.  Seeking help involves going back to the places that I associate with feelings of despair and terror, meaning I often feel I would take my own life before seeking professional help in a crisis.
Fortunately I now have some good, understanding friends who I can chat to or just be around if I'm feeling vulnerable.  And that, I think, is key – someone just showing some humanity and compassion makes all the difference.  There was a security guard in my local A&E who chatted to me whilst escorting me outside for a cigarette, and his kindness helped far more than anything the Crisis Team did.  All too often basic care and respect is lacking in professional crisis care.  I always wonder – would they treat me like this if I was a member of their own family or a friend?
I have, very occasionally, spoken to very helpful members of the Crisis Team who have listened to me, empathised with my situation, and encouraged me – without being patronising or dismissive of the pain I feel inside.  This makes so much difference, and doesn't really cost anything, especially when the longer-term costs of an escalated crisis are factored in.

Finally I would like to mention a concept very relevent to crisis services – 'failure demand'.  Failure demand basically means a service fails to do what it is supposed to, causing even more demand for the service.  I believe this is rife in mental health services; people cannot access appropriate help and support and so get more unwell and need more help in the long run.  In particular, a failure to provide adequate, useful treament means people end up in crisis far more often.
I think that addressing the reasons people end up in crisis should be part of the discussion on crisis care – could a crisis be prevented with earlier intervention or support?  After all, prevention is better than cure; and in these times of austerity and cutbacks, I'm sure it would be much cheaper too.  

Friday, 3 August 2012

Just a Thought

In the aftermath of the Aurora shootings the media are picking apart the tragedy, exploring various aspects such as gun ownership and violence in films.  This is all accompanied by appropriately reverent quotes and mourning for the deceased, and less reverent photos of the carnage and grieving relatives (thank you Daily Mail). 

Without doubt, this is a tragedy.  Friends and relatives of those who died have suffered hugely traumatic losses, and the whole community has been shaken. 
However, my first thought as the news stories began to break was feeling sorry for the gunman.  This was worrying – am I a messed up individual who relates to psychopathic killers more than their victims?   After much pondering, I think the answer is no (sigh of relief all round).  However, I do think it's something to do with relating to the underdog.  More specifically, the misunderstood underdog.  Now I am not suggesting that this particular bloke is a traumatised, misunderstood little lamb, and certainly not at the expense of the horror that has happened.  However, I'd like to step away from that story specifically and look at the whole thing more generally. 

There is something I find incredibly irritating about the reaction to this kind of atrocity.  Mainly, it's the public outpouring of grief.  Not the genuine, heartfelt distress from media-harassed family and friends, but a sort of jumping-on-the-bandwagon from everyone else.  I think the UK may be worse than the US in this respect – the death of Princess Diana being a notable example.  However, in the bloke-with-a-gun type massacres, this response seems... oh I don't know... hypocritical.  On the one hand, you have an individualistic, consumerist society that indicates you are worth as much as your bank balance; a society that alienates and excludes people, especially those that don't fit into the narrow definition of 'normal'.  In the US you also have an awful lot of people that frankly, are probably not to be trusted with guns yet can legally own them.  On the other hand, when it all goes horribly wrong, people seem not only shocked but surprised.  People can be cold, cruel and heartless with impunity, yet certain acts are seen as horrific and terrible without any consideration of cause, effect, and a sort of sliding scale of evil.  I think it's best summed up in the lyrics of Jack Johnson's 'Cookie Jar': 
It was you, it was me, it was every man
We've all got the blood on our hands
We only receive what we demand
And if we want hell then hell's what we'll have

Next, there is the way the perpetrator is unmasked as being an oddball, an outcast, someone who's always been different; obscure people from their past are dredged up to confirm this.  They are the bad guy, the freak who blighted the lives of good people.  Now, how many 'oddballs' have you met?  How many people who could be described as being different, strange, a loner, or whatever else?  And how many of those people have gone on to commit murder?  This labelling just seems to be a way to see the perpetrator as different, 'out there' and as far removed from 'normal' people as possible.  This was highlighted for me in the wake of the Cumbria shootings two years ago, when one newspaper painted a picture of the killer as a pathetic loner who still lived with his mother, comparing him to his successful brother (one of the victims), who was well-off with a house to match.  But what if the brothers' roles were reversed?  They'd probably have described the killer as a greedy rich man and his brother as sacrificing his career to care devotedly for their elderly mother. 
Anything can be distorted to fit the desired narrative, and the desired narrative is utterly black-and-white.  The bad person vs the good people.  The freak who spoils it for the rest of us.  It's as if they are to be feared and ridiculed for being different as much as for the crimes they've committed - which leads to perfectly harmless 'oddballs' being inadvertently scapegoated too. 

It seems to be a sort of collective defence-mechanism, to pin all the blame on the individual rather than face the monumental task of unpicking the wider faults in systems and society.  Whilst I would like to think that most people, when pushed, would not opt for mass-murder (though they might if ordered to, as Milgram's notorious 1961 experiment revealed), the question remains as to whether individuals who commit atrocities might not have done so in different circumstances.  I believe that anyone who commits such an act is mentally disturbed – perhaps not under current definitions, but something has clearly gone very wrong somewhere along the line.  It all gets quite complex and philosophical at this point – how much our choices are affected by past experiences, the old nature vs nurture debate, and so on.  But still, these questions should be asked.  There are lesser crimes and other undesirable behavoiurs that aren't criminal, yet still cause a huge amount of pain and grief for people.  I've no doubt that people who commit atrocities have suffered in these ways, and while it's not an excuse it does go some way to explain the reasons.  But no, we keep on setting it in black-and-white terms and all the other stuff is swept under the carpet while we point the finger and it's all about freak bad people.

On a personal note, I think this stuff really gets to me because I have often felt like 'the underdog' myself.  I know what it's like to be misunderstood, judged and labelled with life-changing consequences.  It seems there are certain things that are practically universally 'entitled' to compassion (losing a loved one, for example), whilst other situations that may cause untold distress are disregarded.  It also depends on how an indivudual expressess their distress – many may not recognise how to to do this in a constructive way, or do not have access to therapists or counsellors.  Again, it comes back to the good people who are allowed (rightly) to be outraged and upset when they are hurt, whilst the hurt they may have inflicted on the bad people is ignored.  It's just not fair.
It's time to look beyond the labels and recognise human distress in all it's forms - only then can we start to do something about it.

*** I started this post over a week ago, and in the meantime more information has come to light, including the fact that James Holmes (Aurora killer) was seeing a psychiatrist***

Sunday, 8 July 2012

We're All Different (Except Me)

I was having a little think the other day about how I have always felt 'different' to other people.  It goes back as long as I can remember, although I wasn't consciously aware of it until I was 18.  I actually remember the moment that everything seemed to swirl into focus, and I realised I was just the same as everyone else.  In that moment, I suddenly realised that I'd unthinkingly viewed myself as 'different' my whole life.  I felt I wasn't as good as other people, and that I was somehow 'faking it' if I fitted in or succeeded at anything.  I guess I also felt a bit like I didn't deserve nice things to happen to me, even ordinary, everyday nice things.  I couldn't imagine being 'in love' and loved in a relationship, or having a professional job.  I couldn't imagine anything – my future seemed to stretch out in front of me, dark and empty.  There were plenty of things I wanted to try, or was interested in, but I just couldn't actually see myself doing them in real life.  I guess I felt like things wouldn't work out for me like they did for other people.  My peers seemed totally confident looking at careers, doing work experience, and writing university applications, whereas I felt out of my depth and terrified.  Oddly, I also felt much older and somehow wiser than others. (What I mean by 'wiser' is that I seemed to think things through more – see my previous post.)
Anyway, even after the insight into my essential 'normalness', I still feel different to others sometimes, in all the ways described above.  As if I will never quite fit in, despite outside appearances.  I always feel really pleased whenever someone expresses an interest in spending time with me, or compliments me, as if it's another tally on the scoreboard of 'accepted' vs 'unacceptable'.

So, after thinking through all this, I decided to have a little trip around Google to see what strange unreliable hyperbolic useful information I could find on the subject.  There were four main things that repeatedly appeared as explanations for feeling 'different' from other people.

1) Depression –
Well, yes.  All boxes ticked.

2) Indigo Children –
Hmm.  While I think the New Age theory of Indigo children/adults (supposedly 'old souls' who are intuitive, sensitive to others, and here to guide humanity towards a more enlightened way of living) is complete tosh, I found it remarkable how I fitted the description precisely.  My own personal take on it is that there are some people who are simply more creative, intuitive and sensitive than others.  I do think these people have traits that are obviously good for humankind, whilst also rendering them misunderstood by others – feeling 'different'.
I was also intrigued by criticism of this theory, which suggested that the described traits are too broad and could include almost anyone. From Wikipedia:
Many critics see the concept of indigo children as made up of extremely general traits, a sham diagnosis that is an alternative to a medical diagnosis, with a complete lack of science or studies to support it.”
While I don't believe in 'indigo children' I found this criticism a bit unfair, and weirdly parallel to criticism of psychiatric labels.  It seems perfectly possible to have none of the 'indigo' traits, or only one or two – just like psychiatric diagnoses.  Both are unscientific in that you have to draw a line somewhere – enough 'symptoms' and you've got it, too few and you haven't - rather than looking at it as a sliding scale.  And once you are put in a certain box, there are a whole host of theories suddenly applicable to you, and in the case of a psychiatric diagnosis, a raft of 'treatments' to help you get back to 'normal'.
The suggestion that it is “an alternative to a medical diagnosis” is particularly chilling.  We are right, they say, you are wrong.  You don't have special gifts for humanity (regardless of indigo beliefs or not), instead you have “an imbalance of chemicals in the brain” or “personality disorder”.  You shouldn't feel things more than other people, even if the flip side is caring for others more.  It's not a gift; it's an illness.
I guess the small thread I'd pull from the Indigo Children idea is that some traits can be really positive, but often cause problems in the sort of world we live in.

3) Borderline Personality Disorder –
Really, really annoyed this one came up, as I try to distance myself from this damaging label.  Whilst I am certainly on some kind of 'sliding scale' I definitely do not tick enough boxes to qualify as having BPD.  Yet I get to have the diagnosis hovering nearby and all the associated stigma and prejudice anyway!  There's a fairly widely held theory that people diagnosed BPD are naturally more sensitive, thus get 'messed up' much more easily as children, and later appear to overreact to situations because they are actually feeling such strong emotions.  The 'feeling different' thing would make sense here, with a large dollop of the 'gift' idea I mentioned above.

4) Autistic Spectrum Disorders –
Definitely not me.  This is mainly because I am quite good at recognising others' emotions, second-guessing what they're thinking, and picking up on subtle social cues (sometimes to the point of being over-sensitive). ASD's are partially defined by the inability to do these things.  Interestingly, there is a school of thought that suggests Borderline Personality Disorder (an entirely emotional problem, surely?) is actually an autistic spectrum disorder.  As there is plenty of evidence that people with BPD are actually more sensitive to other people's feelings, this seems to be complete rubbish, of the sort spouted by psychiatrists who look at 'symptoms' of behaviour without bothering to find out how the person feels or thinks.

So there we go.  I have one-and-a-bit reasons for feeling 'different'.  Judging by the large amount of search results, and the way the search term popped up as soon as I began to type, I am not the only one who feels 'different'.  Which suggests that maybe we're not so different, after all...


Monday, 25 June 2012

Must Try Harder

I can't remember when I first learned of depression; it was certainly before I ever considered I might be suffering from it, and before I had internet access to find answers easily.   I imagine the early filtering through of information came from posters and leaflets read out of boredom whilst waiting for doctor's appointments.  From this, I knew it was unhelpful to tell the person to “pull yourself together”, and that someone suffering from depression already felt useless and guilty so you needed to be nice to them. 
These two things seem pretty obvious to me.  If someone is depressed, they clearly can't “snap out of it”, or they presumably would have done so already.  Depression is, by it's very nature, no fun whatsoever.  And anyone suffering in any way is surely deserving of sympathy and support.
Apparently it's not so obvious to most people (including mental health professionals).  The same tired and unhelpful old assumptions just go on and on; people don't even realise they're doing it.  For example, people are always suggesting to me that I do things to help me feel better.  This irritates me beyond belief, because:

  1. I already do that and their suggestion subtly sweeps aside my efforts as worthless.  I know when just getting out of bed is a huge achievement; they don't. 
  2. They always suggest activities that are basically living everyday life – things like getting a job, socialising more, or taking up running/swimming/anything else that feels like climbing Everest when you're low. 

If I could do these things, I'd be fine!  The reason I don't do them is not because I am unimaginative, lazy or stupid.  It's because I feel exhausted, physically lifeless, struggle to concentrate, find things more effort than fun, and can't keep a fake smile plastered to my face at all the required times.  I'm not sat around twiddling my thumbs, bored and depressed, for want of a hobby.  Actually, I'm not bored at all, and certainly don't lack hobbies.  I'm just putting in a lot of effort for what seems like little return, trying to feel moderately ok whilst taking hours to keep on top of things like laundry, eating healthily, and not ending up being dragged to A&E by police.  I think I'm actually doing quite well, in my own small way, and suggestions for further action, however well-intended, just leave me feeling like I've got a to-do list the length of the Amazon, which is totally overwhelming and means I actually end up doing even less. 

I am constantly frustrated that otherwise kind and understanding people fail to grasp this.  It's the whole point (for want of a better word) of depression.  What gets to me especially - and I have been pondering this lately – is that other people seem to do the most silly things, whilst bumbling along quite happily and dealing with the eventual fallout with ease.  For me, the stakes are too high. I have to carefully consider every decision I make – and have learnt over time what is a good idea and what is not.  (A friend actually commented the other day that I am “quite sensible”, whilst incredulous at various unfortunate, unlucky situations I've been in.)  So, in terms of what people do with their life and the decisions they make that affect their happiness, I'm actually doing pretty well, and am in relative terms, it seems, quite wise (and oh-so-modest!)   Yet these same people who make silly mistakes in their own lives view me as someone who's just not trying very hard, or possibly is not clever enough to figure out what to do.  Even some mental health workers I've had the bad luck to encounter seem to be displaying signs of personality disorders that should render them ineligible to work with vulnerable people, let alone make judgements of them. 

I sometimes wonder if everyone actually has the same amount of 'depression potential' or whatever it'd be called, and it just manifests differently.  Some of these things are recognised as being linked to mental health – substance abuse and obesity, for example.  But what about things like having a messy house, eating erratically (though sensible weight), being racist/sexist, or generally a bit of a tosser?  These things aren't considered 'essential' by society in the same way as, say, holding down a job or managing to go to the shops without having a panic attack.  So theoretically, if I gave up bothering about certain things or caring about other people, would I have more resilience in dealing with other things?  Do I use up all my self-discipline and energy on things considered less important by society?

I've heard people being described as so depressed they “can't hold down a job”.  Yet for me, a job is the first thing that goes.  Having to be somewhere at a certain time, able to concentrate, not allowed to break down in tears, etc etc, is hard!  Yet I can keep my flat and myself relatively clean, and try to eat healthily, and don't turn to alcohol...
Do I have my priorities wrong?   Does society?

What really bugs me is that I'm the one asking for help from mental health services, I'm the 'broken' one, whilst others might be making all sorts of mistakes or living in a selfish way, yet perfectly 'fine'!  I want to yell at psych-types: “Give me some credit!” and point out all the sensible decisions I've made, not to mention the bad luck I've had too.  I suppose it's to do with the stigma of mental ill-health, and the blaming attitude towards certain diagnoses from mental health professionals.  If they decide you are not 'mad' (floridly psychotic), they automatically see you as 'bad' (attention-seeker, not trying hard enough etc).

I'm not really sure what conclusions to draw from all this, except that the mental health services are as messed up as those they treat, and their job is basically to make these individuals function in a messed up world.
On the plus side, I suddenly feel a lot saner!


Tuesday, 12 June 2012

First Post...

Have been dithering over my first blog post for some time.  This is partly because technical hitches setting up the blog and fiddling round with fonts etc has provided hours of procrastination and taken the edge of the 'new project' enthusiasm.  Of course, this isn't a 'project' but an outlet for thoughts, frustrations and reflections, but I have to constantly suppress the creative perfectionist tendencies that can take over.   Note to self: repeat ten times - “Blog is an outlet, not a masterpiece...”

The second and main reason for the delay in posting anything is that my rant-o-meter is swinging wildly all over the place, as the mental health services differ in their attitude towards me.  I set up this blog when it seemed all hope of treatment/therapy was lost, but as soon as I began expelling my wrath and disappointment in the form of a post, they suddenly became very helpful.  Rallying the forces after this unforeseen development, I started writing about my general thoughts and issues with psychiatry and mental health service provision, only to find myself becoming increasingly annoyed at and disillusioned with them and their previous attitude towards me.   I say 'previous', but this attitude seems to be indelibly, eternally etched into my notes; misunderstanding (wilful?) laid upon misunderstanding.  It causes mental health types to ask me some odd questions as they try to reconcile the person on file with the person in front of them, as well as a marked change in tone of voice over the phone whenever they get my notes up in front of them.   I sometimes worry that in future I might suffer from a rare disease, and instead of investigating it, I'll just get fobbed off as a mental attention-seeker. 
(Incidentally, whenever I imagine my psychiatric notes, I picture a huge bundle of yellowing, torn pages held together with chains, insulting words carved into them with a scalpel, sat forlornly on a trolley between dusty shelves of rustling paper.  They probably have dart-holes in too.)

Anyway, I digress; the point is that I am now wondering whether I'm actually better off out of the system. I've been reading “Users and Abusers of Psychiatry” by Lucy Johnstone which is very enlightening, although guaranteed to get the blood pressure up.  As well as being very skeptical of the mental health system, I'm also very aware that they may drop me due to a life situation (more in a moment) that would probably be labelled as non-compliance.  So I'm in a sort of non-committal, inbetween world whereby I don't want to hope for therapy I will never get, but also don't want to burn my bridges in case they may actually be helpful or I need them in future.
It really seems like it has to be one or the other though – I can't slink off, let down and hopeless; I need to be able to stick two fingers up at them, finding my own way on, knowing I tried the other way and it wasn't the answer.  I suppose what I mean is that it need to feel like a positive choice.  Obviously if they do help me, there is plenty of room for healthy skepticism, but I would need to embrace therapy to get the most use from it.
I guess I'm secretly hoping I'll just somehow get better during the next year without needing therapy, that somehow my reflections and insights will eventually all join up and complete the parts that make me struggle to function.  However, I'm not sure how likely this is, and I'm also going to be putting myself in a situation somewhat removed from everyday life so will likely appear to be fine when that may not be the case.  This is because I am going travelling (yey!) at some point over the winter.  It seems like a very good idea for my mental health to be off with the backpack again - all that soul-searching under the stars and whatnot.  Only now, of course, the mental health services are finally responding to my pleas for help (approx. 20 months after the initial GP appointment) and it will look like I am:

a) Completely irresponsible, immature, and unwilling to commit to a treatment plan, or anything for that matter (they would probably use the phrase 'not engaging with services')  
b) Trying to 'run away' from my problems (as if you can run away from problems in your mind!)
c) Obviously not really struggling, an attention-seeking waste of time as they previously thought.

With regards to the last one, I can see it seems odd that I can trot off to foreign lands when basic things here day-to-day seem so hard, and I have spent many hours musing on why this might be.  As it is, even planning the trip is making me happier although only marginally improving what I manage to do each day - probably because of the crippling tiredness I feel.   Still, when I am away I can still sleep when I want, socialise when I want, etc, etc – but with the added bonus of sunshine, exciting/entertaining experiences, and new and interesting people.  I don't know really, but if I could crack the puzzle and apply it to my everyday life, I'd be sorted.  I think it'll require further thought and a follow-up post...

Anyway, I am hoping the mental health services will understand my reasons for going away for a bit (and hopefully see I am a mature, sensible person who can make compromises within a healthy, balanced relationship..!), and I will be able to get therapy when I return.  Even better, that I magically get better (or at least slowly get better via insights as mentioned) while I am away and hereafter lead a worthwhile, productive and fulfilling life.
Or something like that...