We Are

I write this having been inspired by attending the History of Mental Health conference at Leeds Trinity University earlier this week.  This was a joint venture between the British Psychological Society’s History/Philosophy of Psychology Section and the Critical Psychiatry Network.  If you know me or have followed my views in this blog, you’ll be aware that this is right up my street!  The observant among you will notice it’s been a wee while since I’ve posted here - aside from being busy with uni work, I’ve also been writing a few bits for OMQ Fitness & Wellness magazine - so this was the perfect prompt for me to add some fresh material.  I hope you find it a good read.

A key theme over the two day conference was that of the epistemology of mental health: What constitutes knowledge?  Where and whom does it come from?  How is it developed?  Who decides which knowledge is good or best or right?  Given the theme of the event, a large proportion of the delegates would argue that too much credence is given to the knowledge of ‘experts by training’ (psychiatrists and so forth) and not enough to ‘experts by experience’ (those who have experienced mental health difficulties and their relatives & friends).  A very balanced view was given by keynote speaker Gail Hornstein, who suggested no type of knowledge or expertise is superior, but that the two need to become more integrated and be used together, not separately, to best support people’s mental wellbeing.

This notion of separation and fragmentation was another theme that cropped up a lot in my mind over the course of the two days.  Fragmentation between those ‘with’ and ‘without’ mental health problems; between ‘experts’ and ‘patients’; between the ethos of recovery and the obsession with quantitative evidence that underpins funding for services and research; between people’s actual experience of distress and psychiatry’s explanation for it.  I strongly believe that if we can build a more unified, inclusive approach, we can in turn build a stronger mental health system and ultimately a heathier, happier, more productive society.  

To illustrate my thoughts, I first cast my mind back a fair few years, to when I read The Psychopath Test by Jon Ronson.  In hindsight, this was probably my very first taste of critical psychiatry.  I was struck by Ronson’s statement that he had been able to diagnose himself with about 6 ‘mental disorders’ by reading the DSM.  As far as I can remember, I didn’t do a great deal of thinking about this fact at the time, but some years on I’ve become a lot more familiar with this field, and my professional interests have become somewhat consumed with addressing the over-pathologisation (yep, I think I made a new word up) of human experience and mental distress.

One of my favourite things about the conference was a section that encompassed accounts of mental distress from a range of sources.  A key message was that psychiatry’s depictions of and explanations for mental ‘illnesses’ are often very different from those that the individual can make sense of themselves.  Related to this, another key point was that making sense of distress is a process that can take many years, and sticking alabel on it therefore simply doesn’t work (at least not for the labelled individual, or indeed their loved ones).  A third key theme was the need to consider mental distress on a case by case basis, because each occurrence of it is as unique as each person who experiences it.  Putting someone in a category based on your perceptions of their experience isn’t conducive to helping them recover, whereas supporting them to understand their unique experience is. 

To further illustrate my thoughts, I turn to the words of Caitlin Jenkins, who at the event presented her research on service users’ experiences of psychiatric diagnosis, along with snippets of her own experience (she herself has received more than her share of psychiatric diagnoses and treatments over the years).  She noted there is a danger of seeing a person as a series of notes, rather than as a person.  One of her participants spoke of how a diagnosis gives rise to a particular treatment; if that treatment doesn’t work, another diagnosis is given, and so on.  This resonates with my own concerns that psychiatry arbitrarily tries to fit people into boxes in a way that doesn’t facilitate true insight into their experience or therefore how to help them.  This got me thinking about something that’s crossed my mind on occasions before: what would a psychiatrist have to say about me if they had the chance to observe my life or conduct an assessment on me?  I have a few ideas as to how this might go, and present them here with alternative explanations from my own viewpoint.

Lauren’s mood has been variable over the last two weeks; she moves between being bright in mood and full of energy to being low and withdrawn, sometimes within a single day.  These mood swings do not appear to be related to any particular events but happen spontaneously.  At time of writing, Lauren is experiencing a depressive episode; she is staying at home more regularly than usual and neglecting to partake in all of her usual activities.  Previous to this she was showing signs of mild mania; her lifestyle was somewhat chaotic and she presented as being obsessed with completing as many different activities as possible within each day.

I often experience ups and downs in mood, sometimes to a greater extent than others, but see that as a normal part of human experience and manage it accordingly.  Sometimes I do feel like my changes in mood are happening for no particular reason, but I can usually identify the causes in hindsight if not at the time. I’m quite self-aware as I practice mindfulness, so can usually recognise my mood changes quite quickly and look after myself well to keep on top of this.  Over the last couple of years I’ve had ups and downs with my physical health, which I seem to be getting better at managing.  I thrive on being really busy and active and have realised that I tend to feel healthier physically as well as mentally when I keep this up, so when I feel good I make the most of it by doing as much as possible.  I’m really ambitious so not one to waste time!  However, it’s really important to recognise when I need to take things down a notch.  I recently had a spell of feeling poorly for a few days and responded to my body telling me to take it east by having a rest week.  This meant I did gentle exercise rather than my usual intense, structured training, and spent the rest of my free time relaxing at home.  After a few days of this I felt much better and more myself.

Lauren has been persistently non-concordant with her medication.  She expresses paranoia and delusions that it will be harmful to her and do no good, and that the whole mental health system is one big conspiracy.  Lauren becomes highly argumentative when staff attempt to explain the benefits of her treatment and why she needs it.

I have no desire to take brain-altering drugs that will cause a multitude of unpleasant and potentially harmful effects.  Ultimately, we don’t really understand exactly how these drugs work and what their effects are on the body long-term.  There is no real difference between these drugs and illicit ones, except that psychiatric meds have been packaged and marketed in a way that implies they will fix some sort of problem or deficit, rather than as psychoactive substances (which they are).  Because I feel so strongly about this, any discussion about psychiatric meds is likely to end up quite heated; not least if someone is trying to get me to take them! 

Lauren has been very low in mood and withdrawn today.  She has refused to spend time with others and spent a lot of time isolating herself in her room, doing nothing.

I meditated a lot today, which made me feel very peaceful and at one with myself and the world.

From my experience working in a psychiatric hospital, I genuinely believe that my fictional patient notes above are quite a realistic representation of what might be written about me if I were unfortunate enough to be subjected to this.  The problem is that once you’re in a mental health service, the system seems to be hell-bent on giving you a diagnosis, and this is really difficult to shake.  In Caitlin’s research I mentioned above, one participant noted how a diagnosis is given, which gives rise to a particular type of medical treatment, and when it doesn’t work, another diagnosis is applied, along with a change in medication, and so on.  This resonates with me from my experience working in mental health, where new diagnoses and medication combinations appear to be flung around in a sometimes arbitrary, trial-and-error type of manner.  In my fictional situation above, I can see how my diagnosis might have changed to try and fit my presentation at each time, perhaps from bipolar disorder to paranoid schizophrenia to major depression, and no doubt over a number of years of ‘failed’ attempts at treatment and defiance of the system probably ultimately some sort of ‘personality disorder’.

I’ve talked before about how I feel that my determination to take good care of myself has really helped me to stay mentally well.  When I feel things are not going so well, I take the time to understand why this is and work out a way of remedying this.  I am very fortunate that I have always been able to do this with just myself and my friends & family for support, but I am all too aware of the many people who need extra support from mental health services to get well.  Unfortunately, the approach to mental health that has developed over the years jumps straight to medical solutions, with room to explore and work through distress being reserved for the lucky few that are able to access such services, or a kind of bolt-on to medical treatment.  At the conference that prompted me to write this post, I was inspired by the story of a mum who had seen her son go through acute psychosis, which she and he were helped through by support from SoteriaBradford.  He had been prescribed a variety of antipsychotics, none of which had relieved his distress, and the thing that really started to help him was a therapeutic approach called Open Dialogue, which he and his mum engaged with as a family.  This is a long process that requires concerted effort from therapist, patient and their families, but by engaging with this process they were able to identify factors that had contributed to his declining mental health, which ultimately supported him to come through the psychosis.  As a family they recognise that this may return at some stage but are confident that by accepting it and working with it rather than trying to force it to be silenced pharmaceutically, they can cope when this occurs.  Interestingly, there was no major trauma leading to his illness, but a culmination of elements of life and how he perceived them that took their toll. 

The point I’m really trying to make here, and the reason for the title of this post, is that, simply, we are all human, and could do well to remember that more often.  In her talk at the History of Mental Health conference, Gail Hornstein talked of how we’re always placing ourselves and others into categories – patient or professional, expert by experience or expert by training, those needing support or those offering it.  In reality we all have various roles and identities we fulfil and usually sit on a spectrum or fit within multiple categories simultaneously – if we can embrace this, perhaps we can achieve more than we would’ve done otherwise – for instance, Peer Support has become quite buzzword in the mental health arena, yet it is a term reserved for a relationship between patients and other patients.  Why not apply peer support to the staff too?  Surely they need support as much as those they seek to help, both in terms of professional development and looking after their own wellbeing?  And, indeed, to return to my original point about epistemology (where does knowledge come from?), professionals could do well to accept that patients may be able to help them too, and offer knowledge about their condition that no diagnostic label could ever hope to shed light on.

Patient-centredness is supposed to be at the heart of mental healthcare these days, yet still so many people within services don’t feel listened to or supported effectively.  As an example, those wanting to prioritise losing weight or giving up smoking are often told “let’s get your mental health sorted first”, rather than trusting that this person intuitively knows what they need and may see improvements in their mental health as a result of working on their own personal goals.  Using this innate personal knowledge in conjunction with, rather than in opposition to, the knowledge of healthcare professionals, could be a powerful tool in helping people to recover and master their own wellness in a holistic way.  An anecdote from my own work comes to mind here: I work as a Wellness Coach, supporting people to make lifestyle changes around weight management, physical activity, smoking and alcohol.  We recently had a client who the staff member that initially spoke to believed needed intensive mental health support, as he reported having used such services extensively in the past.  On speaking with this person myself and exploring in more depth what their priorities were, it turned out they felt getting more active was exactly what they needed in order to improve both their physical health and mental state.  This sits perfectly within my remit as a coach, whereas others might have pointed him in the direction of a mental health service, not fully understanding what it was that he wanted to achieve.  After a few weeks of working with him on some basic goal setting and action planning, he was feeling much more positive, in control and ready to move on with this healthier new lifestyle without ongoing support.

I could talk about this forever, but I’m aware that I’ve already gone on a bit and may be pushing my luck in terms of keeping or losing your attention!  If you’ve read this far then thanks for persevering.  I just want to end by emphasising my message that being human is a powerful thing, and I believe that by nurturing this fact – by always bearing in mind that ourselves and others are, simply, human, and relating to ourselves and each other as such (rather than as categories, diagnoses and so on), then we can cultivate recovery, wellness, happiness and achievement of our potential.  This can be far more powerful than what can be achieved by constantly striving for the perfect labels to separate ourselves off into various boxes.  We are human, we can grow and develop by understanding ourselves and being understood by others, we do have the capacity to recover and heal from trauma, and we will build a happier and healthier society by nurturing these qualities of humanity.

Angel With A Shotgun

I want to start by acknowledging the emotive and controversial nature of some of my recent postings, both here and via Facebook/Twitter.  I have attracted some criticism and resistance, which I fully expect as it goes hand in hand with having strong and somewhat less-than-conventional views & opinions.  It is true that I sometimes speak in extremes, present things as more black & white than they really are, and make bold statements.  This is because I so strongly feel there are things that need to change radically, and this won’t happen if the status quo isn’t challenged fervently and compellingly.  This is why I write in an emotive and zealous style: my aim is to inspire positive change and innovation, or at least persuade people to think a little differently about certain things. 

The result recently has been what might best be described as an attack on psychiatry in my writing, elements of which may come across as vindictive (or indeed false) to some readers.  I accept this fully, but have no real qualms in light of what I’ve just explained.  I will listen to anyone who has something to say on the matters I write about, which is why I’m always so keen to invite comments on my posts!  I know there are many different perspectives on the things I discuss, and that it would be possible to present more balanced accounts than the ones I offer.  This is not least because the very issues I am passionate about are particularly complex and sensitive ones. 

Most poignantly, I have recently experienced criticism for making the bold claim that, essentially, there is no such thing as mental illness.  I realise now it was unwise to make such a statement in isolation as there is a hell of a lot behind it and it sounds incredibly insensitive (This said, all it takes is a look at a text such as The Myth of Mental Illness by Thomas Szasz or Cracked: Why Psychiatry is Doing More Harm Than Good by James Davies to see where this point comes from).  The post in question was a Tweet reading: “So... If #mentalillness was actually a thing, it wouldn't be called 'mental illness'.  It would just be called 'illness'... #foodforthought”.  The abruptness of this claim was mainly because of Twitter’s less-than-generous character limit for Tweets, but also partially because I indeed intended to make a bit of an unconventional statement to get people thinking. 

What I have to stress, first and foremost, is that this does not mean I don’t see mental health as important, or believe that people in mental distress are in desperate need of help, or that their difficulties aren’t genuine; in fact, these things could not be more opposite from the truth.  I simply see mental health in a different light to the conventional medical one, which unfortunately results in a bit of alienation from my field of work, since the accepted approach is largely medical.  I advocate non-medical approaches, which are seen as dangerous and unsupported by evidence by some of my colleagues.

I have to say that I absolutely, whole-heartedly support the notion of evidence based practice.  Who wouldn’t?  To base care on knowledge of what does and does not work is the obvious way forward.  However, inasmuch as one might criticise ignorance of elements of the evidence base, it is equally negligent to take such evidence at face value.  We should be especially concerned with the presence of ‘publication bias’, which is more prominent in some fields than others, psychiatry and pharmacology included.  Publication bias occurs when those who review a research paper for publication may be keen for a positive result to make the journal more readable, or prefer papers that match their own views & findings, and so on.  It also occurs when researches manipulate their data or change their original research protocol retrospectively to make their hypothesis supported, when their original tests did not achieve this.  

 

There is considerable evidence for the existence of publication bias and this has been shown, for instance, to inflate the efficacy of psychiatric drugs and diminish  their harmful effects.  It has also led to evidence of completely non-medical and very successful approaches to psychosis being hidden.  In case you’re interested, I am taking my facts here from peer-reviewed sources!

If we couple this with the incredibly unscientific basis upon which the diagnostic criteria for mental illness are put together, we have two of the key reasons I largely reject the biomedical model of mental illness.  This post isn’t the place to go into detail about diagnosis (see my post Freedom, and more to come in the future), but I’ll say this small piece for context:  Whereas physical illnesses are discovered by the presence of some sort of physical marker, for the vast, vast majority of mental illnesses, such physical markers are absent and the diagnostic criteria declared by psychiatrists, albeit based on well-founded patterns observed in behaviour, etc. 

The above is why I suggest ‘mental illness is not really a thing’.  As soon as a clear-cut biological cause is discovered for a mental illness, it becomes a physical illness.  In other cases, the ‘illness’ gest removed from the repertoire of psychiatry (homosexuality as a prime example).  Hence, there is no need for the distinction.  Mental distress is a different thing to illness.  It is caused by a combination of many things, such as trauma, environment, socio-economic factors, and perhaps elements of biology.  But the lack of distinct biological markers makes mental illness clearly separate from physical illness. 

For these reasons, I feel psychiatry has gone too far in its medicalisation of mental distress, which is why I am fighting hard for a move towards less medical approaches.  I do not see it as any less important to support and help people with mental health difficulties than any of my colleagues do.  In fact, it couldn’t be more important to me.  Allow me to use some lyrics to illustrate:

They say before you start a war

You’d better know what you’re fighting for

…

I’m an angel with a shotgun

Fighting till the war’s won

I don’t care if Heaven won’t take me back

…

Sometimes to win

You’ve got to sin

Don’t mean I’m not a believer

My motives and intentions are good and pure; I know what I’m fighting for and I know it’s right.  Why would I open myself to criticism, even the possibility of resentment, from people I admire, like and respect if this weren’t the case?  It’s tough, even heart-breaking, to experience this, but I cannot be acquiescent; I absolutely have to do all I can to make things better.  This means perhaps sinning against my own profession, but I do this in the knowledge that what I’m doing is good… a bit like an angel with a shotgun! (Except I’m not big-headed enough to describe myself as an angel!)

It is difficult to explain all this in a way that’s concise and means people will get where I’m coming from, but I hope I’ve gone some way to making my position and the motives behind my actions clear.  I would love to hear from you whether you agree with my outlook or not, and look forward to lots of productive work, debates and discussions with colleagues, friends and new acquaintances in the coming months and years.