Sunday, 19 January 2014

Marsha Linehan at UCC. "Real Change is Possible"

Last Friday I attended Marsha Linehan's lecture at University College, Cork.  Dr. Linehan is Professor of Psychology at the University of Washington, Seattle and is best known as the originator of Dialectical Behaviour Therapy. She has recently opened up about her own struggles and how they led her to develop the therapy, which is largely based on mindfulness, acceptance and the facilitation of  change.
Professor Marsha Linehan

DBT and me
It's more than ten years ago that I came across the work of Dr Linehan. I had been hospitalised in St. Patrick's in Dublin and had been held for five days in the euphemistically titled "Special Care Unit". I took the opportunity that the nurses' station was unmanned to have a peek at my file, that was lying on the counter. I got the shock of my life when I saw that the box marked "diagnosis" was marked "borderline personality disorder". At this stage I had been a mental health patient for eleven years and a psychiatric patient for six years. This was the first I'd heard tell of borderline personality disorder. I was vaguely aware that such a diagnosis existed but knew little else.

I came down to Cork that weekend and took myself to Q+2 and the medical section of the UCC's Boole library. I took a couple of books on borderline personality disorder and started to read up but it wasn;t until a second visit a couple of weeks later that I took out Linehan's book "Skills Training Manual for Borderline Personality Disorder".

This slim, A4 book, comprised mostly of photocopiable worksheet changed my life, as it has changed the life of thousands of others.  The change was twofold. On the one hand, for the first time ever, I felt some-one got me. Up until that time my diagnoses had been schizophrenia, anorexia or depression (although my last consultant in St. Patrick's did concede that he could find no evidence I suffered from any of these conditions). I had read books on all these conditions and while some of it fit, most of it didn't. Linehan's descriptions of the borderline patient struck a resounding chord. So did her discussion of the invalidating family. Looking back, I don't think I fit the prototype nearly as neatly as I thought I did, and of the three family types Linehan describes, I'd say mine fell mostly within the "Normal" parameters.

The essential was that here was some-one saying that the way I was acting was understandable and explicable, instead of merely deviant, mischievous or psychotic. And she offered hope that I could change. Change had never been a possibility within my treatment within the psychiatric system or from any counsellors I had attended, There was a polarity in their attitude towards me. On the one hand I was nuts, seriously ill and in need of constant medication and frequent hospitalisation. On the other, I was totally in control of myself and should just do what I was told and stop being such a nuisance. There was no future. There was no reality. The problem, as far as they were concerned, was my reluctance to obey, to concede and to comply.
DBT Venn diagram

Here, in DBT I found tools that I could use to make things better.  The whole thing was structured around four key skills : mindfulness, interpersonal effectiveness, emotional regulation and distress tolerance. I followed them as closely as I could. I made homework cards for myself and completed them, even though no-one ever corrected them. I photocopied all the worksheets and filled them out religiously. I copied sheets like "Cheerleading statements for Interpersonal Effectiveness" and pasted them on the inside of my bedroom door. I made myself do something daily from the Adult Pleasant Events Schedule.  I tried to practice willingness instead of wilfulness.

It's debatable how well I succeeded in all of this, given that I had no-one to guide me. It was hard but this was another benefit of the book; the book acknowledged that this was hard. Up until that time things I had been expected to do, or wanted to do, fell into two categories A) Easy, I should be able to do them, and B) Impossible, I should just give up. Living at home, staying away from certain people, giving up things I enjoyed, staying in hospital, being grateful: these were easy things. Going back to college, living independently, being medication-free, going back to the radio station where I had been a volunteer: these were impossible things that I should give up on.

DBT gave me a handle, a manual to do things that were hard but worth doing. The immediate impact on my quality of life was dramatic, although it would be some years before I actually moved out of home. Most of all was the inward comfort and confidence I gained from the knowledge that some-one, somewhere, even though it was half-way around the planet, understood my situation. Some-one knew that things other people found easy, I found hard, and that it was this difficulty and not some faulty wiring that made my life the mess it was.

I ordered Linehan's other book, "Cognitive-Behavioral Therapy of Borderline Personality" on-line and found even more comfort there. Take for example Linehan's debunking of the assumption that borderline behaviour is "manipulative."
"my own experience in working with suicidal borderline patients has been that the frequent interpretation of their suicidal behaviour as "manipulative" is a major source of invalidation and of being misunderstood. From their own point of view, suicidal behaviour is a reflection of serious and at times frantic suicide ideation and ambivalence over whether to continue life or not. Although the patients' communication of extreme ideas or enactment of extreme behaviours may be accompanied by the desire to be helped or rescued by the person s they are communicating with, this does not necessarily mean that they are acting in this manner in order to get help."
Somewhere else in the book (I can't find it but am sure it's there) is the line that has influenced me most of all. I'm paraphrasing because I can't find it but I'm fairly sure it goes something like. "All attempts by the patient to use "mental illness" to explain or justify her behaviour should be rejected".

UCC Lecture

So imagine my excitement when eleven years later I hear that Dr. Linehan's coming to UCC. I had to attend the morning session for "service users" rather than the afternoon session for mental health professionals. (I wonder if my consultant attended the afternoon session. He was the head consultant in the Cork hospital that I attended and at our last meeting in out-patients I told him I had found a new approach that was working. I said I was reading the work of Marsha Linehan. "Who's she?" he asked. "An American psychologist". "Hmmph".)

The title of Dr Linehan's lecture was "Real Change is Possible". Here is something that works. That takes people out of the psychiatric system. That builds lives worth saving. That if the HSE implemented properly would save hundreds of thousands of euro and potentially millions. In fact I will say millions as the saving involved in giving people effective treatment -  as opposed to prescriptions, out-patient appointments and infantilising OT - is threefold. Less is spent on inpatient stays, less of visits to A&E and less on medication.

DBT costs more in the outset. Patients receive psychotherapy from a trained professional and also attend meetings where they are coached in the key skills. Having both individual and group sessions facilitates one of the dialectics of the therapy's title; the dialectic between being flexible and responding to what's going on at the moment and being consistent and following protocol. DBT also has a specific and prescriptive response to suicidal behaviour protocol, which rarely involves locking the patient in the nearest secure psychiatric ward.

The difference between Linehan's approach and the Irish model is striking. She said at one point "I wouldn't let fear rule my treatment" when I remember fear being a major driver in policy. Fear of us killing ourselves, fear of their being sued if we killed ourselves, fear of our committing criminal or quasi-criminal acts, fear of us, fear that we'd escape, fear that we'd stop taking our medication or object to taking our medication.

"I Have the Right to be on Earth"

Linehan defines this concept of having a right to be on Earth as "essential validity" and said that affirming it is of major importance. Again, when I think back, even though my psychiatric team were very strong on the idea that killing myself was a bold, inconsiderate thing to think of doing, their behaviour towards me did nothing to instil the feeling that I had a right to be on Earth. They didn't recognise my right to be free, my right to wear clothes, my right to autonomy over my body, my right to fresh air and the feel of sun on my skin.

In the original "Skills Training Manual" Linehan writes that DBT is not a suicide prevention programme but a life-enhancement programme. This distinction is crucial and linked, I feel, to the concept of essential validity. Suicide prevention sounds vaguely coercive. It's about stopping some-one doing something, forcing them back into a life that may not be worth living. A life where you don't feel you have the right to be on Earth is no life.

A part of the lecture I found particularly interesting was when she discussed suicidal thoughts. Thinking about suicide is extremely common, far more common than parasuicide or completed suicide. "Thinking about suicide" is a behaviour in and of itself. It's a behaviour that is practiced because it is soothing. It is soothing because it presents an alternative reality and also because while you're thinking about suicide, you're not thinking about your problems.  Linehan compares the practice of thinking about suicide to a drug. I can relate to this; when things get bad I find myself thinking about suicide. Not that I'd do it, just that thinking about it brings relief.

I didn't ask a question at the lecture but if I had, it would have been this, and I'd appreciate your views on this in the comments. Can we apply the idea of thinking about suicide being a displacement activity to society as a whole? Take the recent RTE coverage of suicide, something I've referred to in a previous post. This coverage was embarrassingly simplistic and made several unwarranted assumptions: that all suicides are calculated choices, that undiagnosed mental illness is a major factor, that there is plentiful "help" available were people not too feckless to bother asking for it.  Take also the plethora of voluntary organisations with suicide in the title. The awful radio ads urging us to choose life, not suicide as though one were Tesco and the other Lidl.  We have anti-suicide cycles and anti-suicide bumper stickers and are told frequently that we need to "break the silence" and have lots of chats about suicide.

But I wonder; when we talk about suicide are we putting off talking about our problems? When we shake our heads and mutter about how awful it is that so many young people don't just ask for help, or think of their families, are we avoiding asking the hard questions. When we put the entire responsibility for reducing suicide onto the shoulders of GPs and the psychiatric system, are we abdicating our own responsibility? I lost count of the number of tweets I received over Christmas telling me to call the Samaritans. That could be because of the type of tweeter I tend to follow, but still. 

Hard questions might include what is wrong with our psychiatric system when involvement with it is a factor in so many suicides? Other questions might be how we look after children in their infancy. Are we too quick to refer troubled teens to the GP? Might it be a good idea to reverse the cuts to school guidance counsellors? Is anyone ever going to come out and categorically say that children should not have televisions or internet access in their bedrooms? Why are we still so slow to acknowledge the scale of child sexual abuse? Why does our economic system leave so many able-bodied, capable young people surplus to requirements?

Success

The fundamental goal of DBT is not to prevent suicide but to build a life worth living. When you consider how much is involved in this, how long it takes, the costs involved you see that by side-stepping "suicide prevention" DBT faces up to some of the problems and indirectly, saves lives. It isn't a panacea of course and has had very limited success with, for example, Post Traumatic Stress Disorder.  There may also be patients for whom it will never replace medication, but can still help them lead a life worth living.  Its major successes, apart from the original borderline personality application have been in Substance Abuse (87% success rate), major depression (68%) and eating disorders (64%). Interestingly, Linehan sees depression mostly as a behavioural issue, like taking drugs or being anorexic, rather than a mysterious fog that descends for no apparent reason.

A pilot project is currently running in Cork and there is hope that DBT will be rolled out across the country. I would hope that it is not customised too much to fit in with current (mostly dreadful) practice. I hope it will not be adopted in a lacklustre fashion on the grounds that "nothing works with these people". The fact that so many clinical trials have been conducted will hopefully bring the medical people on board. This could be a huge shift in psychiatric policy. Let's hope so.



Saturday, 4 January 2014

A Mental Health Problem...Or a Life Problem?

The last few days have seen a lot of commentary on young people and suicide. Opinions have been polarised. On the one side we have those who see youth suicide as a willful, sulky act of throwing in the towel at the first of life's storms, on the other we have those who see youth suicide as the inevitable outcome of untreated mental illness. One side maintains that there's a plentiful supply of helpful help, if only those pesky kids would 'fess up to their positivity deficit. The other other calls for more resources, more counselling, more understanding that mental illness is just the same as physical illness, best treated through therapy and medical care.

 My own view that people, mostly adults, have used the figure of Donal Walsh to hide behind, and from his shadow to finally say what they've always privately thought; that people who commit suicide are selfish eejits. Or maybe the word eejit is too kind. That people who commit suicide are morons, or callous, heartless individuals who put their own feelings before those of their families.

Donal Walsh was an intelligent and articulate young man.  That his poise and bravery were mixed with the simplistic world view of an adolescent makes his statements and his television interviews even more, not less, poignant.

I watched this interview on Youtube, having heard it discussed in the staffroom and it felt like I had been slapped in the face. Not by the child in the interview chair, but by the credence given to his views by the host, and by extension, the national broadcaster. Donal's own life, his own story and his own experience, including that of the substandard conditions in Crumlin Children's Hospital, should have been ample material for the interview. But RTE were greedy : the conflation of  teenage cancer and teenage suicide made for television gold. Why, if you wanted to discuss suicide on a talk show would you choose as your guest  a very, very young person, who has had no immediate experience of the issue and who has issued a public statement that makes this inexperience clear? Why? Where was the voice of reason? Nowhere in the building, and not working in the HSE either, given their unfathomable notion that it'd be a good idea to show a video (which features Shutterstock pictures of good-looking models "living life")in schools. Yes, in schools, to schoolchildren many of whom who had lost an immediate family member to suicide. Who might have been thinking thoughts along those lines themselves. Thoughts that the video neatly alliterates as "tough times".

The Saturday Night Show is an entertainment show, and O'Connor is a chat-how host and journalist, not a psychologist or health-care professional. That some-one, somewhere in the HSE thought that video was a good idea and enough people agreed that it was a good idea, is astounding. It can lead only to the conclusion that they share the views of the RTE production team. The views that people who commit suicide are clueless morons who are unaware of the existence of mental health professionals. I've only just watched that video, only learning of its existence on @ancailinrua's blog. It's chilling. The voice over wouldn't seem out of place in a Sensodyne ad. "We've all known the pain of toothache...."

I have kept quiet on this issue, feeling in common with many others, that it's a bit out of order to be pointing out the flaws and over-simplification of a teenager's views. The Irish instinct  to "mol an oige.." is based on sound reasoning as is "ni thagann ciall roimh aois". We are held back even more by the knowledge of Donal's tragically young death.

But it is this reticence that those who throw stones from behind Donal Walsh's shadow were counting on. People who relished the opportunity to "ditch political correctness" and call those selfish morons what they are. The tables are turned now, they might say in glee. Now it is the naysayers, the people who say "now, hang on, let's not get carried away" who appear to lack compassion, or even decency.

So I'm a bit late in commenting on this, though it's been on my mind on and off since May. I've never listed "courage" as one of my attributes and I'm wrting this on the coat-tails of other commenters, most notably this article by James Cussen.  Also of note are http://insertingpotatoes.com/2014/01/oversimplifying-mental-health-issue/    and http://ancailinrua.com/2014/01/03/donal-walsh-and-suicide-whats-missing-from-the-debate-and-where-do-we-go-from-here/  .

I'm going to take a slightly different note from these commenters who have all focused on the lack of understanding shown to those with mental illness, and on the assumption that suicide is a "choice". There is another assumption at work here. The assumptions evident in the material from RTE and the HSE are that mental illness doesn't play a part in suicide, but the counter-assumption seems to be that mental illness is the only factor in suicide. That all people, including young people, who commit suicide, or attempt suicide, or even think about suicide are mentally ill. Even if they don't realise it. The solution in their minds is more services and resources for medical therapy; psychotherapy (particularly Cognitive-Behavioural Therapy) and/or drug therapy, but definitely therapy.

I've thought a lot about my own experience of suicidal feelings in the past few days. I attempted suicide on two occasions. One at twenty-two and again at twenty-four. I was a bit older than the target audience of the "Live Life" video but still fairly immature. The first occasion was just after I'd been discharged from my first stint in a psychiatric hospital. Release from psychiatric hospitalisation is one of the life-events most associated with suicide. Not just because of the obvious link (and there is a link, I don't dispute that) between mental illness and suicide but because the transition into the outside world is excruciatingly painful. Hospital does not prepare you for the outside world. It prepares you for hospital. My first admission was like an induction into the life of a mental patient; I learned fast (I'm a quick learner) how to comply, how to agree, how to demonstrate "insight" into my condition, how to cope with the quick-slow-slow-quick-slow pace of my brain on medication. The shakes. The weight-gain. None of these skills are any use in the real world. In fact, they're a hindrance. When I asked my consultant for a diagnosis, she said "nervous breakdown". I'm not sure what she wrote in my notes.

The second time was two years later. I wasn't officially a patient then but I'd attended A&E the previous week after, well, let's call it a parasuicide event. This time I was determined. This time I'd get it right. Except I didn't. Now I can say "thankfully, I didn't". Then it was more like "oh no". I'm not going to say I was mentally ill. Does that mean that I'm accepting that what I did was a choice? That I was just a spoilt child who couldn't appreciate the gift that my life was? Did I try to put an end to my days, as the French say, because I was too lazy to ask for help, or was it, as so many otherwise intelligent people seem to suspect, because I didn't even know that there were services designed to help me?

A driver in my attempt was my terror of those same services. The terror of being locked up, without my freedom, without my clothes, without any say in what happened to my body. Another driver was the guilt I felt, and the bewilderment, that if what everybody had always told me was true, that I had a good brain, and everything going for me, and the world was my oyster, then why was my life such a train-wreck? Why couldn't a be a credit to my family instead of a drain and an embarrassment? I could see my friends all about me, "living the life" as we said back then, a grim precursor of the HSE's facile slogan. Why was I so useless? I had messed up and gotten on the wrong track, there was no going back. My future would be one of hospitals, doctors  and dole queues, and in the end I'd die young anyway, because I'd kill myself. I'd kill myself anyway so I Might as Well get it Over With. That night I don't think I could imagine a future even of hospitals and treatment. I'd had a falling out with some-one on whose good opinion I had staked what was left of my self-worth. I was empty. Telling me to "ask for help" would be like telling a stranded motorist to just drive to the nearest petrol station.

In the end, after years of revolving door admissions and countless failed medications, they concluded that I didn't have any identifiable mental illness. I was just "emotionally immature". I had "issues". How then did I end up so long in the system? Because I decided as a teenager that I needed help, I went looking for help and being the bookworm that I am, by the time I got help I'd internalised the symptoms and signs of what might be wrong with me. There was definitely something wrong with me, I felt.

To get back to that night, when I was twenty-four, and to paraphrase Nigella Lawson,  I don't think I had a mental health problem. I had a life problem. I didn't need therapy to retrain my negative thinking or drugs to rebalance my neurotransmitters. At that stage my life was in such poor repair it needed a complete over-haul. My life was a mess and needed complete remodelling. No-one's been able to do that but me, and it's taken a long time. I have a therapist that I see occasionally, when things get tough, but it's to help me cope, not to "fix me".

I'm sure there are young people today who are in situations similar to the one I was in. Where diagnosis with a health problem is the last thing they need. There is a tendency to extrapolate from an adult's reaction to receiving a diagnosis to that of a child. The adult's reaction to diagnosis is one of relief. It gives hope that once identified, their illness can be cured. Also, as we age, more and more of our contemporaries have health complaints. It's no biggie. To a teenager the opposite is true. Diagnosis is not a relief, but confirmation from a trusted source, that they are, indeed,  "different". That there's something wrong with them. We need to tread really, really carefully and only diagnose mental illness in young people where there is justifiable cause. Framing "tough times" thoughts as mental health problems can exacerbate the problem. Mental illness because of physiological causes cannot have increased so much in the past few years, unless there's something in the water they're not telling us about, and so cannot be assumed to always be player in suicide. Cussen writes that there are other causes of mental health problems, such as racism and homophobia, but surely there the mental health problem is in the mind of the prejudiced person. If some-one discriminates against me, mocks me, or makes me afraid to live life as who I am, I am almost bound to suffer psychologically. This suffering does not give me a mental illness.

One of problems of  the mental health approach to psychological distress in young people is that it's a case of one-size-fits-all. Many young people just need some-one to talk to. Maybe just once, maybe some-one to just listen and not offer any advice whatsoever. For these young people talk about mental health is premature and uncalled-for. Talk about a mental health problem and it is sure to appear. Put the idea of depression in the minds of young people and the next thing you know they're logging on to www.reach-out.ie and finding out all about it. Have the designers and promoters of these websites never heard of the confirmation bias?

For other young people at risk of suicide, framing their problem as a health issue is treading too lightly. A health issue is something that you tackle while trying to get one with the rest of your life as normal. A young person's distress could be from a much bigger source than his or her own physiology: from a home-life lived in the shadow of addiction and/or violence, from a history of abuse, from a failure to learn the basic skills of living. Defining the situation as one of mental health locates the focus inside the young person himself or herself. We have to ask very, very seriously if this is helpful.

We have to ask the question; is this a mental health problem or is this a life problem? Life problems can be small, or massive. They can be temporary and self-limiting, or they can be permanent.

When I was in secondary school we had a religion teacher with a great video collection. Week after week we'd watch films with a message in the av room. Most were true-life movies and one that sticks in my head is the story of a carefree teenager who jumped off a pier into too shallow water and broke her neck. Being paralysed taught her valuable lessons and the last scene showed her addressing a huge lecture hall, from her wheelchair, telling the audience how they should live. There was no discussion afterwards but I remember being deeply unsettled by the film. What was its message? There was another film about a boy who was deaf. It seemed to me even then that we were given the message that our health was a kind of defect, that kept us from real understanding. We should think very carefully before we hold up those afflicted by great difficulty as role models for young people who have yet to encounter much difficulty at all. We should look first to our own lives, our own example, our own example and testimony lived out every day in front of them.

I would much rather that instead of a video campaign telling young people to cop themselves on and thank their lucky stars they don't have cancer, we could see a campaign aimed at parents and teachers reassuring them that their own empathy and understanding is more than enough, more often than not and that mental health services are there as a last resort, not a first port of call.

And if we've learned one thing from how social media-users have reacted to the "LiveLife" campaign is that Mental Health Awareness has the capacity to decrease empathy levels and nip maturing faculties for compassion in the bud.












Wednesday, 1 January 2014

It's 2014 :-) Let's Make Some Resolutions

As eagerly welcomed as a two weeks overdue baby, 2014 has arrived. Finally and this year I am bucking the world-weary trend of "resolutions don't work" and "it's the wrong time of year really, studies show you should wait til Spring" ( studies, schmudies, there's always one that'll show whatever it is you want to hear), I am undertaking not one, not five, not ten but twenty-eight New Year's Resolutions. Twenty-eight minor laws against my unruly self, as Alain de Botton describes them. A resolution, he writes, is "is a voluntary abdication of our freedom and immediate gratification in the interests of a higher goal.  As such, it is a symbol of civilization, defined as an institution which regulates our wilder, more destructive desires for the sake of the common wealth and our own flourishing."

Rather than list them all here, because some of them are none of your business, I shall outline the basic premise. The twenty-eight resolutions are made up of three sets of nine resolutions and one Overall Resolution; a kind of One Resolution to Rule Them All. So we have:

9 Resolutions that are Daily Actions.
9 Resolutions that are Weekly Actions
9 Resolutions that are Monthly Actions

and The Big One, which this year is that I solemnly undertake to Trust my Own Intuition. It's not that I will refuse or ignore all advice, rather that I am going to give myself the biggest say, and the final say. There is not greater regret than the feeling that I should have gone with my gut. Intuition doesn't have to be a fleeting thought, it can be the result of bothering to do some research, or the result of following my own principles. I quite like  Jeanette Winterson's resolution that "you don't have to play by other people's rules but you have to play by your own."

The Daily Actions are the most boring, but also of course the most effective. Some are not new at all, but resolutions to continue with things I've been doing like the 10-minute tidy-up. Others are to do with health like "Do some form of exercise" and "Cook a proper dinner, which by definition does not come from the chilled-food cabinet". I'm postponing giving up Diet Coke until Lent, but do resolve to drink more tea. And to feed and hydrate my mind by reading fiction and anything not shelved under Self-Help.

Weekly Actions will perhaps be the hardest to stick to. I've included going to the gym, which I re-joined yesterday. I know I really should be going more than once a week, this is only in there as a minimum. Another weekly action is to check in on the numerous on-line dating sites of which I'm a member. This is a chore but You Never Know. And to carve out time for myself to write. Carve out of what? Empty space half the time. So first I must fill the time before I can start the carving, because it is doing stuff besides working, sleeping and tweeting that provides the raw material.

So what am I planning on doing at least once a month? Buying a real, new novel or book of short stories and reading it. And leaving the county. The county is here defined as anywhere that under and hour's drive from my house. It's amazingly easy to let weeks and then months go by without leaving it.  But I resolve to cross the county bounds at least once in every calendar month. I'm in the lucky position of living in a small city, set within a big county. Small cities are great; there's enough to do, a good variety of distractions, ample consumer opportunities (although these have come to be dominated by the British multiples) and easy access to the seaside. It's urban, just about, but still the country in lots of ways.  But it's not Ireland, and there's lots to see and do out there, and people to visit who don't live here, or even near here. I'm undecided whether to count going abroad as leaving the county, but I think I won't count it as the months I leave the country also tend to be the months I've more than enough time to leave the county as well.

Thee are my humdrum resolutions. Wish me luck, motivation and resolve. I've also decided to go back to Gretchen Rubin's idea of monthly themes. This month's Theme is Waste and the reduction thereof. Will let you know how I get on.