The Elephant in the Room

…or perhaps the ‘PDtoOT’ in the room?

I’ve just returned to university to start my second year. I began the week looking forward to a year that might suit my learning style better as it’s more focused on critical thinking and appraisal of information. I’ve also had my first experience of mental health specific lectures, which have given me a lot to reflect on and are the catalyst for this post.

Before I begin I must state that I don’t believe my university is intentionally causing stigma, nor is every lecturer/workshop leader ‘guilty’ of what I’m about to describe, but I do feel that my experience this week highlights problems. I also am conscious that the topic of stigma in mental health is such a giant topic, and many of the questions floating around my head of ‘WHY are we (society) so scared of talking frankly about this?’ are too big to be considered entirely in this post, so I shall stick to my university experience.

What happened? (Albeit, in my subjective experience)

My university, thankfully, is normally very good at challenging use of language that encourages stigma. Terms like ‘Mrs X suffers with bipolar’ and ‘Mr Y was a schizophrenic man I saw on placement’ will usually be noticed and corrected. That said, I’ve heard it be said and remain unchallenged in several sessions this week. I did challenge a friend on the matter and it was met with a response of ‘Oh’. I’m not sure if, when these issues were mentioned in our first year, people sufficiently understood the effect of this use of language. I suspect some felt they weren’t allowed to use the terms without understanding why it is reductionist and encourages a victim-projection into the client.

‘Them and us’ – I was very relieved, after the majority of a lecture had been spent referring to ‘them’ (as shorthand for people with severe and enduring mental health problems), when another student raised the point of the challenge of considering vocational rehabilitation for ‘them’ when it would contain so many people with different life experiences, never mind varying severe/enduring mental illnesses. The lecturer did validate this point, however I don’t feel it was sufficient after a whole morning where I felt this client group were being considered as a very separate group, that had to be handled with kid gloves and the therapist must have very low expectations of achievement. It felt like the client-centredness approach was entirely absent. For some people a successful OT intervention may result in a small period of voluntary activity each week, but for others this would be significant failure of the rehabilitation for that client. If the lecture had been discussing physical conditions I think the expectations of what an individual can achieve would be much higher. Of course, I am aware that for some mental health problems will prohibit a return to work, but unless we are brave enough to imagine people recovering enough to lead ‘lives worth living’ I fear the profession will not help people achieve the full extent of recovery that is possible for them.

I was glad that we were encouraged to share preconceptions about mental health problems and, for those that had been on a mental health placement, how they had changed after placement. As I discuss below I value an open and frank discussion, but this all felt one-sided. Yes, the point that fears that people with mental health problems were violent was discussed as unfair, but the point was not elaborated on to increase understanding about what the reality is. For those in the room that have this preconception all they now have to go on is the knowledge that one student doesn’t believe this is true, but no understanding as to the reasons violence may happen, or about clients that would only ever inflict violent acts on themselves, or even the many clients who will have significant mental health problems, none of which involve violent behaviour of any sort. This is a point I feel can only be delivered by service-users, to truly impart understanding of the reality of mental illness and how it influences behaviour.

My final issue relates to the ‘them and us’ issue raised above. The times I felt myself cringeing most in the lectures were when I felt that people with mental health problems were being patronised, either by staff or students. I’m not sure why anyone feels this is appropriate or helpful, but comments like ‘x struggled with ;, bless him’ are not ok and actively encourage stigma. If a soldier who had recently had a limb amputated was finding a self-care task challenging I seriously doubt they would be patted on the head and told, ‘ah, bless you’. I also sincerely hope if they were finding the same task difficult due to Post-Traumatic Stress Disorder they wouldn’t be treated in this way, but after this week I’m not entirely confident of this. Again, it feels like validation of the capability, resilience and skills of clients with mental health problems is not sufficiently present.

Am I more sensitive as an ex-service-user?

I actually feel that when mental health matters are discussed in an open and frank matter, without any trace of ‘tip-toeing’ around the subject, I am no more sensitive than any other person (and possibly far less than many people). I don’t mind if people ‘get it wrong’, I also don’t mind if people have strong opinions or judgements, so long as both they and I are able to have a discussion in which both parties can express their opinion and attempt to listen to, and understand, each other. I have delivered teaching to psychologists and counsellors in which I was asked directly if my self-harm had been manipulative or attention-seeking. This did not upset or offend me, it simply pleased me that people felt able to ask directly and listen to my response.

I struggle more when I feel lectures are delivered in a way that encourages stigma and misunderstanding, due to an overly sensitive and patronising delivery. I tend to go quiet rather than offer an alternative opinion, perhaps indicative of how unhelpful and silencing such an approach would be with clients.

I am mindful of the fact that I do find myself slipping into criticism of my university regarding a somewhat incongruent approach on their behalf. I have attended lectures that highlight the poor statistics for return to work for people with mental health problems after long period of sick-leave, and discussed intervention strategies that highlight the employer’s role in allowing an adjusted return to work. This is the first point in my life where I have been able to consider full-time work for 9 years, and the area of my life that still limits my performance is a very poor sleep pattern due to re-experiencing of traumatic events. Despite this I am about to embark on my second placement that involves a significant commute. While I function very well during the day I tend to have a few hours in the morning where I feel more vulnerable, almost like an emotional hangover from the night before. I have had several discussions with my university about these matters and feel slightly ‘not listened to’. It’s not my style to make a fuss and I’m also aware that I have internalised stigma and feel desperate to ‘just cope like everyone else’, but the reality is that it hurts to feel dismissed after taking steps to admit vulnerability.

Do I have a perspective that could help my fellow students?

One thing I am very clear on is that I have no experience of what it feels like to be an OT student that is nervous about working with people with mental health problems due to lack of experience, and for that reason this is the area I need to listen to those peers who are brave enough to admit the preconceptions and fears they have, to increase my own understanding of the issue.

I’m very conscious that my experience is just one of many people who have had mental health problems. Even if my peers all knew my views and experience this would simply give them insight into one person’s experience. That said, I feel the ‘power’ of my story is that these people know me primarily as a student, most people I know struggle to imagine me as the sectioned, destructive, despairing girl that spent several years in hospital. And that is my point, both those things are true. I am the person I am today AND I’ve had significant mental health problems that I almost didn’t survive, with many professionals feeling I’d always be detained in secure facilities.

What could be done to improve matters?

It’s very early days in the semester and I’m not sure if our teaching involves service-user involvement. If it doesn’t I think this is a significant oversight and will not challenge perspectives sufficiently. I know we have some lectures and workshops in the next few weeks delivered by people who I am confident will not teach in the manner that I feel silenced by, so perhaps I will contribute more of my perspective then.

Part of me would love to deliver a session, one that discusses the experience of a young woman with BPD who is intently suicidal and ends up sectioned and on 24hr-observations with all professionals at a loss of how to help, who eventually recovered due to treatment at a therapeutic community involving intensive psychotherapy, DBT and OT, and finally reveal that person is in fact standing in the room with them. I’m sure that at some point in my career I’ll be able to challenge views in this way. However, the time isn’t now, my priority is my own learning but I can’t help feeling my learning would be much less frustrating with a teaching programme that was less ‘fearful’ of upsetting the people with experience of mental health problems.

 

 

11/10/12 Update

I considered editing this post in light of recent developments at university, but I feel it’s better to leave it as is, with this update. I’m really pleased to say the second and third weeks of term have included some fantastic teaching on a variety of psychosocial issues for occupational therapy practice. That doesn’t make my frustrations with the first week any less valid but I am grateful that the issues I raised did not continue. I’ve also had a lot of support from my tutor and placement coordinator to resolve my worries about placement, and used my own therapy sessions to explore why I find communicating my needs so difficult.

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Multi-Disciplinary Summer School ‘Healthy Ageing: Enjoyment vs. Endurance’

I was fortunate enough to gain a place on The College of Medicine’s (http://collegeofmedicine.org.uk/) Summer School for students of healthcare professions, hosted by the University of Birmingham Medical School in partnership with the Centre for Health Ageing Research at the shiny, new Queen Elizabeth Hospital (left). Approximately 70 delegates gave up 2 precious days of summer holidays or Vital Money-Earning Time to consider the issues surrounding healthy ageing for older adults. The professions of medicine, nursing, podiatry, osteopathy, physiotherapy, psychology, diagnostic radiography, nutrition and dietetics, pharmacy, dentistry, herbal medicine, chiropractic, radiotherapy and of course occupational therapy were all represented by students from around the UK. I think the ‘multi-disciplinary’ label was certainly justified! The event was very well organised and every team member was helpful and friendly throughout the very intense 2-day summer school. This post is simply a personal reflection on the summer-school.

Friday

The first day of summer school was very much the ‘food for thought’. We had seven 30-minute talks, each followed by 15-minutes question and answer time. The topics covered were vast. The most scientific talks included; ‘Ageing, Infection and Immunity’, ‘Nutrition in Healthy Ageing’, ‘Cognitive Health and Ageing’ and ‘Physical Activity to Support Healthy Ageing’, all of which were presented by leading professionals in the areas who were able to share their latest research findings to support their presentation. The more practical and ‘in-practice’ areas were represented by presentations about the ‘Move-it or Lose-it’ exercise classes for older adults (http://www.moveitorloseit.co.uk/) as well as Well UK’s Director presenting the Upstream Project (http://www.upstream-uk.com/) as an example of a ‘Community Based Model for Healthy Ageing’. The latter was the most akin the models I’m familiar with as an OT student and I found it fascinating that the programme was so focused on meaningful (often leisure) occupations as a central point of a social group, despite not having OT involvement. I found it refreshing to listen to presentations concerned with physiological processes of ageing. I found it enhanced my understanding of the process and also allowed me to consider the likely relevance to occupational therapy. The common theme was that moderate activity is vital to limit ‘unhealthy ageing’ and so I found myself wondering how occupational therapists can encourage this, particularly for clients who may not select physical activity as a goal they wish to achieve. Can a balance be achieved between health promotion while remaining person-centred in approach? Another common theme was that ‘connectedness’ and relationships were important determinants of well-being, by limiting social isolation and mental ill-health. This wasn’t ‘news’ to me as both an OT student and someone who has recovered from serious mental health problems, but the key learning was developing awareness that for some professional-students this was a novel idea and reminded me just how ‘medical-model’ some of the other professions are.

Saturday

Day 2 mostly focused on small group workshops facilitated by service-users with an interest in a specific aspect of ‘older-adult-life’. These were; ‘spirituality, religion and ageing’, ‘sexuality in older age: an LGBT perspective’, ‘ethnicity in older age’, ‘mental health in older age’, ‘retirement and well-being’, ‘exercise in older age’. I was grateful to get into a more interactive style of learning after a long, albeit interesting, day yesterday. The facilitators of the sessions were all excellent. My only criticism was that some of the groups might have benefited from a co-facilitator that had a contrasting experience. For example someone who had been a reluctant exerciser, someone who struggled with the transition to retirement and someone who experienced mental health problems for the first-time as an older adult, not a working age adult. The students brought a range of personal experiences and it was all done in a reflective and open-minded manner. I was struck by how some of the topics being discussed were quite obviously ‘new territory’ for many of the students, particularly the workshop on LGBT issues. While I felt glad that at least the participants today may now be aware of their heteronormative use of language with clients, I felt quite sad that this was the first time they had ever considered it. The closing plenary was a summation of everyone’s thoughts and it was nice to hear the different ‘key points’ that people would take away. I was aware of how beneficial the summer school could be to other students, those perhaps who also need to challenge some of their assumptions.

What will I, personally, take away from the summer school learning?

Some of the professionals I work with are going to be very focused on diagnosis and symptoms. While this is not an approach I wish to take, the depth of their understanding of physiological processes is vital and will provide evidence for the interventions being provided by those with a more bio-psycho-social consideration of the person.

The physiological explanations of the ageing process and issues that determine the relative success of ‘healthy ageing’ were very helpful to understand. However, the practical ‘consequences’ mean that the approach for an OT focuses on occupations that support an active lifestyle and reducing social isolation, which would be similar for a working-age adult, adolescent or child. Furthermore, discussions highlighted how clients want to be listened to, not judged and have a clinician that doesn’t make assumptions as well as showing great kindness. Again, this is something I feel is important, irrespective of age.

Personal ‘Experiences’

As a representative of the OT profession I noticed certain issues repeating throughout the weekend. I anticipated having to answer the question of ‘so what does an OT do?’ but seemingly underestimated the frequency with which I would be trying to define and explain the profession. Fortunately it’s a topic I like discussing and was able to draw on the summer school content to put things into context.

One aspect that left me feeling a little sad was that in several discussions I noticed a marked change in peoples’ attitudes towards me when they discovered I had initially studied another degree at a prestigious institution, compared to when they thought I was ‘just’ an OT student. I am not an OT student because I can’t do any better, but simply because I think it is a profession that can make a real difference to people’s lives, in a way that fits with my own values and even ‘spirituality’.

Occupational Therapy’s Invisibility

The link to occupation was made on numerous occasions throughout the summer school, but never was it suggested that OTs could be crucial clinicians for encouraging healthy ageing. This, combined with the numerous ‘what is occupational therapy?’ questions, reminded me of some of the challenges the profession faces. I can’t help but feel that the answer lies in research and evidence production. There is clearly fantastic medical and physiological research available on this topic but unless this can be linked to the role of occupational therapy in enabling people to make the occupational changes in their lives that support good mental and physical health I feel we will always be invisible and misunderstood.

Areas for Continued Reflection

While a fan of evidence-based practice, I felt very aware that I spent a lot of time thinking that occupational therapy ‘just IS the right approach’. I suspect I need to challenge this and continue to explore the current evidence to evaluate this belief or moderate it accordingly. (For the record, after the numerous discussions with other-discipline students I do feel more content than ever embarking on a career as an OT, and equally I’m conscious of some of the frustrations I will, probably repeatedly, face.)

#worldsmaddestjobinterview

The (UK) Twitter world has been full of discussion about Channel 4’s recent ‘4 goes mad’ season, a series of programmes about mental health stigma, particularly in the work place. It culminated last night with ‘The world’s maddest job interview’ (http://www.channel4.com/programmes/worlds-maddest-job-interview/4od) in which a number of candidates, some with, some without, histories of mental health problems were put through a series of tests and assessed by psychiatrists/psychoanalysts and potential employers for both traits of mental health problems and their aptitude for work. I’ve just caught up on the programme, given that last night I was engaging in my own favourite leisure activity of salsa dancing (with some great friends and a very special, talented teacher who has been both a great support as a friend and also a fantastic teacher who has facilitated the recent salsa opportunities, see https://pd2ot.wordpress.com/2012/07/25/116/ ‎ for my reflection on the role of salsa in my recovery).

I have to say I was a little anxious about watching, given the response I observed on my Twitter feed, and many of the objections seem valid. This blog post is not intended to be a review of the show, but more a personal reflection on some of the key points that I took from it. I suspect some of the issues will develop into more in depth blog posts in the future.

The power of label

I suppose the first thing that struck me about the whole #4goesmad concept was the use of the word ‘mad’. Like many, I questioned the appropriateness of a supposed ‘anti-stigma’ campaign being based on a word that was stigmatising, in itself. Initially I had that ‘ouch’ feeling every time I saw a trailer or read the hashtag, but perhaps on reflection is it such an issue? If, for example, channel 4 had named the series ‘4 challenges the stigma of mental health problems’, would it have captured our imagination in the same way? Would we have had so many discussions on social media about the complexities of labels and societal judgements? Would the person with little understanding of mental health problems have paid any attention to the series? I suspect not. Channel 4 has always been a broadcaster that takes risks and sometimes steps over the line. While I’ll never be comfortable with the use of words like ‘mad’ or ‘crazy’, I can understand why it was branded in such a way. I also think the programmes did a reasonable job in highlighting mental health problems in a serious and fair light. Perhaps a feature on the power of labels and their contribution to stigma would have been the ideal compromise.

Another aspect that caused me to reflect was the frequent use of the word ‘suffering’ by both professionals and those with the mental health problems. I recently started a discussion on Twitter about my intense dislike of the description of people to be ‘suffering from OCD/depression/bipolar/personality disorder/psychosis etc.’ I am a pretty placid person, but both the attribution of the word ‘suffering’ to a person’s experience of ill health, as well as describing someone as ‘anorexic/schizophrenic/autistic’ are things that I will step on my soap box about. I was relieved to find a number of service-users and professionals shared my view that this use of language was unhelpful. It feels far too reductionist to see people as only their diagnosis, and puts them into a helpless ‘victim role’ to assume they suffer with their illness. I suppose the aspect that prompted further reflection was how many of the candidates on ‘The World’s Maddest Job Interview’ said that they had ‘suffered from bulimia/OCD/clinical depression’. I wondered how much of this was almost conditioned into them by society and medical professionals, that they used the term without thinking about how it felt for their identity. I also wondered how many of them felt that their illness was something they suffered. I believe it is a very fine line. Mental illness can be some of the most extreme torture that a person will experience, and the person does suffer. However, I don’t think it is helpful to give all the power to the illness and adopt a powerless victim role. I’ve talked before about how much I value Dialectical Behavioural Therapy (DBT) and one of the key, founding, assumptions of the therapy is that the person engaging with DBT is not responsible for the problems they have or the events that caused them, but they are responsible for how they respond and manage those problems. I think this is a much healthier approach to both Personality Disorder and also other health conditions. The person with the illness did not cause it but they can do all they can to manage it. I felt cautious of applying this logic to something with a very biological origin, like cancer, especially as a person can’t have full control of determining if a tumour grows, but feedback I got from the Twitter conversation is that there are few areas where it helps to adopt a helpless victim role.

The role of productive occupations

I think, on reflection, that this part warrants its own blog post with a little supportive reading and findings from relevant studies. However, like many, I was very pleased to hear the statement about work helping people get better. I do believe it is a far more complicated process than that. For example, a graded process building up to a goal of paid employment is more likely to be successful than simply jumping from hospital into a job. Similarly the job needs to be right for the person, finding the right balance of demand and personal growth with stress levels for each person. As with many areas I also believe that there are exceptions. Work will not help everybody. I think Occupational Therapists (OTs) have a fantastic opportunity, approach and skill-set to finding the right balance of occupational demands, collaboratively, with a person recovering from a mental illness. I think occupation is the key to recovery, and would like to explore the extent to which productive occupation facilitates recovery.

‘You wouldn’t know’

A common statement in last night’s programme seemed to be this expectation that mental health problems would be evident in some way. I suppose it caused me to reflect on how my understanding of mental health is different to the ‘average joe’. I’ve had the fortune of knowing a great many people who have had a variety of mental illnesses or recovered from them and so never had to challenge a misconception that a person with a mental health problem will be unable to function or not have any notable skills or positive attributes. I’ve also been aware of how easily hidden mental health problems are. I’ve lost count of the number of times I’ve been told that people had no idea of the extent of problems I had. From colleagues being shocked that one day I was at work, ‘fully’ functioning and the next sectioned and starting what would become a hospital admission lasting 16 months. I think it frustrates me that understanding can be so limited that people expect a person with mental health problems to appear ‘mad’. It also prompts me to think about the nature of mental health problems. Many people with such problems have difficulty displaying emotions, or perhaps developing trusting relationships in which they allow friends to know ‘the real them’. I often was frustrated by a trait of mine that was to show ‘apparent competence’. In the world of DBT this feature is assigned as the opposing dialectic to ‘active passivity’. I often struggled to relate to this particular dialectic but did feel aware that apparent competence made my life very hard. I was skilled at appearing fine, in control and competent as it protected me from people getting too close or understanding me. It also blocked all help, even in hospital I found it hard not to appear ‘ok’, even when in deep distress.

Stigma

I suppose the other element that surprised me was the employers shock at hearing a person’s diagnosis or past experience. I suppose I am very accepting of the fact that I have had significant mental health problems and nearly not survived AND I feel that I am a stronger, more resilient and highly skilled person as a result of it. Perhaps I am a little naive to believe that my potential employers would not be put off if they were to know my history, but I also think they have no need to know. As things stand I have needed no adjustments to my course and passed a demanding placement with distinction, my needs are no different to a student without a history of mental health problems. I have been fortunate that my university have been supportive, and on the whole, value the experience I have. I suppose that is the point of this blog; to increase my own understanding of my limitations and strengths due to my history, and to make others aware of the contribution ex-service-users can make to the profession. I suppose I felt that the 4GoesMad season could have benefited from a broader inclusion of mental health diagnoses. While many of the people featured had experienced severe levels of mental illness, the absence of participants who had recovered from or were managing psychotic illnesses or personality disorders felt a little stigmatising. Perhaps the main focus was given to OCD and depression as they are illnesses that most people can attempt to understand the traits of. Given that a person diagnosed with Borderline Personality Disorder (BPD) may be a similar spectrum, in terms of the diagnostic criteria, with a person who considers themselves to not have a mental health problem, it would have been most beneficial to include some of the more ‘scary’ diagnoses in the programmes, in order to maximise the potential to challenge stigma.

As I said, possibly some of this needs more time and exploration, but that’s just a summary of some key reflections for now.

Summer of Salsa

The Summer seems to be a time of anniversaries/reminders for me. Some positive, some less-so. In fact, as the London 2012 Olympics are about to start it prompts me to reflect on how things have changed since the Beijing Olympics of 2008.

In the Summer of 2008 I remember watching hours of Olympic sport, not because I was a fanatic, but because I was a patient on a Psychiatric Intensive Care Unit (PICU) and not allowed access to any of my possessions due to the level of risk I was at. I don’t remember any key events of that Olympics, I suspect while I was watching I wasn’t really taking much of it in.

In the Summer of 2009 I was still an inpatient in a psychiatric hospital, as I had been for 16 months at this point, but now on an acute ward on 1-1 observations. I was considering, reluctantly, transfer to a residential therapeutic community (TC).

In the Summer of 2010 I was nearing the end of my TC admission, I had spent 8 months as an inpatient and was finding my feet in the real world. As part of this I embarked on salsa classes to help build up social contacts in the new area I was living in.

In the Summer of 2011 I had completed an Access to Higher Education Diploma, to help get me back into the world of academia and had built up a great network of friends, as well as enjoying salsa dancing and voluntary work.

Now, in the Summer of 2012, I’ve completed my first year at university and loved my first practice placement.

Anyway, after that nice little timeline I’ll get onto the main point of this post, salsa! As a self-confessed #OTgeek the other incredibly meaningful occupation in my life is salsa dancing. Consequently I was thrilled to see on Ruby Wax’s Mad Confessions (http://www.channel4.com/programmes/ruby-waxs-mad-confessions/4od ) that salsa features as an activity for people receiving treatment at The Priory. During an OT intervention when I was in the TC the idea of finding leisure occupations that would be meaningful and also not self-defeating (as many exercise/sporting occupations had been for me) came up. The OT and I felt that I needed to explore a hobby that could be fun and that would help me make friends in the area I was living. As a child I had done some ballet and modern dance and really quite enjoyed it, but I was wary of this type of activity for someone who had a slightly shaky body image. I did some research and found a local streetdance class and decided to attend. While I enjoyed the class I found that most of the participants were 16-18 years old, despite it being an adult class. I then decided to try salsa, simply because there seemed to be a multitude of classes and I believed I was likely to find a wider age range of participants.

I picked a local salsa class that seemed to have a good structure format and a separate class for those who were attending their first class. While I was nervous about attending the first experience went well. The format was as I expected and being in a separate class was really helpful as it reduced the number of social interactions I needed to have.

The first few months were probably a little challenging and I don’t seem to have the energy (or possibly the desire) to reflect in detail on that but I will summarise in terms of the benefits and challenges I experienced as I started.

Benefits

  • Enabled me to explore my identity as someone who was functioning and competent.
  • Helped me develop a healthy body image and discover how to use my body in a good way, rather than abuse it.
  • The structure of classes meant that the occupation was the main focus, taking the pressure off the social interactions and allowing me to increase my confidence with those, little by little.
  • It’s fun! Still after some really special nights I’ll find that I have such a buzz that it can be hard to wind down.
  • It doesn’t feel like exercise, therefore I get to be active without it slipping into eating disordered behaviour.
  • It’s difficult, so I don’t get bored and have to work hard to improve.

Challenges

  • I did find it very hard to dance with, and be in close proximity to, lots of men. Often I wonder why I picked this sort of activity but I know it’s been a useful challenge to work through in therapy.
  • At the start I was still a member of the TC, inevitably small talk usually got onto questions about where I worked/what I did during the day and I found these awkward. It was so much easier several months later when I could say ‘I’m a student’
  • You get hot! I still wear long sleeves when I dance as I don’t feel comfortable with people, perhaps, making snap judgements about my arms. While I now do many other activities in short sleeves I don’t feel comfortable doing it at salsa, perhaps because it would involve ‘coming out’ to so many people who have known me for some time.
  • As mentioned in another blog post, wearing nice, feminine clothes was almost traumatic at times.

As time has gone on I am so much more comfortable in the salsa scene and have made some incredible friends. Including some close friends who I can rely on for support, should I ever need it. It has also brought great opportunities. In the past year I’ve attended salsa congresses and danced at lovely venues like the Blackpool Tower Ballroom. I’ve also recently joined a performance team, that will mean I get to perform all over the country, and even abroad. I don’t think I could ever have imagined that my first class would lead to my current situation.

I do believe that salsa has a very important role in keeping me recovered. It gives me energy and enthusiasm for life and has increased my confidence in so many areas. Many of the skills I developed through salsa have been transferable to other occupations.

While on placement I reflected on how easy I found it to build therapeutic relationships quickly. Much of this I attribute to salsa. Every time I dance with someone, myself and my partner has to work collaboratively, adjusting to each other’s strengths and weaknesses, to make the dance work. I also have got more comfortable chatting to and working with such a variety of people, and even getting on with those whose behaviour/manner I find difficult.

So yes, for me dancing and really participating (in terms of the DBT mindfulness skill, ‘participate’) in salsa helps my sense of self and is now an integral part of my identity. I think part of the value of salsa for my recovery was that while it linked to areas I had previous experience of, ie. a dance class, it was not something that had any real connections to difficult stages in my life.

The Power of the Pie! (2nd Annual Blog Carnival for World OT Day (27th October 2012): Exploring Balance)

Time-Use Analysis and Occupational Balance

Click to see my Time-Use Pie Charts created when in the Therapeutic Community

One of the most helpful parts of Occupational Therapy, for me, was time-use analysis. Initially we used a diary sheet to note down what we had been doing in each thirty minute section of one twenty-four hour period, and used it to reflect on whether we felt we had ‘occupational balance’.

After attending a Learning Network for Personality Disorder and Occupation I, and occasionally other clients, would transpose the results into a pie chart. I’d attended a talk from another PD service that advocated the use of pie charts to document change and progress, with respect to occupational balance. My ‘inner geek’ (this quality I now understand and share with many #OTGeeks on social media sites) embraced the idea and enjoyed producing the chart and trying to devise an Excel spread sheet that automatically produced the graphs. This was easy for the pie charts that showed the split of occupational domains, but less straightforward for the charts I liked that displayed time-use, by domain, on a donut that illustrated where in the day I was engaging in the occupation types. I never did create a formula to automatically create those ones!

As a service-user it was quickly apparent that dividing occupations into 4 ‘simple’ domains was a challenge. Could an hour spent cycling to quieten the eating disordered thoughts really be called ‘leisure’? What about time spent planning for suicide, was it a productive occupation as it provided issues that kept professionals employed, self-care by finding a way to reduce mental suffering, or something I was engaging in to provide some renewal from real-life stresses, akin to a leisure activity? Often, making plans was sufficient to stop me trying to act on the impulses, so while suicide planning would be unlikely to be considered by many people as a positive occupation it did improve my mental well-being (on a relative level), it also kept my mind occupied and provided relief from reality. So, not only did I struggle to assign ‘negative occupations’ to the OT domains I was presented with, I also struggled to just assign them to one category. When I started my OT degree I was interested to read Karen Whalley Hammell’s Paper, ‘Self-care, productivity, and leisure, or dimensions of occupational experience? Rethinking occupational “categories”’ (2009b) as I found myself in agreement with many of the key messages of the paper. Despite being white and middle-class, which Whalley Hammell argues is the background the traditional occupational domains is exclusively suited to (2009a), I found I was aware of the function of my occupations on a much broader level. Had I read the papers when I was in therapy I may have decided to try implementing some of the categories suggested by Whalley Hammell. However I would suspect that at the start of my therapy, when I was still very distressed and hopeless, I would have struggled with applying the suggestions of ways people experience occupation;

“as restorative;

as ways to contribute and achieve a sense of connectedness;

as ways of fulfilling duties, responsibilities, and interests;

and as ways to connect the past and present to a hopeful future”

(Whalley Hammell, 2009b, p112),

However, I did gain significant benefit with persevering with the common domains of productivity, leisure and self-care, with an additional category for rest, but perhaps not in the way people might expect.

When I presented the first pie chart to my OT, showing fairly equal divisions in time-use, I remember feeling almost judged by the statistics. I felt like it was proving, ‘look, there’s no issue, lots of leisure, lots of everything, perfectly balanced’, whereas my own experience was ‘everything I do is torture, I get no pleasure from anything’. And that was the point. Almost a quarter of my day was ‘leisure’, experienced as compulsive exercise I had to do to punish and protect myself, and the same figure of ‘rest’ involved no sleep, but instead anxiety and dissociation. Feeling so misunderstood by these categories prompted me to speak honestly about my engagement in occupations.

Several months later my pie chart looked very different. It was recorded over the 24hr period that had the same structure, and therefore similar productivity, as the first pie. While leisure only made up 13% of my day the difference was significant, it was leisure that I enjoyed and wanted to participate in. My self-care had increased, as I was taking more pride in my appearance and exploring the challenges in living independently as a day-patient and cooking for myself. In those early days cooking an evening meal took several hours and a lot of support and encouragement(both internal and external). I divided ‘rest’ into sleep and ‘activities designed to promote rest’ when I couldn’t sleep. This helped me feel that people could understand how little sleep I got and how hard I was trying to rest and let my body cope.

So, time-use was very important for me. For making me reflect and think about the function of my occupations and for the value of its limitations in providing me with the opportunity to have an emotional reaction to what I felt the theory implied. I still analyse my time-use today and find it a really useful reflective tool, as well as a marker of my progression as I realise how my daily occupations are now largely meaningful and incredibly positive.

References

Whalley Hammell, K (2009a) Sacred texts: A sceptical exploration of the assumptions underpinnings theories of occupation Canadian Journal of Occupational Therapy 76 (1) 6-13

Whalley Hammell, K (2009b) Self-care, productivity, and leisure, or dimensions of occupational experience? Rethinking occupational “categories” Canadian Journal of Occupational Therapy 76 (2) 107-114

Dialectical Behavioural Occupational Therapy?

It is clear to those that have read this blog that I attribute my recovery to a variety of components that each contributed to my improved well-being. However, I feel that the role of Dialectical Behavioural Therapy (DBT) and Occupational Therapy (OT) were both equal and central to my recovery. I personally feel the two therapeutic approaches are quite complementary; at times DBT requires participation in meaningful occupation to implement DBT skills, whereas engagement in meaningful occupation can be enabled by utilising DBT skills to manage the task. As I was in the fortunate position to have a key worker who was an Occupational Therapist and also my DBT therapist, I felt it was important to reflect on my observed link between the two therapies to gain further understanding into my experience of the therapies. I feel it would be an interesting, but giant, task to consider where DBT and OT theory aligns and diverges.

As I mentioned in a previous post I was unable to find significant literature on Borderline Personality Disorder (BPD) and Occupation, when I searched for DBT and Occupation I got even fewer results. I did read through the National Institute for Health and Clinical Excellence (NICE) Guidance for Borderline Personality Disorder (2009) to see what was recommended in terms of OT intervention, and also noted the absence of clear recommendations for the therapeutic value of OT for BPD, while DBT was recommended as a consideration for women diagnosed with BPD. Interestingly, the guidance recommends that when a person with BPD is assessed that their occupational functioning is included in the assessment, yet does not recommend OT other than encouraging multi-disciplinary team intervention in which, conceivably, OT could feature.

As mentioned above I believe the two therapies are complementary although most definitely distinct. In order to understand if there is any substance to my belief I thought I’d use Linehan’s (1993) list of DBT skills, and my understanding and experience of implementing the skills, to explore the role of OT, or perhaps more simply occupation, in DBT and DBT in occupation, for a person recovering from BPD.

DBT Skill Area 1: Core Mindfulness

Linehan’s use of therapeutic mindfulness involves 3 ‘what’ skills, suggesting that you can be mindful in any situation by observing the experience, describing it or fully participating in it and this can be achieved by using the ‘how’ skills. Participation is considered a core belief by OTs (Finlay, 2004) and so this link may be easy to understand. But what about observing and describing? Do they link to engagement in occupation? In my opinion, absolutely. When I have provided teaching on DBT to Clinical Psychology students I often explain the purpose of mindfulness in relation to paying attention in a lecture, if you are able to control your mind and just notice when your mind wanders, and successfully bring it back to the topic being discussed, without judgement, then it is much easier to participate in the lecture.

DBT Skill Area 2: Interpersonal Effectiveness

Linehan’s Interpersonal Effectiveness (IE) Skills provide strategies for ensuring effectiveness that enables a person to achieve their objectives, maintain balanced relationships and importantly that promote self-respect. In developing the skills Linehan suggests a variety of occupations that require the use of IE, such as asking for information about a product or inviting a friend for a meal. It is very easy to see how a person who can competently and confidently ensure that they can get their needs met and interact with people in a way that leaves each party feeling understood and respected, will find it easier to engage in meaningful occupation. Conversely, I would argue that a person is more likely to take the ‘risk’ to develop the IE skills in situations where the occupation is meaningful to them. For me, while starting dance classes was scary and, at times, overwhelming, because it was something I was interested in I was more motivated to increase my DBT skill level to manage the situation, compared to the Tennis Club I joined because it was near by but didn’t really desire to become a competent Tennis player (and subsequently dropped out of after a few weeks).

DBT Skill Area 3: Emotional Regulation

The Emotional Regulation (ER) Skills are possibly the most ‘psychotherapeutic’ as they deal with understanding and tolerating a variety of emotions, any of which can feel overwhelming to a person with BPD (some of my most serious self-harm was after feelings of excitement or elation). However, the skills included in ‘Please master’ deal with reducing vulnerability to emotional dysregulation and rely on engagement with healthy occupations such as eating well, getting enough sleep and exercising, as well as engaging in activities that make you feel competent and in control. The occupations for ER can be quite challenging, for example for me sleep was a pretty torturous experience and I would have chosen not to engage with it, could I have managed it. Similarly, balanced eating felt impossible, never mind being contrary to what I desired to engage in. I feel that some of the occupations for this skill-set are not what will be easy, or even meaningful, for the client and at times they may have to be engaged in with a mindset of ‘this doesn’t feel ok AND I believe it’s the right thing to do and will do it anyway’. While I’m sceptical about the use of meaningful occupation to achieve ER, I firmly believe that reducing vulnerability to emotional dysregulation actively enables participation in occupation. I know that to function at my best I need to eat well and engage in physical activity, I also am aware that my sleep is still inadequate and limits my functioning. It’s important to note that most of the reducing vulnerability skills are not unique to DBT; most people are aware of advice to eat well, exercise and rest for not only physical health, but also mental health. The emotional regulation skills that focus on building positive experiences suggest a variety of means of achieving this, in fact of the 176 listed ‘adult pleasant events’ most involve actively participating in leisure occupations (a challenge in itself, see ‘BPD’s influence on fun occupation’ https://pd2ot.wordpress.com/2012/06/02/bpds-limit-on-fun-occupation/ )

DBT Skill Area 4: Distress Tolerance

Distress Tolerance (DT) Skills are designed to help the client manage period of intense distress and despair, without resorting to self-defeating behaviour. DT utilises mindfulness skills to manage the period of intense emotion and also encourages meditative activities like observing breathing and therapeutic thought processes such as ‘radical acceptance’ of a situation and diverting the mind away from difficult thoughts. While DBT does not endorse distraction as a long-term solution, it does value it as a short-term ‘bandage’ for a situation, and encourages participation is household chores, exercise and social activities. In my experience I have done a lot of distracting from my situation, and particularly when in hospital I used to fill the endless hours with Sudoku puzzles, Nintendo DS games and card making. Now however, I would never choose to engage with any of those activities, but if I do feel distressed I’ll distract with occupations that are meaningful to me, often this will shift it from being a temporary fix to building a positive experience that encourages emotional regulation. I believe that DT skills have been vital in my increased engagement in occupation; many of them are discrete and involve thought processes, meaning I’m able to manage demanding situations and utilise skills, while those around will be unaware of my ‘actions’.

In summary, I feel DBT and OT each have an equal role in facilitating the other. For me, learning DBT skills, while engaged with occupations that were a little more contrived, than meaningful, did not prevent benefit from DBT, but this benefit was maximised when the occupations used were meaningful to me. I suspect that without DBT skills I would have been unable to manage the occupations that I currently participate in, and that I attribute to the sustainability of my recovery. So, yes, I’m a big fan of both approaches and believe they work best when implemented together.

References

Finlay L (2004) The Practice of Psychosocial Occupational Therapy (3rd ed.) Cheltenham: Nelson Thornes.

Linehan M (1993) Skills Training Manual for Treating Borderline Personality Disorder. New York: Guildford Press

National Institute foe Health and Clinical Excellence (2009) CG78 Borderline Personality Disorder: Treatment and Management. Available at: http://publications.nice.org.uk/borderline-personality-disorder-cg78 [Accessed 22 June 2012].

‘Fitness’ to Practise

I’ve been struggling to find time to blog due to being on placement, and yet I have so many areas I want to explore. I’ll leave the more academic stuff until I have time to do it properly, but for now a reflection on the process of my recovery, prompted by experiences on placement.

A Graded Recovery

When I look back on my recovery I can see a very clear gradation; some of the latter parts were planned in a nice ‘OT way’ and other parts occurred more naturally because I was able to improve and require different levels of support. A brief summary from the point where I was requiring the highest level of support is as follows:

Psychiatric Intensive Care Unit (PICU)

Acute Ward (24hr 1:1 Observations)

Acute Ward (1:1 observations, being gradually reduced)

Acute Ward (ward based)

Therapeutic Community (In-patient)

Therapeutic Community (Day-patient), beginning voluntary work (in a fairly low demand setting), starting leisure activities.

Discharge from Therapeutic Community. Increasing voluntary work commitment (increasing both the challenge from the setting and duration), starting a college course and becoming more involved in leisure activities.

More demanding voluntary work, starting university, increased involvement in leisure and social activities.

First practice placement (decreasing voluntary work and leisure activities in order to try and preserve some restful time).

The time spent at each of the levels was not equal, but I am fortunate that while I have, at times, felt ‘stuck’ in terms of my progress, I never had to drop back a level. This is not true of the period before, as I tended to bounce between being able to be ‘managed’ on the acute ward on 1:1 observations and requiring treatment on the PICU. The purpose of the summary was to consider the many, and fairly significant, steps I have had to take to reach the point of being able to go out on placement.

The Challenge

I remember clearly a lecture earlier this year that included statistics about the poor relationship between the length of time off work due to illness and the chances of returning to work. The lecturer quoted the study by Waddell and Burton (2006) that stated that those people off work for more than 2 years are more likely to retire than they are to return to work. I remember thinking, ‘Yikes, that’s me, in fact my last hospital admission was almost that length alone’ and I wondered what challenges lay ahead of me. Of course, I’m not there yet, but as I’m currently engaged in a full-time placement I thought I might reflect on some of the challenges I’ve encountered.

‘So, why do you want to be an OT?’

It’s funny, during the year at university this question hasn’t cropped up nearly as much as I thought it would, and when it did it was very easy to give a fairly superficial answer that felt comfortable given the level of familiarity I had with the person who was asking. On placement however, I seem to have been asked this by professionals almost every day. With some I can give a nice vague answer about wanting to work with people and liking the approach used in occupational therapy, I’ll also talk about how I’d done various types of voluntary work and discovered it that way. Other people seem to want more concrete examples, like wondering how I discovered about the role of an OT and wanting to know whether I came to the place I now live to study. Now, you could argue that a lot of this stuff is none of their business, but as I am an honest person and because they are only asking to get to know me I find it difficult to be too evasive. Equally, I don’t feel replying with ‘well, I was a nightmare patient, sectioned and unmanageable who was sent for treatment here and when I realised the value of OT in my own recovery I decided to research the profession further and get experience in related settings before applying to study it’ is quite the answer I want to give. Of course, part of me feels like perhaps I should stand up and challenge the stigma surrounding mental health problems, especially personality disorder, but I’m also aware that I have the choice to manage my personal boundaries the same way anyone would on first encounters with people.

The Shadow of the Past

I feel like I am incredibly fortunate to be able to say ‘I have recovered from BPD’ but to not acknowledge that it has left its mark on me would be unrealistic. So, not only do I feel like I have 6 years of ‘crisis’ to try and account for I am still very much in a process of rehabilitation; it is not yet two years since I left full-time treatment. On a very practical level working a 5 day week is a bit of a shock to the system, not least because the one area of my recovery that still requires work is my sleep pattern. I have always found the night to be a very distressing time and while the quality of my day has improved significantly, I still struggle with lack of sleep, nightmares and dissociation throughout the night. University were very happy to discuss my needs regarding placement and we agreed the practical arrangements that would be helpful for this first experience. However, while I did move towards this point in recovery in stages I do feel a little like I’ve chosen to run a marathon while having only trained for a 5k race.

Everyday Reminders

The locality that I am on placement is not one I’d had much experience of. Bar one, slightly significant, incident involving quite a lot of blood and an ambulance. Obviously being in that area brings back some challenging memories and it can feel quite isolating as those memories are not ones I’d choose to share with current colleagues. On balance though, it feels like a great opportunity to be able to face up to some demons and create a new, more positive, experience of the location. Yes, it is a stark reminder of how difficult my life has been AND also a very clear reflection on the progress I have made.

‘Fitness’ to Practise

This post has possibly focussed a little more on the negative consequences of my life experience than is normal for me. However, I wanted to use the post as an honest reflection on how my past influences my present. I am aware that there are areas of my life that still need to be improved and that this placement is quite an increase on the demands I am putting on myself in terms of both physical and emotional energy. I think this self-awareness is vital; it’s allowing me to try and balance up other areas of my life, perhaps temporarily scaling back the leisure activities I do, replacing them with less energetic options and ensuring that I make time to rest, even if my sleep is still atrocious.  I’m also conscious that I still have work to do; that I am still very much on a journey and while I believe I am able to be a responsible and competent student I have to keep building these new, positive experiences. I also value this blog because I have a tendency to come across as incredibly competent to others. In the past I have found the trait of ‘apparent competence’ to be incredibly limiting and this has left me feeling very isolated and overwhelmed, in fact the concept of apparent competence and its influence on occupation is something I wish to explore later, but for now I feel that I’m not falling into the old trap of ‘performing’ for others while internally collapsing. This time, I am managing, and managing quite well thanks to a big chunk of mindfulness and honesty about my current situation. So yes, I am fit to practise, even if it is leaving me feeling a little out of breath!

Reference

Waddell G, Burton A (2006) Is Work Good for Your Health and Well-being? Norwich: The Stationery Office.