Dissociation and Occupation

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This blog post will endeavour to explore dissociation and its effect on occupational engagement. In terms of my own personal experience dissociation was the last ‘symptom’ I was willing to admit to as I felt great discomfort admitting to engaging in something I had so little control over or understanding of. Dissociation is a challenging topic to write about, not least because everybody’s experience of dissociation is different. It also is difficult to write about something that involves losing touch with reality because the very nature of the experience is difficult to understand/describe when not dissociated, so I apologise if this post lacks the clarity of previous efforts.

*Additional note – September 2015* –  I started writing this post over 2 years ago and it has languished in my ‘drafts’ folder for a very long time. I think this is indicative of my own struggles to fully process my thoughts about dissociation and its effect on occupation.

What is Dissociation?

‘Everyone Dissociates’

The ‘Dissociative Experiences Scale’ (DES) is a 28 question screening test for Dissociative Identity Disorder (DID). I suspect very few people would take the test and score a ‘0’. It is expected that the non-clinical population will score below 30 (this equates to a percentage of time that people experience different dissociative experiences) and is noteworthy. The test expects everyone to relate to some experience of dissociation. The example most often quoted is about completing familiar actions on ‘automatic pilot’, for example driving a familiar route. How many times do you find yourself having completed a task, but not actually able to remember the steps you took to complete it because your mind was on other things? On a simple level, this is dissociation.

Mind have a simple but clear explanation of dissociation, including the different types of dissociative behaviour a person can experience, furthermore the Healing from BPD blog provides a valuable account of the personal experience of dissociation in  ‘what does it feel like to dissociate?’

Dissociation in Borderline Personality Disorder (BPD)

While the DES screens for dissociation as a diagnostic tool in DID, the occurrence of dissociative symptoms in BPD is common. The ninth diagnostic criterion in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) (American Psychiatric Association, 2013) for BPD (of which a person must have five of the nine symptoms to be diagnosed with BPD) is listed as; ‘transient, stress-related paranoid ideation or severe dissociative symptoms’. Certainly in my experience of receiving treatment in a Therapeutic Community (TC), dissociation was a significant and problematic symptom for many people.

Dissociative Identity Disorder (DID)

I have also known people dually diagnosed with BPD and DID. The DSM V (2013) defines DID as being diagnosable  when a person experiences recurrent dissociative episodes, in which behaviour is modified by appearance of a minimum of two separate identities. This can now either be observable by others on self-reported.  For the purposes of this post, the dissociative experiences will be considered from the perspective most often associated with BPD, but I wished to acknowledge DID.

Dissociation as an Occupation

This feels like an uncomfortable statement to me. And further reflection on this concept lead me to wonder about the types of dissociation experienced. For me, much of my dissociation involved a modified participation in occupations that exist ‘in their own right’, such as self-harm or shopping. The dissociation itself was not the occupation, but it really changed my experience of it. It possibly indicated the complexities of that ‘base-occupation’ for me as it was eliciting such a dissociative response. But what about the experience of being dissociated and re-living trauma? Is that an occupation? Often there is no decision to engage in it. But it can certainly be functional, purposeful and packed full of meaning. While incredibly different in cause and experience, there could be some parallels drawn with the experience of daydreaming – and daydreaming feels like something that could be thought of as a discrete occupation to some. This concept needs more exploration before I finalise my views.

Enabling Participation

While dissociation as an occupation is something I’m uncertain about, I’m much clearer about the effect of dissociation on occupation. In my post on apparent competence, Sue (@BPDFFS)  made a very interesting comment that prompted me to reflect. Her feeling was that apparent competence is a mild form of dissociation. As I considered the concept I quickly realised I agreed, there was a certain compatibility with my experience of being able to ‘perform’ in certain situations. I can also relate to the experience of ‘derealisation’ in stressful situations. Often, in high states of arousal I would experience the world as unreal, sometimes like viewing it through a thick fog. This detachment from reality was my way of managing to remain in an environment I found challenging. While derealisation limited full, mindful participation in the occupation occurring, I also believe it provided the opportunity to remain in the situation long enough to allow arousal levels to recede and for participation to occur. I experienced this at college, and salsa, both in the first few sessions. The derealisation ‘bought me enough time’ to stay with the activity and for it not to become something I found too overwhelming. On a similar level, depersonalisation was something I often experienced. I would ‘watch’ myself engage in activities as if it was someone else. Again, this does not allow mindful, integrated participation in occupation but was a sophisticated means of managing high-stress situations.

Disrupting Occupation

As analysed above, dissociation can have an enabling effect on occupation. It is an important coping strategy for people experiencing high-states of arousal. When in treatment, dissociation was, perhaps controversially (due to the automatic nature of it), called a ‘self-defeating behaviour’ and it is difficult to deny that it prevents integrated, cohesive and meaningful participation in occupations. However, I believe the power of dissociation to provide a means of survival, particularly when used to cope with abuse, must be respected. I can certainly also understand the negative aspects.

For me, the vast majority of my self-harm occurred while dissociated. This increased the risk to myself as I was not fully in touch with reality and simply ‘observed’ myself hurting myself. I also had a reduced awareness of pain, and did not have the same protective responses as I might have in a more connected state. Dissociation was also incredibly disruptive when I’d lose large chunks of time when I was trying to study at university – it also felt very hard to explain to my department when I didn’t understand what was happening or why.

For people who dissociate in response to situations that replicate traumatic events, dissociation can happen when related perceived threats occur. This can disrupt occupations occurring in a safe environment. For example, a scene in a film may prompt dissociation and re-experiencing of trauma. In this situation the person has responded as if there is danger, despite being entirely safe. Awareness of the potential for dissociation or re-experiencing of trauma can reduce confidence and pleasure in engaging in such activities, leaving a limited number of safe occupations for the person.

Using Occupation to Reduce Dissociation

I’ve previously written about mindfulness and occupation and while I am not a big fan of ‘minfulness for mindfulness’ sake’ I find mindful participation in activities that truly are purposeful and meaningful to me to be very helpful when I am struggling. In the same respect I find participation in occupations that meet my occupational needs (Doble and Santha, 2008) particularly valuable in reducing dissociation. For example, when I feel accomplished and in control of the occupation it is highly unlikely I would dissociate. However, if the occupation lacks a sense of coherence with my identity, it is much more likely I’d experience some element of dissociation. That said, much like my thoughts on mindfulness, I can also see value in use of mindfulness as an emergency ‘band-aid’ to manage dissociation. If completed ‘well’ (which can be difficult when experiencing the level of distress and detachment associated with dissociation) it comprises such an element of being present that makes complete dissociation and the related detachment from reality very difficult. But as I said, that can be hard to achieve during the onset of dissociation and ultimately I’ve found a longer-term approach to living a life full of congruent, satisfying and meaningful occupations to be a better ‘cure’. I also don;t think occupation is enough to reduce dissociation to a manageable level. It is a powerful coping mechanism that has been developed as a response to life events. So for that reason some other type of therapy is needed to process the feelings, thoughts, emotions or memories linked to the need for a dissociative response.

So, yes, possibly the longest I’ve ever taken to write a blog post and it’s far from a complete consideration of dissociation and occupation. However, it’s a start, and I hope I might be able to explore the topic in more depth now that I’ve gotten over the initial hurdle.

Reference
Doble S, Caron Santha J (2008) Occupational well-being: Rethinking occupational therapy outcomes. Canadian Journal of Occupational Therapy 75(3) 184-190

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Pro-Eating Disorder Websites – a Personal, Occupational Perspective.

1-1259162961jHiYI have a number of issues with Channel 4’s ‘Supersize vs. Superskinny’ programme, which returned for a new series last night. However, I often find myself watching to ‘keep an eye’ on the messages they are promoting. There are so many areas I could discuss but the purpose of this post is the reflections it prompted for me on the topic of pro-eating disorder (pro-ED) websites (often referred to as pro-ana or pro-mia sites, using the abbreviated versions of the illness names to promote a familiarity  with, or even personification of , the condition), which they included as a feature in the first episode. I wanted to consider my view on the ‘should they be banned’ debate, as well as analyse my own experience of engaging with them from an occupational perspective.

What was my experience?

When I had an eating disorder (ED) I initially drifted towards some excellent recovery forums and websites designed to provide peer-support to people who had EDs. They provided me with some understanding and insight into my experience and I could tell I wasn’t alone, but they didn’t quite ‘fit’. The problem was that I wasn’t in recovery. I wasn’t ready to consider it and so any support given wasn’t congruent with the situation I was in. I soon discovered the world of pro-ED sites. While I did come across the type often cited in the media – those promoting anorexia as a normal lifestyle choice, or those involving high levels of competitiveness between members – the majority were simply spaces for people living with a very challenging illness to find a shared understanding and support.

The site I mostly used allowed sections for posting ‘thinspo’ (images designed to motivate people to meet their goals), and also posted things like the foods we’d eaten or binged on that day, however tip-sharing was strictly prohibited by a moderating team. Along side the ‘encouraging’ posts there were serious posts about emotions, challenges, recovery as well as a forum full of games and distractions to help cope with the isolation often experienced when eating disordered. I’ve already acknowledged in Self-Defeating Meaningful Occupation that these sites provided me with a level of companionship. I made real friends there – some of whom I am still in contact with now that we’ve made our individual steps into a life after an eating disorder. I never felt that the sites prevented recovery – when someone was ready to recover they were supported to do so genuinely and sensitively. The nature of social media use meant that supportive friendships could be maintained through sites like Facebook or via MSN Messenger (it was a little while ago…) for those who wanted to step away from the site. For me, the pro-ED site definitely maintained my eating disorder – it provided a space where I was accepted and some level of comfort. However, I feel things could have been much worse without it.

Should pro-ED sites be banned?

I was never under any illusion that my eating disorder was healthy, ‘normal’ or ‘OK’ but I felt I needed it and was unable to stop. It provided me with a means to cope with high levels of distress and really was a lifeline at a very difficult point in my life, as well as nearly killing me. That’s the thing with eating disorders, they are full of conflict; allowing survival whilst simultaneously contributing to demise. Perhaps that’s the reason why it’s hard to have a clear view on pro-ED sites – they sustained my life AND my eating disorder.

I don’t feel proud of my engagement in the site – I hate to think I could have encouraged someone else to develop or maintain an eating disorder by discussing what I’d eaten that day, however, I was very unwell and have compassion for myself. I also worry about those people for whom a pro-ED site makes their eating disorder worse (mine was very serious long before I found the websites). I don’t believe, however, that a website like that can create an eating disorder that doesn’t already exist. Perhaps the question should be, ‘Do pro-ED sites encourage eating disorders to be sustained and potentially cause harm?’. I suspect they do. I also suspect that their existence saves an equal number of lives by providing a level of understanding that pro-recovery sites cannot, for those not ready to consider recovery. I feel very sad that there are still thousands of people out there who will tonight be posting on a pro-ED site, I wish there was a way to take away all of their problems this instant. Sadly that’s not realistic. I don’t know how I feel about banning the pro-ED sites. I don’t want to glorify them or say they’re OK, they really aren’t, BUT they do provide something very valuable and I really feel that without them I would not still be alive. Perhaps a greater understanding of the function they serve would be more useful that debating whether they should exist?

What did the occupation of being involved in a Pro ED site involve?

The occupation of posting on a pro-ED site involved so much! It was something I felt was a classic ‘self-defeating meaningful occupation’ meeting many of the occupational needs highlighted in the linked blog post. The forum provided a frame for my day – allowing conversation about emotional issues, current affairs or ‘fun’ topics as well as a space to report the food-based occupations I’d participated in. I developed habits relating to times of day I would post in the various sub-types of forum (evenings were about food, day time about distraction). Also, due to the international nature of participants, there would always be someone online to chat with when chronic insomnia meant you were wide awake at 4am. I also established roles; from ‘newbie’, to established member, to friend. At a time in my life when relationships were very challenging this was significant and valued. I understand my engagement with this occupation as being one that synthesised experiences of productivity, pleasure and restoration (Pierce, 2003) in such a way that made it very fulfilling and important to me. The pro-ED site was a perfect record of all the energy I was putting into my eating disorder – there were significant elements of productivity involved and this almost felt like the ‘office-end’ of the job – the public (but anonymous) record of my work. The pleasure came from elements of satisfaction at this productivity as well as the connections with others and the light-hearted conversations that were had (which, when in a dark, all-consuming abyss of an eating disorder, was quite remarkable). The restoration was experienced as it was a place of acceptance of, and occasionally peace with, the chaotic world I was living in. I did not have to hide the life I was living (I use the term loosely), I could be me – someone in the grips of a very serious eating disorder.

I hope this post provides a little more insight into what the experience of engaging in pro-ED sites was really like, for me at least. I think the image portrayed in the media is very short-sighted and the problem is much more complex than described.I honestly don’t know what the answer is, but I think it might need to be the ‘question’ that is reconsidered first.

Reference

Pierce, D (2003). Occupation by Design, Building Therapeutic Power. Philadelphia: F.A. Davis Company.

Occupational Meaning – a Dynamic and Personal Experience

riverYesterday I attended a brilliant seminar by Bex Twinley on ‘The Dark Side of Occupation’. This was perfect timing as I’m currently beginning a dissertation investigating the meaning of self-defeating occupations for people with Borderline Personality Disorder. Bex’s ‘take home’ message was to always remember that the meaning of an occupation is entirely subjective. This was something I’d felt very strongly about when my life was consumed by occupations that were ‘self-defeating’ – to me they were the only option; they allowed survival and gave me purpose – I felt ‘self-maintaining’ was a better label.

The intention of this post was not so much to reflect on subjectivity of meaning of occupation, but more how that subjective experience is not fixed or absolute. For the same person, engaging in the same occupation, it can have entirely different meaning at different points in their life. At the moment I have a stark example of this in my life and that’s the focus of this post.

Four years ago today I set off to go rowing. I never arrived because I dissociated and engaged in some of the most dangerous and reckless self-defeating occupations I’d ever participated in. It happened at a time I was experiencing a high level of depression, I was a fairly new client at a therapeutic community and I was driven by an eating disorder. I was also exhausted. The details of what happened that day are still unclear in my mind but after the crisis had passed, in the process of using a ‘chain analysis’ to understand the event, I recognised that the trigger had been the obligation and expectation to go rowing. I explored what rowing meant to me and identified that it was entirely self-defeating. For me rowing was about punishment – I would put my body through rigorous training without adequate sleep or nutrition to support what I was doing, I also used it as time where my internal narrative could focus on how inadequate I was. I’d spend two hours rowing up and down a river, unmindfully, screaming “You’re useless” inside my head. I also found the obligation of being at the river at set times as part of a crew completely overwhelming – it really didn’t suit someone experiencing such a high level of depression.

So, following the incident I made big changes. That self-harm proved to be my last and, while it wasn’t a fairytale style ‘crisis followed by a happily ever after’ moment (I experienced several months of very deep despair and depression due to the loss of self-defeating occupations), it was certainly the turning point of my recovery. One of the changes that happened at the time was that I gave up rowing. I’d identified that it was a ‘dark’ occupation for me and could see no value in continuing. Over time I identified more health-promoting occupations to engage in and found dance, eventually specifically salsa, as a useful occupation to promote my recovery. When I gave up rowing it felt right. There was no enjoyment in it and I didn’t experience any sadness about not participating in it any more.

So, four years on, how is it that today I’m heading off to race with my crew in my first race for about eight years? The sport is the same, the club is even the same one I was due to arrive at four years ago, I’m the same. Or am I? I’m still me, but I’ve changed an awful lot in that time and I’d propose that my subjective experience of rowing has changed in that time. I no longer have an eating disorder and I do not have a punitive narrative running around my head. I am an awful lot stronger, physically and mentally.

The journey back to rowing actually happened due to dance. When I was performing last year I kept picking up injuries in training so I decided to join a gym to build up some strength. During my time at the gym I started to find I really enjoyed working out. I could feel I was becoming fitter and more powerful, and my well-being improved. After a while I started to get bored of dancing (I often have quite a short period of enjoyment of an occupation) and wondered how I could bring more purpose to my exercise again. I wondered about returning to rowing, as I was fitter, healthier and stronger than I’d ever been when rowing previously, but quickly dismissed it due to all the difficult associations. But, the thought wouldn’t go away, so tentatively I made enquiries about re-joining my local club.

The journey wasn’t easy. Perhaps if I had been living somewhere else and could have joined a new club there would have been fewer memories, however I now feel glad that I’ve worked through those to get to the point of having a different, much more positive experience. Rowing is now the thing that keeps me healthy and well – I use it as a very clear motivation to prioritise good nutrition and rest. I feel included in the club and enjoy spending time with my squad. I love the sense of achievement and agency that I now have when I row. I mostly love how completely different an occupation this is compared to the one I knew four years ago.

So yes, the meaning occupation IS subjective and that subjective meaning is not always permanently defined.

 

Mindfulness and Occupation

This blog post is inspired by the forthcoming #occhat on Mindfulness and Occupation (Tuesday 28th August, 8-9pm BST, follow #occhat on Twitter) as well as numerous discussions on Twitter, particularly in #BPDchat, #OTalk and #occhat, on the nature of the relationship between Mindfulness and Occupation. The first part is designed to suggest some related reading and a list of questions to prompt reflection on the topic before the #occhat, the second part in my personal reflection on Mindfulness and Occupation.

Related reading (this list, books in particular, is by no means exhaustive) :

Books

Kabat-Zinn, J (2004) Full Catastrophe Living, How to Cope with Stress, Pain and Illness using Mindfulness Meditation. London: Piatkus

Linehan, M (1993) Skills Training Manual for Treating Borderline Personality Disorder. New York; The Guilford Press.

Journal Articles (with great thanks to @clissa89 who supplied many of these)

Davis, D; Hayes, J (2011) What are the benefits of mindfulness? A practice review of psychotherapy-related research. Psychotherapy 48 (2), 198–208

Elliot, M (2011) Being mindful about mindfulness: an invitation to extend occupational engagement into the growing mindfulness discourse. Journal of Occupational Science 18(4), 366-376.

Gockel, A (2010) The Promise of Mindfulness for Clinical
Practice Education. Smith College Studies in Social Work 80, 248–268

Grossman, P (2011) Defining mindfulness by how poorly I think I pay attention during everyday awareness and other intractable problems for psychology’s (re)invention of mindfulness: comment on Brown et al.(2011). Psychological Assessment 23(4), 1034–1040

Gura, S (2010) Mindfulness in Occupational Therapy Education. Occupational Therapy in Health Care 24(3), 266-271

Hill, C; Updegraff, J (2012) Mindfulness and its relationship to emotional regulation. Emotion 12(1), 81-90

Reid, D (2008) Exploring the relationship between occupational presence, occupational engagement, and peoples well-being Journal of Occupational Science 15(1), 43-47.

Reid, D (2009) Capturing presence moments: The art of mindful practice in
occupational therapy. Canadian Journal of Occupational Therapy 76(3), 180-188

Reid, D (2011) Mindfulness and flow in occupational engagement: Presence in doing. Canadian Journal of Occupational Therapy, 78 (1), 50-56

Stew G (2011) Mindfulness training for occupational therapy students. British Journal of Occupational Therapy, 74(6), 269-276.

Wright, J; Sadlo, G; Stew, G (2006) Challenge-skills and mindfulness: an exploration of the conundrum of flow. OTJR: Occupation, Participation and Health, 26(1) 25-32

Mindfulness Defined

Mindfulness refers to a person having total awareness of their environment, and requires a person to full participate in and experience life (Kabat-Zinn, 2004). Mindfulness meditation is based on this and involves a determined effort to engage in mindfulness. Such exercises can help develop an automatic mindful awareness of self and environment.

Mindfulness is now a common feature in psychological therapies. Jon Kabat-Zinn created Mindfulness Based Stress Reduction (MBSR), from which Mindfulness Based Cognitive Therapy (MBCT) was derived for people with recurrent depression (MBCT, nd). Dialectical Behavioural Therapy (DBT) is a therapy derived from Cognitive Behavioural Therapy (CBT). It is modified, primarily to suit a client group diagnosed with Borderline Personality Disorder (although has subsequently been applied to other diagnoses), in a number of ways. One of the key points is that DBT focuses on acceptance and validation in the present moment, additionally DBT uses mindfulness as a core skill set, and those engaged in group DBT skills training will repeat the mindfulness module at the end of each other module (Linehan, 1993). For further reflection on the fit of Occupational Therapy with DBT you may be interested to read https://pd2ot.wordpress.com/2012/06/22/dialectical-behavioural-occupational-therapy/ , it also explores the role of occupation to the specific mindfulness skills used in DBT.

Points for Reflection

When I read through the articles listed above I noted a few key points or questions for my own reflection. They might be a useful prompt for pre #occhat reflection.

Focussing on Occupational Therapy Intervention, which incorporates Mindfulness Practice.

Potential Benefit to the Professional

1. A professional who is able to apply a mindful approach to their interventions will be able to ensure they are fully present in the session, aware of the imposition of distracting thoughts and also able to contain and acknowledge their own emotional reactions to, or prompted by, the client.

Potential Benefit to the Client

2. As well as the benefits to the client of having an OT who is fully ‘in the moment’, mindfulness could increase their awareness and understanding of the issues they are facing and communicate this to the OT.

3. A client who can utilise mindfulness practice may maximise the benefit of an OT session. For example, a person who has recently had a traumatic or life-changing illness/injury would be able to recognise that their thoughts were drifting to distress over lost skills and be able to validate the related emotion while bringing their attention back to the task. Similarly, if an occupation resonated with a traumatic experience for a person, implementing mindfulness may mean they are able to have a different, more helpful, experience.

Limitations of incorporating Mindfulness into OT interventions.

4. Mindfulness may not suit every individual and, as with any OT intervention, a client-centred approach needs to be adopted. That said, I considered some client groups that may struggle to engage as a whole. A person experiencing psychosis may find it incredibly challenging to be aware of their thoughts. Reid’s (2009) article discussed the relationship between the Middle Pre-frontal Lobe and appreciation of emotions and feelings, which is inherent to mindfulness. Consequently a person with brain injury to that region would be struggle to engage with mindfulness.

5. Mindfulness is not an easy skill to learn, and it requires frequent practise to become an automatic process and a client must be motivated and choose to engage with this approach.

6. For some clients mindfulness can verge on being a traumatic experience. I have known people who find the experience of not-dissociating from resonant occupations to be painful and prompt extreme self-defeating behaviour. Risk may need to be assessed along with multi-disciplinary team working to have a consistent and contained approach.

7. Training – the OT needs to develop their own skills through appropriate training. As there is little evidence available as to the value of incorporating mindfulness into OT intervention, there is likely to be little funding for such training.

Could the application of Occupational Therapy Theory facilitate greater benefit from Mindfulness Exercises?

8. Will a client find it easier to engage in a mindfulness exercise based on an occupation that holds meaning for them?

9. Conversely, could the meaning of an occupation make the task of engaging in mindfulness too much of a challenge?

10. Could increased levels of mindfulness skill be encouraged by ‘graded’ mindfulness practice, from benign exercises to those which might evoke stronger emotional reactions?

Final Point for Reflection

11. I found myself imagining facilitating an OT intervention and wondered how a mindful approach would compare with implementing Schön’s (1983) ‘Reflection In Action’. I think my initial reaction was to feel that the concepts aligned well, until I considered that thinking about the present moment and what was occurring in it (as in reflection in action) was the antithesis of being fully involved in the moment. So, where does that leave the compatibility of the mindful approach with reflective Occupational Therapy?

Service User Perspective (Mine)

There is a sign in a venue I dance in that states, ‘Please be mindful of the stairs.’ I always chuckle internally and imagine myself sitting down in front of them to observe or describe them, in a true ‘DBT Mindfulness Style’. In many ways, we all are familiar with the concept of ‘paying attention’ or being mindful, just as the creator of this sign wanted people to not have accidents on the stairs due to inattention. As those who have read the rest of my blog posts will be aware I was, initially, a reluctant recipient of both OT and DBT. My lack of engagement also extended to the Core Mindfulness incorporated into DBT. In reading the above articles and reflecting on the points I raised I also considered how I felt about the role of Mindfulness in OT interventions.

As my OT was also my DBT therapist, mindfulness was utilised to manage difficult situations. For example, in supported cooking sessions the OT would encourage me to bring back any thoughts that were disappearing off into ‘judgement land’ and to focus on the task. I also remember struggling with feeling overwhelmed with tasks such as hanging my washing out when I returned to my flat as a day patient. The OT suggested that I mindfully hang out socks, instead of judging myself for racing through the task and ‘performing badly’. It sounds simple, but this approach helped greatly.

I feel quite clear that mindfulness facilitates recovery-focused meaningful occupation. As for the reverse? As part of my individual DBT interventions we started every session with a mindfulness exercise. I believe I found these to be, simply, exercises. It didn’t seem to matter whether I liked the task or not, or if I would choose to do it outside of the session, my ability to engage was more determined by other factors such as mood or events in the Therapeutic Community (TC). I do remember that I found some of the group exercises difficult if they carried specific resonance. For example a game called ‘warp speed count’ had associations with childhood and I found the task of remaining mindful to be too large. However, I can also see a progression, or grading, in both what I could engage with and also what I could contribute to mindfulness. Eventually I was able to fully participate, mindfully, in ‘Warp Speed Count’, so much so that I felt able to lead a mindfulness training session for professionals, using the game as my example. The gradation to this point involved coping with more challenging mindfulness exercises in sessions and taking the lead in individual mindfulness sessions before leading group mindfulness.

References

Kabat-Zinn, J (2004) Full Catastrophe Living, How to Cope with Stress, Pain and Illness using Mindfulness Meditation. London: Piatkus

Linehan, M (1993) Skills Training Manual for Treating Borderline Personality Disorder. New York; The Guilford Press.

MBCT (nd) Mindfulness Based Cognitive Therapy [online]. Available at: http://mbct.co.uk/ [accessed 12 August 2012]

Schön, D (1983) The Reflective Practitioner: how professionals think in action. London: Temple Smith

#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