Dissociation and Occupation

winter-tree-and-fog-1355740795GPD

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

Advertisements

‘Coming Out’. Again. And again.

OSE

Last week I attended the Occupational Science Europe Conference about “Health and Wellbeing through Occupation” at Bournemouth University. It was a lovely conference and very refreshing to be able to indulge in pure occupational science for two days. I also enjoyed how international a conference it was – I really valued hearing from people working and studying in different systems to the United Kingdom.

At the conference I presented a paper about self-defeating occupation  in Borderline Personality Disorder. As I predicted in my last blog post about presenting at a conference I wasn’t *quite* as avoidant about preparing for it – leaving it only until the night before this time! I felt more confident that I had valuable material to contribute, but I also had an ‘itch’ to take a step on from my last presentation and completely join things up. At the COTSSMH conference (mentioned in the earlier post) I was aware that those people following on Twitter would have the full story of how I had developed the concept of self-defeating occupations from my own experience of self-harm and eating disorders, but this was not included in the paper and so those not using social media would not know. This time I wanted to make it explicit. I felt it was important to the narrative. I felt it was important to the research concept. I felt it was important to me. I was a person whose valued occupations were ‘self-defeating’ and without understanding the importance of those occupations I couldn’t have found a new way to manage my life. I also wouldn’t have become an occupational therapist or researcher and developed the ideas further.

So yes, I included a slide that allowed me to discuss the importance of this blog in generating the research. And when it came to that slide I felt really proud to stand there and explain exactly where the idea came from. It felt honest, and congruent and real. I have no idea if anyone in the audience had any judgements or other negative thoughts, however the feedback I got was overwhelmingly positive and allowed for a much more meaningful discussion in the questions section at the end.

This experience got me thinking, yet again, about mental health stigma. It’s a topic I explored in my last blog post and I think I’ve perhaps moved a step onwards. I’ve realised how fed up I am of having to ‘come out’ as someone who has had mental health problems. Not because I’m ashamed, or because I want people to magically ‘just know’. But just because of that uncertainty of how it will be received. Most of the time I’ve found it to be a positive ‘coming out’, but there is always the fear that, just one time, it will be met with prejudice and stigma. I do love the fact that this blog and my Twitter account means that sometimes I get to meet people who already ‘know the full story’ and it’s such a lovely experience to be me, without any further discussions. And obviously there are plenty of people in the world that I meet who never know, or never need to know. But yes, it can get tiring to have to analyse and assess if it will be safe to be honest. And that needs to change. Mental health stigma needs to stop. I can see that the world is changing, but is it changing enough?

Related to this topic I was really pleased to discover that Linda Gask, a psychiatrist, has written a book about her experience of having depression. Moreover I valued the discussion on her blog about stigma and only being able to ‘come out’ after retiring. From the blog post I find myself agreeing with the sentiments about the mental health profession’s desire to deny the struggles of those who work in the field. It’s also nice to see a psychiatrist discussing mental illness so candidly. Within the blogging community I can think of many other types of professionals who discuss their own experience, but I haven’t come across many psychiatrists who do – and I can’t imagine for a moment that’s because they don’t have first-hand experience. I’ve ordered the book and am looking forward to reading it, so I may well have some more thoughts soon!

So, what have I learned? I’ve realised I’m actually happier when I can join up the person who has experience of mental health problems and services, with Sarah the occupational therapist and PhD student. It may feel risky to need to explain that side to people, and I remain very clear that there is more to me than just that experience, but as it was such a large part of my identity and has shaped who I am today it feels an important thing to do. And if me ‘coming out’ helps challenge some of the stigma that remains then I am more than happy to keep ‘coming out’, over and over.

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.

 

Does ‘being pd2ot’ make me less competent?

296-1248099726Ti7pThis post is being written at the expense of the ‘Dissociation’ blog post, which still remains a half written draft. There are two reasons for this; 1. the dissociation post is proving very hard to attend to and 2. the topic of this post is one that more urgently warrants personal reflection. I will reflect on the question with consideration of my experience of being the student that is pd2ot, at this, the halfway point in my course.

So, am I less competent as a student that has recovered from Borderline Personality Disorder?

It is possible that you are wondering why I’m even considering this. Especially as I have been fortunate enough to receive quite public feedback about the contribution my experience could make to the Occupational Therapy profession through this blog/Twitter. Well, the reason for this is my own internalised stigma. I am soon to face a practice placement where I will be ‘bare below the elbows’. When I discovered this I was terrified as it will mean that my scarred arms are visible to staff and clients alike. My panicked concerns ranged from ‘What if my educator judges me as incompetent?’ and ‘What if my clients don’t want to work with me as they don’t trust me with their care’ to the slightly more probable ‘What if my performance isn’t as good because I feel self-conscious and can’t hide behind apparent competence?’ I had a very useful meeting with my academic tutor, in which we explored the issue and action-planned how I would manage various scenarios. I know that the reality is likely to be that it will be a complete non-issue and most likely something that is very good for me getting experience of being accepted ‘warts and all’, but it feels good to be prepared. During this meeting my tutor asked me if I feel less competent due to being a person who has experience of self-harm. My short answer was ‘No’, but I am aware that if I 100% believed that we probably wouldn’t have been sitting in a room having the conversation. Like many things I think ‘being pd2ot’ has advantages and disadvantages.

The Challenges

Rest. I still have a pretty horrendous sleep pattern, this means that I find functioning and getting myself to placement/university in the morning to be hard work. Judging by feedback from my previous educator this wasn’t at all evident in my performance on placement. It simply makes placement a pretty big challenge for me. While I am very glad that it doesn’t effect my performance, it can make it all the more challenging to speak up and say ‘I can’t keep doing this’, because to all concerned all they observe is a student managing really well. This is probably the most significant area for making me doubt my competencies, because sometimes just managing is hard work. 

The skills you can’t explain. Fortunately my CV has a lot of experience that would go some way to explaining some of the skills I exhibit. However, I do feel a little sad that the Therapeutic Community (TC) that was so crucial to my recovery never gets any of the credit. It often makes me giggle inside when ‘working in a busy shop at Christmas’ gets the credit for my ability to manage ‘customers’ with high stress levels. The reality is that once you have lived in a TC for a year, with infinite unrelenting crises occurring, there’s really not much left to phase you. Similarly, the Samaritan’s training for volunteers is getting an awful lot of credit for my abilities to listen and relate to people. Now, these things are probably ‘positives’ really, the challenge is simply feeling like it’s best to hide your experience. There’s also the ‘skill’ of having an extensive working knowledge of psychotropic medications that significantly exceeds that expected of an OT student. Unfortunately there’s nothing on my CV to explain why I know that likely side-effects of intra-muscular haloperidol injection, or even have such good understanding of the sections of the Mental Health Act, but I suppose it’s all valuable information to have.

Them and Us. At both university and placement I have experienced a degree of ‘them and us’ type thinking (the university experience was explored here). I do hope that one day I can help challenge some of that thinking by being more open about my experiences. For now, my work is in getting through my training in one piece. As a student it feels difficult to challenge overtly, but I do hope that my discussions and way of working with people who have been ‘written off’ due to being ‘personality disordered’ might prompt other practitioners to reflect.

Am I completely better? I am still in therapy, and have significant work left to do. This can make me wonder if I am ready for a professional career. However, I would not meet the criteria for BPD or any other mental health condition and probably have a much more balanced approach to life the the majority of people. I think there can be a disparity between the way I manage life and the amount of effort it takes to manage in such a way. Compared to some (some, but most definitely not all) people I suspect I have to work harder at the little things. Does that make me a less competent OT? No. I don’t think so. It gives me awareness of how hard life can be.

The Advantages

Skills. As alluded to above, my year in a TC has given me a range of skills: From the teamwork required to live in a TC, to being a co-facilitator of a range of therapeutic groups, from learning to tolerate hearing difficult things and providing support to those in great distress to gaining the ability to reflect and realise when you are absorbing ‘someone else’s stuff’ or projecting ‘your stuff’. These skills are not taught on an OT degree, they may in part be developed on a practice placement but the reality is the experience gained is probably equivalent to that  gained in the first few years of employment. The value is significant, I have only worked with one or two people diagnosed with Personality Disorder so far in my training, yet the skills have been transferable to the people I’ve worked with in both placement settings (older adult mental health and social services).

Interest. I am perhaps not the best student at studying ‘what I am meant to’. Like many people, once reading for an essay, I lose interest. I also struggle a little with the delivery of our lectures, I find it hard to remain engaged when we are not challenged to think. So, having this blog based on my own experience has been a lifeline. I know I have developed my skills in applying occupational theory to my own experience, which has given me the confidence to do the same when out on placement.

Perspective. It sounds a little ‘corny’ to say this, but I will anyway. My life experience puts university into perspective. That does not mean I don’t treat my studies with respect but it does give me an attitude of ‘I’ve come a long way to get to this point, I can certainly manage the stress of a degree’. That doesn’t mean I find it all easy, but it does give me the self-belief to get through it.

Opportunity. I have recently written a service-user commentary for a chapter in a forthcoming edition of an occupational therapy text. This was a privilege as I got to read new material before it was published and it feels quite special to know that I will have my name in a text book before I even graduate. I suppose the next goal is to have my name in print as a student/practitioner/researcher rather than service-user.

The role of this blog. It’s been difficult to write as many posts as I would like. The ‘sleep’ issue above means I often have to prioritise energy levels for university work. However, writing the blog only came about from suggestion of my tutor and what a brilliant suggestion it was. Having this perspective opened up a world of opportunity for my engagement in occupational therapy in the social media domain. I’ve read countless other blogs, had enlightening discussions on twitter, joined in #OTalks and #occhats, met up with some brilliant people, made some valued friends and ‘outed’ my inner OT Geek, all of which wouldn’t have happened if I didn’t have the pd2ot story to tell. The feedback received has also helped me integrate my experience. The support given about my perspective has let me experiment with letting more people in. There are several ‘real life’ friends who have read the blog, and I am much less afraid about sharing (in a boundaried way) parts on my experience with the right people, more confident in the knowledge that I’ll be accepted. So, thank you readers/tweeters/commentators. I also was humbled to receive nominations in two recent social media awards. The thing that struck me was that I was not nominated as a service-user, but rather in categories for ‘academic’ or ‘occupational therapy’ content. This felt quite powerful, and hopefully means I’m getting the balance right. I am primarily an OT student, who is influenced by her experience of having BPD.

So, no, I do not believe being pd2ot makes me less competent. It does mean there are challenges for me that some other students might not face (but I suspect they have their own, unique, challenges) but overall the range of ‘positives’ outweighs the challenges. There is also a significant point to remember, while I am reasonably confident that being a student who has had BPD helps me be a better OT student, I am more certain that without having had BPD I would never have embarked on this career.

‘Apparent Competence is Going to Kill Me’

This is a topic that I have wanted to write about for a while, as well as receiving requests from followers to explore it after brief references to the concept in other posts. It’s also highly relevant at the moment as I continue to question whether I still slip into apparent competence, rather than genuinely being a competent person. As per the usual format of this blog, I will apply this reflection to the effect of apparent competence on engagement in occupation and performance capacity.

Firstly, some definitions and explanations. Apparent competence is a common ‘trait’ for some individuals who have Borderline Personality Disorder (BPD) and is thought of as the opposing dialectic to ‘active passivity’. Linehan (1993a) provides an excellent explanation of the concept in ‘Cognitive Behavioural Treatment of Borderline Personality Disorder’. (Other dialectics are explored in ‘Skills Training Manual for Treating Borderline Personality Disorder’, I’d recommend reading both.) Linehan’s text explains that an individual exhibiting apparent competence may have varying levels of competence and this competence is highly dependent on the situation. For example a person could be easily able to manage work demands and roles, yet struggle with personal relationships or interpersonal interactions. Apparent competence can also emerge in the form of incongruous communications. The person may state a problem or talk about a subject that evokes high levels of emotion, but without the ‘matching’ level of non-verbal communication. The theory explains that this way of behaving could be derived as a learned response to an invalidating environment, where negative emotions need to be suppressed. The consequence is that the person is unable to communicate their distress, or needs, and the invalidating environment repeats, albeit unintentionally. The problem with apparent competence is that the person, or indeed the professional working with the individual, being aware that it can happen is not enough to prevent it. To further explore the challenge of apparent competence I will reflect on some of my own experience of being ‘apparently competent’.

Can Apparent Competence Really Kill?

The title of this blog post comes from a piece I wrote at a time when my apparently competent behaviour was leaving me feeling very isolated and distressed. I was in treatment in a therapeutic community and while, by virtue of being an NHS funded client in a unit for people with very high levels of problems, people knew the level of difficulty I had I felt my distress wasn’t being understood, or communicated. When apparent competence was discussed in groups I began to understand that this limit on my communication was understandable given my background, but I still felt at a loss as to how I could communicate in a way that would leave me feeling ‘heard’. I often felt, and probably still do feel, more comfortable communicating via written media. It affords the luxury of the recipient only being able to ‘hear’ what I intend them to, without being confused by non-verbal communication that doesn’t support the statements being made. For example, I truly felt that apparent competence would kill me, by increasing my distress and despair and leaving me feeling totally alone with my problems, and I was able to convey that in a letter that I showed my key-worker. However, I would have struggled to say the same words in a tone that communicated that distress for fear of someone being able to see that I wasn’t ‘ok’. This paradox sums up apparent competence: I wasn’t ok, I was desperate for someone to realise I wasn’t ok and I was also terrified someone would realise I wasn’t ok and tried to make sure they thought I was absolutely fine.

Apparent competence is highly frustrating for both service-users and professionals. Awareness that apparent competence is an issue for the person helps, especially in highlighting the need to remember that observed performance in one area does not imply transferable capabilities, but it is often not sufficient to ‘override’ incongruous communication.

Apparent Competence and Occupation

In my experience apparent competence both enables and disables performance capacity in relation to participation in occupation. The following are examples of my own experience.

Facilitating Engagement

While this post has mostly focused on the frustrations, I was actually very grateful for apparent competence and often felt it was a useful starting point. Apparent competence alone is not sustainable as it can be isolating and disingenuous, the latter I feel prevents mindful participation in meaningful occupation, however apparent competence let me participate and provided me with access to environments and situations through which I could gain skills and become genuinely competent.

‘Appearances can be deceptive’ – I’ve lost count of the number of times people have said they had no idea as to the struggles I’ve faced. Currently, this may be because I am in a very different place to when I was in treatment. However, when I was just discharged from several years in hospital and a therapeutic community I am grateful that I was able to blend in to salsa and college as if I had no issues.

‘Fake it until you make it’ – I remember doing my first university presentation and receiving feedback about how confident I was. I wasn’t, at all. However, once I realised that no one could see my anxiety I was able to become genuinely confident and enjoy presenting to my peers. I recently presented at a learning network while on placement, with possibly less anxiety than the qualified staff.

I often find that for me, my apparent competence is ‘switched on’ when in the presence of others. While I don’t believe this is a sustainable way to live it does have benefits. For example, if I had periods where things were a real struggle and I was barely functioning at home, I knew I would manage when out. This means I can still access the things that help, for example attending university or college, meeting friends, engaging in exercise. Often I would then feel better and be able to manage self-care tasks on return home. Unfortunately this is not always true and if the disparity between my inner-world and my perceived presentation grew too wide my level of distress increased and engagement in occupation was limited.

Limiting Sustainable Engagement

As mentioned above apparent competence can increase distress, and often made my engagement in occupation feel unsustainable. While it can be a useful ‘skill’ that allowed me to participate, the level of ‘performance’ required meant there was generally a pay-out or delayed impact on my well-being. For example, ‘competently’ planning a shopping list, going to the supermarket and chatting with the checkout staff would have required such composure and masking of difficult emotions that on return home I would sit on the kitchen floor, unable to move, totally overwhelmed with all the food I had bought. At that moment I felt like a child who had no idea what to do next, 30 minutes before I looked like someone completing their weekly shop without a care in the world.

This also limited my engagement in occupational therapy (OT) kitchen assessments. I could do all the right things, with only limited reassurance needed, when cooking in the OT kitchen. When I returned home and had to face the reality of nurturing myself, in my own environment, the emotional demands of the task prevented my engagement. What was the difference? In the OT kitchen I was performing and this meant I could put my emotions on hold – the task may have appeared the same but the difference in cooking a meal for myself, out of my own volition, compared to doing it because it was an OT session and ‘that’s just what you do’, was vast.

A further example of where my skills weren’t transferable was my engagement in group psychotherapy. In the other groups in the therapeutic community I happily gave feedback to others and took my turn to speak about how I was (albeit reasonably briefly). As soon as I was in a group that didn’t have a set order to speak (in community meeting we went around the circle) I found I dissociated or just remained silent. I still struggle to claim my space today and this is something I am trying to address. I feel much more comfortable addressing the needs of other people and find myself repeating the pattern of ‘if we discuss your stuff I can hide that I’m not ok, and I’m not ok but I’m terrified you will see that, and I’m frustrated that you don’t see I’m not ok’. This also has been an issue when interacting with university with regard to placement. It felt so terrifying to say ‘I need help’ and so my communication was confusing, and then I felt more alone and unable to manage. While I haven’t completely solved this problem I do find that I am managing to ask for my needs to be met, eventually (usually at the point that I realise I feel more alone I am able to think ‘I’m doing that thing I do again, now time to go back and have another attempt at saying what I need to’), and with the help of educators and university tutors who attempt to ‘figure out’ what it is I’m saying. The next step is to get directly to the point, and cope with how that feels.

What helps?

I think this post highlights the complexity of apparent competence. I believe awareness of pattern of behaviour is useful for the person and those who work with them. With respect to the example of OT kitchen assessment above, my OT suggested supported cooking in my own home when I spoke about the challenges I was experiencing. This helped, the situation was more real and less of a performance (although not entirely), phone support while cooking alone also helped, although still there was an element of ‘I’m on the phone, must put on calm, composed phone voice’. For me writing helps, as I mentioned above I seem able to convey the facts and explain how I feel, with the conflicting non-verbal cues removed. Mindfulness also helps, particularly just noticing how it feels to let my guard down and ask for help. Other people have prompted me to notice that nothing bad happened. Another application of mindfulness is noticing the times that I am being competent, and not writing it off as apparent competence, as I used this to invalidate the skills I had.

;

References

Linehan, M (1993a) Cognitive Behavioural Treatment of Borderline Personality Disorder. New York: The Guildford Press

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

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.

#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.