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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‘Coming Out’. Again. And again.

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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.

Stigma and Celebrity

IMG_20150720_121312Interestingly I’ve been meaning to write a blog post about stigma since I attended the College of Occupational Therapists’ Annual Conference (#COT2015) in Brighton earlier this month and heard Ruby Wax’s opening plenary, but actually it’s been the debate on Victoria Derbyshire’s BBC2 porgramme on mental health today that has finally got me writing. I debated whether there was any value in me adding to the extensive discussion on stigma and mental health, and to be honest that’s the overhwelming feeling when watching the BBC2 programme: mental health services are inconsistent, underfunded and there seems to be a never-ending discussion about stigma about mental-health problems – possibly without any real change, but still I would like to have my say even if it doesn’t add anything new. So here is my take on mental health stigma and high profile discussions.

Conference – Ruby Wax and the Power of Celebrity.

Ruby Wax gave the opening plenary at #COT2015. It was billed as “Mental Health, mindfulness and meaningful occupation”, with emphasis on the ‘mental health’ aspect delivered. Ruby discussed her own experience of becoming an ambassador for discussions about good/poor mental health in the United Kingdom and gave her view on the need for increased peer support. While Ruby’s message about challenging the shame caused by mental illness (and possibly that caused by stigma surrounding mental illness) came across clearly, I couldn’t help but feel very uncomfortable with her choice of language to emphasise her points. Ruby is a comedian. Her job is to make people laugh. She uses a type of self-deprecating black humour that I’ve often seen used by people who have experienced mental health problems. This probably works well when she delivers her show in mental health services, as she has been doing, but in this professional setting it felt inappropriate to me. What possibly felt more uncomfortable was that it appeared to be well-received by the audience. In a room full of occupational therapists, the majority appeared to be enjoying hearing a discussion that to me seemed to be advocating a message of the need to challenge stigma and shame, delivered with language that emphasised the stigma and shame (and not only about mental illness – a large number of ‘minorities’ were included in her discussion). Fortunately a quick glance on Twitter during the plenary showed that I wasn’t the only person feeling that way.

Since that plenary I’ve been thinking about the power such celebrity mental health advocates have. Ruby Wax is the first to admit she sort of ‘landed’ in the role she finds herself in quite unexpectedly. She is not a mental health professional, however she now is in a role where she is listened to and seen as a voice of authority. I feel quite sad that she gets so much ‘air time’ when I have the pleasure of following so many advocates for mental health services/issues on social media that, I feel, would be much better listened to. Perhaps Ruby’s ‘humour’ makes her more accessible to the general public, but if it is at the cost of her increasing the stigma surrounding mental health problems then I’m not sure if there’s any benefit. A celebrity has a lot of power, and I can’t help but feel that if Ruby Wax reflected on her language of delivery she could have a more powerful voice that did more good, without losing the humour.

Disclosure at Work

Shortly after #COT2015, Ruby Wax hit the headlines for her comments about not telling your employer about mental health problems. While I think her concerns are valid, particularly her understanding that in the midst of having a mental illness you might struggle to be the one to challenge workplace stigma, it feels like an uncomfortable message from someone trying to help break down some of the barriers.

Is she right? I’m not sure. My own personal experience has been that disclosure has been a very helpful thing. Throughout college/university I found that disclosing my own mental health problems got me the help and needed and it was received without judgment. I’ve also found that at times some of the people I disclosed to did not have the skills to deal with it, but they didn’t discriminate, they just didn’t really know what to do. When things were at their worst I was working for a high street shop about 10 years ago. On reflection I wouldn’t have expected them to deal very well with mental ill health, but my manager was great – quietly supportive and understanding. I have never felt pushed out of a job/course due to my problems. Maybe I’ve just been lucky.

The Victoria Derbyshire Show

On realising the topic of today’s show being a debate about mental health in the UK (available here for the next month), I postponed my day’s trip to the library to do my uni work, and I’m very pleased I stayed. If I’m honest I was intrigued to hear more from Ruby Wax as she was one of the panel. Ruby was challenged about her recent comments about disclosure at work, and while I can understand her message it came across as one that was a bit dated and based on her own experiences. Several members of the audience had experiences that completely supported her view, and perhaps I’m being a bit naive, but I still don’t feel comfortable just accepting that non-disclosure is safer or the right thing to do. Perhaps I have an unfair expectation of people in these ‘celebrity advocate’ roles. I think I want them to be the risk-takers who forge a way through and stand up for ‘the others’. Perhaps, as someone who doesn’t yet blog under her real name, I don’t have the right to expect others to do all the risk-taking.

Key thoughts from other areas of the programme.

Well, it wasn’t much of a debate! It included honest, powerful messages from people expressing their experience of mental ill-health and services either from a personal and professional position (including carers). It was obvious that many people had been failed by services and that government ‘targets’ are a thing of fiction. The non-debate was evident as almost everyone was in agreement that parity of esteem in mental and physical health is a long way from reality.
It was powerful television, and supported my view that there are many advocates out there that a better-informed, more sensitive and more eloquent than some of the celebrities that stand up and speak out. Perhaps we need those celebrities to ‘hit’ the mainstream, but going back to #COT2015 I would much rather have heard from some of the audience members for the opening plenary that squirm in my seat listening to Ruby Wax.

Eating Disorders and the Weight Question 

One of my main criticisms of the show was Victoria Derbyshire’s incessant questioning of people who spoke about treatment for eating disorders of “what weight were you at your worst?” This felt so irresponsible and showed a lack of understanding of the condition from the production team.
1. Weight is not the best indicator of the severity of a problem. My own eating disorder was at its worst and most dangerous when my weight higher. People die from eating disorders at all different BMIs.
2. On a programme that was repeatedly expressing horror at people needing to be ‘more ill’ before they got help, it was reinforcing that attitude by placing importance on a number.
3. For people who are ill, this type of reporting is potentially very damaging. For this reason B-EAT have created a set of Media Guidelines
4. I felt a strange sense of irony that a programme that was also emphasising the need for mental health symptoms to be better understood and validated, appeared to be clinging to one of the physical indicators of a mental health problem to provide some type of justification.

Being ‘Ill Enough’

This was a very sad message coming across in the programme. There was widespread agreement that early intervention was so necessary and yet many stories were shared about people needing to develop symptoms such as self-harm before they would be ‘worthy’ of treatment. It’s not a new revelation and I wonder when we’ll get to a point where people receive the help they need, as soon as they need it.

Representation of Borderline Personality Disorder

I’m probably always going to be a little biased, but I was very pleased to hear several people discussing their stories who had received a diagnosis of borderline personality disorder. It felt refreshing to hear it in mainstream media, alongside people with experience of depression, anxiety, biploar and psychosis. Not every mental illness was represented, but it seemed like a more balanced view than some other programmes. It was also interesting to hear common challenges of the diagnosis discussed, such as waiting many years to get the diagnosis and its effect of accessing services, or the challenge of the diagnosis being ‘hidden’ from the person.

Older People

I suppose the only other area I would have like to have seen discussed was the mental health needs of older people. Most of the participants were young, with only a couple over 50 and those beyond working age were notably absent. While it feels like the parity of esteem for mental and physical health is still far from achieved, although progressing, the consideration of an older person’s mental health needs may continue to be unseen for much longer.

So there we go, a slightly rambling blog post, but I wanted to have my say….

The Challenge of Language

klavesniceLanguage, and specifically the meaning of the words we choose is something that fascinates me. In healthcare it feels very important that we pay attention to the words we (as service-users/patients/clients, carers or professionals) use. There may not be a way of agreeing words that are acceptable to everyone but in exploring the words chosen, a dialogue about the implications and meaning can occur; allowing reflection, insight or understanding to develop.

I remember reading this post by Lisa Egan and it causing me to reflect. As I read I thought, “Yes, she’s absolutely right, I hadn’t considered it that way before” and yet while I fully accepted her reasoning and argument it didn’t feel ‘right’ for my own situation. That was something Lisa was clear about – how a person identifies it entirely up to them. So, I decided to write this post to explore why for me I felt it was important to refer to myself as a person with ‘x’ condition. Also, as is typical for me I wanted to explore the occupational perspective.

I recently read a chapter of an occupational therapy textbook that referred to someone as ‘suffering from [a mental health condition]’ and a ‘personality disordered individual’. I had a strong response to it but those two examples highlight two different issues. I’ll deal with the ‘suffering’ one first…

Suffering the use of the word suffering.

Well, no, actually I don’t ‘suffer’ the use of the word. It upsets me and I feel irritated, but I don’t think I am suffering. In an old post I explored this concept a bit more – wondering about the potential for it to put the person with the condition they were ‘suffering’ with into a helpless and passive role. I also wondered if the widespread use of the word for everything from ‘suffering from a cold’ to ‘suffering with schizophrenia’ had lead to it being used without question. I recently heard a news story on BBC News that emphasised just how routine this use of suffering has become. The feature was discussing a new medical test that could diagnose several conditions that had not yet shown symptoms that a person was ‘suffering’ from. Well, if the person is unaware of their illness I really question that they could be suffering. It could be argued that everyone knows that when ‘suffering’ is used it is actually shorthand for ‘is living with’, ‘is experiencing the symptoms of’ or some other form, but I question how damaging it could be in suggesting an acceptance of powerlessness to the condition. Also, what about the times when people really do feel their experience is of extreme suffering – will we be unable to hear their distress due to the normalising of the word? My final issue with it is the level of (often unquestioned) assumption by the person using it. The experience of illness, injury and disability is an incredibly personal one – the only person who can say they are suffering is the person who has that condition, and therefore experience.

Being ‘bulimic’.

I have recovered from anorexia, bulimia and borderline personality disorder (BPD). When I was unwell I often referred to myself as my condition. At the times I was fighting the urge to binge or purge and would then find myself eating vast quantities of food I would often say to myself with disgust, ‘I’m bulimic, it’s what I do, it’s the only thing I’m any good at’. So yes, I would probably have happily accepted labelling myself with diagnostic conditions as it felt so closely tied up to my identity at the time. Was it helpful? Probably not. I’ve written before about the meaning the eating disorder held for me, and how it really was a valued occupation and so it fits that ‘being bulimic’ was my occupational identity. Given that in society we often base our identities in the occupations we engage in (I’d describe myself now as an occupational therapy student and a rower as they are the two most significant occupations I engage in), it fits that at that time I was ‘a bulimic’ as the occupations related to having an eating disorder took up the majority of my day. My earlier explorations of occupations that were self-defeating helped me understand why they were so powerful for me and this realisation then makes me wonder about the effect of viewing myself as a bulimic occupational being. It feels congruent to how the experience was, and for that reason I can really understand why other people who are ill may refer to themselves as their condition, but I also think it was quite dangerous as it meant I had little reason to change. I had an identity, albeit not a desirable one but it was something, and all I had.

The issue of being ‘personality disordered’ is a little bit different. My main objection to this is to do with the level of stigma associated with the diagnosis. In my mind it evokes memories of professionals who use the term pejoratively and with a tone of hopelessness (‘personality is fixed; change cannot occur’). There is perhaps need for a separate blog post about the right name for BPD, but in the context of this one I really do feel that being a person with BPD is more helpful. There can be a tendency for people to become lost behind the stigma of the diagnosis and consideration of language choices can be a good starting point in preventing this.

Is there a ‘right’ choice of words to use?

Probably not. I think there are some uses of language to be avoided, but another person might not find the same things as unhelpful as I do, and equally may not like the words I use. Like many things I believe we need to listen (properly) to the person whose experience it is, question, reflect and be prepared to challenge our own views.

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.

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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