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

‘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….

Pd2ot Becomes an Occupational Therapist.

IMG_20150323_223948I miss blogging. I could make excuses about my lack of posts being due to being busy at work, but that wouldn’t fully explain it. When I first started writing I had so many ideas to explore and I made time for the blog. Now it’s dropped into that rather full  category of “things I’ll do when I have some free time/am not so tired/am bored”, which has a very low probability of being the chosen occupation if/when any of those situations arose. Why am I not blogging any more? I suspect it’s a combination of feeling a little like I’ve moved on a lot from ‘needing’ to explore pd2ot-type topics and a less conscious disconnection from pd2ot. However, in recent weeks I’ve had a little more time for all things pd2ot, which has reminded me how much I enjoyed writing.  So, this is going to be a pretty basic ‘catch up post’ to get me writing.

This week actually marks the beginning of my PhD. I’ve spent the last six months working full-time in my clinical role to have time to embed my skills as a newly-qualified occupational therapist and develop a better understanding of the client-group and service my research will be focused on. It’s been great. Tough, challenging, I’ve learned a lot, AND I’m really ready to start work on the research. I’ve always struggled a lot with routine and getting bored, and although my clinical work is so varied and without time to breathe,never mind get bored, I do find that I’m grateful for a new dimension to my weekly routine. I’m really excited to have 3 days every week to just focus on research.

It’s probably good timing that I’ve just returned from the College of Occupational Therapists – Specialist Section: Mental Health’s (COTSSMH) Conference at the University of Liverpool. I’m feeling motivated and ready to start my study. As I first discovered at Emerging2OT, live-tweeting added a valuable dimension to my participation in the event. I always enjoy reading other delegate’s perspectives and thoughts on the session they are attending. The only downside is when you’re following the hashtag you may read tweets from a different session that sounds unmissable. At least with tweeting you still get the opportunity to read the tweets even if it can feel like you missed out!

The live-tweeting may not have been a new experience for me. However, presenting at the Conference certainly was. I was fortunate enough to have an abstract accepted for a 45 minute seminar on self-defeating occupation, a concept I developed from this blog post. I’ve always been a little ‘last-minute.com’ with my preparation for assignments/presentations, however I was probably pushing it to the extreme with this paper as I was frantically trying to decide what to say and scribble some notes in the break immediately before the session. Fortunately it all seemed to come together in the minutes before and I actually really enjoyed presenting my work. Who knows, maybe I won’t avoid thinking about it so keenly before the next one…

Public-speaking and presenting is not something I get too worried about normally, however I suspect the content of this presentation meant I was more concerned about its reception than a piece of assigned academic work. It was my original thoughts and ideas, rather than an answer to a question set by others. I’d debated whether to include my Twitter name on my title slide and to explain where the concept originated from during my preparation. In the end I didn’t include it, but actually felt quite sad that I didn’t ‘join things up’ so fully in the end. The paper was received well and the live-tweeting that accompanied it allowed for pd2ot to be joined up with Sarah, the presenter, which felt really positive and congruent.

My experience at the COTTSMH Conference prompted me to reflect on how I feel about the ‘pd2ot’ side of me. At times I almost forget that that side ever existed. I think in my current line of work it’s quite easy to forget. So how have the first six months of being qualified occupational therapist been given my history of mental health problems? To answer that I’ll explain a bit more about what’s been happening in that time. I work in a service that is in the early stages of becoming an integrated care team, but at present the physical health side of the job dominates. I work with a great team of people, including a large team of district/community nurses. However there’s minimal formal mental health experience within the team. I think this leaves me wondering ‘how much do my colleagues understand about mental health’.

Unlike when I was a student I haven’t needed to disclose much about my mental health history as I am well and don’t need significant adjustment to my work pattern. I do, however, where a uniform that exposes my arms which are very scarred from previous self-harm. As I student I was absolutely terrified of this, and generally agreed with educators that I would wear long sleeves other than when it was necessary for infection control reasons. So in general I’d have a cardigan on when I was in the office. In fact, my university supported me to have a first placement that didn’t require me to be bare below the elbows at all, and allowed me to gradually develop the confidence to expose my arms. On my first day in this job I decided I’d just make sure I was in my short sleeves even when in the office so that I stopped needing to be self-conscious about it (fortunately my office is very warm, so that became a promise I was very relieved to keep!). In terms of reactions from colleagues it has been minimal. One person said “that looks sore” and another asked “Sarah, what happened to your arms?”. Out of the two approaches I prefer the latter. It allowed for a brief, yet honest, discussion about it. Most people, however, have not commented. Partly it feels like it’s a difficult thing for people to talk about and I’m left wondering if people actually know the cause of the scarring – I find it difficult to appreciate how much awareness of self-harm people have if they don’t work in mental health or have personal experience of self-harm. Mostly, though, it feels that my colleagues simply accept me as I am. I’ve always wondered how I’d feel if a patient commented on them. I suspect it will happen at some time but my experience to date would suggest that most people I visit have far bigger things to worry about or even notice, than some old scars on my arms.

As many people with be very conscious of, mental health problems are often invisible. Given that my mental health is pretty good at the minute, the only indicator of previous problem is the scarring. I think this probably explains why the ‘pd2ot-side’ can feel very distant at times.  As ever, I feel grateful for my experience as a service-user. There are numerous skills/experiences I wouldn’t have without it. I’m also really glad that it is not a defining feature of my experience as a clinician. I feel like I’m a BETTER occupational therapist due to my experience as a service user, but that it is not the only thing I offer the profession.

Graduation

VC Medal

*brushes dust off neglected blog*

That’s better. I’ve definitely not had much blogging-mojo in recent months. Perhaps this blog has served its purpose to some extent, although my hope is that I will still write the occasional post.  And here is one today! The title is, ‘Graduation’ although I suspect it may be a bit of a general reflective ramble.

When I started this blog it was the result of a conversation with my academic tutor about preparing myself for a career in research by having a space to regularly write and play about with ideas. It also was suggested that it could be a valuable place to explore the experience of being an occupational therapy student who had extensive experience of engagement with mental health services as a service-user. The idea was that the blog would be relatively anonymous and I could test the water of being a bit more open about my background, with the understanding that if it all went horribly wrong I would have a better understanding about the level of openness I could afford with colleagues. Fortunately it’s been a very positive experience and I’ve gained many connections, and even some wonderful friends, who knew me initially as ‘pd2ot’ before getting to know the ‘in real life’ me, with whom there has been an amazing level of acceptance. This has definitely translated into other situations as I tend to be much more open about my own history of mental health problems as I feel comfortable now about its value in my career as an occupational therapist/researcher, I also don’t worry about the anonymity any more (but I still like the ‘pd2ot’ name so hold onto it for that reason alone!).

This week I attended my graduation ceremony, following completion of my undergraduate degree in occupational therapy. The day was an amazing mix of nerves, excitement, happiness, sadness and pride. It prompted me to think about my starting point and the ‘journey’ I have been on (sorry, I hope this doesn’t come across as too ‘look at how far I have come, aren’t I amazing?’ as I hate that stuff, and equally I’m feeling reflective and want to validate the amount of effort I, and a huge number of supportive people, have put into me getting to this point). The other wonderful thing about the day was seeing so many of my cohort again, and beginning to understand just how much graduating meant to us all. It was a challenging three years and I don’t think anyone sailed through it untested, indeed many had massive hurdles to overcome along the way. I’d really love it if lots of people wrote down their ‘this is how I was at the start, and this is what I faced all the way through, and here I am now having learned x, y and z about myself’, but maybe I’m just nosey!

So yes, graduation! Well the picture above is the ‘Vice-Chancellor’s Medal for the Faculty of Health and Life Sciences’, which I won for my degree results. I was shocked when I found out, in fact I emailed a member of staff to check they’d got the right person… I guess I still lack a bit of self-belief! On a practical level I was a bit oblivious to the potential for there being prizes as the focus of my degree had never been about chasing marks. Due to previous experiences of university my only aim was to complete the degree in a good state of well-being. Of course, I always tried to produce work I was proud to hand in, but I actually has quite low expectations of the marks I needed to achieve. It was all about ‘just getting through’ and there were several points in the course where I questioned if it were possible. So yes, winning prizes wasn’t on the agenda! The other more tricky part to this is my past experience of being known for academic achievement. I have never had a good experience of getting good results in things. For this reason I decided that I would never discuss my marks with other people during this degree, and other than with very close, mostly non-uni, friends I kept that vow. So when I was told about the prizes I’d be receiving I realised that made it all a little more public! I can’t say being in the limelight for academic achievement felt at all comfortable, but it was manageable and nothing awful happened.

The part of the day that I’m probably most proud of though was being asked to give the ‘Student Vote of Thanks’. This involved reading a speech to a capacity-filled York Minster full of students, family, friends and academics. No pressure! I suspect anyone would have been a bit nervous, and I definitely was. However as I returned to my seat at the side of the stage after, I think, making a reasonable job of it I had one of those ‘Wow, I’m not sure anyone 5 years ago would have predicted that happening’. When I was part of a therapeutic community and beginning to engage in The Real World I had a real problem with being seen. When I left the therapeutic community I immediately commenced an Access to Higher Education Diploma and I remember that when faced with giving a presentation to one tutor with a video camera I really struggled. It took several weeks of my therapy time to discuss the issues around it and devise a plan of how to face it. I was incredibly uncertain of how I could continue into higher education and repeated experiences like that. So yes, four years later and there I was making a speech to, and definitely being seen by, over one thousand people. And in that moment, it felt OK to be me.

There are far too many changes to list here, but I think I feel content in the knowledge that completing my undergraduate occupational therapy degree has completely changed me. I feel so fortunate to have done it at a university that was the perfect mix of challenging and nurturing and I know that there were a lot of lecturers, tutors, friends, family and therapists who played their part in making sure I arrived at this point in one piece. (I have this image of lots of people around me ready with sticky tape to hold me together at the tough points and then some good quality furniture polish to give me a good clean up at the end… but hey, my brain is a little worn out at the minute!)

So to everyone who’s been there along the way (including all those on Twitter and here), thank you!

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.

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

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

What was my experience?

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

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

Should pro-ED sites be banned?

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

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

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

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

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

Reference

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