Dissociation and Occupation

winter-tree-and-fog-1355740795GPD

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

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

What is Dissociation?

‘Everyone Dissociates’

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

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

Dissociation in Borderline Personality Disorder (BPD)

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

Dissociative Identity Disorder (DID)

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

Dissociation as an Occupation

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

Enabling Participation

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

Disrupting Occupation

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

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

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

Using Occupation to Reduce Dissociation

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

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

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

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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.

Alien’s Occupational Journey

alien_frail_friendlyOccupational Alienation

Occupational alienation is a term that I closely relate to, in terms of my own mental health problems, health care treatment and recovery. So when I read that Dr. Wendy Bryant was hosting next week’s #OTalk Tweetchat on this very topic I decided I needed to avoid writing a blog about it and process my thoughts on here. I really recommend you read Wendy’s post about the Tweetchat.

Wilcock (1998) discusses occupational alienation as a negative consequence of engagement in occupations that do not align with a person’s needs and results in ‘estrangement from society or self’ (p. 257). I can think of many times that my engagement in occupation didn’t ‘fit’ with my needs, and most notably it would be the time I was engaging in a degree at a university that felt ‘too good’ for me. I perceived the subject matter and the level of study to be way beyond my abilities, and so I felt very estranged from the rest of my cohort. Perhaps unsurprisingly I became depressed, and my, already fragile, sense of self became more fragmented. The short version is that I didn’t overcome that occupational alienation and dropped out of university.

Self-Defeating Occupation as an Alienating Occupation

I’ve proposed before the concept that occupations that are ‘self-defeating’ in nature can serve purpose and meet internal needs. If you’d like to read the original post it can be found here: Self-defeating Occupation. For me, when I engaged in many self-defeating occupations their ‘fit’ with the person I experienced the world as was perfect. I was chaotic and distressed and those occupations were the only ones that provided any meaning or value at the time. So in that respect I wouldn’t support the idea that non health promoting occupations contribute to occupational alienation, however the alienation was experienced via the relationship between those occupations that were ‘right’ for me at the time and those which would be ‘socially acceptable’. My world felt very disparate to the one I was residing on, and perhaps explains why I valued online communities in which I could be honest about my occupational engagement. As part of this post on pro-eating disorder websites I discussed the unique support I found through such websites.

Symptomatic Causes of Occupational Alienation for people with Borderline Personality Disorder

I’m also conscious as I write this how much the nature of Borderline Personality Disorder (BPD) is quite a significant risk factor for occupational alienation. I’m sure there are more examples, but two of the common features of BPD seem to predispose a person to occupational alienation. As I alluded to in the opening paragraphs I experienced a very distorted sense of self. I found it incredibly challenging to know who I was, what I liked and what values I had. Consequently it was almost impossible for me to engage in occupations that weren’t going to feel alienating, because that understanding of myself was entirely absent. Linked to that is the experience of dissociation. One element of dissociation can be to experience the world as if you are watching yourself from the outside, you are removed and isolated from the world. If this occurs regularly it is unlikely that someone is going to have a sense of belonging or control in their engagement in occupation, thus exacerbating any occupational alienation experienced.
The potential for Occupational Alienation within Occupational Therapy

As I mentioned above I experienced my first university education to be a source of occupational alienation. When I dropped out I ended up needing a lot of hospital care over the next few years and this was my first experience of occupational therapy. I’ve written before about how unhelpful I found this due to receiving therapy that didn’t support my own needs and experience of the world. As someone who had become very alienated when studying at degree level being offered very low demand occupations, such as colouring in, reinforced this feeling that I was somehow destined to drift away from the world and get lost. My hope is that if the occupational therapy occurs in its ‘true sense’, that is, it really addresses the occupational needs of the person in a creative and individualised manner, it shouldn’t heighten occupational alienation but there is always the potential there. The virtue of the therapy occurring in clinical settings is often an immediate source of occupational alienation and I know I’ve had to work hard in clinical settings to minimise this risk.

Alienation versus Occupational Alienation

Wendy’s comments about the challenge of separating occupational alienation as an occupational and social construct are something I’ve wondered about. My experience of occupational alienation sometimes resulted from society having different views to myself. Those occupations were not alienating in how they aligned with my needs, but they were opposed to the values, and perhaps collective needs of society. At other times the alienation occurred because the occupation in question did not support my needs, but was entirely acceptable to society. So I suppose in my experience it can occur due to internal or external conflict between occupation and need.

Becoming an Occupational (non-Alien) Being

 

When I was a service-user in a therapeutic community I engaged in art therapy. Each week I drew a picture of Alien. Alien was lost and desperately unhappy at the start and I used his image to represent my struggles. By the end of my therapy he had managed to make a rather shaky journey to Earth, he landed and wasn’t quite sure what the next step would be but he was going to give it a try. As I reflect back on the time I can see parallels between someone who was ‘just’ feeling alienated from the world as a whole and the level of occupational alienation I was experiencing. As Alien floated around outer space I struggled to get through daily life in hospital. Alien would make tentative steps towards Earth as I attempted to find occupations  that supported my recovery and helped me begin find a space in the world. When Alien made it to Earth he was here, and pleased to be so, while also being incredibly different to the rest of the people he met, at this time I was attempting to meet people and find occupations that truly fit with who I was, rather than just being things I did to distract myself from distress or that created a contrived structure. Sadly I didn’t continue Alien’s journey! I suspect now he’d be someone who really enjoyed life on Earth and mostly forgot he had green skin and four antennae!

This is a really interesting topic and I hope to give more time to consider my thoughts and those of others more fully soon. The Tweetchat is being hosted by Dr. Wendy Bryant on Tuesday 18th November at 8pm GMT, more details here. I’m planning to be there – I hope you can join in!
Reference

Wilcock, A. (1998). An Occupational Perspective of Health. Thorofare: Slack,

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.

The ‘Perfect’ Recovery

wisdom-92901_640I usually fiercely deny that I am a perfectionist about anything, because my self-expectations are often much lower than people assume, however I’ve recently realised how much pressure I was putting on myself to have the perfect recovery.

‘Recovery’ is a pretty contentious term, and I suppose one that I hadn’t given sufficient thought to. I suspect it’s something that each person will have their own definition of, from a life totally free of symptoms, to something  more akin to a life that allows a satisfactory level of function for that person. As for what I thought, and perhaps what I now think, well, that’s the purpose of this blog post.

When I completed my time at a therapeutic community (TC) I was very worried about my ability to keep on making the level of progress I had made over the preceding twelve months. I was scared that without the high level of support a TC provides that I wouldn’t be able to cope with difficult emotions without using self-harm or an eating disorder to manage. I also believed that if I slipped at any way at all I wouldn’t be able to get back up. However, as I’ve discussed in previous blog posts , having meaningful occupations to engage with was central to my continued recovery and my progress actually continued quite quickly to a point where I felt I was ‘recovered’. It had been months since I could have been diagnosed with Borderline Personality Disorder (BPD), and while I still had some ‘symptoms’ (I had problems with dissociation and a poor sleep pattern) I was managing a very different life and one I was very happy with – in fact I felt I’d achieved the oft quoted ‘life worth living’ that Dialectical Behavioural Therapy aims to facilitate. I also felt very sure that that could be maintained with a life full of occupations that fulfilled and empowered me, as well as providing challenge, fun and restoration.

When I commenced my training to become an occupational therapist just over two years ago I know I felt I had something to prove. While my university have never been anything other than supportive and accommodating, I had a huge internal motivation to complete my course without any adjustments or help. I felt I needed to be perfect, not in terms of academic achievements, but in terms of health. During my second year I realised I wasn’t superhuman and had to accept some support to allow me to complete my placements in a way that allowed for a continuing poor sleep pattern and to attend ongoing therapy, but still I was determined that so long as all my assignments were completed without extensions then I was still doing ‘OK’. Did I still feel ‘recovered’ at this time. Yes, I think so.

In the Autumn third year began. After a long summer and my time in Moldova I had changed quite a lot and I initially struggled to adjust back to university life. But soon I was enjoying the work and the opportunity to have much more autonomy and independence in my studies, rather than completing the heavily structured modules we had in the first two years. And then I crashed. My mood dipped and I found it very difficult to engage in any of the occupations that kept me healthy and functioning. Apparent competence meant that I put on a reasonable ‘show’ of being ok to those around me, but I wasn’t. I ended up taking a few weeks off university and am now just returning to my studies. I now will be breaking my own ‘no extensions’ rule, and surprisingly it feels OK. This happened because I began to understand that I didn’t have to have a perfect recovery. I had felt that my history of BPD meant I had to prove I was 100% ‘fixed’  (this was an entirely internal feeling and not imposed by anyone else) but with the support (and most importantly acceptance) received from university tutors I suddenly realised that it was ‘OK’ to ‘not be OK’, and in doing so I began to get back towards feeling recovered.

So, for me, what is recovery? I seem to have a definition that doesn’t relate to being free of symptoms (for me some symptoms are acceptable – poor sleep or trauma-related problems, while eating-disordered behaviour, persistent low mood or self-harm would not be), but rather one that involves the level to which I can participate in the occupations I wish to. My ‘norm’ is being tired and having variable emotions related to past experiences, but so long as I can motivate myself to row, attend university and complete necessary work, look after my flat and my own self-care then I feel things are fine. When I can’t manage those things I don’t feel recovered.

I suppose this understanding is unsurprising from someone who studies the value of occupation in improving health but I’m not sure I’d been aware of how much I used occupation as a marker of health before. I had previously believed I needed to have a perfect recovery, but now understand it’s OK if it’s not always a straight path. I used to feel terrified of ‘losing’ valued occupations through low mood, lack of enjoyment or motivation but now realise that my ‘occupational health’ may dip and it can also be restored.