OT: Disdain to Delight.

In  https://pd2ot.wordpress.com/2012/05/21/ot-is-for-thick-people/ ‎ I explored my first encounters with Occupational Therapists and why I felt their intervention was, at best, pointless. I think it’s only fair to explore the process of moving from being the client who got themselves banned from OT to the passionate student engaging in their first placement. I expect the reflection to highlight that when the issues that limited the success of earlier interventions were resolved I benefited from therapeutic occupation, but I anticipate there may  be other influences, too.

I remember I was slightly less resistant to OT sessions at periods when I was detained on a psychiatric intensive care unit (PICU). I was feeling somewhat less depressed than the period before, when OT just felt like too much effort and totally overwhelming, but the slight elevation in mood had increased my self-destruction, hence the transfer to PICU. I think, at that point, I only engaged because it was an opportunity to get off the ward (albeit to the adjacent PICU OT room, with everything locked away). However, I do feel it was a useful experience because it reduced my agitation that resulted from the containment (and tedium of 24:7 coverage of the Beijing Olympics, which was the only other realistic occupation).

But on the whole, my experience of OT in psychiatric hospital was not a good one. In fact, when I finally agreed that I would transfer to a Therapeutic Community (TC) my Consultant thought it was some kind of ironic karma that the TC allocated the OT as my keyworker. I have to admit I was convinced it would never be a happy, or useful relationship, but how wrong I was!

So, how did it all turn around?

Unsurprisingly, the fact that the OT at the TC was a highly intelligent (both emotionally and intellectually) woman that was passionate about the role of occupation was a big factor in my change in attitude. Her belief in OT was infectious, even to a sceptic like myself. She also worked at my level. She explained enough theory to me, found that my inner geek loved playing with pie charts/statistics and so encouraged me to chart my time use in graphs that I could compare month on month. But, importantly, she listened when I said ‘this is all bull****, I appear to have ‘occupational balance’ but my sleep is distressed and filled with flashbacks, I hate every aspect of my leisure – it’s all fuelled by a compulsion to exercise, and this ‘self-care’ is just me complying with the expectations of the programme to eat/cook/wash, I don’t actually want to do that for myself’. This was vital. One of my biggest resistances to OT was based on the misguided belief that OT was only about just doing the correct (correct in terms of what society believed was right, not what I wanted) occupations, and fear that I could do them and be left with the emotional torture of how it felt to be ‘doing the right thing’. Over time we worked through the aspects and found ways for me to achieve occupational balance that actually felt ‘ok’. It was a slow process and it also required input from the TC, psychotherapy and dialectical behavioural therapy (DBT).

I could go through all of the steps, but it would take forever! So, I’ll just mention the part I attribute to my recovery being transferable and sustainable to, and in, life in the community. I was incredibly fortunate to secure funding for an additional 4 months in the TC as a day patient. This gave me the opportunity to practice the new skills in the real world, to experience the likely problems I would encounter and discuss them with the community and to build up occupations that I could continue on discharge. It was an incredibly testing and emotional period and things only seemed to fall into place in the last month. The OT talked through the options I had with me, but in such an empowering way. She simply nudged me in the right direction while providing a safe space to thoroughly explore worries I had and the emotions and thoughts evoked by engaging in the new occupations. While I had done considerable work on meal preparation in the OT Kitchen at the TC, I found that when I tried to do it at my flat I was either enveloped by distress or avoided the task entirely. One of the most crucial points of the therapy was a supported cooking session in my own kitchen. At this point I truly understood the influence of context on occupations; I was a capable (albeit unsure, due to eating disordered thoughts) cook, had a well equipped kitchen and no physical limitations, but I failed to appreciate the barrier imposed by the difference in emotional experience in my own space, compared to an OT Kitchen that I could convince myself I was just performing and complying, rather than choosing to engage for myself. In terms of finding leisure activities that I wanted to participate in we discussed the issue with the eating-disordered fuelled ones and tried to discover what might provide more healthy, yet meaningful, experience. Once I, tentatively, said I wanted to dance again we explored the issues around it for me in terms of links to a difficult childhood. Once those had been problem-solved I was left to investigate and decide on the exact class and location. My hand was not held and I had autonomy. The process was not straightforward, but issues were discussed rather than the idea being abandoned as ‘too risky’ and the outcome was a more positive body image, some incredible opportunities and a group of fantastic, supportive friends.

When I left the TC I felt fairly confident that OT was the pivotal influence in me having a life I wanted to engage in and I knew meaningful occupation was essential to ensure my continued recovery. I felt I was ready for more of a challenge and knew study was the next step for me. I decided on an Access course to provide some structure without being too demanding academically. I was also preoccupied by the thought that I wanted to become an OT. I was concerned I was feeling that way to either try and find an identity in copying the career of the person who facilitated my recovery or too ‘fragile’ to so soon be considering the transition from service-user to professional. I spent a lot of time reflecting on this and also spoke to, and visited, a lot of OTs in other settings to find out if the profession interested and inspired me outside of the area I had experience of. Encouragingly, it did. In fact, the more I read and saw, the more I wanted to be part of it. The experience of the degree course has been mainly positive, at times I’ve been frustrated with feeling patronised or hand-held by lecturers, but I’ve also had equal experience of fantastic lectures and workshops and am currently on placement in a setting I had fairly low expectations of, and I’m loving every minute.

So yes, OT does delight me. I strongly feel that for me, when it was applied in a person-centred way (so, for me, including the theoretical aspects), as well as being empowering then it can enable sustainable recovery from a condition that is often felt to be a bit of a life sentence.

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Self-defeating Occupation

I had intended to explore the topic of how I moved from a disdain of OT to training to become an Occupational Therapist as my next blog post, but I discovered some literature relating to a topic I’ve always been interested in and decided to explore it first. I also have created a page with my intended future blog posts to help keep track of them.

‘Self-defeating Occupation’

This is a concept I’ve given thought to for a long time, including several years before I understood the importance of meaningful and purposeful activities to the practice of occupational therapy. For the purposes of this post I will refer to ‘self-defeating behaviour’ as SDB and define them to include behaviours I exhibited when diagnosed with Borderline Personality Disorder (BPD), namely: self-harm (primarily cutting/burning), suicidal ideation/suicide planning and eating disordered behaviours of over-exercise, restriction, bingeing and purging.

I recently read a paper by Elliot (2012) that explored the concept of ‘Occupations of Illness’, in particular relating to the effect of eating disorders on daily occupations. I found I could relate many of my own SDBs to constructs discussed in the paper, particularly to the ideas that eating disordered behaviour can turn previously neutral occupations into ones of significant meaning, and the role of such occupations influencing identity.

The Role of Self-Defeating Occupation, for me.

With regard to BPD I’m never terribly sure about whether I should refer to it as an ‘illness’, or something that happened at a certain age, due to being aware that I always had the issues that escalated to become what was diagnosed as BPD. However, for the purposes of this blog I am considering the time I had BPD to be the period of my life where it became all-consuming and significantly limited my engagement in occupation.

On reflection, I feel my goal at the time was self-destruction. I was not particularly aiming for death but more behaving in a violent and aggressive way against myself. I do remember hoping that death might occur, but didn’t feel worthy of releasing myself from the chaotic life I was living. I am also aware of just how ‘all-consuming’ the SDBs were for me. It was only later in my recovery that I was able to acknowledge that the behaviours themselves were not the issue, but the emotions and experiences that drove me to try and manage by engaging in occupations that were detrimental to my health.

I also remember feeling that there was nothing that could ever replace the power of a binge/purge to suffocate difficult emotions, or the release and calm from seeing blood flow. For this reason I decided to attribute the components of my self-defeating occupations to the occupational needs defined by Doble and Santha (2008):

Accomplishment: It is often cited that people with eating disorders feel accomplishment with seeing lower numbers on the scales or clothes becoming too baggy. While this was true for me, I also felt a sense of achievement and power for every person I could hide my problems from, becoming sicker, and weaker, almost invisibly. Similarly, being able to create huge wounds on my body ‘proved’ that I had the power to destroy and make myself more ugly.

Affirmation: My cognitions told me that engaging in SDBs and the occupations that supported them were the only thing of worth in my life. I obtained tangible results, but possibly more importantly I had a way to manage and survive. On reflection now, I do believe that while I nearly didn’t survive BPD, the behaviours kept me alive for long enough to engage in recovery.

Agency: The role of ‘control’ in eating disorders is often recognised. I think I also, mistakenly, felt that the ‘control’ of being able to put in, and remove, vast quantities of food from my body was my evidence that I had power over everything.

Coherence: For me, the coherence of SDBs with my sense of self and internal world was one of the key driving forces. I felt worthless, scum-like and evil. Therefore, abusing the body of the person that housed such a disgusting ‘person’ (I really didn’t even feel human) felt entirely appropriate. At that time, the concept of ‘being kind to myself’ would have been impossible to entertain but finding newer and more serious ways to hurt myself aligned completely with the value I attributed to my existence. My goal was punishment and destruction and repeated SDBs felt like the least I could do.

Companionship: SDBs are isolating. However, before I started using them my internal world was incredibly isolated from the rest of the world. For this reason the behaviours gave me structure, and almost a sense of ‘company’. Self-harm and eating disorders felt like part of me. While in the early years my behaviour was disclosed only to myself, latterly I did use self-help/recovery websites, and also even ‘pro’ self-harm/eating disorder websites. These forums provided the companionship of some great people, who didn’t judge but listened and just understood.

Pleasure: While I would never say that I enjoyed engaging in SDBs or say I was ‘happy’, I know that there was a real sense of contentment provided by having occupations to engage in that were ‘mine’, I did not rely on anyone else for them and I was ‘safe’ while I was occupied with them. SDBs also fought off boredom and chaotic emotion, meaning I didn’t have to engage with the ‘real world’ and was protected from it.

Renewal: I often described bingeing and purging as a sense of ‘oblivion’. Once I started into the cycle all other emotions were forgotten. The binge squashed difficult emotions while the purging felt like letting them go. I followed almost every binge/purge with self-harm, I was numb but found the sensation of the blood grounding. After both behaviours I had a sense of calmness and peace that wasn’t afforded to the rest of my life. It was temporary, often nearly fleeting, but it did provide the sense of renewal.

Replacing Self-Defeating Occupations with Occupations Facilitating a ‘Life Worth Living’.

It is understandable why, after exposing the multi-faceted nature of self-defeating occupations, replacing these occupations with new, healthier occupations was never going to be straightforward. I believe there had to be a series of stages to the process, probably even involving the stage of being contained and ‘kept safe’ in hospital for many months/years before the process could begin. I doubt I ever could have just given up the SDBs and have found new ways to manage my time without significant therapeutic input from dialectical behavioural therapy, psychotherapy, a therapeutic community, medication AND occupational therapy. However, I do believe the latter is the key to my continued recovery and successful rehabilitation. For me, finding meaningful, yet health promoting occupations to engage in was challenging: I had little experience of letting myself have ‘fun’ and enjoy things. So, while it might have seemed easy for someone like me to go shopping, or take part in leisure activities, there were so many issues surrounding this. For example; I was a competent cook and could happily create a meal for a group of 10 people, yet cooking a meal for myself left me in a state of high distress and unable to engage. Even the small things like making a cup of tea or having a bubble bath were so tied up with SDBs that it felt impossible to separate them, never mind challenge the cognitions with regard to not punishing myself.

I’m happy to say that my life now is full of meaningful, health promoting, and even ‘fun’ occupations. I hope to explore more the role of OT in recovery from BPD, particularly relating to the challenges surround doing ‘nice things for yourself’ and the role of SDBs in making neutral occupations self-defeating.

References

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

Elliot M (2012) Figured world of eating disorders: Occupations of illness. Canadian Journal of Occupational Therapy, 79(1) 15-22

‘OT is for Thick People.’

Now, before you post angry responses, let me explain.

I do not believe this to be true but it is a direct quote from myself, when I was a service-user. I also believe I have, in the past, said the same in relation to dialectical behavioural therapy (DBT). So, now that I’m training to become an OT I started musing on how the person who had such disdain for the profession came to want to be part of it. I also have been wondering, in retrospect, what my statement really meant.

I consider myself to be a fairly intelligent person, by no means a genius, but I have always enjoyed using my brain and I am naturally quite reflective. When I was ill I found this to be a bit of a nemesis; I challenged a lot of what the professionals told me (in my head, I was always outwardly fairly compliant), always thought I knew better and didn’t believe any of their interventions could help me. So, when it came to OT I failed to believe that attending sessions on baking, relaxation, computer skills and woodwork could possibly make my chaotic and hellish world ‘all better’. Especially as someone who was very good at putting a front on and ‘performing’ and ‘engaging’ in structured activities, only to suffer the emotional fall-out once back on the ward.

There were several issues with my first experiences of OT (on an acute ward and psychiatric intensive care unit). As a student the emphasis on the need for occupation to be meaningful in order for participation to be therapeutic is frequently stated, yet as a service user this wasn’t evident. Generally, my OT timetable was selected based on the sessions that had spaces and the times that I wasn’t in psychotherapy or ward round. I realise that the NHS is always going to be limited in what it can provide and know that the OTs were working with the resources they had. However, I do feel the service failed those with fairly high functional levels. I remember attending a computer workshop where I was taught how to make a basic poster in Word. As a recent university drop out (due to my mental health problems) this provided evidence that I was indeed worthless and incapable of anything more challenging. I also think that if an OT had explained to me some of the theory around occupational therapy, such as setting goals and finding a way to grade my return to the things I wanted to engage in, then I might have been better able to see the value in what I was doing. I don’t know if the OTs had any ‘grand plan’, it certainly felt that they were, at best, attempting to stave off boredom.

I’m also now using my experience to reflect on the role of the OT to challenge the choices I made. It is part of the profession that OTs have to sit with uncomfortable feelings when a client selects a goal that is not in their best interests. Park (2009) explains that if a client is competent to understand the risk involved in the choices they make, then it can be a helpful to engage in a level of risk. However, in my situation, choices to attend a woodwork session (to gain access to materials to self-harm with) or to attend cookery sessions (despite being underweight and obsessed with food, delighting in taking a plate of cakes back to the ward to ‘feed’ the staff with, never daring to eat one myself) were never challenged. These examples are of occupations that did actually hold meaning for me, perhaps just not such positive meaning as one might like. Were the OTs being incredibly client-centred in letting me choose to engage in destructive activities because they held meaning, or were they just not thinking about me and my likely volition at all. I suspect the latter. So what would I do if the roles were reversed? I think my subsequent experience of being part of a therapeutic community (TC) has taught me the value of questioning the rationale behind every behaviour. As an OT I’d try and discover why they were selecting the activities they were, and explore how it enabled goals they wished to achieve.

I often wonder why I had such disdain for OT. I do believe that the absence of understanding the rationale of the therapy was a major barrier. When you are endlessly handed sheets of colouring in to do, with felt tip pens that have nearly dried up because you can’t be trusted with a pencil sharpener, it’s understandable that you feel somewhat infantilised. Especially as art was a pretty traumatic experience at school. If someone had said, ‘what areas do you feel you can’t do the things you want and need to do in?’ and ‘Ok, let’s look at the steps we might take to get you back to that level of functioning’ I might have been more co-operative. I also would have been more convinced that I wasn’t trying to be distracted from being a nuisance on the ward if I’d been given age-appropriate (and perhaps intellect-appropriate) things to do.

This reflection has also got me back to thinking about the common topic of why occupational therapy isn’t clearly understood by non-OTs. I know when I was a service user that the staff in the multi-disciplinary team didn’t explain OT as anything other than activities to pass the time. Is it because the profession is so based on utilising activities that are essentially ‘normal’, that non-OTs don’t endeavour to understand the approach? It’s not like medicine where there are medications or procedures, or even physiotherapy where there are exercises and ‘hands-on’ treatments. For OT there is substantial theory (and increasingly, evidence) behind what we do, the methods require extensive training before the professional is ‘let loose’ and yet, because the therapy is based on things we are all familiar with and so heavily focus on enabling the client to do things for themselves, I believe the complexity of the process is often overlooked. I think it’s important that as an OT I remember this, not every client will be interested in the theory but I hope that by ensuring that, at the very least, I work collaboratively and explain the process we won’t always be seen as ‘activities co-ordinators’. I know that once I worked with an OT that explained the rationale for the intervention I was certainly more willing to engage and less resistant to being able to be helped by carefully chosen goals using occupational engagement.

Finally, on a personal level, I want to consider why I was so adamant that OT was for ‘thick people’. Mostly the answer is in the above reflection, I didn’t understand OT and felt insulted by what the staff were suggesting I do. As a person who had had an eating disorder for years I had long since mastered the art of distracting myself from a ravening hunger (or more precisely, using the eating disorder to distract myself from emotions and thoughts that felt like they had the power to annihilate me), so I felt I didn’t need people to give me further tips. I was also scared. On so many levels. I was scared that OT might help me. What if I started to be able to cook nutritious balanced meals again? I was convinced I’d be left with all the feelings and a tool-kit of functional skills that would make the disparity between my internal and external worlds even greater. I was also scared that someone would realise that I was dissociating through all of the ‘relaxation’ workshops when any of the male patients got agitated, and work out why that might be so. I got so scared that I used an OT session to seriously (and unusually for me, publicly) hurt myself so that I was banned from future sessions. So essentially, for someone who is bright, being deprived of information ensured that any OT intervention was set to fail.

I’m aware that I haven’t covered how I managed to move from this view to one of advocating occupational therapy as a profession I believe in, and want to be part of. That’s a topic for another day!

Reference

Park, S (2009) Goal Setting in Occupational Therapy: a Client-Centred Perspective. In Duncan, E. Skills for Practice in Occupational Therapy. Edinburgh: Churchill Livingstone Elsevier.

Ultimate Service-User Involvement

Firstly, I need to make it clear that in my day-to-day life my history as a service-user (SU) of mental health services actually pays a very small part in my identity. Some of my friends know my background; few of them know it in any great detail, most just see me as I present. I think this is important. I am not a label or diagnosis. I am many things: daughter, friend, student, volunteer, dancer and pet-owner. But, it would be naive of me to think I am not shaped by my past. I also think it might be sad if I did not acknowledge my experiences and credit them for helping me be the person I am today.

Which is why I created this blog. It is my opportunity to reflect on what it is like to be training to be a professional who has experience of being the one in treatment. Another disclaimer: I’m very aware that, almost without exception, every professional is a service-user to some extent. Most people will at least have a GP and Dentist, people with health issues or disabilities may access a range of services and have more extensive experience than I do. However, this is my space to consider my experience, nothing more, nothing less.

Service-user involvement is pretty common-place is most services today and I think it’s a very good thing that its inclusion appears to be growing. I’ve used services that values service-users as experts in their own experience and I’ve also used services which prefer that you remain safely in your ‘patient role’. I know which one I’d prefer to use. I also know which one was more effective for my own recovery. If I wasn’t in the middle of essay deadlines I’d do some research into the evidence-base for service-user involved services and improved outcomes; a task for another day I hope.

I consider it an absolute privilege to have experienced treatment in a therapeutic community (TC). Although, when I entered it I did so somewhat reluctantly, mostly due to hopelessness that my ‘disordered personality’ was treatable. I was very resistant to help, I was also resistant to finding anything in common with the other community members. I seem to remember describing the TC as ‘a cross between a cult and an episode of Jeremy Kyle’. (The cult reference was due to the somewhat unfamiliar terms from the therapy programme adopted, and I’ve never watched an episode of Jeremy Kyle in my life, so was just putting some angry, unfounded judgements onto the other TC members to mask my own fear.)

To me, a TC involves some of the highest level of service-user involvement, from attending our own CPA reviews (Care Programme Approach) and business meetings, to the whole community interviewing potential new staff members (and often being the ones to decide who got the post). I was fortunate enough to co-facilitate training sessions with clients and staff on topics such as suicide prevention, trauma therapy, borderline personality disorder and group therapy for professionals including nurses, OTs, counsellors and clinical psychology students. Being part of these teaching teams was an incredible experience, on every occasion we received brilliant feedback about the contribution of the service-users to the training. On a personal level the experience of solely delivering half of the training, talking about what I’d found helpful and leading discussions or running exercises was unbelievably empowering. It helped me realise that several years of hospital admissions and a lifetime of distress did not mean that I was useless as a person. At the time I felt that my life had been on hold, but my perspective changed and I realised that while I would never want to re-live my life it had given me a valuable insight that could help others (and on that note, before I get into the cringe-worthy territory of ‘I want to give back to the world to make my life worthwhile’ I’ll move on. Disclaimer number three: I hope none of this comes across as sanctimonious drivel, not my intention at all).

As an OT student, within the first month of starting the degree, we had service-users and carers come to speak to us about their experience of OT, hospital admissions, home-visits and caring for someone with an illness. However, I still feel very conscious of a ‘them and us’ division between professionals and service-users. As OTs we strive to consider people in a very person-centred way, but often it feels that service-users are still considered as ‘different’, especially in mental-health. I’ve lost count of the number of times I’ve heard incredulous students talk about patients in the vain of ‘they were actually really amazing, you know, not scary at all’. Now, don’t get me wrong, I’m glad that students are realising that mental health service users are just ordinary people, with an illness, but I do feel that there’s still a lot of stigma and assumptions to be challenged. Most of them don’t know that their peer and friend was at one point the nightmare patient: endless hospital admissions, sectioned for a year, on one-to-one observations for longer than that (and still managing to seriously self-harm) and, most ironically, the person banned from OT as they used it as an opportunity for desperate attempts at self-harm. Would it change their perceptions of service-users if they knew? Or would they see me as a damaged, vulnerable person? (I’m neither, in fact, I’m possibly more resilient than most as a result of it all). When I started my degree I chose to stop providing training as an expert service-user as I felt it blurred the boundary between me as a client and me as a professional student. I also will be keeping this blog anonymous for two reasons: it could be unhelpful for some clients to have personal information about me and so I can choose the level of disclosure I adopt in the ‘real world’.

So, should I be removing my ‘expertise’ from the contributions I make in my studies? I’m sure that I do contribute in subtle ways; as my perspectives are influenced by the treatments I’ve experienced and clients I’ve known, but could I do more to challenge some of the prejudices that still exist? I suspect, like most things, there is a balance to be achieved. Primarily I am a student, with an awful lot to learn and I am also a service-user with insight that may help me, and others, to be marginally better professionals. When the time is right I may wish to utilise this.

So… What is this blog about?

Well, I want to develop my skills in reflection and critical analysis as an Occupational Therapy student and decided a blog would be a suitable space for publishing my musings and encouraging me to do more than just read the literature.

 

I also feel that it might be helpful for myself, and others, to explore the transition from being someone who has had a lot of experience being on the receiving end of mental health services, through recovery, to becoming the trained professional delivering the services of the future.  

 

Some of the areas I imagine I’d like to write about include:

What is it like to be an OT student with an extensive history of mental health problems?

Is it helpful to try and synthesis the experience of service-user with professional? 

  • How do I manage the boundaries of disclosure and self-protection with utilising, including some incredibly privileged, insight into the experience of being a service-user?
  • How is my history received by fellow students and staff members?
  • Do I risk ‘hanging on’ to the past, or is acknowledging my history while being mindfully ‘in a different place’ just a facet of good self-awareness.

I’m also hoping to reflect on items I read to ensure I develop skills in really processing the information I encounter.

 

So, feel free to comment – I will be approving posts to protect myself and if it becomes unhelpful I will disable the feature, hopefully I’ll receive some constructive feedback and discussion.