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.

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The Elephant in the Room

…or perhaps the ‘PDtoOT’ in the room?

I’ve just returned to university to start my second year. I began the week looking forward to a year that might suit my learning style better as it’s more focused on critical thinking and appraisal of information. I’ve also had my first experience of mental health specific lectures, which have given me a lot to reflect on and are the catalyst for this post.

Before I begin I must state that I don’t believe my university is intentionally causing stigma, nor is every lecturer/workshop leader ‘guilty’ of what I’m about to describe, but I do feel that my experience this week highlights problems. I also am conscious that the topic of stigma in mental health is such a giant topic, and many of the questions floating around my head of ‘WHY are we (society) so scared of talking frankly about this?’ are too big to be considered entirely in this post, so I shall stick to my university experience.

What happened? (Albeit, in my subjective experience)

My university, thankfully, is normally very good at challenging use of language that encourages stigma. Terms like ‘Mrs X suffers with bipolar’ and ‘Mr Y was a schizophrenic man I saw on placement’ will usually be noticed and corrected. That said, I’ve heard it be said and remain unchallenged in several sessions this week. I did challenge a friend on the matter and it was met with a response of ‘Oh’. I’m not sure if, when these issues were mentioned in our first year, people sufficiently understood the effect of this use of language. I suspect some felt they weren’t allowed to use the terms without understanding why it is reductionist and encourages a victim-projection into the client.

‘Them and us’ – I was very relieved, after the majority of a lecture had been spent referring to ‘them’ (as shorthand for people with severe and enduring mental health problems), when another student raised the point of the challenge of considering vocational rehabilitation for ‘them’ when it would contain so many people with different life experiences, never mind varying severe/enduring mental illnesses. The lecturer did validate this point, however I don’t feel it was sufficient after a whole morning where I felt this client group were being considered as a very separate group, that had to be handled with kid gloves and the therapist must have very low expectations of achievement. It felt like the client-centredness approach was entirely absent. For some people a successful OT intervention may result in a small period of voluntary activity each week, but for others this would be significant failure of the rehabilitation for that client. If the lecture had been discussing physical conditions I think the expectations of what an individual can achieve would be much higher. Of course, I am aware that for some mental health problems will prohibit a return to work, but unless we are brave enough to imagine people recovering enough to lead ‘lives worth living’ I fear the profession will not help people achieve the full extent of recovery that is possible for them.

I was glad that we were encouraged to share preconceptions about mental health problems and, for those that had been on a mental health placement, how they had changed after placement. As I discuss below I value an open and frank discussion, but this all felt one-sided. Yes, the point that fears that people with mental health problems were violent was discussed as unfair, but the point was not elaborated on to increase understanding about what the reality is. For those in the room that have this preconception all they now have to go on is the knowledge that one student doesn’t believe this is true, but no understanding as to the reasons violence may happen, or about clients that would only ever inflict violent acts on themselves, or even the many clients who will have significant mental health problems, none of which involve violent behaviour of any sort. This is a point I feel can only be delivered by service-users, to truly impart understanding of the reality of mental illness and how it influences behaviour.

My final issue relates to the ‘them and us’ issue raised above. The times I felt myself cringeing most in the lectures were when I felt that people with mental health problems were being patronised, either by staff or students. I’m not sure why anyone feels this is appropriate or helpful, but comments like ‘x struggled with ;, bless him’ are not ok and actively encourage stigma. If a soldier who had recently had a limb amputated was finding a self-care task challenging I seriously doubt they would be patted on the head and told, ‘ah, bless you’. I also sincerely hope if they were finding the same task difficult due to Post-Traumatic Stress Disorder they wouldn’t be treated in this way, but after this week I’m not entirely confident of this. Again, it feels like validation of the capability, resilience and skills of clients with mental health problems is not sufficiently present.

Am I more sensitive as an ex-service-user?

I actually feel that when mental health matters are discussed in an open and frank matter, without any trace of ‘tip-toeing’ around the subject, I am no more sensitive than any other person (and possibly far less than many people). I don’t mind if people ‘get it wrong’, I also don’t mind if people have strong opinions or judgements, so long as both they and I are able to have a discussion in which both parties can express their opinion and attempt to listen to, and understand, each other. I have delivered teaching to psychologists and counsellors in which I was asked directly if my self-harm had been manipulative or attention-seeking. This did not upset or offend me, it simply pleased me that people felt able to ask directly and listen to my response.

I struggle more when I feel lectures are delivered in a way that encourages stigma and misunderstanding, due to an overly sensitive and patronising delivery. I tend to go quiet rather than offer an alternative opinion, perhaps indicative of how unhelpful and silencing such an approach would be with clients.

I am mindful of the fact that I do find myself slipping into criticism of my university regarding a somewhat incongruent approach on their behalf. I have attended lectures that highlight the poor statistics for return to work for people with mental health problems after long period of sick-leave, and discussed intervention strategies that highlight the employer’s role in allowing an adjusted return to work. This is the first point in my life where I have been able to consider full-time work for 9 years, and the area of my life that still limits my performance is a very poor sleep pattern due to re-experiencing of traumatic events. Despite this I am about to embark on my second placement that involves a significant commute. While I function very well during the day I tend to have a few hours in the morning where I feel more vulnerable, almost like an emotional hangover from the night before. I have had several discussions with my university about these matters and feel slightly ‘not listened to’. It’s not my style to make a fuss and I’m also aware that I have internalised stigma and feel desperate to ‘just cope like everyone else’, but the reality is that it hurts to feel dismissed after taking steps to admit vulnerability.

Do I have a perspective that could help my fellow students?

One thing I am very clear on is that I have no experience of what it feels like to be an OT student that is nervous about working with people with mental health problems due to lack of experience, and for that reason this is the area I need to listen to those peers who are brave enough to admit the preconceptions and fears they have, to increase my own understanding of the issue.

I’m very conscious that my experience is just one of many people who have had mental health problems. Even if my peers all knew my views and experience this would simply give them insight into one person’s experience. That said, I feel the ‘power’ of my story is that these people know me primarily as a student, most people I know struggle to imagine me as the sectioned, destructive, despairing girl that spent several years in hospital. And that is my point, both those things are true. I am the person I am today AND I’ve had significant mental health problems that I almost didn’t survive, with many professionals feeling I’d always be detained in secure facilities.

What could be done to improve matters?

It’s very early days in the semester and I’m not sure if our teaching involves service-user involvement. If it doesn’t I think this is a significant oversight and will not challenge perspectives sufficiently. I know we have some lectures and workshops in the next few weeks delivered by people who I am confident will not teach in the manner that I feel silenced by, so perhaps I will contribute more of my perspective then.

Part of me would love to deliver a session, one that discusses the experience of a young woman with BPD who is intently suicidal and ends up sectioned and on 24hr-observations with all professionals at a loss of how to help, who eventually recovered due to treatment at a therapeutic community involving intensive psychotherapy, DBT and OT, and finally reveal that person is in fact standing in the room with them. I’m sure that at some point in my career I’ll be able to challenge views in this way. However, the time isn’t now, my priority is my own learning but I can’t help feeling my learning would be much less frustrating with a teaching programme that was less ‘fearful’ of upsetting the people with experience of mental health problems.

 

 

11/10/12 Update

I considered editing this post in light of recent developments at university, but I feel it’s better to leave it as is, with this update. I’m really pleased to say the second and third weeks of term have included some fantastic teaching on a variety of psychosocial issues for occupational therapy practice. That doesn’t make my frustrations with the first week any less valid but I am grateful that the issues I raised did not continue. I’ve also had a lot of support from my tutor and placement coordinator to resolve my worries about placement, and used my own therapy sessions to explore why I find communicating my needs so difficult.

#worldsmaddestjobinterview

The (UK) Twitter world has been full of discussion about Channel 4’s recent ‘4 goes mad’ season, a series of programmes about mental health stigma, particularly in the work place. It culminated last night with ‘The world’s maddest job interview’ (http://www.channel4.com/programmes/worlds-maddest-job-interview/4od) in which a number of candidates, some with, some without, histories of mental health problems were put through a series of tests and assessed by psychiatrists/psychoanalysts and potential employers for both traits of mental health problems and their aptitude for work. I’ve just caught up on the programme, given that last night I was engaging in my own favourite leisure activity of salsa dancing (with some great friends and a very special, talented teacher who has been both a great support as a friend and also a fantastic teacher who has facilitated the recent salsa opportunities, see https://pd2ot.wordpress.com/2012/07/25/116/ ‎ for my reflection on the role of salsa in my recovery).

I have to say I was a little anxious about watching, given the response I observed on my Twitter feed, and many of the objections seem valid. This blog post is not intended to be a review of the show, but more a personal reflection on some of the key points that I took from it. I suspect some of the issues will develop into more in depth blog posts in the future.

The power of label

I suppose the first thing that struck me about the whole #4goesmad concept was the use of the word ‘mad’. Like many, I questioned the appropriateness of a supposed ‘anti-stigma’ campaign being based on a word that was stigmatising, in itself. Initially I had that ‘ouch’ feeling every time I saw a trailer or read the hashtag, but perhaps on reflection is it such an issue? If, for example, channel 4 had named the series ‘4 challenges the stigma of mental health problems’, would it have captured our imagination in the same way? Would we have had so many discussions on social media about the complexities of labels and societal judgements? Would the person with little understanding of mental health problems have paid any attention to the series? I suspect not. Channel 4 has always been a broadcaster that takes risks and sometimes steps over the line. While I’ll never be comfortable with the use of words like ‘mad’ or ‘crazy’, I can understand why it was branded in such a way. I also think the programmes did a reasonable job in highlighting mental health problems in a serious and fair light. Perhaps a feature on the power of labels and their contribution to stigma would have been the ideal compromise.

Another aspect that caused me to reflect was the frequent use of the word ‘suffering’ by both professionals and those with the mental health problems. I recently started a discussion on Twitter about my intense dislike of the description of people to be ‘suffering from OCD/depression/bipolar/personality disorder/psychosis etc.’ I am a pretty placid person, but both the attribution of the word ‘suffering’ to a person’s experience of ill health, as well as describing someone as ‘anorexic/schizophrenic/autistic’ are things that I will step on my soap box about. I was relieved to find a number of service-users and professionals shared my view that this use of language was unhelpful. It feels far too reductionist to see people as only their diagnosis, and puts them into a helpless ‘victim role’ to assume they suffer with their illness. I suppose the aspect that prompted further reflection was how many of the candidates on ‘The World’s Maddest Job Interview’ said that they had ‘suffered from bulimia/OCD/clinical depression’. I wondered how much of this was almost conditioned into them by society and medical professionals, that they used the term without thinking about how it felt for their identity. I also wondered how many of them felt that their illness was something they suffered. I believe it is a very fine line. Mental illness can be some of the most extreme torture that a person will experience, and the person does suffer. However, I don’t think it is helpful to give all the power to the illness and adopt a powerless victim role. I’ve talked before about how much I value Dialectical Behavioural Therapy (DBT) and one of the key, founding, assumptions of the therapy is that the person engaging with DBT is not responsible for the problems they have or the events that caused them, but they are responsible for how they respond and manage those problems. I think this is a much healthier approach to both Personality Disorder and also other health conditions. The person with the illness did not cause it but they can do all they can to manage it. I felt cautious of applying this logic to something with a very biological origin, like cancer, especially as a person can’t have full control of determining if a tumour grows, but feedback I got from the Twitter conversation is that there are few areas where it helps to adopt a helpless victim role.

The role of productive occupations

I think, on reflection, that this part warrants its own blog post with a little supportive reading and findings from relevant studies. However, like many, I was very pleased to hear the statement about work helping people get better. I do believe it is a far more complicated process than that. For example, a graded process building up to a goal of paid employment is more likely to be successful than simply jumping from hospital into a job. Similarly the job needs to be right for the person, finding the right balance of demand and personal growth with stress levels for each person. As with many areas I also believe that there are exceptions. Work will not help everybody. I think Occupational Therapists (OTs) have a fantastic opportunity, approach and skill-set to finding the right balance of occupational demands, collaboratively, with a person recovering from a mental illness. I think occupation is the key to recovery, and would like to explore the extent to which productive occupation facilitates recovery.

‘You wouldn’t know’

A common statement in last night’s programme seemed to be this expectation that mental health problems would be evident in some way. I suppose it caused me to reflect on how my understanding of mental health is different to the ‘average joe’. I’ve had the fortune of knowing a great many people who have had a variety of mental illnesses or recovered from them and so never had to challenge a misconception that a person with a mental health problem will be unable to function or not have any notable skills or positive attributes. I’ve also been aware of how easily hidden mental health problems are. I’ve lost count of the number of times I’ve been told that people had no idea of the extent of problems I had. From colleagues being shocked that one day I was at work, ‘fully’ functioning and the next sectioned and starting what would become a hospital admission lasting 16 months. I think it frustrates me that understanding can be so limited that people expect a person with mental health problems to appear ‘mad’. It also prompts me to think about the nature of mental health problems. Many people with such problems have difficulty displaying emotions, or perhaps developing trusting relationships in which they allow friends to know ‘the real them’. I often was frustrated by a trait of mine that was to show ‘apparent competence’. In the world of DBT this feature is assigned as the opposing dialectic to ‘active passivity’. I often struggled to relate to this particular dialectic but did feel aware that apparent competence made my life very hard. I was skilled at appearing fine, in control and competent as it protected me from people getting too close or understanding me. It also blocked all help, even in hospital I found it hard not to appear ‘ok’, even when in deep distress.

Stigma

I suppose the other element that surprised me was the employers shock at hearing a person’s diagnosis or past experience. I suppose I am very accepting of the fact that I have had significant mental health problems and nearly not survived AND I feel that I am a stronger, more resilient and highly skilled person as a result of it. Perhaps I am a little naive to believe that my potential employers would not be put off if they were to know my history, but I also think they have no need to know. As things stand I have needed no adjustments to my course and passed a demanding placement with distinction, my needs are no different to a student without a history of mental health problems. I have been fortunate that my university have been supportive, and on the whole, value the experience I have. I suppose that is the point of this blog; to increase my own understanding of my limitations and strengths due to my history, and to make others aware of the contribution ex-service-users can make to the profession. I suppose I felt that the 4GoesMad season could have benefited from a broader inclusion of mental health diagnoses. While many of the people featured had experienced severe levels of mental illness, the absence of participants who had recovered from or were managing psychotic illnesses or personality disorders felt a little stigmatising. Perhaps the main focus was given to OCD and depression as they are illnesses that most people can attempt to understand the traits of. Given that a person diagnosed with Borderline Personality Disorder (BPD) may be a similar spectrum, in terms of the diagnostic criteria, with a person who considers themselves to not have a mental health problem, it would have been most beneficial to include some of the more ‘scary’ diagnoses in the programmes, in order to maximise the potential to challenge stigma.

As I said, possibly some of this needs more time and exploration, but that’s just a summary of some key reflections for now.

‘Fitness’ to Practise

I’ve been struggling to find time to blog due to being on placement, and yet I have so many areas I want to explore. I’ll leave the more academic stuff until I have time to do it properly, but for now a reflection on the process of my recovery, prompted by experiences on placement.

A Graded Recovery

When I look back on my recovery I can see a very clear gradation; some of the latter parts were planned in a nice ‘OT way’ and other parts occurred more naturally because I was able to improve and require different levels of support. A brief summary from the point where I was requiring the highest level of support is as follows:

Psychiatric Intensive Care Unit (PICU)

Acute Ward (24hr 1:1 Observations)

Acute Ward (1:1 observations, being gradually reduced)

Acute Ward (ward based)

Therapeutic Community (In-patient)

Therapeutic Community (Day-patient), beginning voluntary work (in a fairly low demand setting), starting leisure activities.

Discharge from Therapeutic Community. Increasing voluntary work commitment (increasing both the challenge from the setting and duration), starting a college course and becoming more involved in leisure activities.

More demanding voluntary work, starting university, increased involvement in leisure and social activities.

First practice placement (decreasing voluntary work and leisure activities in order to try and preserve some restful time).

The time spent at each of the levels was not equal, but I am fortunate that while I have, at times, felt ‘stuck’ in terms of my progress, I never had to drop back a level. This is not true of the period before, as I tended to bounce between being able to be ‘managed’ on the acute ward on 1:1 observations and requiring treatment on the PICU. The purpose of the summary was to consider the many, and fairly significant, steps I have had to take to reach the point of being able to go out on placement.

The Challenge

I remember clearly a lecture earlier this year that included statistics about the poor relationship between the length of time off work due to illness and the chances of returning to work. The lecturer quoted the study by Waddell and Burton (2006) that stated that those people off work for more than 2 years are more likely to retire than they are to return to work. I remember thinking, ‘Yikes, that’s me, in fact my last hospital admission was almost that length alone’ and I wondered what challenges lay ahead of me. Of course, I’m not there yet, but as I’m currently engaged in a full-time placement I thought I might reflect on some of the challenges I’ve encountered.

‘So, why do you want to be an OT?’

It’s funny, during the year at university this question hasn’t cropped up nearly as much as I thought it would, and when it did it was very easy to give a fairly superficial answer that felt comfortable given the level of familiarity I had with the person who was asking. On placement however, I seem to have been asked this by professionals almost every day. With some I can give a nice vague answer about wanting to work with people and liking the approach used in occupational therapy, I’ll also talk about how I’d done various types of voluntary work and discovered it that way. Other people seem to want more concrete examples, like wondering how I discovered about the role of an OT and wanting to know whether I came to the place I now live to study. Now, you could argue that a lot of this stuff is none of their business, but as I am an honest person and because they are only asking to get to know me I find it difficult to be too evasive. Equally, I don’t feel replying with ‘well, I was a nightmare patient, sectioned and unmanageable who was sent for treatment here and when I realised the value of OT in my own recovery I decided to research the profession further and get experience in related settings before applying to study it’ is quite the answer I want to give. Of course, part of me feels like perhaps I should stand up and challenge the stigma surrounding mental health problems, especially personality disorder, but I’m also aware that I have the choice to manage my personal boundaries the same way anyone would on first encounters with people.

The Shadow of the Past

I feel like I am incredibly fortunate to be able to say ‘I have recovered from BPD’ but to not acknowledge that it has left its mark on me would be unrealistic. So, not only do I feel like I have 6 years of ‘crisis’ to try and account for I am still very much in a process of rehabilitation; it is not yet two years since I left full-time treatment. On a very practical level working a 5 day week is a bit of a shock to the system, not least because the one area of my recovery that still requires work is my sleep pattern. I have always found the night to be a very distressing time and while the quality of my day has improved significantly, I still struggle with lack of sleep, nightmares and dissociation throughout the night. University were very happy to discuss my needs regarding placement and we agreed the practical arrangements that would be helpful for this first experience. However, while I did move towards this point in recovery in stages I do feel a little like I’ve chosen to run a marathon while having only trained for a 5k race.

Everyday Reminders

The locality that I am on placement is not one I’d had much experience of. Bar one, slightly significant, incident involving quite a lot of blood and an ambulance. Obviously being in that area brings back some challenging memories and it can feel quite isolating as those memories are not ones I’d choose to share with current colleagues. On balance though, it feels like a great opportunity to be able to face up to some demons and create a new, more positive, experience of the location. Yes, it is a stark reminder of how difficult my life has been AND also a very clear reflection on the progress I have made.

‘Fitness’ to Practise

This post has possibly focussed a little more on the negative consequences of my life experience than is normal for me. However, I wanted to use the post as an honest reflection on how my past influences my present. I am aware that there are areas of my life that still need to be improved and that this placement is quite an increase on the demands I am putting on myself in terms of both physical and emotional energy. I think this self-awareness is vital; it’s allowing me to try and balance up other areas of my life, perhaps temporarily scaling back the leisure activities I do, replacing them with less energetic options and ensuring that I make time to rest, even if my sleep is still atrocious.  I’m also conscious that I still have work to do; that I am still very much on a journey and while I believe I am able to be a responsible and competent student I have to keep building these new, positive experiences. I also value this blog because I have a tendency to come across as incredibly competent to others. In the past I have found the trait of ‘apparent competence’ to be incredibly limiting and this has left me feeling very isolated and overwhelmed, in fact the concept of apparent competence and its influence on occupation is something I wish to explore later, but for now I feel that I’m not falling into the old trap of ‘performing’ for others while internally collapsing. This time, I am managing, and managing quite well thanks to a big chunk of mindfulness and honesty about my current situation. So yes, I am fit to practise, even if it is leaving me feeling a little out of breath!

Reference

Waddell G, Burton A (2006) Is Work Good for Your Health and Well-being? Norwich: The Stationery Office.

BPD’s Limit on ‘Fun Occupation’

It is no coincidence that at the start of a four day weekend (we’re having an additional public holiday for the Queen’s Jubilee, as well as a Spring Bank Holiday, in the UK this weekend) that I have spent my Saturday reading journal articles, and now typing this blog post. I really dislike holidays, especially official ones where there is an expectation to ‘have fun’ or at least do something special. I have gotten better at managing them but I doubt that I’ll ever be a fan of Christmas. I know many people find holidays stressful, not least because of the change in structure to our daily occupations, but it got me thinking about the effect of Borderline Personality Disorder (BPD) and engagement in ‘fun’ occupations (often leisure activities), as well as the different perceptions of things society often considers as a good thing, like holidays from work.

(Quick disclaimer; my thoughts are based on my own experience and that of the other clients I had the privilege of sharing therapy with in a Therapeutic Community (TC). I know that everyone’s experience will vary, but I am also aware that I’m in the fortunate, and relatively unusual, position of having discussed such matters with a number of reflective clients and shared in their engagement in therapy over a considerable period of time).

What is BPD’s limit on ‘fun occupation’?

I did a quick search using EBSCOhost on Personality Disorder and Occupation and retrieved limited results. Perhaps my own experience is influencing my perspective, but I believe understanding the limitations of BPD and engaging in meaningful occupation could help people with BPD to achieve the often quoted, ‘life worth living’ (Linehan, 1993a, p99). I also think there is a role for joint intervention using an OT and a dialectical behavioural therapy (DBT) approach, because in my experience, the DBT skills of mindfulness, emotional regulation, distress tolerance and interpersonal effectiveness (Linehan, 1993b) not only are often best implemented through occupation, but they also facilitate engagement in meaningful occupation that was previously impossible to achieve. That feels like another blog topic: the link between DBT and OT in recovery from BPD!

In the limited literature I found, the link between DBT and occupation was acknowledged (Falklof, Haglund, 2010) alongside explanations of how the symptoms of BPD can negatively influence components of occupation (Lee, Harris, 2010). As the skills areas of DBT are able to overcome these occupational performance limitations (in my experience, although there is evidence of the efficacy of DBT in reducing behavioural symptoms of BPD such as suicidality, depression and anger (Neacsiu, Rizvi, Linehan, 2010), which will reduce occupational competence), I feel the joint role of DBT to facilitate engagement in occupation is an area that would benefit from increased research.

Anyway, I digress. However, the above is not in vain as my thoughts on the challenges of fun occupations will include the limitations of BPD on engagement in occupation. I’m going to illustrate this discussion with a series of examples from my own life.

New Year’s Eve

I mentioned above that I’m not a fan of Christmas, but when I was ill New Year’s Eve was even more challenging. I know this can be a lonely time of year for many people, but when your whole life had been a period of chaos, distress and dissociation it was intolerable to be surrounded by people reflecting on the past year and setting out goals, full of hope, for the year ahead. I generally managed the 31st of December with quite serious self-harm and a feeling of dread of having to endure another hour, let alone another year.

Other Public Holidays

Bank/Public holidays were mainly challenging due to the interruption to my daily structure. Things like appointments with professionals would be cancelled, and when inpatient, the wards ran a weekend schedule so no OT (even though I hated it!), physiotherapy gym sessions or even ward rounds to break up the day. There would also be more visitors, often children, the presence of whom I found quite stressful. Basically, holidays changed my routines and left me feeling exposed and vulnerable. No matter how rational I was the BPD ‘fear of abandonment’ went into over-drive and I spiralled off into destructive behaviour, just because my psychotherapist was taking his statutory holidays. I hated this bit, because I could never reconcile how my emotional world would react this way when I felt I truly understood why he wasn’t in. I suppose that’s just the nature of BPD. Even the ‘little things’ during holidays scared me, I could no longer conduct my safe routine of visiting 24hr supermarkets at quiet times to buy binge food and blades, having instead to cope with the reduced opening hours and hoards of people.

Enjoyment of sunny weather

We’ve recently had some hot weather in the UK and it most definitely lifted my spirits. However, when I was ill I dreaded the warm weather, my secret self-harm and often disguised thin body were suddenly under pressure to be exposed. I hated the attention of people asking ‘are you not hot in long sleeves’ and avoided situations like foreign holidays, swimming with family/friends or simple garden parties/BBQs. This issue still remains with me, while there have not been any new scars for several years I only expose my arms around people I feel very comfortable with, I rarely swim and get so frustrated when clothes shopping.

Going to the cinema

This is an example of a fairly ‘safe’ leisure occupation that was far from straightforward. At times when I was managing to function enough to go out and fill time I would often go to the cinema as it was a place to hideaway, unseen, with a giant ‘bucket’ of diet coke and avoid food for an afternoon. Often I’d choose films that I knew had content that I’d find upsetting, simply to punish myself and cause dissociation. Even now, the cinema is something I have to be feeling pretty good within myself to manage, because even though I’ll now be there with friends, eating popcorn and watching a funny film, the memories of that time in my life are quickly evoked.

Anniversaries

Anniversaries of significant events can be problematic for people with BPD. Quite often the memory of either difficult events would result in me using serious self-harm to manage, or commonly self-harming on an unrelated important day then compounded the memory in subsequent years. Now, when certain dates appear, such as anniversaries of deaths, or dropping out of university, or even something as simple as Hallowe’en, I’ll have intense regret over the way I used to manage them. This often means I’ll have to use high levels of mindfulness to remember that I now have a different experience of the dates and that I manage my life differently.

Summary

While the discussion explore the challenges of occupations often perceived as fun for a person with BPD, it also highlighted the lasting conversion of occupations often considered neutral or benign, to evoke memories of difficult times and remain less fun than desired. For me, I’ve achieved a balance between engaging in some occupations that are completely new, and therefore have few difficult associations (but still requiring the use of DBT skills), and managing to engage in occupations I previously did, but with a new approach facilitated by high levels of DBT skill use.


References

Falklof I, Haglund L (2010) Daily occupations and adaptation to daily life described by women suffering from borderline personality disorder. Occupational Therapy in Mental Health, 26(4) 354-374

Lee S, Harris M (2010) The development of an effective occupational therapy assessment and treatment pathway for women with a diagnosis of borderline personality disorder in an inpatient setting: implementing the Model of Human Occupation. British Journal of Occupational Therapy, 73(11), 559-563

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

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

Neacsiu A, Rizvi S, Linehan M (2010) Dialectical behavior therapy skills use as a mediator and outcome of treatment for borderline personality disorder. Behavior Research and Therapy, 48(9), 832-839