Graduation

VC Medal

*brushes dust off neglected blog*

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

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

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

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

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

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

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

I have news.

mortar-board-graduate-capI am nearing the end of my undergraduate degree and I can’t quite believe it’s almost over! I’ve grown and changed so much during the three years and am excited about the future ahead of me. Which brings me to my news… I’ve recently received an offer to commence a clinical doctorate and I can’t wait to get started. I’ve always been keen to commence a research career and at the same time have loved my practice placements, so this feels like a perfect opportunity.

I haven’t fully decided what will happen to this blog in the next few months, I certainly don’t post as much as I used to and I feel that it’s served its purpose in many ways. Equally I like that the space is here should I wish to use it… Perhaps I need to re-brand as ‘pd2ot2phd’ 😉

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.

What do you know about eating disorders?

shamelessotgeek

The week of 24th February – 2nd March 2014 is Eating Disorders Awareness Week . It’s  a great time to increase your understanding, especially if your answer to my question was, “not a lot”. Check out the beat (beating eating disorders charity) website for information about eating disorders . For me, the best way to learn about disorders are through the stories of people who have experienced them. Read  recovery stories , for example  Jonathan  or Amy ‘s, and look out for how eating disorders affect roles and occupational performance, and the part occupation can play in recovery. The website has a range of information resources including a guide for athletes  and information about eating disorders in the workplace .

As a precursor to Eating Disorders Awareness Week, we will be hosting an #OTalk twitter chat about occupational therapy and eating disorders on 18 February 2014 at 8pm GMT (click the link for local time)…

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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.