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.

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‘Apparent Competence is Going to Kill Me’

This is a topic that I have wanted to write about for a while, as well as receiving requests from followers to explore it after brief references to the concept in other posts. It’s also highly relevant at the moment as I continue to question whether I still slip into apparent competence, rather than genuinely being a competent person. As per the usual format of this blog, I will apply this reflection to the effect of apparent competence on engagement in occupation and performance capacity.

Firstly, some definitions and explanations. Apparent competence is a common ‘trait’ for some individuals who have Borderline Personality Disorder (BPD) and is thought of as the opposing dialectic to ‘active passivity’. Linehan (1993a) provides an excellent explanation of the concept in ‘Cognitive Behavioural Treatment of Borderline Personality Disorder’. (Other dialectics are explored in ‘Skills Training Manual for Treating Borderline Personality Disorder’, I’d recommend reading both.) Linehan’s text explains that an individual exhibiting apparent competence may have varying levels of competence and this competence is highly dependent on the situation. For example a person could be easily able to manage work demands and roles, yet struggle with personal relationships or interpersonal interactions. Apparent competence can also emerge in the form of incongruous communications. The person may state a problem or talk about a subject that evokes high levels of emotion, but without the ‘matching’ level of non-verbal communication. The theory explains that this way of behaving could be derived as a learned response to an invalidating environment, where negative emotions need to be suppressed. The consequence is that the person is unable to communicate their distress, or needs, and the invalidating environment repeats, albeit unintentionally. The problem with apparent competence is that the person, or indeed the professional working with the individual, being aware that it can happen is not enough to prevent it. To further explore the challenge of apparent competence I will reflect on some of my own experience of being ‘apparently competent’.

Can Apparent Competence Really Kill?

The title of this blog post comes from a piece I wrote at a time when my apparently competent behaviour was leaving me feeling very isolated and distressed. I was in treatment in a therapeutic community and while, by virtue of being an NHS funded client in a unit for people with very high levels of problems, people knew the level of difficulty I had I felt my distress wasn’t being understood, or communicated. When apparent competence was discussed in groups I began to understand that this limit on my communication was understandable given my background, but I still felt at a loss as to how I could communicate in a way that would leave me feeling ‘heard’. I often felt, and probably still do feel, more comfortable communicating via written media. It affords the luxury of the recipient only being able to ‘hear’ what I intend them to, without being confused by non-verbal communication that doesn’t support the statements being made. For example, I truly felt that apparent competence would kill me, by increasing my distress and despair and leaving me feeling totally alone with my problems, and I was able to convey that in a letter that I showed my key-worker. However, I would have struggled to say the same words in a tone that communicated that distress for fear of someone being able to see that I wasn’t ‘ok’. This paradox sums up apparent competence: I wasn’t ok, I was desperate for someone to realise I wasn’t ok and I was also terrified someone would realise I wasn’t ok and tried to make sure they thought I was absolutely fine.

Apparent competence is highly frustrating for both service-users and professionals. Awareness that apparent competence is an issue for the person helps, especially in highlighting the need to remember that observed performance in one area does not imply transferable capabilities, but it is often not sufficient to ‘override’ incongruous communication.

Apparent Competence and Occupation

In my experience apparent competence both enables and disables performance capacity in relation to participation in occupation. The following are examples of my own experience.

Facilitating Engagement

While this post has mostly focused on the frustrations, I was actually very grateful for apparent competence and often felt it was a useful starting point. Apparent competence alone is not sustainable as it can be isolating and disingenuous, the latter I feel prevents mindful participation in meaningful occupation, however apparent competence let me participate and provided me with access to environments and situations through which I could gain skills and become genuinely competent.

‘Appearances can be deceptive’ – I’ve lost count of the number of times people have said they had no idea as to the struggles I’ve faced. Currently, this may be because I am in a very different place to when I was in treatment. However, when I was just discharged from several years in hospital and a therapeutic community I am grateful that I was able to blend in to salsa and college as if I had no issues.

‘Fake it until you make it’ – I remember doing my first university presentation and receiving feedback about how confident I was. I wasn’t, at all. However, once I realised that no one could see my anxiety I was able to become genuinely confident and enjoy presenting to my peers. I recently presented at a learning network while on placement, with possibly less anxiety than the qualified staff.

I often find that for me, my apparent competence is ‘switched on’ when in the presence of others. While I don’t believe this is a sustainable way to live it does have benefits. For example, if I had periods where things were a real struggle and I was barely functioning at home, I knew I would manage when out. This means I can still access the things that help, for example attending university or college, meeting friends, engaging in exercise. Often I would then feel better and be able to manage self-care tasks on return home. Unfortunately this is not always true and if the disparity between my inner-world and my perceived presentation grew too wide my level of distress increased and engagement in occupation was limited.

Limiting Sustainable Engagement

As mentioned above apparent competence can increase distress, and often made my engagement in occupation feel unsustainable. While it can be a useful ‘skill’ that allowed me to participate, the level of ‘performance’ required meant there was generally a pay-out or delayed impact on my well-being. For example, ‘competently’ planning a shopping list, going to the supermarket and chatting with the checkout staff would have required such composure and masking of difficult emotions that on return home I would sit on the kitchen floor, unable to move, totally overwhelmed with all the food I had bought. At that moment I felt like a child who had no idea what to do next, 30 minutes before I looked like someone completing their weekly shop without a care in the world.

This also limited my engagement in occupational therapy (OT) kitchen assessments. I could do all the right things, with only limited reassurance needed, when cooking in the OT kitchen. When I returned home and had to face the reality of nurturing myself, in my own environment, the emotional demands of the task prevented my engagement. What was the difference? In the OT kitchen I was performing and this meant I could put my emotions on hold – the task may have appeared the same but the difference in cooking a meal for myself, out of my own volition, compared to doing it because it was an OT session and ‘that’s just what you do’, was vast.

A further example of where my skills weren’t transferable was my engagement in group psychotherapy. In the other groups in the therapeutic community I happily gave feedback to others and took my turn to speak about how I was (albeit reasonably briefly). As soon as I was in a group that didn’t have a set order to speak (in community meeting we went around the circle) I found I dissociated or just remained silent. I still struggle to claim my space today and this is something I am trying to address. I feel much more comfortable addressing the needs of other people and find myself repeating the pattern of ‘if we discuss your stuff I can hide that I’m not ok, and I’m not ok but I’m terrified you will see that, and I’m frustrated that you don’t see I’m not ok’. This also has been an issue when interacting with university with regard to placement. It felt so terrifying to say ‘I need help’ and so my communication was confusing, and then I felt more alone and unable to manage. While I haven’t completely solved this problem I do find that I am managing to ask for my needs to be met, eventually (usually at the point that I realise I feel more alone I am able to think ‘I’m doing that thing I do again, now time to go back and have another attempt at saying what I need to’), and with the help of educators and university tutors who attempt to ‘figure out’ what it is I’m saying. The next step is to get directly to the point, and cope with how that feels.

What helps?

I think this post highlights the complexity of apparent competence. I believe awareness of pattern of behaviour is useful for the person and those who work with them. With respect to the example of OT kitchen assessment above, my OT suggested supported cooking in my own home when I spoke about the challenges I was experiencing. This helped, the situation was more real and less of a performance (although not entirely), phone support while cooking alone also helped, although still there was an element of ‘I’m on the phone, must put on calm, composed phone voice’. For me writing helps, as I mentioned above I seem able to convey the facts and explain how I feel, with the conflicting non-verbal cues removed. Mindfulness also helps, particularly just noticing how it feels to let my guard down and ask for help. Other people have prompted me to notice that nothing bad happened. Another application of mindfulness is noticing the times that I am being competent, and not writing it off as apparent competence, as I used this to invalidate the skills I had.

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References

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

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

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