Language, 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.
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.