Last month, I took part in a mental health focus group with members of NSUN (The National Survivor Unit Network.) It gave me a lot to think about regarding language, stigma and personal identity within mental health. The discussions highlighted, for me, the contested (and contentious!) topic of identity and labelling within mental health. This blog post is me taking the opportunity to write and expand on some of the interesting thoughts that came out of the discussions. My ideas are a bit half formed at the moment, I don't necessarily agree with the views expressed but the discussions certainly gave me food for thought and will help direct further thinking and reading. Those taking part in discussions consented to the use of their words in this blog and all names have been changed for the purposes of anonymity.
Discussion started around the question "what do you tell others about your mental health?" This led to a conversation about the benefits or otherwise of disclosing about mental health difficulties in non-official situations. Opinions varied, with some people saying they were generally open about their own mental health (where appropriate), and others saying they preferred to keep disclosure to a minimum until they felt they knew someone reasonably well.
Context was important. Angie said "Well I didn't have a choice about disclosing in certain situations. First of all I was sending in sick notes to work, then occupational health needed to know, then I went onto SSP and was claiming benefits. Practically every form I filled in wanted chapter and verse and friends and family knew and were always asking how I was doing so it felt like my health had become public property. So that made me a bit more choosy privately about who I tell. If it's relevant I will, but otherwise, no."
Mark agreed about the importance of context and that sharing information about his mental health sometimes made him feel it was no longer his own, "I'm fine talking about it if it's relevant. Or with people that know me and ask how I am but really want to know. What I've found though is if I mention mental health to people I don't know well, I'm asked about it like 'why? What's wrong with you?' And that gets my back up. People are curious which I don't think is always a bad thing but some people think me telling them anything entitles them to an opinion and that I should listen to it. So this thing I live with every day isn't my own any more. But not in the way of a problem shared is a problem halved. Everyone's an expert when they know someone who's been depressed. So to save on all that, I tend not to say. The way I look at it is that it's mine, so they're not entitled to an opinion."
Simon agreed, "I think it depends who it is and why they want to know. If it's so they can understand something, fine. If it benefits them more than it benefits me though, I just keep it really general." Simon went on to explain that for him, identifying as someone with a particular diagnosis had been both positive and negative. He acknowledged that it had opened doors to accessing health and social services, helped him form an identity and given him something around which to organise requests for practical and emotional support. However, more recently he had begun to self-identify as a "survivor", which to him had become a way of publicly acknowledging living with mental health challenges, as well as his experiences in the psychiatric system, which in his words had at various times been "good, bad and indifferent, but occasionally traumatic. The very system that kept me alive also had me locked into a way of thinking that did me no good at all." As such, he now sees the idenity of 'survivor' as more fitting and appropriate than being specific about a diagnosis.
This moved the conversation on to whether it's necessary to disclose a diagnosis socially in order to feel acknowledged and understood, and whether it's possible to identify as someone with mental health difficulties without being stereotyped or pigeonholed. Some members of the group felt that by publicly identifying with a particular diagnosis (using terms with which people are already familiar) this conveys the hopeful message that mental health issues are common but at the same time, people are resilient and able to find creative ways to live with them. Ultimately, they argued, this might help to reduce stigma. Others disagreed, arguing that by disclosing a diagnosis they are potentially giving people the opportunity to view them through a diagnostic lens first, encouraging the idea that they are ill (bearing in mind not everyone with mental health difficulties considers themselves to be unwell.) Others felt that being open about a diagnosis encourages others to see everyday interactions with that diagnosis in mind, perhaps in a stereotypical manner, something they found dehumanising and stigmatising. However, as Trish pointed out, "being able to talk about your mental health at all is progress compared to the days when mental health was something to be ashamed of."
Certain members of the group believed that the choice to disclose mental health problems had implications beyond simply being a matter of personal choice. Mark, for example, expressed the view that it isn't a straightforward case of "self-imposed identities good, labels given by others, bad" because "sometimes the labels we give ourselves are just as damaging."
In Angie's opinion, "identifying so strongly with a diagnosis that it becomes part of who you are might be really unhelpful." She described her discomfort when others choose to talk about their own mental health in particular ways; "When I hear anyone say something like 'I'm bipolar,' I cringe. How can you BE bipolar? You might live with it, you might have it, you might even suffer from it, although personally I hate that term, but you can't actually be it. Why would anyone want to be defined by something they see as an illness?"
I'm not sure whether people actively seek to "define themselves" in relation to a mental health diagnosis, surely only they can say what particular meaning this holds for them, perhaps it's more a case of them acknowledging something that has formed an important part of their life? But still, Angie's opinion was that "sometimes it becomes bigger than the person." Some members of the group argued that identity is a matter of personal choice, so it's not appropriate for others to decide what language someone else should or shouldn't use. Others believed that because language has power that extends beyond the individual, it can never be an exclusively personal issue.
Everyone agreed that raising awareness of mental health issues and reducing stigma were positive things to work towards, but there was some discomfort around the particular type of "visibility" on offer. Angie described it as follows: "I get what you mean about stigma but I'm not ok about being an ambassador for mental illness. How can I if I don't see myself as ill? The anti-stigma campaigns are based on the idea we're ill and we can't help it. Why should I feel under pressure to define myself in a way that doesn't feel right just because it's more comfortable for others?"
Others spoke about the individual's right to choose how they self define, considering the important thing to be that people have a choice. "Except" said Mark, "it's not a choice if all the options available say there's something wrong with you!" Mark suggested that identity has wider implications because "certain labels come with inbuilt limitations."
To me, this brought to mind the social model of disability, which suggests that a person isn't in themselves disabled, but that society effectively disables the person by creating a physical and social world where not being disabled becomes the "norm" and anything else is seen as deviant. Our reluctance to accommodate human diversity leads to some becoming disabled, sometimes in the physical sense of being unable to gain access, or in the more figurative sense being constrained by attitudes about what people can or cannot do. The "impairment" (the approved term in social models of disability, I'm told) is real, but the "disability" is socially created. Labels can be limiting as they invite the observer to 'construct' a range of possibilities for the disabled person, often using the observer's own standard of reference, particularly problematic if that observer happens to be non disabled. This can lead to inaccurate and patronising assumptions about what a disabled person can and can't do.
Simon wondered whether in choosing not to self disclose in order to save his mental health from becoming public property, this renders him invisible, so he cannot then challenge prejudice and misinformation. Trish said she understood this and that in her opinion, the best way to challenge stigma would be if everyone was more open about their mental health. After all, "choosing to be silent about your own stuff doesn't change the prejudice others face." Which was an interesting point.
I think these exchanges show that it would be a mistake to assume that "mental health service users" are one and the same. Having a diagnosis in common should not imply sameness any more than having brown hair or blue eyes should imply commonality.
