What's in a name?

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.

Not everything that counts can be counted.

A brief post about missed opportunities....

Last Friday at a conference, a professor presented a huge, several years-long, multi-million pound study into the relationship between heart attacks and depression. In the early 90s, a group of academics in Toronto found that depressed patients fared worse, both physically and mentally and across a wide range of measures, after a heart attack. Twenty years later, a similarly huge study in Manchester used a vast array of sophisticated quantitative measures to establish a similar link between depression and poor outcomes following heart attack. They also found that those who were depressed *before* their heart attack fared considerably better than those who developed reactive depression afterwards. The single greatest influence on both physical and emotional wellbeing was whether or not the patient had a "close confidante" to talk to. As a counsellor, this didn't surprise me but it did make me wonder whether medical staff ask what emotional support people have before they are discharged, as I suspect the focus might be on physiological recovery.

However, what I found most frustrating about this study was that for all the time and money spent and all the sophisticated scales of measurement used, nobody asked the "depressed before" patients *why* they believed their mood was better following their attack. Which, in my opinion, was a massive missed opportunity. Might it, for example, be because surviving a life-threatening health crisis encourages people to develop a different outlook on life? I realise that an individual study can't necessarily pursue every angle but as this was an unexpected finding, I would have thought researchers would follow it up. Perhaps further research is ongoing as a separate project?

I think in psychology though, the obsession with using standardised scales and measures can really get in the way of understanding peoples' actual experiences. I think there is great value to introducing a qualitative dimension to more studies. For me, it's not enough to know that something is going on, I want to know why and what it means to the people involved. Identifying trends and tendencies is all very well, but in failing to unpick these further, we are missing out on what we could have learned.

It's all in your head, isn't it?

I thought I'd write a few words about attitudes towards invisible illness. My research at the moment is leading me to investigate perceptions of visible and invisible disability and how, when the symptoms are physical but the medics can't find a cause, a condition tends to be classed as psychological in origin. Which, in some peoples' eyes, is synonymous with it not being real. It's early days in my reading into psychosomatic medicine but it's already throwing up some interesting ideas. Here are a few of them and feel free to suggest anything I've missed (a lot, as I say very early days.)

A friend of mine lives with a medical condition that causes debilitating pain, exhaustion and illness. She's registered as disabled but the invisible nature of her illness suggests to some that she isn't *really* disabled at all. I've seen her subjected to hostility and verbal abuse when, for example, after legitimately parking her car in a disabled spot, the absence of any visible signs of disability (a wheelchair, perhaps, or at least a pair of crutches) causes the self-appointed disability police to question her right to be there. Of course the majority don't say anything outright but it's there in *the look;* when someone starts to resemble a human owl as they attempt to rotate their head 360 degrees to have a good old gawp. I've watched people pass by, only to double back in order to check that her blue badge is "legit." Once they see that it is, the inference of those tuts and eye rolls is clear; "you're not really disabled" or "you're not disabled enough to qualify." It's funny how this kind of thinking transforms something that many of us take for granted (mobility, independence) into a privilege that seemingly needs to be justified. It's not a huge leap from this to seeing the few adaptations society makes for those with disabilities as advantages or evidence of special treatment. Which is important because in order to qualify for special treatment you need to prove you've 'earned' it. 

I'm not suggesting it's always straightforward to evidence the impact of visible disability, particularly in the current political climate, but when you consider that signs indicating "disability" tend to depict a wheelchair user, I suspect this visual shorthand reflects our cultural understanding of what disability looks like, with implications for disabilities or illnesses which don't fit the expected or recognised pattern.

Changes in human rights legislation (and to an extent, shifting public opinion) have ensured it's unlawful to openly discriminate against disabled people but when it comes to public perceptions, it seems that some are seen as more disabled than others. It'd be crass to suggest that people with visible disabilities aren't discriminated against, harassed or abused; they are. However, a physically disabled colleague of mine made an interesting point; she said that unlike some, she doesn't have the option to "hide" her disability. To borrow her exact words, she can't pass as able bodied "because my disability is right there in peoples' faces." This is true and has a range of implications in itself but it also raises the (implied) suggestion that those with invisible disabilities are somehow more able to choose whether they're seen as disabled or not. I wonder whether this sort of thinking is one reason why people with invisible disabilities are often portrayed as malingerers; the suspicion being that they either have control over their symptoms or that they're entirely fabricated for the purpose of playing the system. There is political capital to be gained by the notion that 'undeserving' people are somehow getting something for nothing at the taxpayer's expense; a position that's aided and abetted when newspapers gleefully report on stories of fraudulent benefit claims. Yet the idea of control over symptoms is reminiscent of "pull yourself together," "think yourself better" or "a positive attitude beats cancer!" The point is not that a person with an invisible illness is able to choose whether they're disabled on a Monday then be able bodied by Thursday, the illness or disability is always there, it's just not immediately apparent to others. As though only validation by the gaze of others can make it real. In a sense, yes, someone might potentially "pass" as able bodied but by framing it in terms which imply a person can control the extent of their illness speaks volumes as it suggests the possibility of fraud and introduces the language of suspected dishonesty.

In a system where evidence of disability is required in order to access particular services or claim benefits, this has significant consequences. The burden of proof is considerable in certain invisible disabilities. There are some which are medically validated; cancer and heart disease immediately spring to mind, but demonstrating the impact of some other conditions can be more difficult. A diagnosis may not in itself sufficient in some cases, such is the variable nature of certain conditions. Some people with severe arthritis, for example, may be able to work despite considerable pain whereas others may be bedridden. The "think yourself well" brigade would have us believe that the difference is purely psychological and that people who are severely incapacitated need Cognitive Behavioural Therapy (CBT) to address their unhelpful illness beliefs. My personal belief is that therapy can be helpful in dealing with the consequences of debilitating illness but it doesn't in itself stop pain or restricted mobility. 

Furthermore, there are conditions where both cause and treatments are contested and where the absence of cast iron biological evidence has led to a desire to classify them as psychiatric, rather than physical, illnesses. Many people living with ME / CFS are fighting against the condition being classified as psychological in origin; equivocal scientific evidence has led to some (including a number of high profile psychiatrists) arguing that the condition should be seen as predominantly psychological with physical expression. This has been strongly refuted by many, who point to the sheer variety of debilitating physical symptoms (leading, in some cases, to death) and reporting that any depressive component is secondary. After all, they say, who wouldn't feel depressed living with chronic pain and illness as well as being told they're "not actually ill?" A number of people argue that that the suggested (psychological) interventions of CBT and graded exercise therapy (GET) are frequently counterproductive and tend to make the symptoms worse. Having not researched this area specifically I can't make particularly informed comments about the evidence for either perspective but in terms of my ideas about invisible disability, I do think the evident need for validation that it's a "real" physical illness, or perhaps a group of illnesses, raises interesting questions about other forms of invisible disability, mental illness. Are they somehow "less real?" Are people angered by the potential misclassifications because a psychiatric diagnosis doesn't match their experiences of physical symptoms or because a physical illness or disability seems somehow "more legitimate?" (Less of the suspicion it may be "all in your head?") My personal belief is that away from the science, there is probably something else going on. Just because we don't know exactly what causes something and there isn't a cast iron diagnostic test doesn't make an illness less real. It's worth remembering that until relatively recently, MS was also seen as living on the border between the physical and psychological but the pendulum has latterly swung in favour of the biological. I think many people living with ME/CFS are hoping the same will be found to be true of their condition. The absence of biological markers in psychiatry hasn't made variations in mental health any less "real" but classifying an illness as psychiatric does have profound implications for peoples' treatment options, the resources devoted to it and public perceptions of those living with various conditions. The ambiguity of certain conditions challenges the authority of doctors as "experts" and in the absence of concrete answers, it's tempting to offer CBT in an attempt to reframe the illness and when this fails, to blame the patient for their inability to "think themselves well." Interesting. There will be more to come on this, I think....  

Ugly Culture

Recently I've noticed a few Twitter accounts devoted to giving anybody who is less than 100% attractive and / or photogenic, 100% of the time, a public kicking on account of their appearance. Admittedly, some of the 'characters' featured are seemingly doing their level best to look ridiculous and admittedly, some of them look pretty comical. We've all had a discreet laugh at some eccentrically attired person on the bus, a few of us might have taken a photo to show our friends but what's different about these accounts is that there seems to be something of the virtual lynch mob about them. The photos are lifted without permission from say, someone's instagram account, or captured in the street without the subject's consent, then uploaded to a centralised account along with a cruel caption or hashtag and tweeted to thousands of followers so they can all have a jolly good laugh. 

Seeing this made me wonder at what point it became ok to single someone out as an example of a "minger" or a "slob" simply because they happen to offend your aesthetic sensibilities? Whatever happened to live and let live? According to this spurious logic, being in possession of a few excess pounds, having wayward hair, funny teeth or unusual taste in clothes makes someone fair game for abuse. When exactly did it become ok to be so unkind? Anyone would think that the self-appointed appearance police have never had a bad photo taken, made a poor clothing choice or gone out looking less than perfect.

And maybe that's the point. Maybe the only way some people can feel ok about their own inadequacies is to look at someone else and say "well at least I'm not as bad as *that!*" Yet whilst it no doubt says more about the observer than the observed, I think this kind of activity is bad for us all. I think it normalises cruelty and substitutes vindictiveness for wit. If a group was to gather around a colleague's desk to mock and jeer their appearance, it'd rightly be seen as bullying or harassment and disciplinary action could be taken. Retweeting a photo of a stranger minding their own business, with the caption "check out this beast, lol" is pretty much the same thing in my book. Is that really something to lol about?

Several young people in my social circle have been made to feel less than ok about themselves on account of how they look or choose to dress. Most of us would agree this isn't fair, yet our generosity of spirit often seems to extend only to people we know, or people like us, leaving strangers as fair game. We talk the talk where internet bullying is concerned, happily sharing motivational quotes about how people should be "true to themselves and feel comfortable in our own skin." Yet so long as we are retweeting those 'comedy' photos, we are sending mixed messages; it's ok for us to look however we like, yet we reserve the right to rip the piss out of people we don't know for choosing to do exactly the same.

I don't subscribe to the idea that this is harmless banter. I think this sort of negative 'laughing at' rather than 'laughing with' coarsens our culture and eats away at whatever remaining care and respect we have for one another. I fail to see how making someone feel bad about themselves on account of their appearance or dress sense, then encouraging others to jump on the bandwagon could ever be a positive thing. It's cruelty for the sake of cruelty in a culture already chock full of challenges to self esteem. If we paid less attention to appearances and more attention to what is actually said and done, we would see where true ugliness lies.