‘Coming Out’. Again. And again.

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Last week I attended the Occupational Science Europe Conference about “Health and Wellbeing through Occupation” at Bournemouth University. It was a lovely conference and very refreshing to be able to indulge in pure occupational science for two days. I also enjoyed how international a conference it was – I really valued hearing from people working and studying in different systems to the United Kingdom.

At the conference I presented a paper about self-defeating occupation  in Borderline Personality Disorder. As I predicted in my last blog post about presenting at a conference I wasn’t *quite* as avoidant about preparing for it – leaving it only until the night before this time! I felt more confident that I had valuable material to contribute, but I also had an ‘itch’ to take a step on from my last presentation and completely join things up. At the COTSSMH conference (mentioned in the earlier post) I was aware that those people following on Twitter would have the full story of how I had developed the concept of self-defeating occupations from my own experience of self-harm and eating disorders, but this was not included in the paper and so those not using social media would not know. This time I wanted to make it explicit. I felt it was important to the narrative. I felt it was important to the research concept. I felt it was important to me. I was a person whose valued occupations were ‘self-defeating’ and without understanding the importance of those occupations I couldn’t have found a new way to manage my life. I also wouldn’t have become an occupational therapist or researcher and developed the ideas further.

So yes, I included a slide that allowed me to discuss the importance of this blog in generating the research. And when it came to that slide I felt really proud to stand there and explain exactly where the idea came from. It felt honest, and congruent and real. I have no idea if anyone in the audience had any judgements or other negative thoughts, however the feedback I got was overwhelmingly positive and allowed for a much more meaningful discussion in the questions section at the end.

This experience got me thinking, yet again, about mental health stigma. It’s a topic I explored in my last blog post and I think I’ve perhaps moved a step onwards. I’ve realised how fed up I am of having to ‘come out’ as someone who has had mental health problems. Not because I’m ashamed, or because I want people to magically ‘just know’. But just because of that uncertainty of how it will be received. Most of the time I’ve found it to be a positive ‘coming out’, but there is always the fear that, just one time, it will be met with prejudice and stigma. I do love the fact that this blog and my Twitter account means that sometimes I get to meet people who already ‘know the full story’ and it’s such a lovely experience to be me, without any further discussions. And obviously there are plenty of people in the world that I meet who never know, or never need to know. But yes, it can get tiring to have to analyse and assess if it will be safe to be honest. And that needs to change. Mental health stigma needs to stop. I can see that the world is changing, but is it changing enough?

Related to this topic I was really pleased to discover that Linda Gask, a psychiatrist, has written a book about her experience of having depression. Moreover I valued the discussion on her blog about stigma and only being able to ‘come out’ after retiring. From the blog post I find myself agreeing with the sentiments about the mental health profession’s desire to deny the struggles of those who work in the field. It’s also nice to see a psychiatrist discussing mental illness so candidly. Within the blogging community I can think of many other types of professionals who discuss their own experience, but I haven’t come across many psychiatrists who do – and I can’t imagine for a moment that’s because they don’t have first-hand experience. I’ve ordered the book and am looking forward to reading it, so I may well have some more thoughts soon!

So, what have I learned? I’ve realised I’m actually happier when I can join up the person who has experience of mental health problems and services, with Sarah the occupational therapist and PhD student. It may feel risky to need to explain that side to people, and I remain very clear that there is more to me than just that experience, but as it was such a large part of my identity and has shaped who I am today it feels an important thing to do. And if me ‘coming out’ helps challenge some of the stigma that remains then I am more than happy to keep ‘coming out’, over and over.

Stigma and Celebrity

IMG_20150720_121312Interestingly I’ve been meaning to write a blog post about stigma since I attended the College of Occupational Therapists’ Annual Conference (#COT2015) in Brighton earlier this month and heard Ruby Wax’s opening plenary, but actually it’s been the debate on Victoria Derbyshire’s BBC2 porgramme on mental health today that has finally got me writing. I debated whether there was any value in me adding to the extensive discussion on stigma and mental health, and to be honest that’s the overhwelming feeling when watching the BBC2 programme: mental health services are inconsistent, underfunded and there seems to be a never-ending discussion about stigma about mental-health problems – possibly without any real change, but still I would like to have my say even if it doesn’t add anything new. So here is my take on mental health stigma and high profile discussions.

Conference – Ruby Wax and the Power of Celebrity.

Ruby Wax gave the opening plenary at #COT2015. It was billed as “Mental Health, mindfulness and meaningful occupation”, with emphasis on the ‘mental health’ aspect delivered. Ruby discussed her own experience of becoming an ambassador for discussions about good/poor mental health in the United Kingdom and gave her view on the need for increased peer support. While Ruby’s message about challenging the shame caused by mental illness (and possibly that caused by stigma surrounding mental illness) came across clearly, I couldn’t help but feel very uncomfortable with her choice of language to emphasise her points. Ruby is a comedian. Her job is to make people laugh. She uses a type of self-deprecating black humour that I’ve often seen used by people who have experienced mental health problems. This probably works well when she delivers her show in mental health services, as she has been doing, but in this professional setting it felt inappropriate to me. What possibly felt more uncomfortable was that it appeared to be well-received by the audience. In a room full of occupational therapists, the majority appeared to be enjoying hearing a discussion that to me seemed to be advocating a message of the need to challenge stigma and shame, delivered with language that emphasised the stigma and shame (and not only about mental illness – a large number of ‘minorities’ were included in her discussion). Fortunately a quick glance on Twitter during the plenary showed that I wasn’t the only person feeling that way.

Since that plenary I’ve been thinking about the power such celebrity mental health advocates have. Ruby Wax is the first to admit she sort of ‘landed’ in the role she finds herself in quite unexpectedly. She is not a mental health professional, however she now is in a role where she is listened to and seen as a voice of authority. I feel quite sad that she gets so much ‘air time’ when I have the pleasure of following so many advocates for mental health services/issues on social media that, I feel, would be much better listened to. Perhaps Ruby’s ‘humour’ makes her more accessible to the general public, but if it is at the cost of her increasing the stigma surrounding mental health problems then I’m not sure if there’s any benefit. A celebrity has a lot of power, and I can’t help but feel that if Ruby Wax reflected on her language of delivery she could have a more powerful voice that did more good, without losing the humour.

Disclosure at Work

Shortly after #COT2015, Ruby Wax hit the headlines for her comments about not telling your employer about mental health problems. While I think her concerns are valid, particularly her understanding that in the midst of having a mental illness you might struggle to be the one to challenge workplace stigma, it feels like an uncomfortable message from someone trying to help break down some of the barriers.

Is she right? I’m not sure. My own personal experience has been that disclosure has been a very helpful thing. Throughout college/university I found that disclosing my own mental health problems got me the help and needed and it was received without judgment. I’ve also found that at times some of the people I disclosed to did not have the skills to deal with it, but they didn’t discriminate, they just didn’t really know what to do. When things were at their worst I was working for a high street shop about 10 years ago. On reflection I wouldn’t have expected them to deal very well with mental ill health, but my manager was great – quietly supportive and understanding. I have never felt pushed out of a job/course due to my problems. Maybe I’ve just been lucky.

The Victoria Derbyshire Show

On realising the topic of today’s show being a debate about mental health in the UK (available here for the next month), I postponed my day’s trip to the library to do my uni work, and I’m very pleased I stayed. If I’m honest I was intrigued to hear more from Ruby Wax as she was one of the panel. Ruby was challenged about her recent comments about disclosure at work, and while I can understand her message it came across as one that was a bit dated and based on her own experiences. Several members of the audience had experiences that completely supported her view, and perhaps I’m being a bit naive, but I still don’t feel comfortable just accepting that non-disclosure is safer or the right thing to do. Perhaps I have an unfair expectation of people in these ‘celebrity advocate’ roles. I think I want them to be the risk-takers who forge a way through and stand up for ‘the others’. Perhaps, as someone who doesn’t yet blog under her real name, I don’t have the right to expect others to do all the risk-taking.

Key thoughts from other areas of the programme.

Well, it wasn’t much of a debate! It included honest, powerful messages from people expressing their experience of mental ill-health and services either from a personal and professional position (including carers). It was obvious that many people had been failed by services and that government ‘targets’ are a thing of fiction. The non-debate was evident as almost everyone was in agreement that parity of esteem in mental and physical health is a long way from reality.
It was powerful television, and supported my view that there are many advocates out there that a better-informed, more sensitive and more eloquent than some of the celebrities that stand up and speak out. Perhaps we need those celebrities to ‘hit’ the mainstream, but going back to #COT2015 I would much rather have heard from some of the audience members for the opening plenary that squirm in my seat listening to Ruby Wax.

Eating Disorders and the Weight Question 

One of my main criticisms of the show was Victoria Derbyshire’s incessant questioning of people who spoke about treatment for eating disorders of “what weight were you at your worst?” This felt so irresponsible and showed a lack of understanding of the condition from the production team.
1. Weight is not the best indicator of the severity of a problem. My own eating disorder was at its worst and most dangerous when my weight higher. People die from eating disorders at all different BMIs.
2. On a programme that was repeatedly expressing horror at people needing to be ‘more ill’ before they got help, it was reinforcing that attitude by placing importance on a number.
3. For people who are ill, this type of reporting is potentially very damaging. For this reason B-EAT have created a set of Media Guidelines
4. I felt a strange sense of irony that a programme that was also emphasising the need for mental health symptoms to be better understood and validated, appeared to be clinging to one of the physical indicators of a mental health problem to provide some type of justification.

Being ‘Ill Enough’

This was a very sad message coming across in the programme. There was widespread agreement that early intervention was so necessary and yet many stories were shared about people needing to develop symptoms such as self-harm before they would be ‘worthy’ of treatment. It’s not a new revelation and I wonder when we’ll get to a point where people receive the help they need, as soon as they need it.

Representation of Borderline Personality Disorder

I’m probably always going to be a little biased, but I was very pleased to hear several people discussing their stories who had received a diagnosis of borderline personality disorder. It felt refreshing to hear it in mainstream media, alongside people with experience of depression, anxiety, biploar and psychosis. Not every mental illness was represented, but it seemed like a more balanced view than some other programmes. It was also interesting to hear common challenges of the diagnosis discussed, such as waiting many years to get the diagnosis and its effect of accessing services, or the challenge of the diagnosis being ‘hidden’ from the person.

Older People

I suppose the only other area I would have like to have seen discussed was the mental health needs of older people. Most of the participants were young, with only a couple over 50 and those beyond working age were notably absent. While it feels like the parity of esteem for mental and physical health is still far from achieved, although progressing, the consideration of an older person’s mental health needs may continue to be unseen for much longer.

So there we go, a slightly rambling blog post, but I wanted to have my say….