Experts By Experience

In the interests of full disclosure, I was a See Change Ambassador when it launched, in 2012. At the time, I was fully onboard with what they proposed to be doing: Using people with histories of mental ill health to smash the stigma that exists around these issues. In the years since however, I have learned more, studied more, and spent more time in the space of mental health, mental illness, and mental well being. And I have revised my position.

Concerns

I still think it’s very important to listen to people who have experienced mental distress, mental ill health, emotional unwellness, and the systems and (lack of) care that exist around mental health. People with self-experience can tell us how it feels, what it’s like, and what is needed, versus what is provided. We need to listen to experts by experience about how they reacted to the responses and supports that were in place for them when they when they revealed that they were having difficulty, or were in distress. We also need to listen to the people who love, care for, and support people who have experienced emotional distress. This can only help us learn from them what they need as well – because the supporters need support; the carers need care.

I have concerns around the use of experts by experience (EBEs), however. An EBE is only an expert in their own experience. Currently, we have people who are experts in their own experiences and assuming that everyone’s distress is similar to their own, and assuming that what works for them will work for everyone. This is particularly true of ‘celebrity’ EBEs. The credence conferred on them by media can lead them to assume that they are EBEs in many different areas of mental distress, emotional distress, and mental health. I do worry that, because these people then get attention for their stories, they think that they are more qualified than they actually are.

That is problematic for a number of reasons. First of all, it elevates these people to a status of mental health ‘guru’, and of mental health expert. It means that because they are celebrities and they have the reach that they have, their way of doing things is seen as ‘the correct way’, or ‘the best way’ or sometimes the only way. This, in turn, means that people can end up feeling that by not being able to ‘heal themselves’ or ‘fix themselves’ by doing whatever it was the EBE did that they have failed. This can have the opposite effect to what is intended – it shames people who don’t ‘get better’ by doing what the celebrities tell them they should be doing.

Supports

I don’t think that the necessary supports are in place for experts by experience. There is very little training for them. There is a smidgen of media training; a few reminders to ‘mind yourself’; some briefing before, and a little debriefing after, a media appearance. In this media training, EBEs will be told that they are allowed to refuse an interview. But when you’ve been told that you’re an expert by experience; when you have been elevated to that status, it can be very difficult to feel that you can say ‘no’ to a journalist’s request. That sort of internal pressure can be difficult to navigate for people who have histories of trauma or mental ill health; they can feel that refusing to do an interview is letting the side down. There is also an element of ego involved: When people are promoted to the position of EBE, that becomes an integral part of how they self-identify. It then becomes more and more difficult to say ‘no’ because of that internalized sense of responsibility to the rest of distressed people.

If an EBE’s mental health is not robust, repeatedly telling their stories puts them at risk of distressing, and re-traumatizing, themselves. Someone who has started on their recovery will be compromised, or their recovery might stagnate, or even be derailed completely because they are constantly putting themselves in front of media, and not everyone will react kindly.

The lack of wraparound, ongoing care is also of concern to me. What happens when people share their stories? What happens when people speak about their own experiences and are set up, and promoted as, Experts by Experience? Well, what happens is that many members of the general public will see the ‘expert’ bit and be somewhat blind to the ‘by experience’ bit.  What this can mean is that these members of the public think the EBE is an expert in all areas of mental health, and can help them with their distress. This can result in people who are emotionally distressed being approached by other people who are also emotionally distressed. When the latter share their stories, in the hope that the EBE can help them. In turn, the EBE gets overwhelmed by both the stories, and the desire to help, but their lack of ability to do so.

The EBE may find these disclosures triggering, and that they are asked to help when they have no ability, or expertise, or training, in how to help. They have been portrayed as an expert, but their expertise is very limited.

Not Protected

I’m not entirely sure it’s a great idea to have experts by experience because we don’t look after them properly. They’re not protected – rather, I think that they are taken advantage of people because these are all voluntary positions. People are very rarely financially compensated for their expertise because like everything else to do with mental health in this country, there just aren’t the resources made available. If you are more than an expert by experience – if you are actually an expert by training and education – it is  less of a surprise if you produce a rate card when you agree to speak. Or speaking at these events will also be part of your full-time job, for which you are compensated.

Celebrity EBEs

Talking about being compensated, I also find ‘celebrity’ soi-disant mental health advocates hugely problematic. There’s a slew of them around at the moment. These tend to be people (usually white men), who have had a brush with anxiety, or depression, and who speak publicly about their mental health issues. They speak – and are encouraged to speak – outside their areas of expertise, they are conferred with the status of insightful teacher, portrayed as humble lads who are ‘just like you’ and who were able to conquer their mental issues. The implication being that if they could, you can, too.   

What you’re not told is that they are paid handsomely (often commensurate with how handsome they are themselves) for their appearances, for tagging their names to something as ‘good’ as the promotion of mental wellness. What you’re not told is that they have resources to access the help they need, when they need it – unlike the rest of us mere mortals.  I’m also struck by how these celebrities don’t talk about mental health difficulties beyond anxiety and depression. Now, don’t get me wrong, I have anxiety myself, but these are the more ‘socially acceptable’ forms of mental illness. We don’t hear from celebrities with bipolar disorder, schizoaffective disorder, schizophrenia, dissociative disorders, or tardive dyskinesia (although you could argue that we hear from quite a few who have narcissistic personality disorder!).

One Size Does Not Fit All

They tell us that things like lavender baths, walks in nature, talking to someone, gratitude, and mindfulness, will get us all over the hump. Who, exactly, are we meant to talk to? Mental health services are woefully under-resourced, inadequate, and working from non-evidence-based, out-dated, models.

And it’s bollocks.

What is self-care? What do they mean by that? We’re not really told – much less what self-care might look like for those of us on limited incomes. We can all find something to be grateful for, but – forgive me – being grateful for the fact I’m not living in a war zone won’t help with my cPTS. Being grateful that I have a warm home won’t diminish the mental health difficulties associated with my ADHD. And don’t get me started on the ubiquitous prescription for ‘mindfulness’. It’s just a buzzword – the latest ‘one size fits all’ panacea for the masses. Mindfulness might be useful for many, but it can be detrimental for others, and that fact is seldom addressed.
All this would be amusing if it weren’t so worrying. There is potential for harm in this current fashion for trotting out both ‘normal people’, and ‘celebrities’ who have no qualifications beyond what they have been through themselves. That doesn’t diminishes what these people have been through, but the danger is to not just the EBEs themselves. It is also dangerous for people who read how they ‘recovered’ or how they ‘healed’. They often compare themselves to these EBEs, and find themselves wanting. It’s not helpful, and it’s not harmless, it’s actually harmful.

Encourage people to share their stories of recovery, of healing, of triumph. Just do so in a way that protects everyone involved: The story-teller, and their audiences.

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