Bipolar disorder: The truth behind 'self-binding' directives

By Molly Pavord

In the sphere of mental health discussions, there are so many contradictory forces at play. When combatting mental health with public policy, it is easy to lose site of the nuance of personal experiences.

This is particularly apt when looking at bipolar disorder, a condition which causes extreme mood swings.

In such cases, issues of capacity need to be considered, and categories of ‘sane’ and ‘insane’ are imposed by higher authorities, and so become problematically polarised.

As part of Bethlem Gallery’s ‘Mental Health and Justice Project’ which has evolved through research with King’s College and funded by Wellcome Trust, Beth Hopkin’s Future Selves exhibition evaluates and explores advanced directives for people with bipolar disorder.

Advanced Directives are forms that patients fill in to control their medical treatment in advance of becoming ill.

Wellcome Trust and King's College London, have been working to get them written into the Mental Health Act in England and Wales.

Hopkins' exhibition aims to put lived experience at the heart of research, and communicate diversity through artistic mediums.

Lucy Owen, producer of the ‘Mental Health and Justice Project’ said: “The law and mental health are these massive monolithic structures working with mass group of people and so it’s very easy to lose sight of the individual.

“Rather than shying away from these problems we’ve tried to face them straight on.

“I hope that people see this breadth of individual experience and understand that we need to keep listening to these voices from the community.

“Any policy that comes from this or about advanced directives will have an even bigger chance of success if it recognises that.”

Photo by ALAN DE LA CRUZ on Unsplash

Photo by Jurica Koletić on Unsplash

Future Selves evolved from a workshop where people with bipolar were asked to bring objects that were meaningful to them.

These objects were then bound and tied up to explore the idea of advanced directives as a ‘self-binding’ concept, which can be both a comforting and alarming concept.

Artist Beth Hopkins explained the significance of binding the objects:

She added: “Art when it’s socially engaged can have a massive impact. It’s a real way in to talking about complex ethical issues.

“With advanced directives it's largely an issue of capacity and whether you have capacity to make decisions and that’s a grey area."

She explained that art can also have therapeutic properties, and was a powerful tool for her to come to terms with her own disorder.

She said: “My root into it was very much through mental illness and it given me an identity, making work and thinking of yourself as an artist.

"It can be a tool to understand what’s happened to you; acknowledging it and putting it into the world to open a dialogue.”

Hopkins’s exhibition evolved from Bipolar UK’s survey which assessed a range of responses to advanced directives.

Hopkins said: “A lot of issues came up about whether you’re your true self when you’re unwell or manic and how those decisions are no longer valid.

“It becomes a very ethical question. Ultimately people didn’t like the idea of being tied into something.

“Advanced directives can be a really positive thing but the issue people have with it is that it can be binding.”

Images from Beth Hopkins' 'Future Selves' exhibition with a VoiceOver of Lucy Owen.

This was how people responded to Bipolar survey on advanced directives.

463 people endorsed advanced directives.

Some of the key points raised by participants of the survey who approved of advanced directives were that they didn’t feel that they were themselves when in a manic state.

One participant answered: “psychosis intrinsically, temporarily, alters one’s judgment.”

65 people rejected advanced directives.

Those who were ambivalent to the findings argued that there should be more room for them to change their mind, for example, if they had previously stated that they wanted their partner to be involved in their treatment plan that they could later retract that statement if they broke up.

37 people were ambivalent towards advanced directives.

Some of those who answered ‘no’ raised some interesting concerns about human rights and the restriction of liberty and free will.

A participant who answered ‘no’ said: “Even when I’m mad, I’m still a human and have the right to make decisions even if they are bad ones.”

This range of responses to Bipolar UK's survey illuminates the need for a personalised approach to mental health disorders.

For Beth, advanced directives were a comforting prospect and gave her the opportunity to protect herself from returning to hospital, where she had experienced prior trauma.

She said: “Having been sectioned myself, it’s a massively disempowering thing to happen.

"The hospital was more about managing people and then locking them in and I was very vulnerable. People were being injected and sedated and the primary reason was to maintain the control of the ward."

Beth was able to state very clearly that she didn't want to return to hospital and so when she did relapse she went into a crisis home and got the support she needed to get better.

She added: “I was terrified of being ill again and going back to hospital because of what happened so I viewed the advanced directive as my safety net.

“The process of writing one and making that choice, it makes you feel listened to.”

According to Bipolar UK, the average wait times for a bipolar diagnosis is 9.5 years and usually people are only diagnosed once they have become manic and are sectioned which is an extremely traumatic experience.

Bipolar UK is the only charity in the UK which focuses on this issue and it aims to raise awareness of the need for specialised treatment to prevent the traumas that occur in hospital.

Their report, Bipolar Minds Matter, shows an alarming number of reports of abuses in mental health institutions.

Deputy CEO of Bipolar UK, Rosie Phillips experienced this trauma first hand.

She said: “It’s very traumatic being sectioned, you’re restrained and taken to a psychiatric ward. That can trigger future symptoms and feelings of anxiety.

"It was a relief when I was being discharged because there was a very unclear plan of what was happening.

"I remember being in a room with three men and I had so many questions like can I work again with this condition, will I be able to work with children and was I seen as a risk. It now seems silly but I just didn’t know anything about what was happening to me.”

CEO of Bipolar UK, Simon Kitchen said: “Losing your liberty and being sectioned is one of the most traumatic things that can happen to someone.

“People don’t lose their rationality they lose their perception.

“When you’ve got that rational brain on but you’re having all these hallucinations it's a really terrifying thing, especially alongside people putting you into a car, injecting you with medication, using handcuffs and the humiliation sometimes of being taken away in front of others.

“There’s an old phrase that I got from when I used to work in Leonard Cheshire Disability that ‘change done to someone is violence and change done with someone is liberation'.

“If you’re able to go into hospital and have just a little bit of control over what happens, even though you won’t get to control everything, it helps you when you come out hospital to come to terms with the experience and think a little bit of me was making those decisions.

“It takes away a little bit of the shame and humiliation.”

What does this all mean?

Advanced directives can bring a lot of benefits such as helping bipolar sufferers to regain control over their recovery process, and protecting them from treatments which may lead to trauma.

However, not everyone views them as a positive thing, for others the fixed nature of them can be deeply problematic.

On account of these disparities, there needs to be a more nuanced approach to mental health that caters for individuals rather groups.

_{For more information on Bethlem Gallery's Mental Health and Justice Project head}_here_.

_{For more information about Beth Hopkins' Future Selves exhibition head}_here_.

_{For more information about bipolar in general, head to}_{Bipolar UK}_.