Dr. Eleanor Longden is an award winning postdoctoral psychology researcher with a specialist interest in psychosis, trauma and dissociation. Her 2013 TED talk on voice hearing was featured on the front page of the Huffington Post, named by the Guardian newspaper as one of the ‘20 Online Talks That Could Change Your Life’, and in its first year online was viewed 2.5 million times and translated into 33 languages. She is the author of Learning from the Voices in my Head (TED Books, New York: 2013), in which she emphasises the value of promoting creative, person-centred approaches that acknowledge the experiences and expertise of psychiatric patients more fully. She is a trustee of Intervoice and the UK Soteria Network, a faculty member of the International Centre for Recovery Action in Practice, Education, and Research (ICRA) and a working group member of both the International DSM-5 Response Committee and the Global Summit on Diagnostic Alternatives.
Nilam: Your TED Talk has a lot of people interested in the mental health conversation, with nearly 3 million views. That’s a lot of attention. What was it like for you beforehand?
Eleanor: I was incredibly nervous in the run up. In fact it was agony – like waiting to take an exam in front of a colossal audience! TED is such an institution and carries an enormous amount of prestige, so it’s hard to try and rise above that and approach it like you would any other presentation. The delegate list that year included people like Bill Gates, Al Gore, Jim Carrey, and Neil Gaiman, and Bono was on the stage a day or two before me. I even sat in the green room and had my microphone put on with Ben Affleck…. A part of me was thinking “what am I doing here, I’m just a former mad person from Bradford!”
Nilam: A former mad person from Bradford with a very popular TED Talk! What kind of feedback are you getting now after the talk?
Eleanor: The positive response has been truly wonderful. Mental health is quite a niche area, in the sense that it’s not a cause most people necessarily want to get behind. So the level of attention was genuinely unexpected. I feel very privileged to have had the opportunity to get this message to a mainstream audience that wouldn’t necessarily hear it otherwise.
Nilam: How has this level of attention affected your mental health?
Eleanor: The visibility has felt a bit surreal at times, but it hasn’t had a negative impact on me. Having experienced such serious difficulties in the past has given me very useful skills in managing emotion and taking care of myself – more than I probably would have done if the breakdown had never happened – so I knew before I did the talk what I’d have do to cope with the aftermath. I’m also fortunate to have an amazing support network of friends, families and colleague who always keep me going!
Nilam: In your presentation, you spoke about learning to listen to the voices in your head. You said you learned to interpret the hidden message behind the increasingly violent voices. What inspired you to listen?
Eleanor: Several things. One was a sense of defiance – that my ultimate retaliation against the people who had hurt me was to have the best life possible; the rationale of moral justice that says ‘living well is the best revenge.’ And I knew that if I was ever going to recover, then it was essential to learn how to live more peacefully with the voices. In this respect a crucial turning point was making contact with the UK Hearing Voices Network. They were an absolute revelation, and they outlined a framework in which voice hearing could be understood as meaningful – messages and metaphors about emotional problems in my life, and representations of the considerable trauma I’d experienced in the past. In turn, I began to learn how to communicate with the voices more productively and empathically, and to understand them (as well as my other experiences, like self-injury, anxiety, and paranoid beliefs) in a more compassionate way. Not as symptoms, rather as adaptations and survival strategies: sane reactions to insane circumstances. The voices took the place of overwhelming pain and gave words to it, and probably the most important insight was when I realised that the most menacing, aggressive voices actually represented the parts of me that had been hurt the most. As such, it was these voices that needed to be shown the greatest compassion and care – which of course ultimately represented learning to show compassion, love, and acceptance towards myself. My voices seemed like the problem; they were actually the solution, an inextricable part of the healing process. I recently read the writer Jeanette Winterson’s autobiography, and she describes this concept beautifully: “I often hear voices. I realise that drops me in the crazy category but I don’t much care. If you believe, as I do, that the mind wants to heal itself, and that the psyche seeks coherence not disintegration, then it isn’t hard to conclude that the mind will manifest whatever is necessary to work on the job.”
Nilam:One of my favourite lines in your talk is when you said “There is a great need in Psychiatry to ask ‘what happened to you?’ and not ‘what’s wrong with you'”. That’s a powerful statement. Can you tell us a bit more about that?
Eleanor: I’ve always liked that slogan, because it encapsulates the limitations of pathologizing and medicalizing a person’s distress rather than trying to understand what’s happened to make them feel that way. A turning point in my own recovery was meeting a wonderful psychiatrist, who absolutely didn’t subscribe to the idea of me as ‘schizophrenic’ – or any other label for that matter. “Don’t tell me what other people have told you about yourself, he would say, “Tell me about you.” This was a sentiment that really resonated with me, because up until that point my family and I were told that what was happening to me was just a bit of biological bad luck to be endured – rather than a complex, significant, and meaningful experience to be explored and made sense of. In the last decade there has been an absolutely enormous amount of research emphasizing the links between mental health problems and life conflicts and difficulties; things like abuse, poverty, bullying, discrimination and other experiences of loss, stress, and adversity. Likewise, we now know that many of the neurological changes observed in psychosis can actually be accounted for by environmental stress. Yet so often, people are told that their responses to painful events are a sign of disease, for which medication is the only effective option. If I had believed that message, there is absolutely no possibility I would have the kind of life I have now. Psychiatric services are not responsible for the factors that drive people to madness. But what they can and should do — what I believe they are morally obliged to do — is address the repercussions of these experiences in more constructive and restorative ways. I contributed to a recent report by the British Psychological Society which really tried to address the need for a more balanced approach to psychosis. Amongst other points, we emphasise how unique individual experience is, and that while some people find diagnosis and medication a helpful framework, this is not true for everyone and more choices and options need to be offered.
Nilam: You mentioned that your family was a great support to you. How were they able to reach you during your most difficult times?
Eleanor: My mother in particular absolutely never gave up on me, and refused to believe the pessimistic messages she was being given from mental health services about ‘chronic, incurable brain disease.’ She felt very strongly that this wouldn’t be the most defining thing that ever happened to me, and that I would be able to go on and have a good and happy life. She was also able to tolerate and validate the extremity of my distress – not trying to suppress it, or deny it, but to bear witness to what I was feeling. And finally, she was an absolute natural at helping me cope with the voices; she accepted that they were very real to me, but was simultaneously able to explore the meaning of them in a way that was very pragmatic, gentle and non-threatening. It reinforced my view that while mental health professionals have extremely valuable skills, it’s a fallacy to believe that a person needs a string of qualifications to support someone in distress. To claim that’s the case means we de-skill the whole community, and underestimate the powerful impact of compassionate human connections. In general, I was incredibly fortunate to have people who held the hope for me – relationships that really honoured and acknowledged my resilience, my worth and humanity, and my capacity to heal. I used to say that these people saved me, but what I now know is that they did something even more important: they empowered me to save myself.
Nilam: Your life is an inspiration in that you have not only successfully managed to live with a very misunderstood diagnosis but are now advocating to create change in the field. Can you tell us about how you made that leap?
Eleanor: Jacqui Dillon, the Chair of the English Hearing Voices Network, talks about “trusting the [healing] process”, and I think once I’d learnt to put faith in my own healing process – and to start to really believe in my capacity to thrive and recover – then it stopped feeling so overwhelming. But I spent many years before that feeling utterly lost and tormented. Trying to cope with the voices, let alone acknowledge my emotional pain, felt like attempting to detonate a bomb: and at times it seemed as if I was literally fighting for my life. Ultimately though, I began to realise that in trying to get back some control, I had little left to lose but possibly everything to gain. I think that a sense of hope for a better future began to grow stronger, gradually becoming a more defining part of me than the pain and bleakness. The enormity of it seemed insurmountable, but I reminded myself of the slogan used by the human rights charity Amnesty International: “Better to light even a little candle than to curse the darkness.” That’s really how my recovery journey started: with tiny steps. In Touching the Void, the mountaineer Joe Simpson describes a torturous, three-day journey crawling back to his base camp with a shattered leg. To avoid becoming utterly overwhelmed, he instead focused on shorter, more achievable stages: reaching the end of a crevasse, getting to an outcrop of rocks. I essentially applied similar reasoning to my own situation. I was increasingly conscious of what my own ‘base camp’ represented — happiness, peace, meaningful relationships, respect, and acceptance — but was also aware that if I became too preoccupied with this ideal (with no clear idea of how to accomplish it), there was a risk of becoming so daunted and discouraged that I’d simply sink to my knees and give up. So to prevent becoming overwhelmed by the extent of the journey ahead, I focussed on getting motivated for more manageable goals on a day-by-day basis: practicing coping strategies for the voices, doing self-care activities, learning relaxation techniques and so on. Over time I grew more ambitious, which involved beginning the gruelling process of making sense of the voices (and in turn the traumatic life events they represented). And later still, it included getting a paid job in NHS mental health services, then returning to university to study psychology and starting work as a trainer and public speaker.
Nilam: How do you stay inspired?
Eleanor: Much of my work is driven by what the trauma theorist Judith Herman calls ‘the survivor mission’; the idea that you transform your own tragedy and endurance by making it a basis for social and political action. I can’t undo all the horror and heartbreak I’ve experienced, but I can own it — and in doing so, use it as a force for positive change. But primarily what keeps me inspired are the heroic and dedicated people I meet in my work: whether fellow survivors, family members, activists, clinicians, or academics, all of whom share my passion for social and psychiatric change. Many of them have encountered some form of oppression, injustice, or cruelty, but regardless they are filled with hope, humour, and humanity. They have an endless awareness and enthusiasm, whether for their own personal journeys, or with wider political and social concerns. They are a constant reminder that the human spirit not only endures, but prevails and thrives, and they help me embody and identify very strongly with the sentiments of Ernest Hemingway: “that the world is a fine place, and worth fighting for.”
Nilam: On #LetsTalkDay, what’s the one thing you’d really like to talk about?
Eleanor: Social justice – the importance of not pathologising an individual’s response to painful circumstances, but rather taking collective responsibility for the suffering and injustice we inflict on one another. Rebranding the effects of oppression, trauma, and loss as mental disease directs attention and resources away from creating safer, fairer, and more equitable communities — a society in which the vulnerable are protected and more individuals are able to flourish and thrive. There is an now an enormous amount of evidence that psychological distress, including experiences that get labelled as ‘schizophrenia,’ originate in a social and political context, and this means we need to be shifting towards social responses, political solutions, and mental health services that are based on meaningful relationships rather than chemical ‘quick-fixes’. This might sound naïve and idealistic – unattainable even. But as Oscar Wilde observed, “A map of the world that does not include Utopia is not even worth glancing at, for it leaves out the one country at which Humanity is always landing. And when Humanity lands there, it looks out and, seeing a better country, sets sail. Progress is the realisation of Utopias.”
Interview by: Nilam Chhetri