The voices in my head: Eleanor Longden's 'psychic civil war'

In 2010 I made a radio documentary about Eleanor Longden for BBC Radio 4. When I heard in 2012 that the TED conference in Long Beach, California, was doing a kind of talent search – looking to give the stage to people who might not normally have access to such a place – I thought of Eleanor. I told the TED people about her, they auditioned her in London, and she got through.

Doing a TED talk is very anxiety-inducing. You have to stand there in front of people like Al Gore and Bill Gates. Plus people keep telling you it's the most important 18 minutes of your life. In my year, 2012, Susan Cain was doing her introvert talk and everyone kept saying: "Oh she's so brave giving a TED talk when she's an introvert." But when I was chatting with Susan Cain backstage I was the one so nervous and fidgety I destroyed my TED ID badge. It exploded in my hands. Whereas Susan Cain was FINE. I started worrying about what the stress of being at TED might do to Eleanor, given her previous mental health problems.

It's six months later and Eleanor's TED talk is about to go online, and TED is publishing a book to go alongside it. They asked me to do an email Q&A with her. So that was my first question.

Eleanor Longden: Yes, I was definitely VERY nervous in the run-up. In fact the day of the talk itself was agony – like waiting to take an exam in front of a colossal audience. I was never worried that it would have a severe impact on me though. In fact 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 most likely would have had if the breakdown had never happened.

Jon Ronson: OK. Let's talk about what happened to you. Whenever I tell anyone your story I always begin with a bit of a narrative flourish: you are just a regular student somewhere in England. And then one day you got out of bed and … what happened?

EL: This brewing catastrophe began in a relatively mundane way; the appearance of a single, neutral voice, that calmly narrated what I was doing in the third person: "She is going to a lecture," "She is leaving the building." I was startled at first, very shaken. It was quite a weird sensation. But I got accustomed to it fairly quickly, because it was so unthreatening. I knew what voice-hearing was, of course, but this didn't seem anything like the types of frenzied, violent voices you read about in the media or saw in films. And after a while I even began to find it quite reassuring.

Owing to a series of childhood traumas, I was a very anxious and unhappy teenager, and the voice's methodical observations started to feel like a reminder that in the midst of crushing unhappiness and self-doubt, I was still carrying on with my life and responsibilities. I even wondered whether other people had similar commentaries but just never talked about it.

JR: But then you did something that anyone would do – it was the obvious thing to do – but it turned out to massively be your undoing. What was that?

EL: One of my most fundamental mistakes was, as you say, something that seemed entirely natural at the time: talk to a friend about it. And she was UTTERLY horrified. She pretty much radiated fear and mistrust. And in turn, her anxiety was contagious. She insisted I seek medical help, and that really sealed the beginning of the end.

JR: It's horrific, but the thought of it always kind of makes me laugh – you saying to your friend, "Hey, so this weird thing has started happening to me …" And your friend looking utterly horrified. Can you remember any of the conversation?

EL: Well in a way it was even worse than that, because I was actually quite excited about it! I had really started making links between my emotions and the voice, and by putting this theory to the test, had achieved some positive results. In this instance, I'd stood up to another student in a particular seminar group who used to put me down a lot – usually, if I tolerated it, the voice would sound irritated, but when I was assertive and defended myself, it returned to its normal, calm tone. So I was – the irony! – actually looking forward to telling her about it. She was like: "Oh, that's great, what made the difference?" and I said "Well, there's this voice …" Her face! She thought I was winding her up. Really it would have been helpful if the voice had chipped in and said: "She is going to seriously regret this monumentally poor decision!" I remember her repeating several times "Voices? You mean you're hearing voices?" And gradually it began to sink in … what if this wasn't the harmless thing I'd thought it was?

JR: So this story is about to get hugely worse. But before it does, let me ask a question. I remember when I was a kid once or twice hearing a kind of weird babble of voices in my head. Like there was a party going on and a whole bunch of people were all talking at once. It didn't bother me at all. I think a lot of people have had a similar experience. Hearing a voice just as they're falling asleep, or whatever. Before everything got worse for you, is that the kind of thing we're talking about? Something as innocuous as that?

EL: That's a really interesting question, because what research suggests is that voice-hearing (and other unusual experiences, including so-called delusional beliefs) are surprisingly common in the general population. This recognition has led to the popularity of 'continuum models' of mental health, which suggests different traits and experiences are all part of human variation – not strictly categorical in terms of "us and them", "sane and insane", "normal and abnormal". However, I do think life events play a vital role in determining who becomes distressed and overwhelmed and who doesn't. This might include experiences of abuse, trauma, inequality, powerlessness and so on, but it can also include the immediate reactions of the people around you. If you don't have people who will accommodate your experiences, support you, and help you make sense of what's happening, then you're probably much more likely to struggle.

JR: Right. So after your friend looked so shocked you went to see the campus doctor. And this was the turning point. What happened?

EL: It was as if my friend had picked up a baton, which was handed to the doctor, then ultimately to a psychiatrist. The same consistent, frightening message: voice hearing = insanity. One of the worst parts though, was when this baton was passed to me. I was someone who'd always relied on the intellectual – I was afraid of strong emotions – and had always tried to rationalize problems and conflicts. Now it felt as if my main resource has betrayed me – my 'diseased mind' had let me down.

JR: Can you tell me about the visit to the psychiatrist and how that ended up with you being committed?

EL: The first psychiatrist I saw subscribed very much to the same view as my friend and the GP – that my voice (and bear in mind, it's still only a single voice at this time) was a sinister harbinger of something much more serious. The nurses in the same mental health service were actually really considerate and kind, trying to support me with my day-to-day concerns, and taking my anxieties seriously. But the psychiatrist was the polar opposite. She really made me feel like a walking inventory of symptoms. This forensic-like scrutiny grew to feel very frightening and de-stabilizing, and was basically sending the message that the only relevant thing about me was my deficits. Not my strengths, not my abilities or resources, just my Bad Brain. I was eventually admitted to hospital (voluntarily), and the impact of that was disastrous because it sealed my perception of myself from someone who was confused, unhappy and frightened into someone with an uncontrollable, carnivorous mental illness. Eventually, I was diagnosed with schizophrenia. The voices (which by this time had multiplied and become much more aggressive) were witheringly contemptuous about this: "You can't even SPELL schizophrenia," one of them said, "So what the hell are you going to do about having it?!"

JR: So when people started treating the voice hearing as if it was scary and serious – when people gave it a label – it became scary and serious? What other things did the voices start saying to you?

EL: For me personally, an analogy for all this is 'a psychic civil war'. You start taking a blaming, negative stance towards your own mind. And the more I began to become fearful and resistant towards the voices (shouting at them, trying to drown them out, being abusive towards them) the more persistent, intrusive, and aggressive they became. I explore this concept in a lot more detail in the TED Book, but it has been neatly summarized by Marius Romme, co-founder of the Hearing Voices Movement: voices are messengers that carry important messages about genuine problems in the person's life. Therefore it simply does not make sense to 'shoot the messenger' and deny the content of the message. My voices embodied all my (considerable) emotional problems.

In fact, at this stage in my life I had more issues than National Geographic! What I would eventually learn is that the voices were part of the solution, but at the time they seemed like a colossal problem. Occasionally they could be quite witty and amusing, but far more often were frightening and malicious. I had quite a dysfunctional attachment to them. I was becoming so socially isolated that the voices became a source of companionship (as Oscar Wilde said: "The only thing worse than being talked about is not being talked about"!), but they could also turn extremely nasty without warning. They would discuss me amongst themselves, taunt me, and eventually, start commanding me to harm myself. It was impossible to please them – nothing I did was ever good enough. And of course, this sense of not being good enough, of feeling out-of-control in a world that could be arbitrary and cruel was a genuine fear I had, originating within myself because of previous traumas, that was being embodied by the voices.

JR: Didn't they at one point say to you, "We can put everything back to how it was but you have to pass a series of tasks?" Like the Labours of Hercules?

EL: It was like I was developing this weird, desperate illusion about pseudo-control – that somehow, if I could only try hard enough, it would be possible to turn things back to how they were. The voices very enthusiastically colluded with this! So they would start off with relative mundane instructions, like pulling out three strands of hair, but over time it rapidly escalated – wear nothing but red, don't use words starting with the letter 'B', don't write anything even remotely critical about this particular author (I was still at university at this time, so as you can imagine it made some of my essays pretty interesting reading!). They even told me to throw a glass of water over a tutor. Each time I would think, "This will be it, this is the task which will change everything." And it did change everything – but in a really negative, devastating way.

JR: And did you throw the glass of water over the tutor?

EL: I'm afraid to say I did! I quite shocked myself – even the voices were grudgingly impressed. But I guess it was an indicator of how desperate I was.

JR: I suppose the big question at this point – and maybe it's an unanswerable question – is this: would the voices have got so aggressive and frightening if you'd never told your friend, and never seen that psychiatrist, and never been diagnosed as 'schizophrenic'?

EL: Good question! And, as you say, hard to answer. Our society is given extraordinarily pessimistic messages about 'schizophrenia' (even though, as I discuss in my TED Book, the concept of schizophrenia as a valid entity is very problematic and contested) and in turn it can fill people with an overwhelming amount of hopelessness about themselves. Of course, everyone's recovery story is unique and different, just as our experiences are. But I think a crucial part is providing hope, information, and choice. And being given opportunities to make sense of what's happening to you, and what can be done about it: if passive drugging, sedation, and silencing is the cure response, then an active understanding, exploration, and integration of the emotional and social meaning of the person's experience is the recovery response. But my own feeling is that things would never have got as bad as they did if I'd had someone available from the beginning to help de-escalate this crisis in a more positive way.

This is something, for instance, that 'Voice Collective' (voicecollective.co.uk), a young people's project in London, is very dedicated to doing. They provide reassuring information about voices, suggest coping strategies, organize peer-support groups for young voice hearers, and emphasize hopeful messages, including the fact that a lot of people hear voices and lead happy, fulfilling lives. In my own case, I believe the reason I began hearing voices had to do with traumatic life events, and this was a separate issue that certainly needed to be dealt with. But what actually happened was that I ended up on the Schizophrenia Scrapheap – diagnosed, drugged, discarded, and with all the problems that had driven me mad in the first place still unprocessed and unresolved. Plus a whole burden of new difficulties, in terms of stigma, discrimination, medication side-effects, and a crippling sense of hopelessness, humiliation and despair about myself.

JR: OK. Let's get onto the worst part – how bad things got for you. I was telling someone your story a few months ago. His brother had been diagnosed with schizophrenia, and was apparently in a terrible state. When I told him about my friend Eleanor who had basically recovered for this reason and that, I could tell what he was thinking: 'Well, if this woman recovered the way Jon says she did then she can't have been THAT bad to begin with.' But things DID get that bad for you, right?

EL: Oh yes, unfortunately, things got very bad indeed. At one point, my parents had to prevent me trying to drill a hole in my head to "get the voices out". (My mum still finds it very distressing to think about – in fact that was one of the reasons it was so wonderful to have her at TED, as it felt like a real shared triumph.)

JR: So as extraordinary and shocking as your decline was, your recovery and subsequent successful life has been even more so. How the hell did you go from a person who was trying to drill a hole in her head to where you are now?

EL: I don't think there was a single, defining turning point, more an accumulation and fusion of positive changes. Primarily, I was very fortunate to have people who never gave up on me – relationships that really honoured 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. My mum, for example, had an unconditional belief that I was going to come back to her and was willing to wait for me for as long as it took. I also met an amazing 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." Along with his nursing colleagues, he was incredibly proactive, pragmatic, creative, and empathic. Their approach was all about active coping rather than passive adjustment. Crucially, they also helped me get in touch with the UK Hearing Voices Network, which was an absolute revelation.

For the first time, I had an opportunity to try and see my voices as meaningful – messages and metaphors about emotional problems in my life – and in turn begin to relate to them more peacefully and productively. I began to understand the voices (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 – memories of sexual trauma and abuse, rage, shame, loss, guilt and low self-worth. 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 – and 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.

JR: So when did you first notice that the voices were becoming less threatening? Can you remember a moment when the voices became noticeably nicer?

EL: It was a complex process and happened gradually – and some voices took longer to change than others. But primarily it was when I stopped attacking and arguing with them, and began to try and understand them, and relate to them more peacefully. It was about putting an end to the internal civil war I mentioned earlier, because each of them was part of a whole – me! I would thank them for drawing my attention to conflicts I needed to deal with. I remember one very powerful moment, several years down the line, when I said something like, "You represent awful things that have happened to me, and have carried all the memories and emotion because I couldn't bear to acknowledge them myself. All I've done in return is criticize and attack you. It must have been really hard to be so vilified and misunderstood." There was an immensely long pause before one of them finally responded: "Yes. Thank you."

JR: So you went back to college then, and sat an exam, and something extraordinary happened.

EL: I really struggled going back to university at first. I had to choose one really close to home as I wasn't able to live independently, and I messed up the first year so badly I needed to take a year off and re-take some of the exams, then return and study part-time. I was really devastated about this as it seemed like yet another set-back. Also, because my voices always got worse when I was stressed, they became very disruptive during exams. The University were brilliant though, and allowed me to sit them in a separate room with only myself and an invigilator, so I was able to talk to them very quietly, things like: "I know you're affected by how scared I feel, but please can you not talk to each other, it's really distracting." That's when something amazing happened, in that they didn't only apologize, one of them started dictating the answers. And he got them right!

JR: And what grade did you get?

EL: I finally ended up graduating with the British Psychological Society's Undergraduate Award and the highest first class degree the university had ever given for psychology, in terms of average grade scores. One year later I gained the highest ever MSc in Health Psychology. Which, as I always say, isn't bad for a mad woman.

JR: Ha! And here we are. So. How are you making a living now?

EL: I used to work in the NHS for an Early Intervention in Psychosis service, but left a few years ago to do my PhD. I also do freelance teaching, training, writing and public speaking.

JR: Is it true that your voices were helping you out while you were on stage giving your TED talk?

EL: Yes, it's true – they helped out in both London and California. One comment was "Go for it! You're doing great!", and they also acted as a prompt when I thought I was going to forget what I wanted to say next. There are other voices that can be a bit more unpredictable and undermining, but I'm so much more in control of them now that I was able to ask these voices to 'wait' in the hotel. And on the way to the venue, I visualized these voices relaxing somewhere separate from myself. So when I got back, these voices said, "How did it go?", and another said, "It was wicked!" (I doubt any therapy in the world could ever cure my voices' addiction to out-dated slang!).

JR: Haha! And when was the very last voice that you heard?

EL: I last heard voices yesterday. They were repeating something I'd read on the internet. The comment was: "I'm going to spoil the ending for you. The ending is – everything's going to be great!"

JR: And this IS the ending. And everything IS going to be great. Thanks Eleanor.