The blog that shouldn’t be written. And why I’m writing it.

transformation

It is sometimes an appropriate response to reality to go insane.

― Philip K. Dick, VALIS

I was a consumer of mental health services off and on for nine years. Diagnosed with depression, schizophrenia, borderline personality disorder and many more labels. I experienced involuntary hospitalisation, massive doses of medication, and electro-convulsive therapy. I was told I would always have this ‘brain disease’. I was told that I would probably never recover or work again. During this time my identity went from being a successful, creative, attractive, strong woman, to a hopeless, fat, unemployed mad woman with no future.

Today I am a general manager at a major mental health organisation, a board director, an adjunct research fellow, a public speaker and the writer of this blog. These are all things that I was never supposed to be able to do, and this blog was certainly never supposed to be written. Seems that prognosis was wrong… but it could easily have been right.

‘Don’t ask, don’t tell.’ Why trauma has a leading role on this mental health website.

During hundreds, perhaps thousands, of contact hours with mental health professionals, not one single doctor, nurse, therapist or community worker ever once asked me about past trauma.

No-one knew about my childhood experiences of violence at home, bullying at school, a terrifying two-week long abduction and rape at the age of thirteen, or how they might be linked to my madness.

I certainly wasn’t going to bring it up. I didn’t know how, and even if I did, I felt far too ashamed and confused. I was told that I had a chemical imbalance in my brain, and I gave over to being medicated, hospitalised, given shock treatment and put on the pension.

A socially acceptable recovery.

After about five years, and with support of some amazing professionals, I able to make a partial recovery: what I call a social recovery. I got back to work, back to life, off medication and stayed out of hospital.

From the outside I appeared ‘recovered’. I thought I was ‘recovered’. Even though, on the inside, I still thought I was evil. I still heard my voice, I still, occasionally and secretly, self-harmed. I still struggled to keep it together. But I had, at least, reasons to fight, reasons to keep it together, and the skills and support to do it. What I had done was learn to live with my madness in a socially acceptable way. I had achieved a life that was worth living.

Courage gifted by peers and a new, deeper recovery.

Nine years after I first entered the psychiatric system, I was lucky enough to be managing a peer support program, called Voices Vic. I began to hear public talks and attend training from international consumer leaders associated with the hearing voices approach.

These were people who had been where I had been. But these leaders, people like Ron Coleman, Jacqui Dillon, Eleanor Longden, Rufus May, Peter Bullimore, had richer stories than me. Whereas I was living a life that felt ‘worth living’, and that ‘I could cope with’, they were living lives that they ‘deeply cherished’. I had only found out how to get by. They were on a whole different level. I wanted what they had. And as I listened to their stories, over and over, I began to see that it was possible.

What seemed to have made the biggest difference for these people was in making sense of their madness, particularly in terms of past trauma. Each of them was able to explain how painful experiences in their past were directly linked to their madness. This knowledge enabled them to fundamentally change the experience of madness, and led to healing.

Confronting my own past trauma, making sense of my madness.

And so, with indescribable trepidation, but inspired by my peers, I began to explore ‘that thing that had happened when I was thirteen’. I talked to a therapist, but then I went completely mad again. This, of course, is exactly why many people say we shouldn’t talk about trauma. But they’re wrong.

I did end up psychotic, suicidal, back in hospital, back on medication, and being told by a psychiatrist that I had come too far to risk it all now. My trauma was in the past and it would only keep me sick to talk about it. I must get back on medication and forget the past. I fought and fought. I knew that I was right.

And then I remembered how the system really works, so I lied. I told the doctors they were right. I drew up a ‘sensible’ recovery plan for myself, and got discharged. Then I went straight to CASA (Centre against Sexual Assault) and got myself an amazing counsellor called Marion. And while it was painful, I began to find a way to really heal. I discovered ‘that thing that happened when I was thirteen’ was called ‘abduction and rape’. The words felt strange, and scary. I discovered that so much of what I felt was shame, not meaningless madness. I discovered that much of what I felt and thought and experienced was really common amongst people like me. I learned about grooming, and Stockholm syndrome, and how our bodies respond to sexual assault. This was extraordinary. Why had no-one ever told me this before? I wasn’t mad or evil after all – but what had happened to me certainly was both.

I was privileged to be able to work closely with many amazing consumer leaders and peer workers, from whom I drew courage and hope and creative ways to direct my journey. I learned to find compassion for my voice and myself. I was able to identify layers of shame – about 15 of them – which were why this inner voice had so persistently told me I was evil for so many years. I put myself through a mock trial and found myself innocent of all charges. I began to stop ‘coping’ with ‘symptoms’ – and instead engaged with them, listened to them, understood them and was able to transform my experience of them. I am now completely off psychiatric medication. I can now say that I, too, cherish my life.

Life for me is still, often, deeply painful. I still live with some unusual experiences. If my values feel challenged I will hear my voice – but this reminds me to bring myself back to my value-base. That voice is unpleasant, but it is a part of me and it serves a purpose. I still feel urges to self-harm – sometimes hundreds of times a day. But I don’t do it, I wouldn’t do it, because now I understand what it’s about. I cannot undo all the harm that was done to me through trauma, but now that I understand how it has affected me, I know that I was a victim and I am now a survivor. And I know how to survive and draw strength from that. My remnants of madness drive me in my life and in my work.

The deafening silence about trauma and mental health

Trauma is the most prevalent experience amongst people who end up in our mental health hospitals and systems. One major study in the US (Goodman, et al, 2001) found that 87% of public mental health patients had experiences of severe trauma, and similar findings have been replicated over and over. Child abuse, bullying, sexual assault, family violence: the list is long and it is heartbreaking.

Although the evidence for the links between mental health and trauma are now indisputable, our health and community service systems almost never even ask people about trauma, let alone offer any kind of trauma-informed care or services.

I do not understand how it is that we can have a multi-billion dollar mental health industry that is almost universally silent about trauma. Especially when so many of us are already silenced by fear and shame from our experiences. We not only fail to receive the help we need, but our fear and shame is often compounded by the silence of the people who are paid to support us.

Why I’m writing this blog.

Yes, I worked hard on my recovery. But I was also lucky to be able to access such extraordinary workers and peers. Most people are not so lucky.

I want recovery and healing to be a matter of standard practice, not of luck. And so, despite all the horrors of my past, I wouldn’t change it. Because I now have the opportunity to use what I have learned out of my pain to make a difference. To be, I hope, a part of building a better mental health system that is based on the truth of people’s lives.

This blog is one of the ways that I can make a difference. It is a space for breaking the silence about trauma and madness, and for honouring the myriad of creative and adaptive ways that human beings respond to distress … and can bring about healing.

Luckily, these days, I’m an optimistic kind of person. Well, mostly. I believe in change. People can heal, and so can organisations and systems. One day mental health systems will stop reducing mental and emotional distress and difference into simplistic biochemical labels treated with pills, and will stop telling people that they should learn to ‘accept their illness’.

Instead we will understand that madness makes sense in an insane world, and that with the right support people can actually heal, rather than just get by. I hope you join me.

References

Goodman, L.A., Salyers, M.P., Mueser, K.T., Rosenberg, S.D., Swartz, M., Essock, S.M., Osher, F.C., Butterfield, M.I., and Swanson, J. (2001). Recent victimization in women and men with severe mental illness: prevalence and correlates. Journal of traumatic stress, 14:4, 615:632. Retrieved from: http://link.springer.com/article/10.1023/A:1013026318450#page-1


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16 Comments
  1. I am so proud to know you even over the air. For so long I’ve watched people being savaged by psychiatry, including myself. 45 years ago when I worked as a psych nurse it was terrible, I think it’s worse now. I wouldn’t have kept the nurses who `looked after’ me in the unit I worked in. We used very few drugs, never used shock, listened to people & families, visited them at home, trying to sort out what had happened to them. I personally worked with lots of kids who heard voices and I still reckon the voices helped tell the story. By the time I fell under the psych bus everything I’d ever done wasn’t there for me. But now I hear from people like you, the `voices’ programs, Open dialogue, the sexual assault people & hopefully some of the better psychotherapy programs like `formulation, and I see that they’re growing, maybe there is a light coming that’s not the train. But we still have to get to the rank and file, the ones whose verbal and physical abuse in institutions destroys those who have turned to them for help, who set up seclusion and force drugs on innocent people, who recommend shock because they’re vindictive and/or stupid, who abuse their power and punish and bully because they can. I was once involved in 2 major movements – feminism and psychiatric nurse education reform – I failed in both. But I haven’t given up. And it’s people like you lot that make me keep going. Thank you Melbourne people for including me in your movements – please let me know what I can do to help.

  2. Hi Indigo,

    I found you to be an inspiration at both of the Voices Vic conferences and you just lit the candles on the cake with this article. :) I think it’s very important that some people tell stories like yours, at the right time, when they are ready, as they can help others to find hope and find that rope to pull themselves up and out of the dark place. I’m glad you ignored ‘expert’ opinion and I’m glad you love your life now. It’s a pity I can’t make the upcoming conference. I hope it goes well.

    Cheers
    Brian

  3. Dear Indigo,

    Thank you so much for sharing your blog. I really relate to what you wrote about deeper Recovery. After many years using psychiatric services, I have been defined by others, both professionals, family and peers (and I guess have defined myself) as being “recovered”. I too have a job (in mental health services), my own home, a partner, a daughter and friends – a life worth living you could say. But I still struggle and fight and it’s exhausting, but no one really sees that because I’ve learnt to hide it. I don’t cherish my life though some of my peers have said they wish they could be like me. I’m thinking “if only they knew…” I feel like a fraud to appear to be doing so well. Your blog has inspired me to go out and work hard to build a life I cherish, for me. I’m really fortunate to be in the process of doing a 3 month Recovery from Psychosis program which has been written by Ron Coleman and Karen Taylor (who I too have found to be inspirational), and I am hopeful that through this I will embark on the next part of my journey to a “deeper Recovery”. Thank you again for sharing
    All best wishes,
    Julie

  4. I’m loving your reflections. There’s nothing more profound than cleverness motivated by a huge heart.
    You’re an utter inspiration and I’m so lucky to be your colleauge!
    See ya soon. Hugs,
    Cassy

  5. Hi Indigo – I just want to say that you are absolutely inspirational from my viewpoint as a carer. You write with such a refreshing honesty while not coming across in any way as blaming and it is truly powerful stuff. I really admire the work you do on your blog and elsewhere in sharing such constructive messages. Thank you so much.

  6. Hi Indi,
    Thanks so much for publishing this blog. I’ve been working for about 8 months with Partners In Recovery and don’t think I’ve met a person without significant trauma in their life. I’m working with a lady at the moment who has dealt with so much but is ‘stuck’ at home. She tells herself off for not being able to ‘live a normal life.’ But she acknowledges that everything is a Band-Aid fix until she is able to work through her past trauma.
    It amazes me when I meet GPs, psychologists, etc who are still totally about medication and ‘moving on.’ Yes, moving on needs to occur, but it needs to be in a context of understanding our past, our grief, loss, shame, embarrassment and deepest hurts. Only then do we begin the process of fully healing

  7. Beautifully written Indigo! Thanks for sharing, great to see this lovely site you’ve set up. Can’t wait to hear more from you! :)

  8. Indigo! Beautifully written and speaking truth will transform lives..Silence leads to shame and often self blame..
    Thank you for this blog..I will be sharing it with my fellow travellers towards a cherished life!!!

  9. Thanks Indigo for your efforts in writing, publishing and sharing this brilliant article.

    Thanks for your persistence and work on your personal recovery that has resulted in where you are today, a true inspiration.

    Thanks for mentioning what is missing and wrong with our mental health system, but also in sharing the hope you have and knowing it can and will change.

    Thanks for staying in it and working so hard as I know you do, to bring about change, I know that isn’t easy.

    Thanks for mentioning the “T” word and using your own lived experience to make the point, so we can all learn from your traumatic childhood experiences and not be so afraid to reach out and get help and assistance to address our own. I know like you I certainly didn’t get that kind of assistance in my 8 years in the mental health system.

    Thanks for being a friend, peer and work colleague on the journey.

    Thanks for being you, the beautiful, gutsy, hard working, awesome woman and role model you are, who challenges and inspires so many along they way, including me,
    Thank You xx

    Yours Sincerely

    Amanda Waegeli
    Mental Health Recovery
    Training and Consultancy

    • Hi Amanda,

      I feel I could say all of the same words right back to you. Amanda, your work has done so much to change lives, address trauma, and build understanding about how what is so often considered meaningless madness, is in fact a meaningful response to life experiences. I think you’re rather amazing.

      Sending you love and solidarity too,
      Indigo

  10. Hi Indigo,
    Thank you for harnessing your lived experience story to inspire others and to share with the world the fundamental need for mental health systems to dramatically transform (from coercive and medication-oriented services into facilitators of personal recovery, personal redefinitions of ‘madness’ and trauma healing).
    In solidarity from Western Australia,
    Rhianwen and the team at CoMHWA.

    • Hi John,
      Thrilled to have you here! Your dedicated work over so many years has been an inspiration to me, and a big of my own recovery journey.

      For anyone out there who doesn’t know Professor Read, Google his research. Outstanding.

      Cheers,
      Indigo

  11. Thanks indigo
    Delighted to join you in your mission
    John Read

    • Hi Rhianwen,
      Thanks, and a big hello to you and all the great people at COMHWA. So glad to hear from you. Trauma, especially in childhood, remains steeped in shaming silence, and almost all of our mental health services continue to replicate this same shaming silence. As more and more of us join together to speak our truth, we begin to break down these walls of silence.

      Best wishes to all,
      Indigo

  12. Hi Chris,
    Thank you so much for sharing your own experiences. I think you are wise to decide to deal with trauma on your own terms and perhaps not just yet. The biggest mistake I made, when I finally started delving into my own past trauma, was going too fast. So I would absolutely advise you to take it slowly, and to find one or more support people who you can trust, and who have real expertise in working with trauma. This alone can take a long time. In the meantime there is plenty to do. Learning to keep ourselves safe, such as with coping skills, and learning more about difficult emotions, such as fear, shame and anger, all help to make us stronger and more able to address trauma if and when we are ready. Travel gently, and please remember you are far from alone in your journey.
    Best wishes, Indigo

  13. Dear Indigo,

    Thanks for writing and working for free choice and the search for individual and social meaning. I’m so happy to have discovered your blog and be enabled to reconnect with you and your story.

    Best wishes,
    Berta

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