STIGMA SURVIVAL - A CINDERELLA STORY

How stigma has made me who I am

Join me.     Let me take you back 16 years .....

It is February 1998 and I am shell-shocked after my first nervous breakdown. I have received my mental illness diagnosis. I am suffering from bipolar disorder.

I emerged from a 4 week hospital stay on the wobbly new-born legs of my brand new identity. Mentally Ill. For life. I had crossed that lovely big fat safe line between “us” - the sane, and “them” - the mad. I was one of "them". The mad ones. And I knew I was for sure. The extreme and fairly public nature of my breakdown would get Hollywood baying for the screen rights. I lost my high flying, well paid job in the West End of London in artist management. Gone, the days of negotiating deals worth thousands of pounds for my clients, gone the days of working in a respected team promoting big stars in the world of film and tv, gone the glamour and elegance of big opening nights and royal film premières. I was only 25.

Blinking in the blinding darkness of depression now, I yo-yoed around on psychiatric medicines. What on earth was wrong with me? I had been FINE. And now? This? I went to my GP in utter confusion wanting help, wanting to talk. I remember sitting down across the table from her. I asked her what had happened to me. I remember her words to this day, they still cut to my soul. I had only just been born and she hammered a nail into the coffin I didn't even know was waiting for me.

“Well, you just went mad” she said.

She gave me anti-depressants but they didn't touch the place I descended to next. I do remember banging my head repeatedly against a wall once not long after that because the physical pain soothed the searing agony of confusion in my head. I didn't know I had just met Cinderella's hideous step-sisters. The ignorant, cowardly, unfeeling bullies of stigma.

Those harpies showed their face when I finally tried to pick myself up again. A month or so later, I started looking for work. I decided to try and throw myself back into my old life. After all, I had been FINE. I was offered a job at another major talent agency in the West End. I thought my life was going to be OK, I would have a reason to live again. I was wrong.

The Sunday night before I was due to start work, the man I was to work for rang me up. He started shouting and swearing at me. ( He was known for this, but that doesn't help). He asked me when the f&*k would I have told him about my nervous breakdown and that because I hadn't disclosed it, there was no way I could expect to work for him, there was no job for me, I was not fit to work in his firm. I stood there, shaking, holding the phone like my final lifeline. I could barely get a word in he was shouting so much. I apologised. I said I was sorry. I stammered that I would have told him really soon, it was new to me and I didn't realise I should have told him, but I was going to be fine and I was really good at my job. I tried to sound calm and professional whilst in reality I died slowly, screaming in resistance against that yawning coffin drawing me in. He hung up on me. It was over. The West End world of showbiz is tiny. Word was out. I was finished. I stood there frozen. I felt my world shatter around me. No matter where I turned in the industry I knew, this hideous shame would follow me now. I would be the agent who went mad. Everyone would know.

My next effort, another month or so later, saw me trying to rebuild a social life. I had been hermetically sealed away in depression for months and I thought if I tried to reach out to actual real people, people who had known me before my breakdown I would start to feel like living again. It was July 1998, my birthday. A full 6 months after my breakdown. So, I decided to have a birthday party. I started ringing round and leaving messages. I hoped people would be happy to hear from me, I had been so quiet. I wasn't ready for the first reaction I got.

A friend, who had also been a client of mine, responded with extreme anger. She found out that back when I was in hospital I had contacted another one of my clients, a mutual friend. Not long before my admission, I had managed to negotiate a career changing deal for him in a major TV soap. As a new high profile regular, this would catapult him into fame. He was a great guy, a good actor and a friend and I was proud. Somehow, through the mysterious fog of medication and hovering psychosis, I had managed to use the phone from hospital. I happened to remember his phone number. No idea how. I didn't have any address books with me and staff in hospital limit contact with the outside world to protect you from inappropriate or embarrassing communication before you are well again.

My memory of that phone call is hazy at best, but I remember my intention. I wanted to wish him well. I had been torn away from everything and everyone I knew, lost my job and the reality of my potential future as fallen from grace was already looming. I just wanted to feel one last time that I had achieved something good in the midst of my catastrophic failure as a human. It backfired 6 months later. My birthday invitation incited this woman to anger. She said she couldn't believe that I was just casually trying to invite her to my birthday after hearing nothing from me since my disappearance. She was furious that I had managed to ring the other client at the time of my breakdown and talk to him, but not her. I started stuttering again, trying to explain. I tried to explain how drugged, dazed and confused I was in hospital, I didn't have phone numbers. I even tried to explain the hermetic, reclusive hell of depression afterwards but my voice fell on deaf ears. I am aware that my breakdown and leaving the agency affected the professional lives of other people. Actors relied on me for work. The agency I left had to deal with the fallout and I don't know what happened to all my clients. An actor's life is stressful and unsure and they rely on their agents like a lifeline. I had let people down, and clearly this woman felt justified in turning on me. I was deeply shocked, because before this, she had been a friend. I stopped trying to invite anyone to a birthday party. There was no party at all.

Now, I no longer felt able to seek work in the field I knew. I was certainly becoming more and more afraid of contacting people. I was terrified of coming out of the woodwork hoping old friends might welcome me with open arms.

Eventually though, I did keep trying. I applied for work in other areas of the industry, where I hoped my story wouldn't be known. I had come from a high profile world. So I sort of slunk sideways and finally found work on the television crew of a long running popular TV series. I was right down at the very bottom of the ladder. The lowest paid, and unimportant. I tried to stay anonymous and inconspicuous. I remember pottering past the office of the executive with whom I had once wrangled big money contracts for the stars of the series, feeling grateful never to have met him face to face in my previous incarnation. How mortifying it would be for him to recognise me. Now, I just shuffled in the shadows in yet another identity, hiding from my hideous history.

After a while, my life changed again, and I moved to the south of Ireland. I spent ten years living there before returning to the UK. Whispers would come back to me through the grapevine of people's reactions hearing about my bipolar diagnosis. For example, a mother whose children I taught apparently said she would not want me driving them in my car. Then, there were some friends who made uninformed assumptions about me when I went into crisis once before their eyes. They proceeded to write me off as looking for attention and causing drama for the sake of it. Then, I lost a relationship with someone for whom my behaviour when unwell was simply too much to comprehend or be associated with.

Later again, I started going out with a truly wonderful man, and against the odds I felt that my life might come together again. However at least two people felt duty bound to warn him that I was crackers. One actually walked right up to him and said “You do know she's completely mad, don't you ?” Luckily for me, he did know. And he married me anyway. That person actually apologised to him afterwards – but never to me. That hurt.

Back in the UK again, I vowed to keep my illness under wraps a bit more. I decided to take an Irish psychiatrist's advice NOT to disclose my illness because of social stigma. She said I would find life easier. She was wrong. I was stifling myself. Trapping myself in a straight-jacket of my own design. Sixteen years of stigma and pressure, ten horrible life-mutilating hospital admissions, the daily roller-coaster of completely unpredictable extreme mood and energy swings, debilitated by the exhaustion of insomnia, sleeping pill hangovers and daily medication. Who do I tell ? Who do I trust ? Which friends will stay ? Which job will I lose now?

Added to all this, in the past 5 years, my world has been touched by sorrow and traumas unrelated to my diagnosis. In 2008, my beloved father suffered a massive stroke and I watched and waited for him to die slowly over a couple of weeks. In 2012, my mother died suddenly from a burst aneurysm and I rushed for four hours to get to her, but missed her by ten minutes. I sat with her for ages, gathering her close up into my arms. For me, she was the last person on earth who truly knew me. Also, I would love to say that my marriage was plain sailing through all of this, but it wasn't. My private family life was suffering for separate reasons. I remember holding my mum and feeling that now, I was truly alone. There would be no-one to rescue me any more.

Grappling with all this, in 2013 I had another major depressive episode which lasted months. Once again, as I tried to emerge from it and reach out, a close friendship which had helped me through much of this tripped, faltered and fell. For nearly a year I have withdrawn, crippled with a sense of paranoia, second guessing myself at every turn about how I am perceived as a person. During this hibernation however, a mysterious, almost esoteric “caterpillar thing” has happened. Something beyond words. I have changed. I don't really know how or when exactly. It didn't happen overnight, but slowly. Finally, I find I have emerged and decided I will no longer choose who to trust. I will tell everyone, and wait to see who chooses to trust me.

So I found my voice and came out publicly and so far the world has come forward to meet me with open arms. Friends have shared my writing and people approach me privately to share their stories and even ask for my help. Every day now, I wake up and discover that I can breathe. At last.

People are saying how strong and brave I am. I haven't thought of myself in that way often in my life. I have been thinking about how I have found this new strength. I think the answer is this : it is precisely because of the years of opposition and suppressive stigma I have faced that I actually found this courage. I had nothing else. When I was ill, depressed and afraid I certainly had no courage, even though I wanted it. But I have stopped judging myself through the eyes of others. I have stopped editing what I want to say because of people's actions in the past. I have stopped tormenting myself over what I imagine others might be thinking and I speak because I don't want to choke any more. Only I have the power to change my mind, only I have the power to change my world and how I live in it. So I can be the risk taker if I want to, throw my straight-jacket to the wind and let it fall where it may.

The me that once sat quivering in the corner of the locked solitary confinement room, or held down kicking and screaming by four nurses and forcibly sedated with a massive needle .... that petrified young woman never dreamed that anyone would want to hear her one day. But I am speaking, I am telling my story and people want to listen.

Every snarl of stigma has dissolved into air. I will no longer listen. Every whip which has ever thrashed and beaten me with condemnation and every fence which has ever held me in lies burning.

Nothing more than timber on an ever growing pile. I am not the sorry heap of rags underneath it, in unwashed pyjamas and a dirty dressing gown with the belt taken away by the nurses on the ward because “ I pose a risk to myself and other patients”. That isn't me. 

It turns out that I am actually wonderful. I am more fiery than I knew.... and I've started a bonfire party where everyone's invited. It beats any fairytale ball and no-one has to leave at midnight. Stigma is powerless ash at my feet … we have marshmallows in the flames..... sweet with the peaceful joy of solidarity, acceptance, patience, forgiveness and truth.

There's plenty to go round, I promise. Join me.

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All artwork by Diana Muller at Diana Muller Fine Art
Pieces featured here in order are entitled  "Frozen" , "Somewhere Else", "Nebula" and finally "Conflagration"

All images used here with her kind permission for which I offer my profound thanks.

Thanks go also to her and her family who have always supported, loved and even sheltered me. A joy to know you all and have you in my life. See also http://www.brushwoodstudios.com/ for more of their art.

Mental Illness is an equal opportunities employer.

My husband has an observation which always make me laugh. When he used to visit me in hospital, he would see me chatting with my fellow patients on the ward. Usually I was to be found in the smoking room or somewhere being fairly sociable if I was in the mood. For me, there is nothing in the world quite like the shared experience of fellow psychiatric patients when we sit talking together. There are times when I have never laughed harder.  My husband says it is like witnessing the biggest in-joke in the world.

I feel a particular private freedom and license to be truly and wonderfully myself in this context. Why ? I have not one jot of fear of stigma or judgement about anything that I could say. Not a one. I may not have the same point of view as someone else, I may not look, talk or think the same way and we may come from social worlds a thousand miles apart. But what we have in common is so excrutiatingly deep that I feel a sense of belonging that transcends description.

This sense of belonging is a double edged sword though. We don't all sit together on the ward having a non-stop fraternity love-in. Most of us will at some point feel.... "Oh my God, is this me ? Is this who I am ? One of them ?"

Remember mental illness couldn't care less if you are a member of the Royal family, or born to a crack addict single mum on a housing estate or if you have a  learning difficulty or physical disability. 1 in 4 people currently suffer from a mental illness. When we regard each other we are not blind to these differences. As such we can feel drawn to someone or uncomfortable around them just as we would if we had not met because of our mental health situation. Either way, it's irrelevant because when we feel "Oh god is this me ? Am I really one of them? " the resounding answer is actually no. We are infinitely unique. We are not the same.

This is the point that the 1 in 4 people in the world would like the 3 in 4 to understand. Absolutely anyone can suffer so please stop the stigma. BUT here's the thing .... consciously or subconsciously the 3 in 4 know this perfectly well already which is why they are afraid. Fear and stigma are close bedfellows. When we fear something, we are programmed to distance ourselves from it because at a basic biological level we perceive it as a potential threat.

Fortunately, The discoveries of neuroscience explain to us the phenomenon called “neuroplasticity” which is the ability of our brains and minds to change. For example, thinking even only once in a different way about something changes a neural pathway in the brain. What this means is that potentially the next time we encounter that same thought we link up to the time we had a different opinion. Then the choice of how we think or react has opened up because we have been informed. This is how stigma is defeated. Thought by thought, conversation by conversation. This is how we see change occurring. This is how we transform.

I did. I changed my mind about myself. And I set myself free.

Photographs are of sculptures by Toin Adams http://www.toinadams.com/

My original "Coming Out " Facebook post

I was not prepared for the overwhelming positivity I received as a response to the following and my life has blossomed since. In 2 weeks, my outook has transformed. Please read on, and at the end I share an important insight from a friend who read it.

Facebook   3rd March 2014

These simple words from Stephen Fry are , to me , amazingly profound . It really is very hard to be a friend to someone with depression or mental illness. No matter what you think your own credentials are, or what you know or have seen.

I was diagnosed bipolar in 1998. Stephen Fry is also bipolar so I count myself in the best of company. Over the years I have lost friends and I have struggled to understand their perspective. A lot of people do not nobly stand beside you as easily when your illness is invisible. It truly does seem easier for people to stay by a cancer sufferer, or someone with any kind of physical illness. Mental illness is just as life threatening. It devastates sufferers and their families, it mutilates an individual's measure of the world. It isolates and imprisons with more efficacy than any prison wall. It is not possible for a sufferer to educate other people about their illness so that they will tick all the right boxes and provide great support. All that helps is talking, sharing information, being honest and facing stigma. No-one should be ashamed or guilty because of how well or badly they handle their own or another's mental health. But to keep trying, is a great and very wonderful thing.

I have never posted or spoken about my own bipolar diagnosis publicly. Some of my friends know. Most, in fact, do not. I decided to write this today in a statement of my own liberation. For many many years I thought I would just keep it secret for fear of stigma ( and I have had plenty of reason to fear that). I had decided I did not want to be the mum my son's  friends whispered about one day .... but I realise I am better than that. I am an incredibly vulnerable person, but hiding vulnerability makes one weak. Living in it, gives you strength. I have decided to live publicly with my bipolar-ness and make my life a living proof of someone's best effort to manage mental illness. I have lost a very great deal during and as a direct result of the 16 years of my diagnosis. Jobs, homes, relationships and most of all, friends.

I have bipolar friends as well as friends diagnosed with depression. I witness their struggles too. We all know there are no easy answers and we do not hold out begging plates for understanding. But I know we do reach out, even though others may not always understand the methods of our madness.

Inside every sane person, there is a mad person trying to get out, and inside every mad person there is a sane one trying to get out. There is no "you" and "us" really, the line of division is not thin, it is a mirage of perspective.

Today, I wish you courage

          ________________________________________________________________________

No sooner had this appeared in Facebook world, than people came out in support. A wonderful man, Steven Stead,  even shared this post, and wrote the following:-

" Miranda de Barra is a truly beautiful soul and a very courageous woman. I'm one of the friends she speaks about having lost, in this very candid posting. She never lost me. I just didn't know how to relate or to react to her in her heightened state, because I was never sure what was 'real' and what wasn't. So I withdrew. But never to very far off. Certainly not far away enough not to care that she has found peace and liberty in expression, or to constantly rejoice in her triumphs, and her magnificent, wicked sense of humour. Well done, my friend "

My heart burst when I read that. And after I had wiped a tear or two away, I felt very happy and started singing and dancing around the kitchen.

 

" WHEN THE JAPANESE MEND BROKEN OBJECTS, THEY AGGRANDIZE THE DAMAGE BY FILLING THE CRACKS WITH GOLD. THEY BELIEVE THAT WHEN SOMETHING HAS SUFFERED DAMAGE AND HAS A HISTORY IT BECOMES MORE BEAUTIFUL "   Billie Mobayed

I am happily damaged and broken.  I now see the gold I have been using to fill in the cracks. I have an incredible history. I am so proud of who I am and what I have achieved.

Please do stay with me, and enjoy my Beautifully Broken world. I am so excited to share it with you.

The Joy of Coming Out

How wonderful it was ...

I had been afraid, ashamed, paranoid and isolated for years and years and years. The weight of silence wrapped me in a straight jacket in which I tried to appear normal to the outside world. And then, just the other day, I simply took it off. I took off my jacket of fear and shame.

I was diagnosed with bipolar affective disorder in January 1998 after a massive nervous breakdown which brought me into psychiatric hospital. There have been numerous subsequent admissions and my daily existence is  ruled by the mysterious and unpredictable moods and behavioural extremes that are characteristic of the bipolar phenomenon. Some friends have known about my diganosis and a good many have not. I have not lived it publicly. Ironically, that isn't how I handled it in the very early years. I was initially a lot more open, mainly out of an overwhelming compulsion that sought to understand what had happened to me through talking about it with people. But I didn't find any answers, and in fact found myself more confused. I started to feel misunderstood by others, labelled and judged (rightly or wrongly, who knows) and even a psychiatrist warned me about not being too open about my diagnosis for fear of stigma. She cited the story of a psychiatrist colleague of her own who had suffered a nervous breakdown. He tried to return to work, but discovered how differently he was treated and finally left his job. She was making the point to me that even in the field of the mental health profession itself, people lacked the capacity of understanding and support which one might anticipate, and therefore how much harder it could potentially be elsewhere. Hearing this from my own doctor sent me further into my shell.

Another incident which contributed to my shame and paranoia about being open about my mental health label, was hearing a particular account of someone's response upon discovering that I was bipolar. I teach dancing to children and adults. It was the mother of one of my pupils who heard about the fact that I was bipolar, and she said that on that basis she would not want me ever driving her children in the car or anything like that. I cringed when I heard this, and another brick was laid for the foundation of silence.

Fairly recently, I had considered myself lucky enough to enjoy a friendship with a person who has a close family member with bipolar. Sadly, this friendship has suffered a blow from which it currently has not recovered and I find myself experiencing the loss of a friend.  A good friend whose understanding and experience of bipolar health I respected and appreciated very much indeed. Having  lost other friends, not to mention boyfriends, jobs and homes directly because of my bipolar behaviour over the years, this recent loss was one which I felt deeply. I was tempted to retreat even further. I was fuelled by that horrible feeling of no longer being close to someone who knows a lot about you, skeletons and all. It is not a safe feeling. It is a vulnerable feeling. It doesn't do me any good, given that I am someone who genuinely worries what people think or might say about me.  We all do to some extent. So, the whole issue of telling people or not really raised its' head again for me.

People with mental health diagnoses juggle with the quandary of when  to tell new friends, dates or work colleagues about their "label". Or even if they should tell them at all. So just a couple of weeks ago, I found myself on Facebook looking at the bit at the top where you type in a status for yourself. And I just started to write. I wrote a "coming out" . As I slowly clicked the post button,  I felt an ominous rush of adrenaline. It felt a bit like I  had taken my clothes off and gone and stood in the middle of the supermarket. But at the same time, there was a sense of relief, a weight lifted. I felt like I had stopped lying. Which was odd, because I hadn't actually been lying. I had simply not been telling people that I was bipolar. I had been hoping that I could come across as normal as possible under all sorts of extraordinary circumstances over the years. And as I sat there looking at my now public post, I was amazed to find myself feeling properly "normal" for the first time. Not hiding. Not being ashamed. Not being afraid to be vulnerable. No longer terrified of stigma and labels and whispers in the playground. I just decided to bite down and let whatever may come, come.

In fact what has come since that post is overwhelming support, admiration for my courage and honesty and positivity from all corners. But notably I am also being approached by others who suffer similar silent struggles. People who have depression, or other mental health issues,  thank me in solidarity or are coming forward to share their stories and efforts to cope.

Mental and emotional trauma is immeasurably powerful. It consumes our waking thoughts and we become desperate to heal it or to find some way of living with it. Sometimes, we simply seek to stay alive with it at all. For me, after many long years, I have found that I can accept that my traumas are there. They simply exist. There are plenty of times when my demons overwhelm me, I would never say they are beaten. I would rather live admitting that there will be days when I will lose to them, rather than live hoping that I will somehow avoid the battles in the first place.  I am broken.... but I am very, very beautiful. It is a glorious and wonderful freedom that I have granted myself. It has taken every ounce of courage to do so, but the reward so far, is a voice. The most honest one I have ever heard. And it is mine.  Here, in this blog, is where I will share it with you. Thank you for reading this post, it is my first one ever. I will copy and paste my Facebook "coming out" post next for you. Welcome to Beautifully Broken. It's a place where there is no shame.