Home Perspectives Personal Essays My thoughts on stigma after Michael Stone’s passing

My thoughts on stigma after Michael Stone’s passing

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What is it about mental illness that falls off the radar? What exactly is that space between existing and desperation? Why are words sometimes not able to bear the impact of the despair?

I read that Michael Stone disagreed with the stigma still associated with mental illness, yet he was still unable to go public with his own diagnosis. I wonder if this would have made a difference to him, even surrounded so often with professionals in the field of mental health? I wish I could say that I believe it would. But in reality, there is often a sanctimonious tinge to empathy. And although immediate responses may be supportive and compassionate, there is the ever after. People shy away from discomfort, often rendering them incapable of having conversations that truly matter.

In the depths of terrible moments, if there is no way to bare your pain, no strategies or tools in place, it is almost impossible to say the words, “please help me”, “I’m hurting”, “I can’t do this anymore… “ And then what happens is a desperate attempt to numb and stop the agony.

Stigma shapes the way we intersect with the world. Those who struggle like this, become great illusionists, hiding demons and dark secrets behind very deceptive lives – and, yes, very deceptive lies. It is so much easier to pretend that you are fine. Yet these are not lies with intentions to deliberately or maliciously speak falsely. These lies overtake the way we exist, in order to exist, when illnesses of the mind take hold. These transpire because we have already ascertained that the stigma carries an injury that is too agonizing to bear.

The truth or the answer as I believe, lies in that tiny space between “what is” and “what appears to be”. But that miniscule place of honesty and authenticity is actually a torrent of inexplicable, invisible suffering. It is a place of “that which cannot be spoken”, because it is too shameful to utter, or too difficult for others to receive.

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I’ve had a very long week. My thoughts would scare those close to me. I’m triggered. The heaviness inside my chest chokes me and feels unmanageable.   My heart races. I’m frightened and on-edge, utterly exhausted from nightmare-filled nights.

In my fantasy, someone would protect me ferociously. I would talk and be understood without having to explain anything. My pain would be visible. I wouldn’t have to ask for what I might need. I wouldn’t have to lie and pretend so often that I am as strong and proficient as I seem to be. I would be able to crumple into a ball and just cry, for hours, when I needed to, without worrying that I might scare someone, or that it might be too hard for them. There would be space for me, for all of me. I would feel as though I mattered and truly believe it – not just the caring, talented, skillful, giving, creative parts of me, but also the wounded, broken, bleeding parts that hide away.   I wouldn’t have to justify myself when I was exhausted, or triggered, or too overwhelmed to function in the way that I usually do. I would be given empathy, kindness, gentleness, in the same way as I know that I give, and it would be just as real, and genuine, and trustworthy.

I get chunks of this in therapy. But a therapist isn’t a living part of everyday life. And those exquisite moments in which I receive selfless, thoughtful, empathetic, support and kindness, are those moments that I’ve always been hungering for.

Just over a year ago, I went public about my Complex Post Traumatic Stress Disorder diagnosis and struggle. This is not the PTSD that you hear about more often in the news, but a more complicated kind, development trauma and very devastating incidents that found their way into my young and fragile life.

I still hide the real me. Michael Stone hid his bipolar disorder.

I have no regrets for this courageous, petrifying, empowering, and soul-destroying act that exposed my secret because it became an enormous learning experience. Most dramatic was the discrepancy between those who accepted what I had to say in a whole-hearted way, and those who couldn’t. The pain I experienced from them will probably never leave, but I recognize that I did what I needed to do at that time, honouring myself in the only way that was true.

“I’m here for you”, and “you know where I am if you need me…” I struggle immeasurably with feeling invisible. And although these words are said with good intention, when the symptoms hit, my ability to be social and proactive and sensible are reduced so considerably, that it is even impossible to put into words what is going on in my brain. And it is at that time that the shame that the stigma carries, washes over me, and instead of reaching out, I disappear inwards, into a place that is so sinister, so scary and so solitary, that it sometimes feels as though I’ll never find my way out.

I believed that by being brave, vulnerable, and honest, by opening up about my C-PTSD, I would be letting people in.  I really hoped that by slashing open my heart – with all the risks and complications that it caused – I would still manage to empty myself of some of the loneliness, internal sense of madness, and agony that I had carried and hidden for so long…  I wanted so badly to bare my pain.

I’m tired of everyone around me thinking that I am so calm, when my insides are shattered.  I’m tired of being admired for my capabilities and what I do, without anyone knowing the sheer effort it takes sometimes to make it through.  I’m tired of people not knowing that sometimes I am not well, I am not okay, I am not coping – just that they can’t see it.  I’m tired of being everyone’s friend and them not being mine. My friends tell me that I’m just like a therapist and I’m flattered, because I am a therapist…  but I don’t want to be a therapist to them.

I do what I do with as much intention as I’m able. I want the people I care about to feel valuable.  I know what it’s like to feel invisible and unimportant, and that I don’t matter.  These are the stories of my childhood and they still haunt me.

Years of being self-sufficient have resulting in me having an impossibly difficult time asking for anything. I carry a shadow called “limited self-worth” and it becomes darker when I feel alone in those curious relationships called friendships. So, I hide in the darkness inside, because isolating my true self was the way I learned to protect myself when I was younger.  And that “limited self-worth” puts its arrogant hands on its hips and dictates to me that I’m obviously just not worth it, while the complicated chaos of Complex Post Traumatic Stress Disorder rears its insidious head and glares.

My husband has been at my side, helping with love, and struggling to modify those negative stories that strangle me.  And my children love me mightily, fill my heart with smiles, surround me with magnificent music, laugh with abandon, and give me boundless joy in such unique packages.

But there is the sinister breath of loneliness that chills my heart, telling me over and over again that I’m just not part of the crowd, that I’m not cherished like the others.  That no matter what, no matter how much I try, I don’t count.  They repeat that there is something inherently wrong with me, that I am unlikeable and that I don’t matter. I simply don’t matter.

The stigma is like an oil spill on a marble floor when you are wearing smooth-soled shoes. If you don’t have the strength to pick yourself up from that hard, unmanageable surface, it forces you to take those shoes off and walk barefoot on a different path, where dark stones on the ground feel like glass and cut into your feet. But not many congregate there, so the blood dries black and nobody notices, and you are forever unseen.

I do believe that Michael Stone didn’t intend to die. But he was so afraid of that slippery path, that he avoided it, and the one he ventured on took him to a destination from which there was no return.

That insufferable space between existing and desperation bleeds.