Your Mental Illness? Make It Your Narrative

CN: brief non specific mentions of suicide, trauma, and eating disorders

If you have lived experience of mental illness, who tells your story?

Or even just fills in the blanks?

Silence about lived experience of mental illness from those who live with it is a frustrating paradox. Silence breeds stigma. Stigma breeds silence.

And there is a certain hypocrisy to complaining about the stigma if we choose silence.

I don’t say this lightly or without understanding the complexities of speaking out about our lived experiences.

I don’t live with an unprocessed trauma underlying my mental illness. Nor have I experienced treatment (or lack thereof) in the public mental health system. So, I have no right to speak about the ability or willingness of people to share their lived experience in these circumstances. I live with straight, white, cis-gendered, able bodied privilege. This means my path to diagnosis and high quality mental health care has been smoother than for those who don’t. All these factors make sharing my experiences easier.

One of the things I love about writing this blog is having ultimate control of my narrative. I don’t get paid for my posts. But I also don’t answer to anyone.

But I did recently have my voice stolen for a bit and I loathed the experience.

I’ve done some media interviews over the years Radio And Podcast Interviews and have generally felt empowered by and happy with the outcomes. Until this most recent one.

I agreed to it before I knew it would be written in first person based on a phone interview with me, but not written by me.

I was sent the article to fact check before it was published. The facts were correct. I hadn’t been misquoted, but it sounded nothing like me. It made me feel less than who I am. I was able to suggest some alterations. But even once my changes were incorporated the final article still felt clumsy. I would not have published it as one of my posts.

The journalist who interviewed me didn’t even tell me when the article was published. I found out when another journalist (who’d read the article) contacted me to ask if I’d be willing to interview for another ‘first person’ article written by them, about my experience of psychosis.

I politely declined. This (second) publication’s articles are sensationalist, pumped out to shock the masses and exploit the contributors. It would have been a hatchet job on my values. The opposite of empowering those with lived experience, educating those without.

I have no hesitation broaching my experience of psychosis with individuals, organisations, or the media, but only on my terms. Stories of psychosis are still in a different category to those of anxiety and depression. The media is not as used to them. They have to be handled with care and controlled by the person telling them.

I don’t even like my family or friends speaking for me about my illness. Not because I don’t trust them, but because I have more practice at relaying my experience with context and nuance.

However, disclosure around mental illness without an awareness of how to do it safely can be damaging, even dangerous. Whether you disclose your experience to one person, several, or in the media, yours and your audience’s safety must be your first priority.

If disclosure is likely to compromise your current mental health or retraumatise you, then you are not in the right space for it.

Especially if you are sharing with a wider audience you have to consider that some of that audience may be living through an episode of mental illness at the time of your disclosure and be particularly vulnerable to any information you share.

Content notes at the beginning of any article or interview containing triggering subjects for example suicide or trauma give your consumer the choice about whether they feel well enough to read/watch/listen on.

There are safe ways to relay distressing experiences to your audience. For example sharing an experience of a suicide attempt can help open up vital conversations around suicide and lessen stigma. But sharing explicit details about methods can be harmful to anyone in your audience who may be experiencing suicidal ideations. Similarly specific details about body weight, diet, or exercise should be left out of a safe disclosure around eating disorders.

Sharing your experience of mental illness is a personal decision. You have the absolute right not to.

But think about this – If you live with a mental illness and choose silence, you are leaving a space, for someone else less qualified to speak for you. A hole shaped like you, to be filled with more stigma.

If we give the world a void instead of our voices, it will fill it with its own assumptions. So, if you are well enough and able to do so – set your terms and boundaries, choose your conduit and gift the world your story.

I decided not to publish the link to the external article mentioned in this post. If you are interested in reading it to compare its style to my usual posts feel free to message or email me and I will share it individually.

You may also be interested in:

Media-Made Monsters

Don’t Call Conspiracy Theorists Crazy

Vulnerability And The Exploitation Of Kanye West

Trauma And Bipolar Disorder: Chicken Or Egg?

Photo by haik ourfal on Unsplash

Content Note: This post mentions trauma. It does not include specific details.

It’s a little acknowledged truth that sometimes bipolar disorder does not spring from a history of trauma. On my first admission to hospital and every admission since, I have been asked whether trauma smoulders in my past, and keeps the fire of my bipolar disorder burning.

Up until relatively recently parents were still automatically blamed for their children’s mental illnesses, particularly schizophrenia and bipolar disorder. And while abusive parenting can be a contributing factor to these illnesses, and parents can pass on a genetic predisposition to a highly heritable mental illness such as bipolar disorder, beyond that, a parent isn’t responsible. As for my upbringing – my parents were not perfect. But they were loving and supportive. They were not a source of trauma.

I searched for years for some of the more common culprits of a trauma history (such as physical, sexual, or emotional abuse) hiding in the shadows. I ran a fine-toothed comb through my entire living memory for evidence. For something to explain the existence and severity of my bipolar 1 disorder.

After the second time I got sick, I began to wonder if I was missing something. If I had blocked out something horrible? I spent close to a year working with both my psychologist and psychiatrist to try and unearth a tangible cause for the god awfulness that had descended on me. And I came across a lot of things in this archaeological dig through my psyche.

Among many happy memories. I found sadness, exclusion, some bullying. I found burnout and disappointment. I found ambition and perfectionism. I found drive. I found questionable decisions. I found some experiences that my psychiatrist raised his eyebrows at, but when my psychologist worked through them with me, we found no symptoms of PTSD, no persistent feelings of powerlessness. I found experiences that were difficult and unpleasant and challenging.

But I did not find trauma.

Ironically, the only trauma I have ever experienced came with this illness in the form of psychosis, especially the first episode. Nothing I have experienced before or since that first time comes close to the hell of psychosis.

For me, the sudden onset of this severe psychiatric symptom contributed to its traumatic footprint. One week I was due to give birth to my first baby, with no history of mental illness. The following week I inhabited a terrifying alternate reality that no one else could see, in a psychiatric hospital Special Care Unit, tipping highly medicated breastmilk down the sink, while my husband looked after our new baby at home. For me, the experience of psychosis is the definition of terror and powerlessness.

The trauma of psychosis left its mark. After my second episode I started having panic attacks. I had never had them before. They were linked to the fear of psychosis recurring.

It took a long time to process what happened to me and to learn to live with the ongoing implications of this illness. But I am fortunate it was an acute trauma, not chronic or complex, and not of childhood onset. It didn’t happen at a time when my brain was still developing and more vulnerable to this kind of assault.

I have worked towards having excellent insight, which means I now recognise the precursor symptoms of mania, which can lead to psychosis. The early detection of symptoms and acting on them immediately have meant it’s been six years now since I’ve experienced true symptoms of psychosis. The deep sense of powerlessness has eased. In my case the trauma was a side effect of my bipolar disorder, not a causal factor.

But I sense I am in the minority. Of the people I know who also live with bipolar disorder many carry a history of trauma and/ or complex PTSD with them which, occurred before the emergence of their bipolar disorder.

I do not have the complication of a contributing trauma to re-trigger episodes of illness and to work through. These days, I don’t have a knotted web of psychological issues to untangle before my medication can get to work. I also think letting go of my resentful feelings at being landed with this illness has been somewhat easier because I can’t lay blame or direct my anger at anyone or anything  specific for causing this sickness.

And I am grateful for all of that.

If this post has brought up difficult feelings or symptoms for you and you are struggling, please contact your mental health professional. If you are in crisis (and in Australia) please phone LIFELINE on 13 11 14

Further reading:

Insight: The Essential Ingredient

My First Time

Misunderstood Mania