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

RUOK Day: Full Disclosure

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Doing the talking, not the asking on RUOK day 2019

 

How was everyone’s RUOK day? Did you ask anyone? Did you get asked? Did you post or share something on social media about it, and feel good about participating?

As someone who lives with a severe mental illness I felt as though I should welcome RUOK day with open arms, that I should be thankful that someone was paying attention to ‘us’… for a day.

But I didn’t feel what the day wanted me to.

What did I feel? For starters, a little infantilised. And please before people send me enraged messages that that is not how they felt and that I am spoiling the fun for everyone, hear me out.

Continue reading “RUOK Day: Full Disclosure”

Muscle Memory

hanged pair of white leather figure skates

We went roller blading over the school holidays. It was my first time. We arrived to loud music, children shrieking, the clank of skates hitting each other, and the thump of bodies crashing into the barriers. Roaming skate instructors, gave snippets of advice to the inept among us:

‘Lean forward and put your hands on your knees. Don’t look at the ground.’

With each instruction the tension in my body ramped up.

Continue reading “Muscle Memory”

Making Sense Of It

 

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How do you learn to live with the difficult truths of your life? The ones you can’t just step over and leave behind?

Confirmation of my Bipolar 1 diagnosis was one of those truths for me. For several years after my first episodes of illness, we didn’t know whether we were dealing with Postnatal Psychosis or Bipolar Disorder. In my mind one was transient, the other a life sentence. Each time I’d press my psychiatrist for a definitive diagnosis he’d say:

‘We’ll have to wait three to five years to see if you have another episode.’

This answer frustrated me immensely. I wanted to put the whole experience of being mentally ill behind me.

Continue reading “Making Sense Of It”

The Best Friends

Friendship
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I don’t have a best friend. I have several.

My first best friend and I shared the ages five to thirteen in a tiny village in southern Germany. We explored our world freely. The church bells and the colour of the sky were our only reminders of when to go home. We played in the woods. We watched frogspawn turn into tadpoles. We climbed trees. We built igloos and snowmen. We ate wild raspberries and blackberries straight off the hedge. We rode our bikes everywhere. Then, one rainy October afternoon, everything changed.

Continue reading “The Best Friends”

Decisions

Decision making

How do you make your decisions? Gut feeling or logic?

I am rational over emotional. Give me scientific data or a good pro/con list over intuition any day. I have no problem with risk, but I prefer it to be calculated rather than a leap into nothing with my fingers crossed. But not all questions can be answered with logic. Ten years ago, I wrestled with one that had no right or wrong answer: To have or not to have a second baby. Continue reading “Decisions”

Are You ‘Shoulding’ All Over Your Life?

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As we enter the pointy end of the year my trusty, hard copy 2017 diary is filling up. There are end of year everythings to go to. There are kids’ concerts. There are art shows and celebrations of learning. There are special assemblies and swimming carnivals. There is keeping a spotless house…WHAT THE? Oops I seem to have slipped into someone else’s list because that one never makes it onto mine. But it’s an easy mistake to make – the straying into someone else’s list of ‘Shoulds’. There are extra work shifts, and continuing education seminars. There are more invitations for catch ups with friends, family, acquaintances, work colleagues. There is of course Christmas – no longer quietly creeping up, but everywhere we look, reminding us to worship. At the altar of consumerism. Impending Christmas shouts that we should put reindeer antlers on our cars and see people we might not otherwise choose to spend time with.

Continue reading “Are You ‘Shoulding’ All Over Your Life?”