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

Covid Lockdown In A Psychiatric Hospital

I recently encountered Covid  restrictions and a lockdown as an inpatient in a psychiatric hospital. And while the specifics are relevant, my experience was more complex than donning a mask and staying inside. But let’s start with the specifics.

There is the loss of the hospital dining room and its well-stocked salad bar. This normally bright spacious room filled with chatter and choice has closed, gone into mourning. The ability to choose your own food and sit where you liked – a small token of independence – replaced by a tray delivered to your room at 7am, 12 pm, and 5pm with a sharp rap at the door. You get little choice and a small window to eat before the kitchen staff are back to collect your tray.

There is not being able to leave the hospital grounds until discharge. No opportunity to test where you are at with a short visit home. Another small freedom lost, and you become totally reliant on visitors to bring you anything you might need from the outside world. Until restrictions turn to lockdown and the visitors are banned from visiting.

All staff start wearing masks, and the buzz of their anxiety fills the hallways like a swarm of bees. Within a few days patients are told to wear masks anytime they are outside their rooms.

For anyone who has lived on this planet for the last year, none of these restrictions or lockdown conditions will sound unusual. Everyone has lived some version of them.

But my experience of them as a psychiatric hospital inpatient was different to my experience of them when I’ve been well and at home.

Here’s why:

Even with access to an excellent private psychiatric hospital, being an inpatient strips me of autonomy and leaves me feeling as vulnerable as a slug on a busy highway.

The admission process alone – which includes providing a urine sample for drug testing and the thorough inspection of your bags (for any means of self-harm or suicide) by two gloved nurses – is a humiliating experience.

 It screams: ‘You cannot be trusted’ and whispers sharply: ‘We are in charge of you now.’

It’s made worse if the nurses attempt light conversation about the contents of my bag.

‘‘That looks like a good book…’

I don’t have the energy for it, and it makes me feel like a toddler they are trying to distract from something unpleasant.

As a patient in a psychiatric hospital I frequently lose the right to my feelings. For example:

One of my admitting symptoms (usually prodromal to mania) can be intense pathological irritability. It is completely different to feeling irritable in a normal context. And it is not the same as the irritability I feel when I am forced to interact with one of the nurses whose attitude grates on me even when I’m well.

 I try to be polite, but when my tone slides into curt, she cocks her head and says:

‘Your irritability levels are quite high today.’ before self-importantly noting this down as a symptom for the day. And I am powerless, because if I protest that would just be further proof of my mental illness to her.

And then there are the cringeworthy names I am called, mostly by nurses and kitchen staff:

‘Dear, Darling, Love.’

 I am ‘Darling’ to only my mother. ‘Love’ never fails to sound derogatory to me. As for ‘Dear’ – one of my worst and earliest hospital experiences involved being called ‘Dear’:

Fourteen and a half years ago when I was less than a week into my first episode of mental illness, I experienced a severe psychotic episode. I was led into the Special Care Unit (the highest security locked ward) of the psychiatric hospital by two nurses, one gripping each elbow.  On the way there, one of these nurses said:

‘Don’t worry Dear. You won’t remember any of this in the morning.’

The next morning I was so sedated by the (necessary) medication I‘d been given, I may not have looked as though I had any memory of the horrors of psychosis. But I remembered all of it. The proof is in the account of that night in my memoir being published this year.

If I knew where to find the nurse who called me ‘Dear’ (on that occasion), I would give her a copy to show her just how much a patient experiencing florid psychosis can remember.

There are many other factors that contribute to my sense of infantilisation in hospital. But elaborating on them would take me well over my word limit. So I’ll leave it here, for now.

Thankfully this recent admission was short (two and a half weeks) but the combination of the inherent lack of autonomy in being a psychiatric inpatient and the above mentioned  Covid factors hugely amplified my vulnerability.

And I have never felt so powerless.

You may also like to check out:

2020 Ends In Hospital

Visiting Someone In A Psychiatric Hospital?

On Uncertainty

Veterinary Work And Bipolar Disorder: A Podcast Interview

My new little niece

Earlier this year I wrote a blog post Veterinary Work In The Time Of Covid-19: Unspoken Truths which received a lot of attention, especially in the US and resulted in me doing a couple of podcast interviews.

The second one was released recently and dives deeply into my work life before and after the onset of Bipolar 1 Disorder, and the adjustments I had to make for it to be sustainable. It hopefully goes some way towards dissolving the myth that it is impossible to function highly when living with a severe mental illness.

I was interviewed by Dr Kimberley Khodakah and you can find that episode here:

https://anchor.fm/time-to-paws/embed/episodes/Living-a-good-life-despite-everything-el0eqc/a-a3o42u4

The other veterinary podcast episode with Dr Andy Roark https://drandyroark.com/cone-of-shame-episode-30-unspoken-truths-about-covid-19/ came out in May. This one is a bit more veterinary industry oriented than Kimberley’s.

Happy listening!

If you are interested, you can find all of my radio and podcast interviews here:

Radio And Podcast Interviews

Mental Health Parenting Truths 101

Written for Queensland Mental Health Week 2020

At some point you will get it wrong.

It will be well intentioned. It may come from a place of not wanting to replicate your own upbringing or the mistakes you think other parents are making. And it will probably be informed by your experiences and biases.

I’ve always known this…in theory.

But the other day my fourteen-year-old daughter courteously yet clearly served my imperfections in this area up to me. This was no teenage tantrum. It wasn’t even an argument. It was simply a conversation in which I was presented with unpalatable information about myself, and then had to choose what I did with it.

It started simply:

‘Mum, can I please get TikTok? Remember I asked you about it a month ago, and you said you’d think about it.?’

‘Mmhm.’

For context – she gained Snapchat and Instagram over the last few months, to my knowledge has not abused any of her privileges, and right now appears to be in good mental health.

So, we talk about how she’d manage seeing distressing content if it popped up. I probe her with her worst-case scenario.

‘What about animal cruelty?’ I say and follow it with a graphic example.

‘I’d talk to someone about it.’ She answers calmly.

‘Who would you talk to?’

She doesn’t hesitate: ‘Well definitely not you! Probably Dad.’

‘Why not me?’ I ask,

‘You and your mental health stuff – you’d blow it all out of proportion, take me to a psychiatrist, have me medicated and force me into years of therapy.’

I did ask.

And while she is wrong about the imagined consequences of telling me she saw some distressing social media content, she is right about something else.

I am hypersensitised, filled with knowledge of the very worst mental illness has to offer. And not just my own. Every time I go into hospital, I share that space with others who are going through their own worsts.

When I see young inpatients often only four or five years older than my eldest child with bandaged wrists or cutting scars, bolts of fear shoot through me. Fear that one day my children could hurt like that.

Every time after my Bipolar 1 Disorder has put me through hell I am frozen by the threat that I will have given this illness to my children. I know that (beyond not introducing significant trauma to their lives and warning them of the dangers of drugs that can trigger the genetic component of this illness) there is nothing I can do to outparent it. But I still try.

After I got sick I was determined my children would grow up in a family that was open about mental illness. There would be no shame and no stigma. They would know from a young age where I was going when I went into hospital and why.

The knowledge that sometimes mental illness sprouts in childhood and adolescence is heavy and made heavier by the fact that sometimes it is fertilised (even in the absence of major trauma) by parents unwittingly invalidating their children’s’ feelings or experiences.

I never wanted to be that parent. And I am not. But I may have made the opposite mistake.

 By unintentionally force feeding my children my concerns around mental health, could it cause them to turn away from the very tools that could help them should they run into a mental health crisis?

Mental health is stitched into the fabric of our family’s conversations partly due to my lived experience, but also because of what I do. My children have never known a time when I haven’t been a vocal mental health advocate. I write about it. I talk about it frequently – sometimes quite publicly.  

And if I dig deep into my motivation for wanting to change the way mental illness is perceived and treated, my children are at the core of it. That motivation is as simple as it is unrealistic:

I want to fix our mental health system so that it can help rather than harm my children should they ever experience mental illness.

I am loathe to admit it but yes sometimes all my motivation, knowledge and focus, can morph into hypervigilance, ready to pounce on the very whisper of something not being right with my children’s thought patterns.  And in my futile efforts to protect them from my worst nightmares, at times I probably veer dangerously close to pathologizing their emotions, which can be as damaging as not acknowledging them at all.  

I do this reflexively even as I know that parenting out of the fear of what could happen is even worse than living your own life ruled by fear.

And yet, deep down I know that if either of my children get sick it won’t be my fault or TikTok’s. If that happens, hopefully their father’s less informed love will be the perfect counterweight to remind me that while my knowledge might be useful in some situations, at other times applying the full weight of it can be like attempting to kill a fly with a sledgehammer. Ineffective and potentially damaging.

Post scripts:

It was a yes to TikTok.

While I am deeply grateful that right now neither of my children require psychiatric care, my advocacy work will continue, because it is grim out there. I caught up with a friend recently whose child does need a child psychiatrist urgently. The waiting time to get an appointment with a private child psychiatrist is currently twelve months.

Or there’s the public hospital Emergency Room if symptoms become life threatening while you wait…

Published with full permission from the fourteen year old who also helpfully pointed out I’d misspelt TikTok in the previous draft.

You may also like to check out:

Talking About Mental Illness With Children

As Mothers Of Sons

As Mothers Of Daughters

Is YouTube Rotting Our Brains?

Tokenism In Mental Health Awareness

Written for QLD Mental Health Week 2020

Saturday 10th October is World Mental Health Day and I feel a little conflicted about highlighting it. There are a lot of positives to having dedicated days or weeks to draw our attention to mental health. But I also believe we need to approach these awareness days with a little caution. It’s too easy to post or repost something related to the topic, tick the box of doing good and move on with our days.

Ironically these tokenistic efforts are becoming more common as awareness around mental ill health grows, especially when we don’t have to move beyond the comfort of our keyboards to feel as though we are achieving change. Of course it is good that there is more awareness, tolerance and marginally less stigma surrounding mental ill health than there was fifty or even twenty years ago. But we have to make sure we don’t replace the old insensitivities with their more modern counterparts.

I have written about my dislike of RUOK day before RUOK Day: Full Disclosure and this year I heard another perspective that reenforced my reasons for disliking this day. When I am well, my psychiatrist appointments usually consist of me requesting scripts for any medications I am running low on, a brief check in with how I’m going and then we chat about the state of the world, my advocacy work, his psychiatry work. This year one of my appointments happened to fall around RUOK day and we talked about the pros and cons of this day. I expressed my opinion and my psychiatrist referenced one of his patients coming in on RUOK day in distress because they were bombarded by people they knew asking them if they were ok. People they didn’t hear from for the rest of the year. People who were probably well intentioned, but using them as the token mentally ill person in their lives, to tick the box of having asked: RUOK?

Awareness around mental ill health should not be confined to one day or one week of the year. Episodes of mental illness flare unpredictably and feel as though they will never end. This feeling is fed by the fact that no one can tell you when it will end. There are good days and worse days. There are days when the risk of it turning into a terminal illness skyrockets. Someone may have a spectacularly good day on RUOK day, a calm and uneventful mental health week, but be suicidal sometime in April or on Christmas day, when it is all too easy to be under the impression that we showed our support for those among us living with mental illness back in mental health week, and Christmas day is busy and by April we are into Caesarean awareness month and IBS awareness month.

 So what can we do to be meaningfully aware of the impact mental ill health has on those of us who live with it, and what can we do to support them for more than a day or a week of the year?

Everyone who lives with mental illness is different and everyone’s experience is different even if they live with the same diagnosis. So, I don’t speak for everyone.

For me – I don’t need to be asked how I am. I have enough insight into my Bipolar 1 Disorder to know when I need to seek help. I am fortunate to have good support systems in place, so I don’t tend to feel lonely or isolated.

For me it is all about the language people use. Hearing or seeing stigmatising language either in the media, on social media, or spoken, punches me in the gut. When I am confronted with words like nuts, crazy, lunatic, psycho, mental institution, – the list is long – it belittles me. It strips away the facts of my life, my healthy functional relationships, my personality, my university degrees, my profession, my interests, my sense of humour and it reduces me to a hellish caricature of who the misinformed masses believe someone mentally ill is.

So, think about how you write and speak around me. If you hear or see someone else perpetuating stigmatising language around mental illness, call it out. Do so politely, but raise awareness of it. I do it as often as I can, but I also get tired of being told to shut up, get over it, or that I am overreacting.

Perhaps the most helpful thing you can do for someone in your life who lives with mental ill health is not to automatically ask them how they are, but to ask them what you can do to make them feel valued and supported all year round. They may answer: ‘Ask me how I am’ in which case you are doing it meaningfully and mindfully, not because it is a certain day of the year.

All that said, Happy World Mental Health Day everyone. In honour of it also being Queensland Mental Health Week from 10th-18th Oct I am aiming to drop a few additional posts in Thought Food this week.

Look after yourselves and each other!

You may also like to check out:

RUOK Day: Full Disclosure

Mind Your Language Katy Perry

Don’t Call Conspiracy Theorists Crazy

Don’t Call Conspiracy Theorists Crazy

If I were to call out language that stigmatises mental illness every time I came across it on social media, I’d be posting about it every couple of days. But no matter how called for I may feel it is, I don’t want to douse my readers in a bitter diatribe that often. I also enjoy a break from being told to shut up or get over it by people who don’t agree with my assessment of stigmatising language. So I’ve let it go for a while.

But I came across the following facebook post recently, which hit a nerve and left it throbbing for long enough to drive me to the keyboard:

Thoughts?

Now, I don’t like the word lunatic – but that is the least of the problems with this post. And as much as I’d like to agree with the sentiment, I have to ask:

What does this post imply about those of us who live with severe mental illness?

It equates us with people who believe and propagate fake news. The most pejorative label for people who don’t believe in climate change, the author of that snippet could come up with was to portray them as mentally ill.

Anti vaxxers, people who don’t believe in Covid 19, or who don’t believe in climate change don’t  have those beliefs because they are mentally ill. They believe them because they are poorly informed and possibly brainwashed.

So, let’s not conflate pathological delusions experienced as a symptom of mental illness with people who are just misinformed and who refuse to delve into some scientific research.

I live with Bipolar 1 Disorder, and have experienced delusional thinking as a symptom of this illness. I not only believe in climate change, I am very concerned about it. I believe the overwhelming benefits of vaccination outweigh the few risks. Covid 19? Of course it exists. Donald Trump? Ten of my posts wouldn’t be long enough to list the reasons he has to go.

And yet when I jump onto social media I am bombarded with posts that tell me that the best way to insult  the people who believe the opposite of the truth is to call them mentally ill, and thereby imply that if you live with mental illness you are in the same category as people who can be brainwashed.

Delusions caused by mental illness are completely different to the overconsumption of, and belief in, fake news. By labelling all of the people who don’t believe in scientific proof as mentally ill you insult and dismiss the many people who live with mental illness and who are critical thinkers who do believe in scientific evidence.

I can only speak from my experience of delusional thinking, but here’s what I know:

Delusional thinking isn’t a contagious false belief system you are indoctrinated with. True delusional thinking as a symptom of mental illness is completely involuntary. You don’t choose to experience it. It sweeps in on the coat tails of an illness that fundamentally changes how you interpret the truth.

For me, delusions are accompanied by mania which at its worst tilts into psychosis. The inside of my head feels as though I am riding a rollercoaster that’s on fire. I don’t sleep. The first time it happened, I tried to convince everyone of the truth to my malignant belief system. And in my experience true delusions due to mental illness resolve with antipsychotic medications.

The chances are your average antivaxxer or climate change conspiracy theorist will not change their beliefs if you dose them with antipsychotic medications.

So, If you read the post above and shrugged your shoulders or like several of my facebook friends gave it a like, let me rewrite it for you and see if you change your mind. Here goes:

‘If you believe all of (sic) world’s scientists got together to fake 7000 climate studies as part of (sic) elaborate hoax, you are not conservative you are a cancer patient. We have to stop treating people brainwashed by right-wing propaganda as political actors and start treating them on an oncology ward.’

Uncomfortable yet? You should be because the implication that people who live with cancer are idiots, is as ridiculous as it is insulting.

So why is it ok to equate my serious mental illness and the fact that I have at times spent months in a psychiatric hospital to me being an ignorant conspiracy theorist?

You may also be interested in checking out:

Mind Your Language Katy Perry

You Don’t Die Of ‘Mental Health’: Why Wording Matters

Misunderstood Mania

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What do you know about mania?

Everyone knows depression is bad. But does this mean mania is good because it supposedly sits at the opposite end of the bipolar spectrum?

Mania is often painted as the cartoonish counterpoint to depression. Perpetually bright, happy, and fun. But it is not fun. It is the character in a horror movie who starts out friendly but then morphs into someone with sinister, glowing eyes.

Mania assaults your senses.

Continue reading “Misunderstood Mania”

Psychiatric Medication And Stigma

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Photo by Wei Ding on Unsplash

Do you believe stigma around taking medication for mental illness exists?

Or put it this way:

If you had to choose, would you rather disclose that you were taking insulin or psychiatric medication (antidepressants, anxiolytics, antipsychotics, mood stabilisers etc) to your employer, your family, your friends, and a room full of strangers? And why?

Continue reading “Psychiatric Medication And Stigma”

Lies Of Omission: What You’re Never Told

Psycho Killer Shatters Young Family!’

Thoughts?

I had an interview with a PhD student from Melbourne Uni last week. It was for a study into what can be done to improve media reporting around severe mental illness (SMI) to reduce stigma. The media is largely responsible for the way people like me are perceived by the general public. So, I was delighted to contribute to this study.

Our trusted news sources are slickly practiced at generating gory headlines that draw eyeballs to them like magnets. If SMI is thought to contribute to a crime, it is either ignored or thrown into the story as a cold, hard after thought. Something that can’t be changed and is barely acknowledged as an illness.

The main characters in these horrific accounts may have an undiagnosed, poorly managed, or unmanaged SMI, but the journalist in the by-line doesn’t dig deep enough to expose the reasons for this:

Society does not care about or for us in the same way they do for others with serious, chronic, intermittent potentially fatal illnesses.

Continue reading “Lies Of Omission: What You’re Never Told”

My Mental Illness Makes Me A Better Parent

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I am giving my eight-week-old son a bath. One hand supports his head and neck, the other gently moves a wash cloth over his delicate skin. He kicks his legs, rippling the shallow water. His dark eyes stare up at me. Pools of trust. I make a minute adjustment to my hand supporting his neck. His head slips under the water, for less than a second before I instinctively lift him up. He splutters briefly and is fine. But I am not.

I hit the call button next to the baby bath and a nurse pops her head in:

‘Are you ok?’

‘No.’

I hand her my baby. Nausea clamps my stomach and works its way up my throat. Black mist hovers in my peripheral vision and I sink to the ground. I put my head between my knees, as red-hot malignant words shoot through me:

‘Did I just try to drown my baby?’

Continue reading “My Mental Illness Makes Me A Better Parent”