Bipolar Day 2022 – Great Inequality

Well

I remember my response the first time my psychiatrist suggested I could have an underlying bipolar disorder. That it had been the fountain of chaos that erupted in the form of postnatal psychosis the first time it came to call.

Denial. I believed he was telling me as a duty of care, because that was the case for some people. But not me.

I remember my response and where I was when he confirmed my diagnosis of bipolar 1 disorder several years later.

He was standing at the door to my hospital room that looked like a stack of post it notes had thrown up all over the walls. They were covered in technicolour squares that I had scribbled random ideas on and reminders of where I had put my fountain pen or my toothbrush.

Unwell

I had no short-term memory. My thoughts raced delusionally down corridors in my brain that had been emptied of the rational. At night, I wrote and wrote thousands of mostly nonsensical words. Sleep wouldn’t come, even with high doses of medications. I didn’t want sleep to come anyway. It ate into my thinking and writing time.

But back to that moment when I looked up at my psychiatrist in my neon rainbow dump of a room and asked: ‘Postnatal psychosis or bipolar?’

He didn’t torture me with hesitation. Just delivered the sentence: ‘Definitely bipolar!’

Those words spread through my insides like a cold, nasty liquid. For nearly four years I had teetered on the edge of believing that my mood disorder would be confined to the perinatal period like so many other women. That there would be an end to it.

‘Definitely bipolar’ felt like a life sentence. Devastated doesn’t begin to describe my sick feeling. Then that sickeningness was replaced by questions I cringe at now:

‘How can I subject my children to a mother with this illness? How can I ever achieve anything again?

I was very achievement oriented back then, and self-stigma told me vicious lies.

It will be 16 years in August since bipolar disorder flew fiery through my life the first time. I am glad I didn’t know what was ahead of me then because fear would have told me I wasn’t strong enough to get to the other side of hell so often.

If I could go back now, I would tell myself that although my life would be different, it would still be my life. I would tell myself that my entire relationship with fear would change because of this illness. For the better.

That I repeatedly reach points of wellness where I stretch out my hands and grab fear by the shoulders. I stare deep into its eyes and compare it to what I feel during psychosis. And I find most everyday fears evaporate in the memories of what I’ve survived.

I wish I had known that my children would benefit from having a mother with insight, not only into her illness, but life. A life I’d describe as good.

I am not naïve enough to believe I’ve had these empowering experiences through force of will, intelligence, doing the work, taking the medication, fairy dust…

I will say this repeatedly in different mediums and articles, because it is important to acknowledge, again and again and again: I live with immense privilege. I am a straight, white, cis-gendered tertiary educated woman with no concurrent disabilities, who can afford private health insurance.

It is helpful that I have worked to gain insight into my symptom pattern. Exercising and taking medication that works for me, is also crucial. I am not shackled by addictions to substances that could derail my stability. But every one of those things would be much harder to enact and maintain, without my privilege.

My privilege does not mean I haven’t suffered. It doesn’t invalidate my experience, but it must be acknowledged for context every time I tell my story, otherwise that story is shallow, loses meaning, and does a great disservice to the many people who live with this illness, but without privilege to boost them to the head of the line when it comes to accessing the best care, and being the most supported they possibly can be, during the challenge that is living with this chronic, intermittent, potentially fatal illness.

You may also be interested in:

The Well Times

My 2018 World Mental Health Day

World Maternal Mental Health Day: It’s Not All Postnatal Depression

Mental Health Snobbery

Is stigma surrounding mental illness only generated by people who have never been mentally ill?

No.

There is a version of the S-word that lurks below polite conversations about ‘stigma surrounding mental illness’. It occurs amongst people who experience mental ill health, and it is camouflaged by the notion that we are all in this together and all experience a similar level of stigma.

But we are not, and we do not.

I first became aware of this after my encounter with acute Postnatal Psychosis, and the rupture from reality that accompanied it. My experience didn’t fit the binary mould of the common Perinatal Mood Disorders: Perinatal Anxiety (PNA) or Perinatal Depression (PND).

Over time, I discovered that (not all but some) mothers who have experienced PND or PNA, especially if it is mild, carry harsh opinions about those of us who need medication and hospitalisation or who live with other diagnoses.

Some examples:

I once read an account by a woman who was able to resolve her mild PNA by going to a special mother’s group, which, she wrote:

‘Thankfully didn’t have any loonies in it, just normal mums who were struggling a bit.’

Another time, when I was hospitalised in the Mother Baby Unit of a private psychiatric hospital, I heard a group of mothers cackling in the common room:

‘At least we aren’t like the real crazies in the rest of the hospital.’

This snobbery irritated me at the time. Several years later, I became one of the ‘real crazies’ (patients in the main hospital) and… felt sad for these women who left their experience of mental illness with the same narrow mindset they had entered it with.

That said, most of us start the ride into mental ill health with biases.

I remember during my first admission, two of the mothers in the Mother Baby Unit were having ECT (Electroconvulsive therapy). I didn’t have any strong conscious opinions about ECT. But if I’d been asked, I suspect I’d have said: ‘That will never be me.’

Six weeks later, that was me.

ECT is still one of the most stigmatised treatments. Some of the strongest perpetrators of that stigma are those living with mental illness who have not had ECT.

 A couple of years ago, I encountered another patient in the hospital to whom ECT had been suggested as a treatment option. She asked me about my experience, and then said:

‘Well, I am a scientist and need my brain to work properly, so I can’t consider having ECT.’

I swallowed the prickly implication she had just hurled my way and thought of the surgery I had performed, the book I’d written, all the ways I’d successfully used my brain post ECT. I avoided that person for my remaining admission.

Patients new to mental illness often inadvertently extend their self-stigma to others.

During my last admission another patient told me that they had been in hospital for a week and that they were worried about the length of their stay. They asked me how long I had been in for. I replied: ‘This admission? Three weeks’

They visibly recoiled. Their thoughts may as well have been printed on their forehead:

‘More than one admission? Three times the length of my stay? And you are still here?’

I didn’t add that for me, three weeks was a minimum length stay, that in the past I had spent months hospitalised, that I would never be cured. Instead, I said:

‘Just take one day at a time, and don’t compare yourself to anyone. Everyone is different.’

But I know it can be tempting to play the comparison game. When I feel frustrated and vulnerable, my thoughts can turn poisonous:

‘Must be nice, to only have to take one medication or none.’

 Knowing very well that there is nothing nice about having to take even one medication or being unwell, even if you don’t need medications.

And that moves us on to the medication debates.

Before I came down with Postnatal Psychosis and Bipolar Disorder, I was a reluctant medication taker. I wasn’t specifically anti psychiatric medications. It had just never occurred to me that I would need them. Then I got so incredibly sick, that the prospect of refusing something that might help me was ludicrous.

Today the debates around psychiatric medication stigma tire me, because it is simple. If you don’t need medication to help manage your mental illness, that is awesome for you, but it doesn’t make you stronger, or better than anyone who does.

Anti-medication stances are a luxury not everyone can afford. Voicing that stance without acknowledging the accompanying privilege, can stigmatise those who do need medication to manage their illness.

And appearances can be deceiving. Someone experiencing moderate or mild symptoms without access to good mental health care, may suffer more than someone, like me, whose symptoms and treatments may look worse on paper (psychosis, ECT, etc) but who has had consistent access to excellent quality mental health care.

No one’s lived experience should be used to minimise or stigmatise someone else’s.

So, whether this is your first and only episode of mental illness or it is one of many, or you’ve been lucky enough to never experience one,  when you form an opinion about others living with mental illness, please replace judgement with compassion and think before you speak or write.

You may also be interested in the following posts:

Psychiatric Medication And Stigma

World Maternal Mental Health Day: It’s Not All Postnatal Depression

Welcome To Motherhood

ECT: Blowing up some myths – Part 1

ECT: Blowing up some myths – Part 2

The Well Times

What does well look like for you?

I have painted many pictures of myself when a Bipolar episode knocks me out of my life for a while.

But what about my well times?

I don’t identify with the cartoonish cliché of Bipolar Disorder. I don’t spend each day either drowning in depression or being supersized by mania. This depiction of the illness lacks nuance. It’s a stereotype wheeled out for memes or lazy reporting.

I can only speak about the fingerprint of my own experience. Severe, but well managed.  

Sure – when I am unwell, I tend towards very unwell. I won’t sugar coat that.

But, for me…for me – when I am well, I am well…well.

In my well times my life is not a daily struggle. If anything, I struggle less than many ‘mentally healthy’ people. Thanks to my Bipolar Disorder, my box of psychological tools to deal not only with my illness but life in general – is full. But before it thundered into my life, my toolbox contained the equivalent of a pair of tweezers and some toenail clippers.

I am well now.

And it looks a little like this…

It is settling into myself. It is being alert to all I am capable of. It is a beautiful, clear, hard-won self-knowledge

It can be simple things – being able to read and drive and go to the shops, immerse myself in my family.

But it is more than the simple things.

It is actively pursuing my edge, courting the possibility of foundering, because I know the feeling of foundering will be fleeting compared to the dull ache of regret which could plague me for years.

A couple of weeks ago an interesting job opportunity dropped into my direct messages. Both it and I were great on paper. Veterinary qualifications and experience. Writing qualifications and experience. Listed as the first requirements.

 It lit the spark I needed to update my CV, which had been languishing back in 2015.

I applied for it. I was invited to interview.

And perhaps for the first time I thought about what I wanted, rather than blindly throwing whatever I needed at it to get the job.

And so, I clicked ‘join meeting’ with all the skills and experience I could bring (for example writing well) and all that I couldn’t (for example managing stakeholders).

I came away thinking – I could do this, but do I want to? If offered the position I think my ego may have convinced me to squash myself into a shape I didn’t naturally fill, just to prove I could.

Thankfully, being authentic in the interview paid off.

Having a way with words was more important to me, and stakeholder management was more important to them.

And when I got the email thanking me for my time but telling me that I wouldn’t be progressing further in the application process, I felt – a sharp little sting and then… relief, because I really didn’t want to squash myself into someone I wasn’t.

There is always a danger in well times.

It is the fear of what may happen in the unwell times.

There are times, even when perfectly well, I have to resist the pull to sit in a metaphorical corner rocking with my hands over my eyes doing nothing, because I know what has happened to me, could happen again.

I’ve felt that pull many times. I have resisted it many times. Over time I’ve gathered proof that resisting is the only way to have the life I want, even if it is a life lived with this illness. Without that resistance I would lack a lot. My second child and my self-worth top a long list.

Most recently that resistance has gifted me an updated CV and a stronger sense of who I am and what I want.

I know in the last couple of years, mental unease has crept into many people’s lives and distorted their thoughts, feelings, and view of life. It’s a foreign and frightening landscape to find yourself in. And finding your way back to the well times can feel impossible.

For me, the first steps back to wellness always start with a couple of questions:

What does well look like for you?

Does your toolbox contain more than a pair of tweezers and some toenail clippers?

You may also like to check out:

Where’s Your Comfort Zone?

My Mental Health Toolbox

On Uncertainty

Gentle Shoots Of Hope

I entered this year softly. Sparkling into it from one minute to the next, without expectation. But finding joy on the other side of the second hand.

I could now spend a paragraph on the 2020/2021 disclaimer for happiness, the guilty acknowledgement of everyone who may be suffering, that feels as though it has become mandatory whenever you write or talk about anything remotely good happening to you in pandemic times.

But I won’t, because in this moment it feels disingenuous. The events of the last couple of years may have thrown it into sharper relief, but virus or not there have always been people who have it worse than me and those who have it better.

So – no disclaimers. We’ve all had challenges from the dung heap of life thrown at us. I don’t believe bad things happen for a reason. But I do believe that it is the rubbish times that make magic moments shine when we happen upon them.

I spent New Year’s Eve last year (2020/2021) in hospital – just one day in a holiday package that started with an admission on Boxing Day. I didn’t feel well enough for people. Including my husband and children. Dinner came with a serve of ‘seasonal vegetables’ leached of colour and boiled into malodourous oblivion. Dessert was my nightly mouthful of dry medications washed down with tepid water. Long before midnight I was obliterated by that medication and happy to be so. Joy was not part of the equation.

When it came to thinking about New Year’s Eve plans for last year, I had only recently discharged from hospital after another Bipolar flare. A brief 3 week admission starting in late October that bled well into November.

I juggled the idea of having friends join us for what is a special evening for me.

From the ages of six to thirteen I grew up in Germany, in a culture that celebrates New Year’s Eve joyfully and raucously. I remember towers of champagne glasses filled and overflowing with bubbles from the top tier down. There was music and animated conversation, which gave way to the fireworks at midnight. People bought their fireworks from the supermarket and let them rip into the newborn year from their snowy backyards.

On New Year’s Eve 2000 I introduced my (then new) husband Michael to this way of celebrating. We were living in the UK, but had travelled back to Germany for the holidays. We spent that New Year’s Eve with Sandra, one of my closest friends, and Thomas – her partner, and their friends. We had raclette, lots of drinks, and laughed so hard. Just before midnight, we climbed into our coats, boots, hats, scarves, and gloves and walked, stumbling ever so slightly, down to the beautiful lake Sandra and I had spent childhood summers swimming in and childhood winters ice skating on. It was freezing. Too cold to feel our faces. The whole village was there. The air smelt of nothing but fireworks. We were in our twenties and euphoric.

Thomas died barely six weeks ago. The loss of someone we loved has been compounded for me because I can’t hug his wife – my lifelong friend whose hand I used to hold as we jumped into a New Year.

New Year’s Eve in Australia is different. It is the hot afterthought to a showy Christmas. The vibe around New Years for many Australians is ‘Meh – can’t be bothered.’ or it’s a night of heavy drinking that culminates in a headache on New Year’s morning and a set of resolutions, which won’t last past January.

And yet I celebrate the ending and beginning of years…when I can. In part it is fuelled by nostalgia. It is also because I have learnt to celebrate things while I can, because there will be times when I have no choice whether I get to celebrate or not. There are times when I am too unwell. Times when it’s overboiled vegetables instead of home cooking.

Not celebrating can also be a missed opportunity for making memories. Memories of joyous hours, which become part of everyone’s narrative. Memories that become unspeakably precious in hindsight when we have lost those we shared them with.

And so, I sent out some invitations and had a beautiful night.

There were candles and sparklers and laughter across an increasingly messy tablecloth as the night moved on. We ate pistachio baclava with mint and rosewater syrup and white peach sorbet for dessert.

By 2 am the house was buzzing. I had picked up my older child and two of their friends from another party to join the other couple of kids already at home for a sleepover. In the early hours of this New Year my house was steeped in happiness.

For me, 2022 has started with love and energy, and out of the losses and difficulties of the previous year I sense gentle shoots of hope are emerging.

One of the positives of 2021 was that my memoir Abductions From My Beautiful Life was published. For an excerpt and more info click here Book

You may like to check out how some of my other years have gone in these posts:

2020 Ends In Hospital

Covid Lockdown In A Psychiatric Hospital

2018 – The Year I:

From Holiday To Hospital In Under A Month

The place from where my words usually come is wrapped in wet cotton wool. I am in hospital.

For years now my prodromal signs of loss of concentration and short term memory – which can be precursors to either a manic/psychotic episode or a depressive episode – have always landed on the manic/psychotic side.

This time the signs were the same. My psychiatrist and I gambled, counted on the past history of manic psychotic, adjusted medication accordingly.

Only it went the other way. I flattened, unhelpful phrases trudged like a battalion of soldiers through my soggy brain: …better off without you…. Everyone. 

There is no need for alarmed raising of eyebrows. This is not my first go on this merry-go-round.

Those derogatory words and phrases are completely alien to me. I can see them for what they are. Just a clinical sign. Nothing more, nothing less. They don’t prompt me to hatch self destructive plans. They prompt me towards my psychiatrist, and towards hospital, because the world feels like sandpaper on my soft brain. The hospital won’t fix it quick, but it will bandage the raw areas while they heal.

At this level I find depressive symptoms are easier to manage, easier to live with than manic symptoms…unless of course I plummet to the complete paralysis of catatonic depression…and then it’s just as horrid, possibly worse.

I may expand on this comparison of symptoms  in the future. For now there is no concentration, and motivation feels like riding a slug to catch up with a leopard made of quicksilver. There is literally no point.

I do own a new hospital mug. The design is fresh, green, paisley, floral… It is sprightly. It’s the  small things that make it less bad.

2020 Ends In Hospital

Insight: The Essential Ingredient

Visiting Someone In A Psychiatric Hospital?

Covid Lockdown In A Psychiatric Hospital

Deciding To Hope

To hope or not to hope?

In one week my immediate family and I are leaving for a holiday on Heron Island. That was a difficult sentence to commit to. Not the sentence, just one word.

‘Are’

The certainty inherent in those three letters. Articulating it feels like I am going to jinx it, like I will alter the course of history, even though I know that’s impossible.

This is our third attempt at this holiday. The first was over Easter 2021. I almost needn’t follow that up with any explanation. To use a recently much reworked cliché -everyone was in the same boat…or in our case not in the boat bound for our holiday destination.

It was a time of global holiday cancellations. We were all still invigorated by the adrenaline of the early days of a pandemic many believed could be conquered and left behind.

We rebooked our holiday for Easter this year. But in a twist of acutely painful timing our city was locked down. Ironically only for 3 days. But they were the exact 3 days we were meant to travel to Heron Island.

By the time that little lockdown ended, everyone else was off to enjoy their Easter camping trips. We were left feeling slapped, as though we had been singled out by the universe to miss out on our holiday.

But we rebooked again. For next week. Knowing it might not eventuate this time either.

And about three weeks ago doom crept into the family. We began to censor ourselves and each other. Snapping ‘If it happens!’ if anyone dared mention anything to do with the holiday. We shot each other down with sarcasm and repressed feelings as though expressing any plans, hope or joy associated with this holiday would save us the disappointment if it had to be cancelled again.

So, just under three weeks ago our family decided – that instead of clenching everything, and white knuckling it through this will-we-wont-we time, we would allow ourselves to feel the joyful anticipation of this holiday.

We began to talk about what snacks we’d take on the car trip. What we were looking forward to most. We wondered if we would see clown fish. We started making packing lists.

Don’t misunderstand me. This is not about mindlessly Pollyanna-ing the reality we live in. All four of us are abundantly aware that things can look like they are going ahead one day only to have them snatched away in a minute.

While it is true that right now we have no control over whether our holidays or special events will be cancelled at the last minute – it is also true that we never did, we just weren’t as acutely aware of it.

But we can choose how we feel in the lead up to planned events. We can choose to anticipate disappointment or anticipate joy. Whether it ends up being disappointment or joy is almost irrelevant because it isn’t about the eventual outcome. It is about how we feel right now.

We can choose to scrunch ourselves into a ball of anxious negativity. But for what? Being able to say ‘See I told you it would be cancelled’ if it is cancelled? Like a sort of sick Schadenfreude directed at ourselves.

Or we can choose a more relaxed, positive attitude that coexists with the knowledge that it may be cancelled, but that the anticipation is pleasant. If the holiday goes ahead we will have had a much nicer lead up to it, than having to spend the first few days unclenching from the negativity.

If it doesn’t happen, we’ll be disappointed, but we won’t have wrecked the preceding few weeks with dread.

Choosing to have low expectations in an attempt to avoid disappointment is not only flawed, but in these times of immense uncertainty it doesn’t serve us well. It robs us of joy. The brave thing to do is hope in the face of uncertainty regardless of whether that hope ever grows into reality.

That said, I have two disclaimers for the hope approach.

The first is that the ability to conjure hope relies on reasonable mental health. Someone experiencing symptoms of mental illness, especially those featuring depression or anxiety will no more be able to think themselves into hope than a diabetic can think their blood glucose levels into the correct range. They will need the right treatment for them before hope can become a choice again.

The second is that if you are attempting this with children, they need to be old enough/emotionally mature enough to understand that the hope does not guarantee the holiday.

For today, everyone in my family is well enough to hope that by mid next week we will get to see those clown fish and soak in the endless blues of the sky and the ocean surrounding our tiny Island destination.

You may also like to check out:

On Uncertainty

Covid Year 2: Timing Your Perspective

Razor Blades In Mud: Laziness Or Depression?

Work Leave For Mental Illness If You Are Not Naomi Osaka

Naomi Osaka’s decision to step back from her job for reasons of mental ill health has stirred up a lot of debate in the last week. And yes, it’s great that she is being open about her mental ill health being the reason for this decision.

But Naomi Osaka is not representative of most people who experience mental ill health during their working life. The main reason is that (financially) Naomi can afford to take enough time off to recover.

I don’t point this out to minimise her suffering. Mental illness doesn’t discriminate. It will make you feel equally shit whether you are wealthy or not. But the luxury of time off for an employee to recover fully from an episode of mental illness is not one many workplaces will or even can accommodate.

This week several experts have stated that it is illegal for employers to discriminate against employees living with a mental illness, that these employees have a right to time off and to have their work modified to accommodate that mental illness.

I have mixed feelings about this. I feel exasperated, bemused, and tired. Because these earnest, well intentioned experts have no idea how mental illness and work mix in the real world.

The first time I experienced mental illness (postnatal psychosis followed by rebound depression) I was hospitalised for close to four months. ‘Luckily’ for my employer I was on maternity leave, so absolutely no thought had to be put into managing my absence, because it had already been planned for.

After I recovered, I continued to work as a small animal vet for another 12 years before taking a break to have my book published. In those 12 years I experienced a severe Bipolar 1 episode on average every 2-3 years. When I say severe, I mean requiring hospitalisation for weeks or months on end followed by a gradual re-integration to life outside the hospital.

Here are the two deal breakers my illness presents to most work places:

Firstly, for me, the onset of episodes of illness is sudden – ie between 24-48 hours. There is no time to plan or find someone to fill in.

Secondly, when I’ve had to phone work to say I would not be in for my next shift, I’d have to follow that with ‘I have no idea how long I will need off’.

Again – luckily for my employers – in those 12 years I was a casual employee. This meant I was effectively fired each time I got sick.

The practice I worked for was not doing anything illegal, and from a practical and financial point of view they could not have indefinitely held a position open for me. Each time I eventually recovered, and because there is almost never a shortage of work for vets – new hours were found for me. But me being able to slot back into the same workplace each time was due to the nature of the industry, not due to any laws to protect my position and income.

I am privileged, and thankfully my husband could support our family without my wage when I got sick. But my survival and roof over my head have had absolutely nothing to do with my workplaces being able to accommodate my mental illness.

Just because it isn’t legal to fire people or make their life hell because they live with mental illness doesn’t mean it isn’t happening. I know plenty of people who live with this reality.

This injustice occurs because of a gargantuan power imbalance between an employee who lives with a mental illness and their employer. Whether employers are aware of it or not: They hold all the power. Here’s why:

Stigma still prevents many people from disclosing they live with a mental illness to their employer – especially when they are asymptomatic. Once that person becomes symptomatic, they are likely to struggle just to get through each day or hour. Symptoms such as poor concentration and memory, distorted thinking, irritability, a sense of hopelessness, panic attacks, and non-existent self-esteem, (to list just a few) make it incredibly difficult if not impossible to not only schedule a meeting with their boss or with HR, but then present at that meeting as a fully functioning human being.

And if they do, and their boss discriminates against them they often don’t have the mental resilience and the finances for a legal battle to bring their discriminating employer to justice.  

These employees will often just go quietly –because that is all they have the energy for. Then their employer gets to shrug their shoulders and say: ‘Well it was the employee’s choice to leave!’

I am grateful to Naomi Osaka for cracking open the conversation about mental ill health at work a little wider. If it causes even one employer to stop and consider that the playing field between them and an employee who lives with mental illness isn’t even, it will be a good thing.

But there is still a long way to go before people who disclose their mental illness at work can expect to be treated the same as anyone who discloses a physical illness.

To read a bit more about my work life, you might like to check out my recently published memoir: Book and how it came to life: Welcome To The World ‘Abductions’

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:

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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

2020 Ends In Hospital

I am going into hospital later today.

And I am aching to get there, straining towards the moment I close the door to my hospital room on a world I am the wrong shape for right now.

How did I get here this time?

Fourteen days ago I had a regular appointment with my psychiatrist. Just a Bipolar 1 Disorder monthly maintenance appointment. I was completely asymptomatic.

Thirteen days ago I left for our beach holiday and forgot to pack my swim wear. Subtle. I mean that could happen to anyone. Right? But by the following morning I was symptomatic alright. My short term memory and concentration were dissolving like sugar cubes in boiling water.

A buzzing pressure behind my eyes radiated up my forehead. I knew from bitter experience, if I did nothing, soon that buzzing could make me second guess what was real or not.

That was symptomatic enough to page my psychiatrist on a Saturday morning. It’s only the second time I’ve paged him out of hours in 14 years. He called back in under three minutes.

Over the last nearly two weeks, the first of which I stayed at the beach, he telephone consulted with me every second day, adjusting medications, a little more of this, a little more often of that. I slipped from my bed gratefully into the ocean, timing the most sedating medications for times when I’d be in bed not the ocean. I seemed a little better, maybe? But then not.

Back home we continued every second day phone consults, adjustments. This is by far not the sickest I have ever been (although psychosis and catatonic depression requiring ECT to reverse, do set a very low bar)

So why would I want to go into hospital, rather than continue treatment at home?

Here’s why:

The surface of my brain feels as though it is covered in papercuts and being surrounded by people and noise is like having lemon juice dribbled over the cuts.

Trying to hold in the irritability of being around people and noise (including my close family) is like being intensely nauseous with someone threatening to punish you if you vomit.

One of the parameters I use to assess how close I am to needing to go into hospital is ‘the sandwich test’. Think about the amount of concentration and short term memory it takes to make a sandwich – nothing fancy, just two slices of bread, some butter and one topping. For most healthy, able bodied, able brained adults, this is not a challenging task.

Right now – I can still make a sandwich, but it’s a challenge. I am making a decision, based on past experiences, not to wait with hospitalisation until challenge becomes an impossibility.

As for the seasonal timing – Christmas and New Years celebrations? I am veteran enough in the management of this illness to know it has no knowledge of nor respect for holidays and anniversaries. I could list my tenth and fifteenth wedding anniversaries as times spent in hospital, a longed for trip to Paris cancelled because of recent hospitalisation, and that would be the beginning of a list so long I’ve forgotten most of it. These times are just human constructs. If it swallows them I don’t dwell on them.

Instead I celebrate the unscathed special occasions extra hard, to make up for the times there is nothing.

The final reason for going into hospital now, is because I can access this level of care. I am fortunate to have the option of going into a private psychiatric hospital when I am sick. The standard of hospital care I will receive will be excellent. It will far exceed anything the public psychiatric hospital system has to offer.

I loathe getting sick enough to need hospital support. But perhaps even more than this I loathe the hypocrisy of someone with my privilege not utilising that support because of some misguided stigmatising ideas about what it means to be a patient in a psychiatric hospital.

I am profoundly grateful I can afford care in a good private psychiatric hospital. And part of my own recovery, once I’ve stabilised medically, is to remember there are many people living with this illness, and other severe mental illnesses, who are learning to live with them with far less support and privilege than I have. When my recovery feels hard I focus on this:

If I access the supports I am fortunate to have, I am more likely to be around for long enough to help raise awareness of the inequality between our private and public mental health hospital systems, and work towards our public mental health hospital system actually supporting some of our most vulnerable when they need it most.

If you are new to Thought Food and would like to know a little bit about who I am when I am well, you may like to check out:

Who Am I ?

Radio And Podcast Interviews

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