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

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

The Other Curve Being Flattened

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Mental health extremes in our house. Where does everyone at your place sit? By the end of this post you might have a better idea.

The Covid pandemic feels as though it has equalised our collective mental health. Or if not equalised, then it has certainly ‘flattened’ the mental health curve.

Most people who live with a mental illness have at some point experienced unpleasant times with no fixed end point, over which they have little control. And now the rest of the world is being forced to experience this too.

I imagine everyone’s mental experience of this pandemic differs based on their mental health history (among other factors). But it’s fair to say that right now most, if not all, of us are experiencing some form of mental discomfort.

On the surface, those who live with mental illness appear to be most vulnerable to this. But, this demographic may not be as at risk as we think.

As someone who lives with a severe mental illness but is currently relatively asymptomatic, I feel surprisingly resilient…for now.

Having previously lived through the rock-solid horror of psychosis, the inevitable Covid anxiety that flits through my brain now feels relatively easy to manage. I have an arsenal of finely honed tools to combat it. All that Cognitive Behavioural Therapy, the Acceptance and Commitment Therapy, and individual sessions with my psychologist are coming in handy.

I am also familiar with having my freedom restricted at times. When I am on fifteen-minute observations in hospital, I can’t go outside. At my sickest I have been too unwell for visitors. It doesn’t mean I like it, but I have at least previously encountered similar conditions to the ones I am living with now.

But what about everyone else?

Many people had been living with mild to moderate undiagnosed or poorly managed anxiety and/or depression for several months or years before Covid hit. I am particularly concerned for this group.

They don’t have solid medical and social support systems in place yet. The all-encompassing Covid generated stress is the perfect trigger for worsening symptoms. And accessing good mental health care quickly and efficiently may become even harder than it usually is.

Depression and anxiety symptoms can make the sufferer feel isolated even if they are closely surrounded by loved ones. Social distancing – so essential to manage virus transmission – will exacerbate symptoms of mental ill health in this group.

Then there are the people who have never lived with mental ill health.

They may never have experienced racing thoughts, heart palpitations, chest pain, irritability, distractibility, gastrointestinal signs such as nausea, vomiting and diarrhoea due to anxiety, a low mood, insomnia, incessant worry, or any other mental and physical symptoms that can arise due to stress and/or mental ill health.

These people may not know why they are experiencing symptoms or have the psychological skills to put them in perspective. So, they will suffer more than they need to.

But there is good news in the quagmire of black headlines we are sucked into daily.

We can use our own mental health histories to help ourselves and others in this crisis.

Here’s how:

If you live with mental illness and are currently symptomatic, your sole focus must be to do what you can to get well. I know from my experience I am of no help to anyone if I am symptomatic. It’s a cliché but one that applies here:

‘Put your own oxygen mask on before you help anyone else with theirs’.

Firstly, contact the medical professionals you would usually consult when you are symptomatic – whether that’s your psychiatrist, psychologist, GP, community health workers, or psychiatric hospital.

Limit your exposure to the news to once a day – if that. If you have family or friends who can reliably update you on the essential news only, do that. Immersing yourself in the details, is of no practical value, and it can make you feel worse.

Use the same tools you would usually use to distract yourself when you are living through an episode of illness. Eat regularly and well. Don’t consume alcohol or recreational drugs. And move your body in some way, even if it’s small, every single day.

If you live with mental illness and are currently asymptomatic be vigilant but not obsessed. Just because this time is stressful, doesn’t mean developing an episode of illness is inevitable.

Your oxygen mask will consist of continuing to take medication (if you take it), keeping your regular appointments with your psychologist, psychiatrist or GP where possible, eating regularly and well, exercising most days, avoiding or minimising alcohol consumption, and practising whatever psychological skills (for example Cognitive Behavioural Therapy) that you have learnt over the course of your illness.

Be aware of any news developments that have practical ramifications for you, but don’t marinate in the news. Once you have done all this and whatever else you need to stay well – consider this:

You can offer support to those who are struggling mentally, those who have never experienced symptoms of mental ill health. Reassurance that their symptoms are survivable with the right care, could mean a lot to someone who is new to these issues.

That said – only do this if you have the mental energy to spare – otherwise just look after yourself.

To those who sense they may have been living with anxiety or depression for a while and it is worsening: All the suggestions with regards to eating well and exercise apply. Don’t self-medicate with alcohol or other recreational drugs. It will make things worse. Getting the right help is also crucial.

I am acutely aware that accessing good mental health care is a challenge in this country even when we are not mid crisis, but some excellent online resources to start with are: Lifeline, Beyond Blue, and SANE (Links at the bottom of this post)

To all the people who have never lived with mental illness: Distraction, exercise, eating well, and maintaining social connections via technology are a good start. Don’t self medicate with alcohol or recreational drugs. If you are still experiencing symptoms related to anxiety or depression (as listed above) then the online resources at the bottom of this post may be useful, or make an appointment with your GP as a starting point.

And one more thing…

Once you have done what you need to help yourself – take stock of how this situation is making you feel. And then imagine feeling like this for much longer periods of time than this pandemic will last.

Imagine feeling like this but the pandemic didn’t exist and people around you made you feel as though your symptoms weren’t real.

Then translate your feelings into compassion. And when you feel like yourself again (and you will), extend some sympathy and support to those whose mental illness lasts a lifetime.

And to everyone: We can use our individual experiences of mental health and ill health to support each other through this strange new world and into a kinder future.

So look at who you are sharing your living space with at the moment and consider starting a conversation about where on the spectrum of mental health and illness you and your housemates or family sit. Then think about how you could help each other psychologically.

My own household is one of extremes (regarding the adults). I live with severe mental illness, currently asymptomatic. My husband has never experienced mental illness.

So, when he expressed frustration a couple of days ago about his attention span feeling like that of a gold fish, I said:

‘Yes, I know it sucks feeling like that. But it will be ok.’

And I gave him a hug – something which I believe (at the time of writing) is still acceptable and safe to do in a household in which no one is symptomatic or has returned a positive Covid test.

 

Disclaimer:

This post is based only on my own experience and anecdotal evidence.

For professional mental health advice please contact your psychiatrist, GP, or for more mental health and ill health information check out the following links, all three of which are currently set up to deal with questions about Covid related mental health issues:

SANE https://www.sane.org/

Beyond Blue https://www.beyondblue.org.au/

Lifeline https://www.lifeline.org.au/

You may also like to check out these other Thought Food posts:

When Covid-19 And Bipolar Recovery Collide With Unexpected Results

Mental Illness Doesn’t Respect Deadlines

My Mental Health Toolbox

What a mental illness can teach you about your mental health

Psychiatric Medication And Stigma

 

 

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”

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”

My Sliding Doors Encounter With Our Public Mental Health System

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Have you ever had a moment when your answer to a question determined whether your life imploded?

I have.

It came five days into parenthood. I was lying on the floor in my maternity hospital room crying because I was trying to outrun a jaguar chasing me towards a cliff. Things were starting to go very wrong in my brain.

In the following months, when my mind warped and writhed in the grip of psychosis and later catatonic depression, and when what started out as postnatal psychosis turned out to be a first episode of bipolar 1 disorder, I could not imagine things being worse.

But they could have been.

Continue reading “My Sliding Doors Encounter With Our Public Mental Health System”

My Mental Health Toolbox

PWC keynote image

This week I had the pleasure of giving a keynote address for one of the departments at PWC (Price Waterhouse Coopers). As part of this I ran through some of the things I have found helpful to help me monitor and manage my mental health.

I got some really positive feedback after the presentation and requests for the list of things that help me with my mental health. So I thought I’d share that list as a post here:

EARLY WARNING SIGNS AND INSIGHT:

In this context insight is the ability to identify early signs of mental ill health in yourself. This is much more challenging than it sounds, because signs of mental illness can masquerade as normal feelings and emotions.

For example – irritability and sadness are part of the normal spectrum of human emotions, but if they are overwhelming and persistent and interfere with normal functioning, they can also be symptoms of depression.

It can take time to identify their intensity or persistence as abnormal. The other challenge is that when we are well, we can often think our way out of sadness or irritability. But when they become symptoms that is impossible.

Someone affected by symptoms of a mental illness can no more think their way out of them than someone with a nasty case of gastro can think themselves out of their vomiting and diarrhoea.

But whereas vomiting and diarrhoea are obvious signs of illness (both to the person experiencing them and everyone around them) it takes insight to recognise when symptoms of mental illness emerge.

For me early warning signs can be an inability to sleep even with a lot of medication, intense irritability, and poor short-term memory and concentration.

Early warning signs are different for everyone. By learning what ours are we can be proactive about seeking help rather than waiting for symptoms to worsen.

For further reading on an example of insight into a depressive episode you can go to: Razor Blades In Mud: Laziness Or Depression?

Continue reading “My Mental Health Toolbox”

What a mental illness can teach you about your mental health

jony-ariadi-197568-unsplash Photo by Jony Ariadi on Unsplash
Photo by Jony Ariadi on Unsplash

Here’s a paradox: My mental health improved after I developed a mental illness. When I am not symptomatic (which is a lot of the time) my mental health is fantastic. It is possibly better than that of many people who don’t live with a mental illness. Here’s why:

Mental illness can teach you a lot about mental health, because it confronts you with the choice to change the way you approach your life.

Continue reading “What a mental illness can teach you about your mental health”

Accepted: Crumbs To Canary Wharf

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It started on the paper bag that the breakfast toast came in. First, I shook out the crumbs to give me an even writing surface. I had no other paper. I was inside the SCU (Special Care Unit), in a psychiatric hospital in August 2006, emerging from my first psychotic episode. And as the medication slowed my boiling brain, a miniscule part of me, took in my environment and thought:

‘I am one step away from a padded cell. Unbelievable. But while I am here, I will record as much as I can, because not many people experience this.’

So, I made my words tiny to fit as much detail as I could onto the toast bag.

Over a year later I wrote an account of my psychotic episode based on that bag and some diary entries. My supervisor for my Master of Arts in Writing Editing and Publishing read it.

‘This is really good writing. You should consider expanding it into a memoir.’

Continue reading “Accepted: Crumbs To Canary Wharf”