Losing My Senses

I have never been so grateful to smell cat shit in my life.

But let’s add some context for that sentence.

A few weeks ago, I went out for a friend’s birthday dinner in a small, busy restaurant. Indoors, noisy. There was a lot of leaning in and speaking loudly to hear and be heard. Within a couple of hours, tongue bitten from sitting across from someone who told me they didn’t believe Covid vaccinations had been sufficiently tested for safety, I was ready for home.

Three days later tiny terrorists held me hostage in my room. I was tethered to my bed by sticky tissues and vicious spike proteins digging in to my respiratory tract. Sick, but not my usual sort of sick. I cancelled plans for the week ahead as Covid leapt through the family. And I marvelled at how easy it felt compared to cancelling things for a Bipolar hospital admission. In 2023 everyone can relate to Covid cancellations.

Prior to contracting Covid, the things I was most concerned about, should I be infected, were likely to be things of no concern to most people. I am grateful I don’t live with any type of immunocompromise or chronic respiratory condition. Neither does anyone in my family. And yet I have continued to wear a mask to the shops without caring what people think.

Because I am vulnerable to collateral Covid damage.

Anything that potentially interferes with my sleep or ability to exercise increases my risk of a Bipolar episode. Covid does both. Then there is long Covid. The stress of living with this nasty reality would skyrocket my risk of multiple Bipolar episodes. And then there is losing my senses of taste and smell. As someone who begins to feel depressed if these senses diminish with a cold, the prospect of potentially losing them long term or permanently was horrifying.

I imagine everyone values their senses differently. When it comes to reasons to breathe, I am someone for whom smelling is as important as oxygenation. I don’t mean I am someone who just appreciates nice perfume and the smell of freshly ground coffee – although I do.

I am also someone who knows the smell of my husband’s sternal notch, the dip between his collar bones at the base of his throat. It is an olfactory hug, a smell I could pick out of a line-up of other sternal notches.

I know the softest fur behind my kittens’ ears smells of butter and air. The smell of garlic sizzling in olive oil or a chocolate cake just ready to be taken out of the oven are pure dopamine hits for me.

So, when Covid blindfolded my sense of smell on day five, and in doing so kidnapped one of my greatest sources of joy and information, I panicked…enough to google how long this was likely to last. It can be as little as five days…but sometimes this black out lasts for 6-12 months or is permanent.

This loss of smell was not like the kind I’ve experienced with a head cold. It wasn’t associated with nasal congestion. My nose was clear and breathing air in a world apparently devoid of all scents and odours. I realised quickly that aside from the discombobulation and depression of living with no nose, there were practical difficulties. Sniffing potentially spoilt milk – nothing. Toast burning to charcoal – nothing. A rotting potato decomposing in a black pool of noxious liquid at the back of the potato storage drawer – totally undetected.

Without smell to accompany it, my sense of taste was reduced to only being able to differentiate sweet from salty foods.

I began to bargain in my head. Which of my other senses would I give up in exchange for my sense of smell? Impossible. I don’t want to lose any of my senses.

Thankfully, for me, the blindfold loosened within ten days. I began to smell around the edges of the world again. Strong smells returned intermittently and then faded away again. The fading times lessened. I discovered the foul stench of the decomposing potato that had been reverse air freshening the kitchen for at least a week. Cat shit re-entered my nasal vocabulary. And with time so have the subtleties of air and butter on kitten fur,

As for the Bipolar risk factors that accompany my visit from Covid, I’ll have to wait and see. The last couple of months have carried other stressors with them too. From experience, my Bipolar episodes tend to sit back patiently while the risk factors peak and the stress unfolds, and then set in as a special treat once things settle down.

So I am moving carefully through the world with my fingers crossed, while I enjoy being back in the world of the smelling.

You may also like to check out

Covid Lockdown In A Psychiatric Hospital

When Covid-19 And Bipolar Recovery Collide With Unexpected Results

Mental Illness And Humour

I don’t joke about mental illness.

And when anyone around me does, even if it’s about their own experience, I feel as though I am trapped in a cube of thick glass, a scream frozen in my mouth.

I’ve wanted to write about why I feel this way for a long time but have discarded the topic again and again. I know many people use humour to help them live with their mental illness. But I’ll come back to that.

Onto my reasons for not being able to take these jokes.

At its simplest, I don’t believe we have eradicated sufficient stigma to safely joke about what living with a mental illness means.

It might look like we are making progress, but it’s an illusion.

Sure, our baby steps skim the surface of the most palatable mental illnesses. Anxiety that resolves with mindfulness, or depression that is sorted with some exercise and early morning sun exposure.

The ‘brave’ disclosure of taking (a respectably small amount of) medication for anxiety or depression, has shed a lot of stigma in recent years.

But dive below the surface and things get uncomfortable for many. Think psychosis, psychiatric hospital admissions, Electroconvulsive Therapy etc.). The world still largely deals with this discomfort as though it is a teenager trapped in a car with a parent talking sex education. Sulky silence, avoiding eye contact, and wisecracks.

Then there is the constant energy sap of explaining.

Let’s take some experiences I’ve had recently.

First came the media requests for my opinion on whether Kanye West’s antisemitic hate speech, racism, and misogyny were caused by his bipolar disorder. You can find my responses here:

https://www.mamamia.com.au/mental-illness-can-happen-to-anyone/

https://www.mamamia.com.au/podcasts/the-quicky/kanye-bipolar

https://www.sbs.com.au/news/the-feed/article/kanye-west-is-in-the-news-for-the-wrong-reasons-how-do-we-include-his-bipolar-disorder-in-the-conversation/fuocnelxj

Suffice to say I wasn’t laughing as I wrote and spoke.

Next it was a question at the end of the Q and A for one of my library author talks about my memoir, Abductions From My Beautiful Life.

‘Hi, I’ve read your book. I noticed there is no violence in it. Is that true?’

I asked, ‘What do you mean?’

‘It’s just that whenever you read about people with mental illness, they are always violent. So, I was surprised not to find this in your book.’

An ache swamped my chest. Everyone in the room waited for my answer to this jagged question.

I explained that the media often stigmatises mental illness by reporting violent outcomes devoid of context or humanity. I explained that, yes violence occurs, but the mentally ill are more likely to be victims not perpetrators. I explained that when someone’s violence is rooted in their mental illness it is too often not a case of them slipping through the cracks. It’s a case of there being more cracks than solid ground.

And that no I have not edited any violence from my book. Aside from the violence psychosis visited on my brain, there wasn’t any.

I was thanked for my explanation.

But it shouldn’t take me or anyone else to explain that most people who live with severe mental illness are not violent, antisemitic, misogynistic, racists.

While I am well, I choose to explain it again and again and again, because silence leaves a space for the public to draw their own conclusions when Kanye behaves badly, or poor journalism demonises the vulnerable. But the constant explaining leaves me with no energy to laugh about any of it.

When I can, I push back against memes and social media posts that joke about my worst nightmares, or even just sprinkle stigmatising language around like poison disguised as fairy dust. ‘Psycho’ ‘nuthouse’ ‘mental’…

When I point out these ‘errors’ in the comments sections I am often told I can’t take a joke’. I’m told to ‘get a life’ ‘lighten up’, ‘fuck off’, or that ‘it’s just a meme’.

And when I am not well enough to push back and explain, the world continues to fill in the blanks, and papers over its discomfort with another meme.

So, does anyone get to joke about mental illness?

In my opinion:

If humour surrounding mental illness is part of a private conversation between people with lived experience who share enough history to gauge what is appropriate, I have no problem with it.

If you live with a mental illness and find being humorous about your experience is helpful to your recovery and maintaining stability, go ahead…

But have the grace to acknowledge you don’t represent everyone. Consider whether your jokes hide self-stigma. And if you choose to share your humour publicly, ask yourself if the benefits to you outweigh the risk of potentially generating more stigma.

Also – if you share jokes or memes online that perpetuate negative stereotypes around mental illness – don’t tell me to ‘lighten up’ when I call them out.

Lastly – If you have no lived experience of mental illness, don’t joke about it.

As long as the status quo assumes that the perpetration of violence and mental illness go hand in hand, we are still lightyears away from a point when everyone can laugh safely.

You may also like to check out:

Mind Your Language Katy Perry

Tokenism In Mental Health Awareness

Reset

The virtual shouting stops on the boat. My compulsion to check the noise evaporates with the loss of signal, the lack of Wi-Fi.  Once the grey green water of the harbour becomes ocean, the colour of a newborn’s eyes. A colour that holds the answers to everything.

When we arrive two hours later the blue changes again. Transparent and vibrant like blue heaven jelly. A giant bowl of it. Viewed from above the sharks and turtles and rays could be gummi lollies, if they weren’t moving. If they hadn’t been moving through these waters for thousands of years. Long before we came with all the awkward gear that allows us to breathe under water.

One of the first days. On the five-minute boat trip to the outer reef. We squint. It looks like a flipper, just piercing the glassy water in the distance. A dolphin? We draw closer. Engine cut. And there – barely below the surface, four metres of magnificence, mouth parts welcoming plankton. Silver, grey, black, and white – a giant silk handkerchief shimmering in the sun, billowing on the tide. A manta ray, gracing us with a moment of awe.

On another day it is dolphins, close enough to see their skin shining in the sunlight with each arc above the water.

Snorkelling off the beach. Impossibly sleek reef sharks glide close. Black and white tipped. Small eyed. Large nosed. Clown fish dart in and out of their protective anemones. Symbiosis. Ears submerged I hear parrot fish crunching coral. Their jewel tones on steroids and perfect fin flaps almost make even me believe in a god.

I hover clumsily next to unperturbed turtles. They breakfast while my breath moves noisily through my snorkel.  Blank black eyes focussed on each mouthful of sea grass or coral. The patterns on their heads and shells are intricate as fingerprints. Neck skin concertinaed in wrinkles. And when one glides off unhurried, I flap along beside her, eager to witness her surface for breath.

Each evening the birds return to the island. Hundreds and hundreds fly in on the sunset as it paints a golden red carpet on the water. I could walk into forever on it. In thirty seconds, a minute at most, as a reminder that the earth still turns, the last of the sun slips into the sea like a burning coin.

In between snorkels I read. Paper and ink books. Several.

For a week, whenever I close my eyes, fish, coral, sea stars, sea cucumbers, velvety clam lips, swirling fish, play on the inside of my eyelids. I didn’t take a camera into the water with me this time. Too distracting. I take my eyelid footage with me instead.

The release from screen suction untethers me from the endless frenetic opinions and largely meaningless activity social media hurls into my brain. This passively acquired ‘content’ vacuums up my time and energy and adds nothing to my life.

I arrive home. Feelings mixed. I could have stayed and stayed. I am also relieved. The tension of possibly forgetting either or both of the two separately packed sets of medication I travel with releases. The fear of my Bipolar disorder wrecking our holiday evaporates. Because it didn’t happen. This time. It doesn’t have a good track record for respecting holidays.

I love being removed from the rest of the world. But there is a flip side. Travelling somewhere remote with no access to doctors, pharmacists and no means of contacting them, means I travel with an undercurrent of fear. The potential of having especially a psychotic episode when cut off from all of the support I need to treat it, fills me with horror.

My re-entry into signal, Wi-Fi, and responsibilities is an opportunity for a reset. Pruning and muting the unnecessary followings. Being a bit more mindful about the world my phone dumps into my head when I pick it up. Reading paper and ink books at bedtime…

And when things get hectic again – because they will – I will dip into one of my favourite pieces of footage from the time away:

On the last day. In the water. Just off the edge of the reef. Magic appears with the majestic passage of three mantas below us. Close enough for sunlight to make them shine and glisten with each leisurely flap of their wings. Impossible for anything else to exist in this bubble of time. They gradually dissolve into the deep and leave behind joy, a lifelong memory, and an elated expression on my daughter’s face.

Don’t Bright Side Me

I don’t have 800 articulate words tied up in a neat bright-side bow in me today. So this instagram post it is. For context I am now into into my third week in hospital. Some of the manic symptoms are settling. The caption accompanying this instagram post is:

The symptoms are horrible, but it is never just about the symptoms. The symptoms and connotations severe mental illness carry with it. leave me staring at the rubble of my identity during and in the aftermath of every episode. It is never just about the symptoms…

#bipolar1disorder #vulnerability #psychiatrichospital #mentalillness #stigma #identityloss #thoughtfood #abductionsfrommybeautifullife

Other reading:

Visiting Someone In A Psychiatric Hospital?

From Holiday To Hospital In Under A Month

A Sinister Manicure

The inky shine of my DIY manicure is pathognomonic of a manic episode.

As is my daily step count doubling – not intentionally, not because of some romanticised elation of mania, but because my short term memory is so poor I have been constantly retracing my steps, wandering from room to room driven by a purpose that evaporates as soon as I arrive where I think I’m meant to be. Constantly. Not just the odd moment of forgetfulness everyone encounters.

My inner life speeds up. Thoughts, speech.  When I glance at my watch it is always half an hour earlier than I anticipate it will be.

I scrunch up, frustrated at the snail’s pace of the rest of the world. 

In the early years of this illness I didn’t register that scrunching, and would inflict bruises and scratches  on myself in these frustrated moments. A day or two later, I’d stare at the violent discolouration and scabs on my skin, and be completely unable to recall how they got there.

The pressure of mania feels like my own adaptation of the fairy tale ‘the red shoes’ by Hans Christian Andersen. Instead of being cursed to dance until I die or my feet are cut off, I feel cursed to keep moving and doing. The further it drags me into its clutches the harder it becomes to stop and rest. Ironically exhaustion fuels mania. At its worst I am lucky to get an hour or two with a generous handful of sedating antipsychotics, sleeping tablets, anxiolytics, and sedating antidepressants on board.

Restoring sleep helps chase mania away. To be clear (for me) insomnia borne of mania is not something that can be alleviated with chamomile tea, lavender oil, or good sleep hygiene. I need the handfuls of medication. I need an environment conducive not just to rest, but an environment so controlled it feels like a bandage around my brain when the rest of the world acts like sandpaper on it.

You may say: ‘Just stop doing stuff and rest at home.’

That would be like me saying to you the next time you come down with gastro: ‘Just stop vomiting.’

As for my handfuls of heavy duty psychiatric medications – I learnt a long time ago I experience minimal side effects from most of them. I learnt that, in the midst of a manic vortex, those medications don’t cure me, but they make the sand-papered-brain feeling bearable. I learnt that the old wives tale of psychiatric medications stealing your creativity is bullshit for me.

My creativity is devoured by my symptoms of Bipolar 1 Disorder. I expect this post won’t be as concise as I’d like. Maybe a bit clunky. There may be typos that escape me because I don’t have the capacity to run it through my usual editing loops. But one thing is certain: If I were currently unmedicated, this piece of writing either wouldn’t exist, or it would be almost incomprehensible.

And that is why I am in hospital, swallowing medication by the handful and painting my nails midnight blue.

You may also be interested in reading these posts:

Misunderstood Mania

Psychiatric Medication And Stigma

A Lack Of Cats

Our kittens, Lily and Lucy, came before the children. Quiet purrers and beautiful blinkers. Velvet furred links to another lifetime. They came before my Bipolar Disorder.

In my chaotic first few months of motherhood, on a visit home from the psychiatric hospital with my baby, the cats were not impressed. The baby startled and squawked in her rocker, and the cats stalked around the noise and movement, with twitching tails and wide suspicious eyes.

Their suspicion was justified about three years later when that baby – now a toddler – ‘posted’ Lucy through my bedroom louvres out into the garden via a drop of several metres. When I found her meowing on the lawn Lucy was unimpressed, but thankfully uninjured. I sat my toddler down for a talk about treating pets kindly and keeping our indoor cats indoors.

The Easter long weekend the year the cats were eight years old I was mid prep for a family lunch when my now seven-year-old daughter called:

‘Mum, there’s vomit in the cat’s room.’

I abandoned the sprawl of recipe books and followed my daughter’s voice to clarify whose vomit it was. There were patches of it dotting the floor, and the smell of partly digested cat biscuits and bile hung in the air. Cat vomit. And Lily looked flat. I lifted her up and palpated her painful, tense abdomen.

A couple of days before, I had caught her chewing something, but she had shot away when I’d approached. By the time I’d caught her, her empty mouth had concerned me, but I decided to wait and see.

I’d waited and now I was seeing.

The time frame and signs were textbook for whatever she had probably swallowed being stuck somewhere in her gut now. She’d need surgery.

I rang around for a nurse who was free to help me, arranged to meet at the veterinary clinic we both worked at, and loaded a very unhappy Lily into the car.

The incision for an exploratory laparotomy is long. From the bottom end of the sternum to the pubic bone. The exploratory part is methodical. You start with the stomach and visually and manually examine your way down the lengths of intestines. As I worked my way down Lily’s normal looking gut I began to doubt my decision to go in without an X-ray.

And then there it was. A lump. I exteriorised it and exhaled, relieved. The affected intestine was inflamed but not perforated and confined to five centimetres. One simple incision to retrieve…a scrunched-up length of metallic gift-wrapping ribbon.

Lily recovered fully from her surgery, but both cats were mostly confined to their room and cat run, if unsupervised, after that. They were both string, hair tie and ribbon obsessed, and I could not guarantee a house free of these items with a seven and a four year old in the house.

My cat ladies grew into elderly and then old ladies. Of the two, Lucy was always more outgoing and friendly. Lily formed relationships on her own terms and was more skittish. But when we lost Lucy last year, Lily became cuddly.

My now fifteen-year-old daughter, grew into one of Lily’s favourite people. She brought her into her bed and hand fed her morsels of chicken, tuna, or steak. In return Lily was a quietly purring source of warmth, love, and comfort.

Two weeks ago Lily declined rapidly, looking all of her seventeen years, within twenty four hours. Suddenly her bones stood out. Her coat morphed from meticulously groomed to dull. She no longer looked like herself.

I took her to one of the large veterinary emergency centres, requested blood and urine tests, and waited with a deep aching knowledge. In the end she made the decision to let her go – not easy – but black and white. Her blood test results were disastrous. Kidney parameters and blood glucose levels through the roof. I’d have thought twice about tackling both of these issues in a cat half her age.

We gathered to stroke her soft head and thank her for being part of our family for so long. And I whispered my love into her beautiful ears as she slipped gently out of my life.

That night I sat next to the empty cat bed and sobbed my way past midnight.

Two weeks later, I still startle sharply when I enter the cats’ room and am met with absence.  

And when the grief hits my children in great stormy waves, I remind them that there is only one way to avoid this feeling, and that is never to have the love of a pet in your life.

You may also like to check out these:

Goodbye My Thought Food Cover Girl

Veterinary Work And Bipolar Disorder: A Podcast Interview

Our Vets Are Dying For Your Pets

Writing On A Tightrope

What is the thing that could unseat you from your life?

For me it is attempting to control things beyond my control. This urge originates in my DNA and is exacerbated by living with Bipolar 1 Disorder. When this illness sweeps in unannounced and for however long it pleases, it rips my sense of control apart. The rebuild is always hard work.

And while I have learnt to loosen my grip a little more each time I recover, control of the control issues is still a process in progress.  

My kryptonite is sick children.

Over the last six weeks, various illnesses, hospital admissions and a surgery between my two children have threatened to overwhelm my relatively well-honed CBT (Cognitive Behavioural Therapy) skills. Neither child was ever in acute danger, yet I battled the clench reflex of control. I loathe feeling as though I am not in the driver’s seat of my life. This time I was on a bumpy road trip I never consented to, delegated to a back seat with no seatbelts and poorly locking doors.

But something unexpected helped.

At the end of April, I started a five week online Creative Writing Course with the Australian Writers Centre. Three to four hours a week to cover course material and submit an assignment. No penalty for not submitting the assignment, other than missing out on feedback from the lecturer.

I completed two weeks without distractions before the illnesses descended.

I immediately indulged in some classic black and white thinking and catastrophising and thought I’d abandon the writing course. Thankfully CBT skills prevailed: Neither child was on life support, and doing some of the course would be better than doing nothing.

I decided to do the minimum I needed to submit an assignment each week. Surprise, surprise – the writing was a welcome relief from the stress of sick children. Spinning and shaping words into new work left me feeling more in control of my world. The gentle nudge of an assignment due, felt as though someone had handed me a balancing pole as I walked my tightrope.

We are (hopefully) through the worst (of the sicknesses) now. The course finished a couple of weeks ago. But I thought I’d share two of the creative writing assignments I submitted, for those who are interested. Both are a scene with a 200-word limit.

I hope you enjoy this foray into another branch of my writing life:

Assignment 1:

Anton pulled on his fur lined hat with the ear flaps, leather gloves, woollen scarf, and snow jacket. He collected his fishing rod and box and left for the lake just as dawn poked its pink fingers through the patchy clouds. Snow crunched like fine gravel under his boots and his breath came in clouds.

He loved the peace and solitude of ice fishing. Some winters the lake froze into a clear pane of glass, and you could see fish moving sluggishly under the ice. This winter, the ice had incorporated snow, until it was as opaque as wedding cake icing.

Anton had barely lowered his line into the ice hole and himself onto the bench when he felt it. Not the usual twitch of a fish, but a heaviness.

He reeled in his line and squinted.

Waterweeds.

His stiff fingers untangled the dark green filaments around his hook. The curtain of weeds hid something fleshy, something covered in blood vessels. It had a cord, like a length of blue wool dangling from its belly.

It had ten fingers and ten toes.

 A gasp shot from Anton’s mouth. His fingers trembled across his chest in the sign of the cross.

Assignment 2:

It’s 2022. I should be used to wearing a mask by now. And yet, I suddenly notice the itchy edges on my cheeks. My breath moves hot and thick and sour inside it. Outside the mask (for a sip of water) the dry air is laundered with disinfectant, hand sanitiser and soap.

The bedside chair is designed to exacerbate my sore back. All the other parents’ anxieties hum around us. My own worries are a fistful of wriggling worms trapped in my stomach.

Th attempts to jolly up this space with zoo animals on the curtains dividing each bay, and jungle scenes on random walls, have failed miserably. The fluorescent lights erase all beauty. Behind my son’s bed a multicoloured cluster of tubes and canisters, buttons and power points sit patiently waiting for the terrible moments when they are called to action.

My boy’s soft hand is invaded by a plastic tube, covered in gauze, and clutches ‘Scrat’ his tiny plush toy wombat. The nails-down-a-blackboard screech of a toddler in the next bay jerks me upright. My back spasms.

In this place time obeys different rules, and my heart in its chest full of quicksand keeps beating, somehow.

You may also like to check out:

The Well Times

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

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