Month: March 2022

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