Nobody I’ve ever been locked up with in a psychiatric hospital felt ‘proud’ of their illnesses | Eleanor de Jong

In the 12 years since I was diagnosed as manic depressive – now commonly referred to as bipolar type one – mental illness has come roaring out of the woods.

Now, it’s hard to get through a month without a mental health awareness campaign rearing its well-meaning head.

In 2013 I was advised by psychiatrists to withhold my diagnosis from employers, and be judicious with everyone else, as understanding of mental illness was limited in the public sphere and highly stigmatised.

This was, at the time, absolutely the right advice.

But in the last decade I have noticed a shift in how openly mental health is discussed; how many people are willing to claim psychiatric disorders as their own or armchair-diagnose those around them.

But the sickest people I’ve ever known – myself included – have had almost no part in this opening up, as if we’re suffering from a different condition altogether.

Nobody I’ve ever been locked up with in a psychiatric hospital felt accepting or “proud” of their illnesses. We were never asked to participate in a mental health awareness campaign, though once, as a special treat, we were taken to a very isolated, deserted beach and allowed to run free for half an hour.

It was so glorious.

We certainly never called our illnesses or symptoms “superpowers”. If we had, no doubt our anti-psychotics would have been increased or our courtyard privileges quashed.

The pointy end of mental illness is not photogenic or particularly quotable. It’s desperate and it’s sad, and all people want is to get off the ward and live a normal life. So I find it hard to understand how that level of illness has become entwined with mindfulness, mental-health days and self-care.

What I sometimes see now is normal emotional pain and hardship – grief, heartbreak, stress – becoming medicalised. I also hear the widespread adoption of psychiatric terminology to describe common adverse human experiences.

This is concerning, as it trivialises the experiences of those battling severe mental disorders and misrepresents how debilitating these illnesses truly are.

It’s a climate where sadness can be described as “depression”, stress or nerves as “anxiety” and poor decision-making, overspending or excitement as “mania”.

I like truth, especially in language. And using psychiatric terms to describe common human experiences is simply not truthful.

As a western culture we’ve become more accepting of mood variation, burnout and “a touch of OCD”. This is palatable to us and our sympathies.

But god forbid if you see or hear or smell or feel things that aren’t there.

Research published by Cambridge University Press last year found that discrimination and stigma against those living with schizophrenia actually increased over a 30-year-period, with fewer people wanting to live with or have a co-worker with this diagnosis than in 1990. Other studies from around the globe have found plateaux or increases in stigma against those with severe mental illnesses, especially illnesses with psychotic features.

In Losing Our Minds, UK psychologist Lucy Foulkes writes that mental health awareness, among the general population, has gone from “famine to feast” within a decade, and she is concerned that the quality of knowledge people are receiving about true mental illness is poor or simply wrong.

“Everything we might think of as a ‘symptom’ of mental disorder – worry, low mood, binge-eating, delusions – actually exists on a continuum throughout the population,” she writes. “The thoughts, feelings and behaviours that appear temporarily as a natural response to hardship and stress – like when we’re heartbroken – exactly mimic those that, should they persist, are defining features of mental disorders.”

“Bipolar”, my own diagnosis, is a word that has well and truly entered the general fray.

As a writer, I am no doubt more sensitive to language misuse than most but I feel deeply uncomfortable when the word “bipolar” is used so offhandly, usually to indicate indecision, whimsy or whiplash moods. (Katy Perry, I’m looking at you.)

Bipolar is an extremely destructive disease, and when people with moody personalities or unruly personal lives claim it as their own, the meaning and pain behind this diagnosis slowly erodes.

Manic depression is not a phase, or an off month or even a susceptibility to mood instability. It’s lifelong, incurable and the best you can hope for is managing your symptoms and keeping the space between episodes as long as possible.

The majority of people with severe bipolar do not lead glamorous, highly creative lives and it’s certainly not a synonym for “interesting”. Indeed, many if not most sufferers are plagued by patchy employment records, high divorce rates, substance misuse and an expected lifespan of eight to 12 years lower than the general population.

So it’s really no small thing to start describing yourself, or someone else, as “so bipolar”.

But in the current culture, which I view as a kind of frantic over-awareness, I sometimes fall into the trap myself.

After multiple hospitalisations and more than a decade of sustained psychiatric intervention, I monitor myself constantly for mania, hypomania, psychosis and depression.

Some of this is sensible and falls within the bounds of “psycho-education”, a key part of understanding your illness and learning to check for warning signs of an episode brewing.

But some of it is hypervigilance – medicalising myself.

Earlier in the year, my mood was low for months following a home invasion and the sudden death of a family friend. Every day I wondered – am I becoming depressed again?

Depression for me means hallucinating that glinting daggers are projected on to the sides of buildings and billboards, and pressing into my skin. I will continually check my pulse because I become convinced that I have died and no one has noticed, and now goblins are growing in my rotting chest cavity and trying to crawl out of my mouth.

Then, a voice will start whispering macabre instructions.

It’s a thing of terror, to be avoided at all costs.

I told my psychiatrist how I was feeling. She probed a little, aware I’d had a rough start to the year. “How are you sleeping?” Fairly OK, considering. “How are you eating?” Heartily! I said.

And I am still enjoying things, I volunteered, chattily. My baby is so funny. I like watching the news with a glass of red. I’ve read all of Claire Keegan and I’ve been taking the dogs out on the salt marsh at sunset.

She didn’t have to say much after that because I’d answered the question for myself; not depressed. Experiencing a hard patch? Sure. Sick? Not this time.

Others have described a formal diagnosis as a relief but I never felt that way. Bipolar did, and continues to, feel like a life sentence. In terms of the adverse life experiences behind and ahead of me – it is.

So it’s heartening to have a diagnosis and also just be sad sometimes, like everyone else. To treat yourself gently, to know it will pass.

Because it’s tedious how genuinely serious complex mental health problems are.

You can’t laugh off or underplay psychosis and suicidal ideation. And it’s hard to minimise the padded room, the padded gown and the voices that no one else can hear.

In the life of the mind, that’s as bad as it gets.

So count yourself lucky if your sadness is even slightly soothed by a hot bath and a really good book (or run, or swim or Netflix show). Because I promise you, that’s so much simpler and more palatable than the medical alternative.

It can be a huge relief to name sadness or stress for what it is – uncomfortable, yucky, I don’t want it! – rather than wading into the quagmire of whether or not it’s an illness.

It’s fine to ask for help if you’re struggling; great even, to be encouraged.

I’d pay every single dollar in my bank account to not have bipolar. But that doesn’t mean I think it’s a stand-in for dysfunction. Your life going a bit off the rails shouldn’t have you reaching for psychiatric terminology or claiming a diagnosis or wondering what your ex “has” to make him such a dickhead.

When you do this, it undermines the lives of those who are stuck with these illnesses, and have to struggle, pretty much every day, to survive them.

Because for us it’s not a phase or a bad patch. You do get better but then you usually get worse again. For us, it’s forever.

Eleanor de Jong is the former New Zealand correspondent for the Guardian. She now lives and works in the Kimberley town of Derby, Western Australia