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Bipolar disorder: why we need to keep talking about it after the headlines fade

Photo credit: Mike Coppola - Getty Images
Photo credit: Mike Coppola - Getty Images

From Harper's BAZAAR

A couple of times a year, without fail, bipolar disorder makes the headlines, usually when a celebrity talks about their diagnosis. In the last few years, stars including Mariah Carey, Demi Levato, Russell Brand, Catherine Zeta-Jones, Selena Gomez and the late Carrie Fisher have all shared their stories.

In recent weeks, we’ve also heard from Kim Kardashian-West, who posted a heartfelt Instagram post about the reality of living with a loved one with bipolar, in her case, her husband, rapper and Yeezy founder, Kanye West.

Her statement was prompted by the launch of Kanye’s controversial presidential bid. It was, as has now been widely covered, delivered during a manic episode, a symptom of his bipolar disorder with which he was diagnosed in 2018. Next came his erratic, much-publicised on-stage behaviour. Headlines speculated that it was a publicity stunt to promote his new album, but thankfully those were drowned out by concerns for his welfare. There were more tweets, now deleted, involving his family, including wife Kim Kardashian.

Then Kim broke her silence, called for "compassion and empathy" towards her husband's bipolar disorder. In a lengthy, personal statement shared on her Instagram Stories, the reality television star and businesswoman said she felt compelled to comment because of "the stigma and misconceptions about mental health".

Photo credit: Instagram
Photo credit: Instagram

In the couple of weeks since, writers like me with ‘lived experience’ – I was diagnosed with bipolar II in late 2017 – have created articles to try and convey nuance. Our stories are on borrowed time; they’ll soon disappear until the next awareness day or when there’s another celebrity meltdown.

We need to keep the conversation going all-year-round. Mood disorders affect so many of us, but are very often misunderstood: the charity Bipolar UK reports that around three million people in the UK have bipolar. That is roughly one in fifty people, and recent research suggests as many as five per cent of us are on the bipolar spectrum. The chances are, someone you know is living with it, but how much do you know about it? Let’s face it, the grinding day-to-day reality of living with serious mental illness is not as palatable when you take away the A-list element.

But reading Kim’s heartfelt, eloquent Instagram post, it’s clear there are some universal truths about living with bipolar that all the money in the world – the couple’s net worth is estimated to by $4.2bn – can’t solve. But there is also much to say that isn’t universal – and how at the intersections of race, gender, age, poverty and sexuality – experiences can be wildly different. This is what I’d love people to know:

There’s a huge bipolar spectrum and everyone’s experience is unique to them

If you take one thing away from Kim’s post, make it this: “Anyone who has this [bipolar] or has a loved one in their life who does, knows how incredibly complicated and painful it is to understand.” Complicated is right. I’d never heard of bipolar II before I got my diagnosis and nor had anyone I knew. Most resources (Bipolar UK, Mind and Rethink are all sites to bookmark) will list three broad classifications: bipolar I, where sufferers experience mania (at least one episode, lasting longer than a week) and also periods of depression (though not always). In bipolar II, the highs are less extreme. Instead of full-blown mania, you get hypomania; periods of elevated mood that are less severe than in bipolar I, but can still be debilitating. The lows are just as severe.

There is also Cyclothymia, where you have the depressive and hypomanic episodes but the symptoms are milder. Then there are other subcategories if your condition doesn’t fit within those distinctions. To complicate matters, bipolar often exists alongside other mental health conditions, such as anxiety disorder, personality disorders and ADHD. Gender can also play a role: research shows that women tend to have more depressive and fewer manic episodes and are more likely to have bipolar II (tick). They also appear to be more prone than men to rapid-cycling.

Photo credit: Vera Anderson - Getty Images
Photo credit: Vera Anderson - Getty Images

Causes involve “a combination of factors”. Subtext: we don’t know. Genetic factors, brain chemical imbalance and environmental factors are all cited. Oh yes, and there’s no cure. But it can be managed. It’s generally accepted that treatment should be a combination of medication and therapy, though not everyone – Kim said in an interview with Vogue last year that Kanye doesn’t take his medication “because it just changes who he is”. Different people can react differently to the same medications and what works for some might not work for another: in short, it’s a tricky beast.

The symptoms can be hard to pin down

To state the obvious: at the top end of the spectrum – severe mania – the symptoms, such as paranoia, delusions, or hearing voices are easier to spot. In mania without psychosis, the narrative commonly focusses on the more overt, filmic symptoms – seeming euphoric with huge self-confidence; not sleeping; partaking in risky behaviour like casual sex or gambling.

When it comes to hypomania, things are trickier. Suggested symptoms include being easily distracted, very talkative, full of new ideas, indulging in excessive spending or getting easily irritated or agitated. Those are all behaviours that apply to me, that I’d have said that they were characteristics of my personality.

It’s only now that I can identify that some of my behaviour could have been influenced by hypomania; like when I made a decision one New Year’s Eve in the midst of a depressive episode to move to Australia overnight. Or when I decided I might quit journalism and start my own fashion business, with no experience in retail. I didn’t do either of those things, but I failed to spot the issues at the time partly because they were vaguely plausible. That, and I saw what I wanted to see.

Photo credit: Getty Images
Photo credit: Getty Images

At the other end of the spectrum is the depression. Those symptoms are more widely understood – taking no enjoyment in things you used to (not feeling like going shopping to my favourite local boutiques is actually one of my tells, which I suspect negates my narrative that I don’t spend excessively); low self-esteem; insomnia but with the constant urge to sleep. Usually, it’s the depression not the mania that gets people through the door of the GP. After all, who goes to the doctors when they feel happy, talkative and buzzing with ideas? Particularly when that’s what they’ve always thought that was their normal M.O.

Diagnosis takes far too long

The average time for seeking help for a mental health issue to a correct bipolar diagnosis is estimated as nine years, with a misdiagnosis an average of 3.5 times. It’s exhausting for everyone involved. It’s also dangerous: Bipolar increases an individual’s risk of suicide by up to 20 times. From seeing a GP with depression in 2013 and being prescribed antidepressants, to my bipolar II diagnosis in December 2017, I experienced five periods of severe depression, each lasting around two months, and stretching the elastic band holding me together until it was barely a thread.

Photo credit: Michael Ochs Archives - Getty Images
Photo credit: Michael Ochs Archives - Getty Images

During each low, I’d go back to my psychiatrist – after being told there was a five week wait for an assessment, I’d got a private appointment, after which I was assigned a (brilliant) psychologist, who I still see today. In my appointments with both, I’d only talk about the lows. The result: the antidepressants would be upped. After the now familiar two months of awful side effects: constant nausea, insomnia and anxiety, the switch would flick and the lights would come on (clichéd I know, but it is the most apt metaphor) and the world would be bright again; often too bright but I didn’t notice, all I cared about was that the fog had lifted. My most memorable switch flick was on the third day of Glastonbury 2014. I’d dragged myself there three weeks into a deep depression, my mind feeling as stodgy as the mud we were wading through. Then on the third day something changed, and my surroundings crystallised. The bands! The people! The mud! The food! The firsts after the fog are always so sweet. I still have a soft spot for macaroni cheese as it was the first thing I ate when my appetite came back, bringing a whole new meaning to comfort food.

My diagnosis came when I got a new psychiatrist (ironically, one of the original recommendations by my GP). Sitting in her Marylebone practice in a room full of expensive silk faux flowers, shelves adorned with cards from patients who’d come out the otherside side, she asked me my mood, what it was normally like and what it had been. She asked me whether I’d ever had a period of mania. I told her about Australia. She then asked if she could speak to my mum on the phone, asking her what I was like between the episodes of depression and how I behaved. I got my diagnosis - bipolar II – and was prescribed a mood stabiliser. I had to stay on the anti-depressants, so as not to rock the boat given how it had affected me in the past.

Two-and-a-half years on, I feel, well, like me. When the mood stabiliser began to take effect and the depression lifted (and with the help of my psychiatrist and a brilliant mentor) I had the confidence to leave my job that had become toxic in which I’d become combative; fighting the good fight, I thought, skirting the fine line between outspokenness and gross-misconduct is probably the reality.

Bipolar treatment needs to be better

My story comes from a position of extreme privilege: I had all private treatment bar that first appointment as my parents had the means to help me. I’m from a demographic – white, middle-class, university educated, employed – where talking about mental health is part of everyday conversations (less so mental illness, but hey, we’re getting there).

I know my experience is just one tiny, ridiculously unrepresentative story along the spectrum, so last year I started learning. As part of my research into the condition for a series of articles, with the help of Bipolar UK, I put a call out to hear from those of all ages on the bipolar spectrum. I spoke to sufferers who told me of similar tales of repeat misdiagnosis (clinical depression being the most common), but being bounced around secondary care services and having to retell their story over and over to new teams, just to get the care that they’d already fought for.

Photo credit: David Redfern
Photo credit: David Redfern

Some would wait months for talking therapy only to find it ineffectual for their needs or be left bedridden from side-effects of changing medications.

At the crux of it, of course, is money: frontline services are over-stretched and underfunded and GPs often, understandably, have inadequate specialist training. NICE guidelines suggest key questions to pose to those presenting with depression to detect signs of bipolar disorder – asking about “previous periods of overactive or disinhibited behaviour”– but implementation of these is patchy at best – no one I spoke to said they’d been asked them.

But even getting through the door of the GP can be tough, particularly in communities where mental health is less talked about or accepted as a medical condition. Research from Mind found that one in four people from minority ethnic backgrounds who have struggled with their mental health, keep their issues to themselves, believing they don't know anyone that would understand. Of course, that statistic belies the nuances between different communities in which, for some, responses and obfuscation can be tied up in ideas that admitting to mental illness brings shame on the community. As a starting point, people need to see psychiatrists and therapists who look like them and understand the intricacies of their worlds. Black Minds Matter was born out of the recent Black Lives Matter movement, and aims to fund free Black therapists for anyone who needs them - according to government statistics Black people are four times more likely to be detained under the Mental Health Act than white people, but much less likely receive treatment. The factors are also exacerbated by poverty, age and gender.

The stigma is real

While stigma varies hugely between communities, it is still prevalent everywhere - particularly in the workplace. According to Bipolar UK, 90 per cent of people with bipolar who took a recent survey had told their employer about their condition, but 24 per cent of them regretted making that decision. Although I work in a very supportive company that has a very active mental health support team, and I have a very compassionate manager, I didn’t disclose my diagnosis until after my six-month probation period had ended.

I said that I didn’t want my performance at work to be judged through the lens of anything, my manager said that never would be. Actually, the catalyst was going to a support group and hearing more than half in the room said that they felt they had lost jobs as a result of behaviour caused by their bipolar. Legally, if you don’t disclose your condition and felt you had been treated unfairly, you would not have a legal case for constructive dismissal or discrimination.

Elsewhere in my life, I’m trying to be upfront about my diagnosis, including with relationships. I’m determined to tell someone when it comes up naturally, rather than mask it. Bipolar isn’t who I am, but it is part of me. It has shaped my life and will continue to do so. If I don’t confront the stigma, how can I expect others to?

For many, many reasons, I can’t pretend to know what the Kardashian-Wests are going through, but the more those of us with the illness or those supporting a loved one with bipolar can follow Kim’s lead and take people behind the headlines, the better.

For more advice and information on bipolar disorder visit bipolaruk.org.


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