Living with bipolar can be a long and lonely journey. The only people who really understand us are other people with the condition, our fellow travellers.

I will never forget my first experience of going to a Manic Depression Fellowship (MDF), as the charity was then called, self-help group, as they were then called, about 30 years ago. I was an undergraduate at Bristol University, not long on lithium, after the illness first abruptly crashed into my world.

Kind, decent people, bound together by this extraordinary and terrible illness, helping each other. I vividly remember an older gentleman saying he’d only found effective treatment recently, having switched to a new medication in his late 60s.

I’d not long been to the annual conference of the MDF. I’d heard from the leading medical experts of the time. But to be honest, they didn’t have a clue about the cause of the illness or effective treatment – and there were certainly no miracle cures around the corner.

Sharing experiences over tea and biscuits

After a decade of struggling to live a normal life, I started going to the group meetings in Ealing in my 30s and went on to help run the group for nearly a decade. It was there I was first able to talk freely about my more bizarre symptoms, such as religious delusions – something I’d not felt able to share with friends or family.

It was a privilege to be able to share my experiences and support others over tea and biscuits. I was also a trustee and then Chair of trustees for several years.

Meeting online

In more recent years post pandemic, I joined some Zoom-based meetings – what a great enabling tool to bring people together. I met several people who were living well with the condition. But I watched in sadness, hearing some young people recounting similar experiences to mine, decades on, again and again. Some things have changed very little for us.

Everyone’s talking about ‘mental health’

The cultural context we live in has, however, changed dramatically in some ways. Stigma and discrimination were profound and pervasive when I fell ill at 19. Now, you can no longer be fired simply for having a mental illness thanks to the Equality Act from the Tony Blair government.

Today, with greater awareness of mental health, everyone seems to talk endlessly about it. It’s a bitter irony that it seems those of us afflicted by severe mental illness – as opposed to ‘mental health’ – seem more forgotten than ever. Certainly, watching the news, listening to the radio, consuming social media, we are mostly absent from public debate.

Helping people understand

Why is this? Without windows into each other’s souls, people simply cannot begin to imagine what the experience of living with this brain disorder is truly like. In my view, there are few experiences in life, if you’re equipped with a ‘normal’ working brain, as truly terrible as the mental torture many of us experience.

Our brains – and the feelings they control – operate way beyond the normal boundaries of human emotion, creating for us a grossly distorted emotional, behavioural and cognitive reality. If bipolar only could somehow be experienced through a VDR headset by the general population, we would see an overnight transformation in understanding as the horrors dawned on people.

So, what does the future hold?

Science has been quietly marching along over the last three decades, helped by genome studies, big data, brain imaging and a general leap forward in our understanding of how the brain works.

My life, as I turn 50, has been changed beyond recognition by this research. Three years ago I was prescribed an experimental drug, a calcium channel blocker called nimodipine. I’d suffered from relentless ultra-rapid cycling – 10 days up, 10 days down – all my life. Thanks to this drug, I now live almost entirely free of symptoms. Three years on, I still have to pinch myself I’m not dreaming.

I do not want to raise false hope. Nimodipine isn’t suitable for everyone, seemingly only highly effectively for a very small number of bipolar patients with rapid cycling.

The urgent need for more research

It is a question of when – and not if – we get there. But progress is slow. In 2022, Government invested £76m in research into brain health – dementia and mental health – out of total funding of £800 million for biomedical research across England. Not a big slice of the pie.

And although bipolar accounts for 17% of the total burden of disease for mental illness, the condition only gets only 1.5% of the research funding.

In other words, mental health research is still not getting the investment it needs to get the breakthroughs we need. Ground-breaking research has transformed my life. I think everyone with bipolar deserves the same.

Last updated: 20 February 2023