I waited all through my twenties for bipolar diagnosis – it almost came too late

When Ceri Ashe was in her early twenties – ’21 or 22, after university’ – she went to the doctor to talk about her mental health.

Concerning symptoms had begun to spring up when she was in her late teens, and at 16 she had attempted to take her own life. She knew something was wrong, and knew she needed urgent help.

That help finally came when she was diagnosed with bipolar, a condition characterised by dramatic changes in mood. Without treatment, people with bipolar will wade through the darkest depths of depression, and soar through the most intense ecstasy. For Ceri, the moment she was told she was bipolar was the moment she understood why her mind worked the way it did.

But by the time the moment came, she was 29 years old.

Ceri, an actor and writer, had gone through almost 10 years of painful, dramatic up-and-down cycles before she learned why they were happening.

‘I wish I’d known about it when I was 21 at university,’ she said, ‘because that would have been life-changing for my twenties.’

Her experience is far from unusual. Research published earlier this week by charity Bipolar UK revealed that for people like Ceri who live in Wales, the average delay between first contact with health services and a diagnosis with bipolar was 11.9 years. For people across the UK, the average is 9.5 years.

It’s not just the label of bipolar, an explanation for past behaviour, at stake due to this delay. It also means a significant number of people – likely tens of thousands in Wales alone – are not able to access the medication that could change their future.

Part of the reason for the wait is the difficulty in diagnosing a condition like bipolar, which presents itself in two radically different ways.

‘People are very likely to try and get help when they’re in the depressed phase of their illness,’ said Professor Ian Jones, the director of the National Centre for Mental Health in Cardiff.

‘But when they’re in the manic phase, or the “up” times, they don’t recognise themselves as being unwell and needing help, and so don’t present to their doctors.’

This was what happened with Ceri. When she first went to the doctor, like many other people living with bipolar, she was diagnosed with depression and prescribed antidepressants. But such medication can be dangerous for people with the condition, and it triggered ‘an extreme episode of mania’ for Ceri.

She said: ‘I spent a lot of money, lovely things like I sent flowers to all my friends in the middle of the night before I got up and thought, I’ve spent hundreds of pounds on flowers.

‘I bought something like five pairs of trainers.

‘But then also more extreme things, like I booked one-way tickets to Colombia, or fell in love overnight with strangers.’

Just after the pandemic, she had another period of hypomania when she was unable to sleep for five days, and was agitated and angry. Things sounded louder and smelled stronger because her senses were ‘out of sync’.

According to Simon Kitchen, the chief executive of Bipolar UK, the consequences of a manic episode can be even more serious.

He said: ‘It can have massive overspending, so they’ll go out and can’t decide what kind of car they want so they’ll buy two or three of the same car but different colours. I know someone who’s done that.

‘People will have very erratic behaviours, they’ll start swearing at their boss or put their resignation in. They might become violent as well, or they’ll put themselves in vulnerable situations and end up being the victims of crime.’

The report from the Bipolar Commission raises the particular impact on woman, with 64% saying they had period of hypersexuality – with results including ‘sexual assaults, unplanned children, vulnerability to sexually transmitted diseases, traumatic abortions and relationship and marriage breakups’.

At the moment, the model for bipolar care in the UK is centred around GPs. If someone is looking to change their medication, they need to contact their GP to go to their psychiatrist – a process that can take a couple of weeks or longer.

In its report, Bipolar UK call for an immediate restructuring of this system.

Simon said: ‘What we would want is for people to have a named psychiatrist they have a relationship with over the next 10 or 20 years to help them manage the condition.’

The charity also wants to see better understanding of bipolar in society and quicker diagnoses, with shorter waiting times for referrals and wider awareness of bipolar as a possible explanation for symptoms rather than depression.

Ceri went to her doctor in another period of depression when she was 27, and this time was seen by a young female GP who had recently graduated. She was the first person to suggest to Ceri that she had cyclothymia, the mildest form of bipolar.

After the NHS mistakenly shut her case, it was another two years before she finally pushed and received a definitive diagnosis: bipolar II.

She said: ‘In that time, if I didn’t have the support of my family I think I would have taken my own life.’

Now 35 years old, she says that diagnosis changed her life in a profound way.

‘It’s like a weight has been lifted off my shoulders, like my life just makes much more sense now,’ she said.

‘Some people don’t like the label, but for me, having the label has been like, it makes sense.

‘Now when I get down, it’s like, OK, this is because I’m bipolar. Or when I get hypomanic – these are symptoms, it’s not my fault.’

A spokesman for the Welsh Government said: ‘We welcome the Bipolar Commission’s work and will ensure that we consider these findings as we explore what further action we can take in Wales.

‘We will also ensure we engage with the Commission as we develop our mental health strategy, which we will formally consult on at the end of this year.’

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