My online shopping sprees were signs of a serious illness. Millions suffer like Rachel but it took doctors 20 years to diagnose her. The impact can be devastating – but there IS an answer

For Rachel Luby, a 37-year-old mental health nurse from Pitsea in Essex, every day is a balancing act.

Her bipolar disorder makes life a rollercoaster of barely predictable high, or ‘hypomanic’, episodes when she’ll feel on top of the world and capable of anything for a few weeks. These are chased by devastating ‘depressive’ episodes during which she does not have the energy or impetus even to get out of bed.

In her 20s, Rachel was initially misdiagnosed with borderline personality disorder (BPD) – the mood changes that people with BPD typically experience are intense and short-lived (several times a day), whereas the mood changes in bipolar typically last days or often weeks in between periods of stability.

‘I felt the description didn’t match my symptoms,’ says Rachel.

But as a result of her BPD diagnosis, she missed out on the right treatment, and it was only after a gruelling 20-year personal battle – including five hospital admissions and a suicide attempt – that she received the correct diagnosis, three years ago.

Ironically, at the time Rachel was working in a suicide prevention team. She became so absorbed in the work, she stopped sleeping. ‘I was working from 9am until five the next morning – to a very high standard,’ she says.

‘Everyone in the team thought I was doing a brilliant job – and I was, but I couldn’t stop driving myself. I wanted to do better and better. Over several months, I drove myself into a breakdown.’

Unable to rest or find a way of calming her frenzied mind, Rachel meticulously planned her own suicide, including writing a directive asking medics not to resuscitate her and even drawing up the order of service for her funeral. Then she made an attempt to take her own life.

‘I was so afraid, I called an ambulance, which reached me just in time,’ she says. Rachel was in intensive care for 11 days, which was followed by three months on a psychiatric ward.

‘I was so manic I went for 20 days sleeping less than half an hour a night,’ recalls Rachel.

No medication seemed to help. While in hospital she spent all her time – and thousands of pounds – shopping online.

‘Every day there’d be so many parcels for me, they’d have to bring a trolley,’ she says. ‘I’d buy all the staff and patients presents, and loads of clothes – all of them outrageous. I was running around the ward in ballgowns.

‘Taking into account my previous depressive episodes, the psychiatrist finally put it all together.’

He said: “I’ve got something big to share with you… We’ve reviewed your diagnosis from BPD to bipolar.” ’

‘It was a relief to hear him say it – but I’d known since I was 18. Bipolar fitted, but my opinion had been silenced by the diagnosis of BPD.’ Unfortunately, Rachel’s experience is not uncommon. It’s estimated that more than one million people in the UK suffer from bipolar – and, on average, they are misdiagnosed 3.5 times; and, after first telling a healthcare professional about their symptoms, they have to wait 9.5 years to get a diagnosis, reports the charity Bipolar UK. This can lead to a dangerous gap in care.

‘Someone living with untreated bipolar is likely to experience ongoing symptoms which may get worse over time,’ says Guy Goodwin, an emeritus professor of psychiatry at the University of Oxford.

‘They are at much higher risk of making impulsive decisions with life-changing consequences, such as spending their family’s savings, leaving a job or having an affair.’

Left untreated, the symptoms of mania ‘can escalate into psychosis, with hallucinations or delusions, where hospitalisation and detention under the Mental Health Act is usually necessary’, says Professor Goodwin.

People with bipolar are 20 times more likely to die by suicide than the population as a whole.

This risk is higher in those who are living with untreated bipolar, he adds.

While symptoms can appear at any age – the condition affects men and women equally – research has found that almost 50 per cent experience their first episodes before the age of 21.

There are two main types of bipolar. In bipolar I, manic and depressive episodes are more severe (for instance, longer), but less frequent.

Those with bipolar II – which make up 40 per cent of cases, including Rachel’s – experience less severe manic episodes but more intense episodes of depression and more frequent switches between the two.

During a manic episode, people typically feel elated, confident and full of energy, with recklessness including extreme overspending or risky sexual activity common.

During a depressive episode they’ll feel sad and hopeless, prone to thoughts of self-harm and suicide.

But some people with bipolar disorder experience periods of mania only, says Dr Thomas Richardson, an associate professor of clinical psychology at the University of Southampton, who himself has bipolar disorder.

Stress and poor sleep can be triggers and the condition tends to run in families – research suggests the cause is up to 80 per cent genetic.

Rachel can now laugh as she talks about her periods of mania – the relentless spending, grandiose thoughts and crazy schemes.

‘During one manic episode, I thought it would be a great idea to apply diamanté sticker dots to all the walls in my house. A few weeks later, I thought: “Oh my God, what have I done?” But at the time, it seemed the best idea I’d ever had.’

But the truth is, she says, living with undiagnosed and untreated bipolar is unutterably bleak.

‘The highs at that time could last three or four weeks. The lows would last months,’ she says.

‘I’d spend 23 out of 24 hours in bed, crying, not being able to read or study or even watch TV. I was just existing. There was no pleasure in anything. The only thing that helped was thinking about how I could end my life.’

With no ‘test’ for bipolar disorder, a diagnosis is based on both current and past symptoms, explains Professor Goodwin.

‘It can be challenging for busy GPs to pick up on warning signs in a short appointment,’ he says.

‘And even if a GP asks the right questions, a patient’s answers rely on them having some insight into symptoms. Lots of people don’t realise the periods of hypomania [a less severe stage before mania] can be a sign of bipolar.’

Instead, they may think they are just being incredibly creative or productive.

The chef Heston Blumenthal, an ambassador for Bipolar UK, who was diagnosed in 2023, has described periods of mania when he felt like a ‘superhero, when my imagination would go ballistic’, followed by deep depression.

‘For 50 years, I thought this was normal,’ said Blumenthal (who appears in a BBC documentary about his experiences to be broadcast next month).

Professor Goodwin says that a survey for the Bipolar Commission found that before getting a diagnosis of bipolar, 61 per cent of patients had first been diagnosed with depression and 21 per cent with anxiety. Other misdiagnoses include BPD or an eating disorder.

‘Even if a GP suspects someone has bipolar disorder, it can be difficult to get a referral to a psychiatrist,’ adds Professor Goodwin.

‘Without a diagnosis, people can’t get appropriate care. There are swathes of people with bipolar who could be functioning well, but who are unable to access effective treatments.’

This comes at a huge cost to them personally – but the failure to diagnose and treat people with bipolar is also costing the UK billions of pounds a year, according to data reported by the BBC last month.

One of four children growing up in Barking in east London, Rachel was a happy, sporty child – but she can remember having ‘quite dark thoughts’ where she questioned the point of living, from the age of seven.

‘By 15, I was withdrawn, crying all the time, just finding the world not a happy place,’ she says.

By the time she went to university, initially to train to be a teacher, she was in the grip of an eating disorder and had to drop out after her first year.

‘I was depressed, hardly eating anything, crying all the time, no energy – I’d be in bed for weeks,’ she says.

Looking back she can see this was the first of many depressive episodes which would dominate her life, yet she saw a psychiatrist only twice – once when she was 24 and again at 27 – when she was referred to the community mental assessment team by her GP.

‘By this stage, I was self-harming, cutting and burning myself,’ she says.

‘A psychiatrist diagnosed BPD and discharged me back to my GP with a prescription for lamotrigine, a mood-stabilising drug which made the highs a little less high and the lows a little less low, but I was still struggling.’

Her 20s were lost to rocketing mood swings. During a manic episode she is unable to sleep for days, her mind racing with endless possibilities. ‘It feels like being on a carousel at a disco,’ she says. ‘It’s so fun and so fast, I don’t want the feeling to stop.’

When Dr Richardson – who was diagnosed at 21, experienced his first manic episode when he was 18, he describes feeling ‘elated – with lots of energy: I went from saving a few hundred pounds to buy some music equipment to planning an international business with linked bars and restaurants. I planned to help the homeless and give my dad, who’d been made redundant, a job.

‘After I’d been awake for three days and nights, my parents called the out-of-hours GP and I was admitted to hospital. But even then, I felt irritated that no one else understood what a great idea it was.’

Just as quickly, a patient’s mood can plummet – Rachel says it makes even simple tasks such as running ‘feel like a marathon’.

‘Very quickly, within hours sometimes, there is nothing of any pleasure left, food doesn’t taste the same, I can’t listen to music,’ she says. ‘I’m numb. Just sleeping and breathing.’

When the mood lifts, ‘it’s instant – the skies have cleared, I can smell and taste again – and I’ll realise the world is actually a wonderful place’.

Now, thanks to the correct medication, Rachel has fewer highs and lows and they’re shorter in duration. She takes a combination of drugs: lamotrigine, lithium (a mood stabiliser), sertraline (an antidepressant) and nitrazepam (a sedative) to help her sleep.

She is also in daily phone contact with an NHS care coordinator who can quickly arrange a prescription for a sedative when she’s tipping into hypomania, or check up on her when she’s depressed – for her treatment hasn’t completely eradicated her mood swings.

In the fortnight before she spoke to Good Health, she’d cleaned the house top to bottom every day, booked a £2,500 holiday to Sri Lanka, and bought a telescope, five pairs of the same jeans, a flower-pressing kit and a home gym. ‘It all made sense at the time,’ she shrugs.

There are financial repercussions. She estimates she’s spent £15,000 over two years on random items. ‘I’ve bought furniture, designer handbags and shoes – Louboutins! I never go anywhere.’

Both hypomania and mania can have ‘a significant impact on someone’s life’, says Simon Kitchen, the CEO of Bipolar UK.

‘Impulsivity is common, leading to risk-taking behaviour, which could include drug and alcohol misuse, overspending and hypersexual behaviour.

‘A full manic episode can feel like a train racing down a hill – starting with extremely high energy where someone takes on multiple projects, spiralling into chaos.’

Over 60 per cent of respondents to the Bipolar Commission report had lost a job due to their bipolar and 15 per cent their home.

Rachel feels that with earlier recognition and treatment of her condition, she would have avoided months-long stays in hospital and the complete upending of her personal life.

‘The impact has been very great,’ she says. ‘I’ve only ever had one serious relationship. I don’t imagine I’ll have another – and I have very few friends outside my work.’

Yet despite all this, Rachel has managed to build a nursing career and holds down a senior job as a mental health nurse.

‘I think everyone at work has always known there’s something not quite right with Rachel, and they’ve looked after me,’ she says.

Part of Dr Richardson’s work as a psychologist is helping people understand when they’re becoming unwell. ‘Common early warning signs are sleeping less, socialising more, working longer hours, being impulsive,’ he explains.

‘The problem is the line where normal behaviour becomes mania is blurry – what is me and what is bipolar disorder is quite nuanced.

‘In one study, it was found that a quarter of people with bipolar said they wouldn’t want to be without it, while less than half wanted drugs to control their mood completely – because they felt they had enhanced abilities.

‘Even as a clinician, there’s a part of me that thinks I’ll be more productive if I’m just a bit high… It’s something I discuss constantly with patients.

‘It’s a risky game, because if you go with the mania, you are almost certainly going to go too far very quickly. It feels fun at first, but you’re going to lose control and go faster and faster until you crash and get hurt.’

‘But I want people to know that it isn’t all out of your control,’ he adds.

To this end, Dr Richardson, together with his manager at work and his wife and parents, have a ‘relapse prevention plan’ for him. This involves ‘working regular hours, taking a lunch break, making sure I exercise and get enough sleep’.

And his advice for when the lows come: ‘You want to shut yourself away, but the key is to fight that urge: you need to go out, see people and try to stick to your normal exercise routine’.

And with the highs ‘it’s important to recognise that it’s OK to have a big idea, but a useful rule of thumb is: can it wait? If it’s so urgent and impulse-driven you can’t sleep on it, then it’s probably not a good idea.’

Rachel now works in a mental health call centre, where colleagues recognise she is good at her job – triaging people in the midst of crisis – because of her own experiences.

Very often she will spot someone else with undiagnosed bipolar.

‘They commonly have a diagnosis of depression or BPD, but if they’ve just spent £10,000 gambling and are now sinking into a deep depression, I’ll be pretty sure that bipolar has been missed,’ she says.

She is able to marshal support for them, calling their GP to prescribe mood stabilisers and the home treatment team, or even organise a hospital admission.

‘It’s incredibly rewarding to be able to help.’