A fortnight ago, a psychologist gave me a life-changing diagnosis: obsessive compulsive disorder.

Otherwise known as OCD, it’s a serious mental health condition characterised by obsessive thoughts and compulsive actions.

I wasn’t shocked – it was something of a lightbulb moment. As a health reporter with a special interest in mental health, I’d had my suspicions.

But it was also infuriating. Prior to this, I’d been told by doctors – since my early teens – that I suffered from anxiety.

I’d taken medication, which only seemed to half-control my problems. And I’d had hundreds of hours of therapy, which I’d found relatively useless. Now I know why.

Most people have heard of OCD – it’s part of the vernacular to say people who are fastidiously neat and tidy are ‘a bit OCD’.

Footballer David Beckham has it, and claims it manifests as a need to arrange cans of Pepsi in pairs in his fridge.

‘A fortnight ago, a psychologist gave me a life-changing diagnosis: obsessive compulsive disorder,’ writes Eve Simmons

Actress Megan Fox, another sufferer, says she had such a fear of germs that she’d wash her hands until they bled.

Compulsively switching lights on and off, endlessly checking you’ve locked the front door and counting pavement cracks are other well-known symptoms.

But I experienced none of these things. My belongings are not kept in an orderly fashion (you should see the state of my sock drawer). And I often forget to lock the door.

According to experts, I’m far from alone. ‘Many people are misdiagnosed because of widespread misconceptions about what the condition actually is,’ says Dr Lynne Drummond, a consultant psychiatrist who specialises in OCD.

‘Without proper treatment, many become withdrawn and disconnected from everyday life.’

While official statistics suggest between 750,000 to one million people in the UK are diagnosed with OCD, studies show that it takes an average of nine years for experts to spot it – which means thousands are likely falling through the cracks.

My own story begins aged 15, when I was first hit by a bout of extreme anxiety.

I’ve written about this previously in The Mail on Sunday – and the decision of my kind GP to give me antidepressants. I’ve also written about how medication has helped, to some extent, when I’ve needed it since. But what I haven’t admitted is the disturbing nature of the thoughts that once left me unable to function. The thought that eventually landed me in an adolescent psychiatric clinic – with psychologists debating whether to keep me in overnight – was this: what if I wanted to kill myself?

I’d become terrified of sharp objects and medications, having convinced myself I couldn’t be trusted around them. To everyone who knew me, this was bizarre.

I had never felt depressed. I was a relatively happy-go-lucky teenager, content with my regular life consisting of inane classroom gossip and weekend trips to the local shopping centre. I was, however, an anxious child, who sometimes became fixated on potential catastrophes.

When I couldn’t shake that particular thought, it was concluded I was suffering an acute period of anxiety and depression, which I now know wasn’t right.

I was offered eight sessions of cognitive behavioural therapy (CBT) along with the medication, and my mother was ordered to keep a close eye and bring me back to the clinic if she suspected I was about to harm myself.

I never did. Within a few days I’d forgotten all about it and was back to worrying about my outfit for a non-uniform day.

This cycle has become a theme in my life. In times of stress, my brain dreams up something I’m scared of and hones in on it, capturing all of my attention. It becomes all I can think about, leaving me consumed with fear.

Medication helps to take the edge off and I’ve become good at talking myself down from the ledge.

But it’s not easy.

Now I have a pressing reason to sort my mental health out for good: I am eight months pregnant and want to be as fit as possible for my newborn son. I’ve spent the last six months hunting for podcasts, articles and books about pre and post-natal mental health to arm myself with information that could prevent a flare-up. 

But nothing I heard or read chimed with me. Most of what I found centred on birth anxiety or fears about being a bad mum. Only one podcast rang true – actress Kimberley Nixon on the Mail’s Life Of Bryony – describing post-natal OCD and a crippling fear she might harm her baby.

Kimberley Nixon on the Mail’s Life Of Bryony describing post-natal OCD and a crippling fear she might harm her baby

She wasn’t acting on compulsions, but trapped in obsessive loops, questioning whether she was secretly evil. Her story echoed mine. I’ve worried I might harm children I was babysitting, or stab my partner after hearing a podcast about Sex Pistols star Sid Vicious and his girlfriend Nancy Spungen. I knew I wouldn’t – but the ‘what if’ was debilitating.

I’ve fixated on my sexuality and developing romantic feelings for female friends – and whether I would have a psychotic break.

These are all common OCD themes, experts say. In some cases, they go hand in hand with compulsive behaviours – the handwashing, checking locks, counting cracks – which patients find help relieve the mental torment. But that’s not always the case – for some sufferers, the compulsive bit is all in the mind. And this is not always obvious to the sufferer.

‘Patients may perform all manner of mental exercises linked to the intrusive thought,’ says Dr Drummond. ‘I had a patient who feared he’d had sex with strangers and somehow forgotten about it.

‘He’d try to retrace the steps of every romantic encounter he’d ever had to “check” for evidence. Sometimes you have to delve deeply to find out exactly what the compulsions are. Often patients are unaware they’re doing it.’

I now recognise my disordered mental habits that typically followed intrusive thoughts. I’d scour my memory for evidence I was capable of the horrendous acts that haunted me – fixating on minor transgressions, such as arguments with my brother, as proof I was secretly a psychopath.

I’d compare my behaviour to that of my friends in everyday situations – at restaurants, out for drinks – to work out if I was normal.

I find all this difficult to articulate, so it’s unsurprising GPs and numerous psychiatrists failed to pick it up.

One 2015 US study asked GPs to identify a variety of fictional OCD cases. It found half were unable to spot the condition, but the failure rate was lower for those with contamination-themed OCD – the most well-known, yet not especially common, type.

‘The story of Kimberly Nixon (pictured) echoed mine,’ writes Eve Simmons. ‘I’ve worried I might harm children I was babysitting, or stab my partner after hearing a podcast about Sex Pistols star Sid Vicious and his girlfriend Nancy Spungen’

Dr Drummond says there are ‘key differences’ between anxiety and OCD. The nature of the worries in generalised anxiety disorder tend to relate to the patient’s daily life – for example work, relationships or money, explains Dr Drummond, author of Everything You Need To Know About OCD. The fears in OCD, meanwhile, are extreme, catastrophic and usually represent the opposite end of a person’s moral values.

While the thoughts and worries in generalised anxiety disorder are often ‘fleeting’, in OCD they are repetitive and make you feel you must urgently ‘do something’ about them, Dr Drummond says.

‘To diagnose OCD I am looking for nasty intrusive thoughts or images that invade a person’s mind and they feel unable to dismiss them.’ 

Prior to 2022, OCD was considered an anxiety disorder, according to the DSM, a medical manual of every mental health diagnosis and its symptoms. But in the latest version, it is listed as its own, distinct condition.

The gold-standard treatment for generalised anxiety disorder is CBT with a low to moderate dose of the antidepressant SSRI.

‘Research shows traditional CBT can make OCD symptoms worse,’ says Joshua Fletcher, a psychotherapist specialising in OCD and host of the podcast Disordered.

‘The therapist often pays too much attention to the intrusive thought, which exacerbates the ruminations driving the disorder.’

This chimed with me – it just never felt like therapists knew what to say when I tried to explain what was going on in my mind.

Poor treatment can have devastating consequences. People with OCD are five times more likely to die by suicide and face higher risks of early death from conditions such as heart disease, lung problems and hormonal disorders, according to Sweden’s Karolinska Institute.

They’re also 92 per cent more likely to die in accidents. Dr Drummond says this may be due to the isolation OCD can cause.

The most effective treatment is exposure and response prevention (ERP), a targeted form of CBT. But in many areas, only standard CBT is available.

‘In some parts of the UK patients are offered anxiety management courses [virtual group therapy to teach stress-relieving skills]. In others, patients are told their case is too severe for the local services to handle. It all means we are failing people with OCD badly.’ Official guidelines also recommend higher-than-usual SSRI doses. ‘The studies show high doses are needed to see the most significant benefit in OCD,’ says Dr Drummond.

This year wasn’t the first time I had suspicions about my childhood diagnosis. I had questioned it in my early 20s, when I developed anorexia – despite having had a famously healthy appetite.

Obsessive calorie counting and meal planning became a distraction from the parts of life that felt out of control.

Evidence suggests a neurological link between anorexia and OCD. One study found both involve abnormalities in the brain’s decision-making region. Another shows one in 20 anorexia patients later develop OCD.

‘A lot of the patients I see also have eating disorders,’ says Fletcher. ‘It’s a similar mechanism. You’ve identified something as a threat – foods or gaining weight – and decided it requires all of your attention.’

About a month ago, I got in touch with a highly recommended OCD specialist. Within five minutes, she recognised my episodes as ‘typical OCD’. I’m yet to have my next session, but I’m looking forward to it.

I’ve also increased my antidepressant dose, under my GP’s guidance. I don’t know if it will work. But if nothing else, I hope this journey teaches my soon-to-be son something important: if something doesn’t work, try, try again.