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‘At 29, My ADHD Was Misdiagnosed As Stress’

Photo credit: CommerceandCultureAgency
Photo credit: CommerceandCultureAgency

From Women's Health

If you associate ADHD (attention deficit hyperactivity disorder) with fast-moving boys flicking pens and unable to concentrate in classrooms, then you wouldn't be the only one.

But, just as with autism, this is a condition that has been severely understood – especially with regards to what it looks like in females. (For context: 5m UK adults are thought to have the condition, but only 120,000 have been formally diagnosed.)

Here, women who were diagnosed as adults – after being told that what they were experiencing was stress, anxiety, depression or a mix of the above – share their stories with WH, in a feature first published in September 2018.

Plus, expert explanations and knowledge from a leading ADHD specialist.


What is ADHD?

Ever opened your fridge to find your phone perched on the middle shelf alongside the eggs? Or run a handover your right leg, only to realise you’ve forgotten to shave the left? How about discovering, via the little red number in the corner of your phone screen, that you’ve got over 40,000 unread emails?

If these were boxes, Michelle Beckett, a 45-year-old charity worker, would tick every one. She was diagnosed with anxiety as a student, bipolar disorder in her twenties and depression in her thirties. But the condition behind her poor mental health was in fact none of these.

Michelle is one of thousands of women in the UK living with attention deficit hyperactivity disorder (ADHD). Exactly how many, even the experts don’t know. And therein lies a problem.

Mental health is on your radar. Awareness has vastly improved over the last decade –as many as 90% of Brits can recognise the key symptoms of depression and around half can recognise anxiety when they feel it, according to new research from Bupa and Mental Health First Aid.

But mention ADHD and, chances are, scenes of schoolboys bouncing off classroom walls will spring to mind. That this stereotype is so hard to shake is why cases of ADHD are constantly misdiagnosed. Those most at risk? Women.

So says the National Institute for Health and Care Excellence (NICE), which updated its guidelines on the disorder in March in a bid to encourage GPs to think again before diagnosing more common mental health conditions, such as depression and anxiety, in women presenting ADHD symptoms.

So, why are we all missing the problem that’s staring us in the face?

What are the first signs of ADHD?

‘ADHD is characterised by three core behaviours: hyperactivity, impulsivity and inattention, with most sufferers experiencing either predominantly inattentive symptoms or a combination of symptoms,’ explains Dr Rob Baskind, a consultant psychiatrist and adult ADHD specialist.

‘It’s a neuro-developmental condition, where the system controlling the concentration and transport of certain neurotransmitters is impaired.’

ADHD entered our collective consciousness after the American Psychiatric Association coined the term in 2000.

Yes, it’s more common among boys and, sure, some kids grow out of it – but it’s thought that as many as 65% of children with ADHD still experience at least some symptoms by the time they’re 25 – and for some, it seems the condition lingers for decades.

NICE recognised ADHD in adults in 2008 and has since recommended that those whose symptoms have a significant impact on at least one domain of everyday life should be referred to a specialist for treatment, which could involve a prescription for methylphenidate hydrochloride (commonly sold under the brand name Ritalin) or a course of cognitive behavioural therapy (CBT).

And yet, few seem to have got the memo.

In the simplest of terms, we’ve got a PR problem on our hands. Awareness of ADHD among adults is so low that a report published earlier this year by the think tank Demos described the condition as ‘invisible’ and called for a government campaign on the issue.

It means you could have every symptom and fail to join the dots yourself.

And with a lot of overlap in symptoms with conditions like anxiety, and face time with NHS GPs becoming shorter than the average Instagram story, it seems doctors are missing it, too.

Compounding the confusion is the way that ADHD manifests in adult women. While children can throw a tantrum, adults are more likely to internalise their feelings – it becomes less socially acceptable to fly into a fit of rage when you have a nine-to-five and bills to pay.

And because of the way symptoms manifest in women, spotting them is harder than composing an email on a Friday afternoon when your mind is already in the beer garden.

A 2014 review of ADHD in women and girls found that because the symptoms women showed were more likely to fall under the category of ‘inattentiveness’ than ‘hyperactivity’, they were also more likely to be considered below the threshold for diagnosis or missed altogether.

It means that should you confess to your GP the frequency with which you leave the oven on, lose the car keys or forget to pick up your dry cleaning, you’ll likely get nowhere.

What is like to have ADHD?

A 2016 study exploring the attitudes of GPs in the UK, Europe and Australia found that misconceptions persisted in terms of the role they were supposed to be playing in the diagnosis and treatment of ADHD.

Participants in the Demos research reported mixed experiences, too, with many saying they had to ‘shop around’ until they found a GP who was willing to make a referral to
a specialist.

It’s a familiar story for Chelsea Saynor-Young, a 29-year-old education manager from Sheffield. ‘Looking back at my teens now, all the signs were there – the risk-taking behaviour, the low self-esteem,’she says.

As a teenager, Chelsea self-harmed and at 15 she became pregnant with her daughter. Even years later, she blamed herself for her poor mental health, putting it down to a lack of self-care.

It wasn’t until her daughter began to show signs of ADHD that she realised she might have the condition, too.

‘By the time I went to my GP, I’d done a huge amount of research and I explained that I thought I had the condition. So when he put my symptoms down to work-related stress from my teaching job, I became so flustered I broke down then and there.’

But she didn’t give up. Chelsea went for a second opinion, this time armed with a five-page letter.

‘I detailed every symptom I’d presented throughout my whole life – social, academic, emotional – in a considered argument and linked it with ADHD behaviours, from falling pregnant young to self-harming. That doctor referred me straight away.’

While Chelsea’s ADHD was initially dismissed as work-related stress, some women are being diagnosed with entirely different mental health conditions.

Despite being ‘that annoying kid in class’ and experiencing a lingering feeling of being different, Michelle couldn’t put her finger on what was going on – and nor could any of the trained medical professionals she consulted.

Every time she was given a new diagnosis, she hoped a solution was in sight. Instead, she wound up feeling even more frustrated than before.

‘Back when I was at university,I procrastinated quite a bit and I kept asking my tutors for extensions, so my GP diagnosed anxiety, but I knew there was something else going on,’ she explains.

How does ADHD present in adults?

In her thirties, Michelle was diagnosed with depression (‘I probably was depressed, but it wasn’t the overwhelming feeling’) and a bipolar spectrum mood disorder diagnosis followed in her thirties (‘I never felt the highs, only the lows’). It wasn’t until she was in her early forties that an NHS crisis psychiatrist used the term ADHD.

Desperate for an answer, she resorted to going private and, at the age of 44, she finally got the diagnosis that changed her life.

While most ADHD research to date has been done on teenage boys, a Norwegian study published earlier this year was the first to explore the prevalence of other mental health conditions among adult women with ADHD.

Using data gathered from 40,000 Norwegians with ADHD and 1.6 million without the condition, the researchers found that women with ADHD had a higher prevalence of anxiety, depression, bipolar disorder and personality disorders.

It’s a chicken-and-egg situation – and understanding where one mental health condition ends and another begins is like entering a maze with moving hedges.

But could living with undiagnosed ADHD cause other mental health conditions to develop?

‘If you’re one of the few people whose ADHD still presents in adulthood, then it is likely that your ADHD is severe, meaning you will experience symptoms more acutely than others whose symptoms decrease after adolescence,’ says Dr Ashok Roy, lead intellectual disability psychiatrist at the Royal College of Psychiatrists.

‘And the longer it goes undiagnosed, the more likely you are to develop secondary conditions as a direct result. At that point, it becomes a vicious cycle.

If you treat the secondary conditions without ever recognising that the ADHD is triggering them, then you may continue to struggle.’

How does ADHD affect your life?

Consider that those with ADHD are also more likely to be impulsive and take risks and you begin to see why the condition, and lack of answers, is driving some women to breaking point.

Michelle describes her life up to diagnosis as ‘chaotic’. ‘I got pregnant three months after leaving university, which wasn’t planned. My first marriage ended in divorce and I agreed to marry my second husband after we’d been together for a week.

'I ended my thirties with two divorces under my belt. That’s when I really started to struggle.’ After a failed business venture in her thirties, Michelle felt suicidal and spent time under the care of an NHS crisis team.

‘I felt a huge sense of failure and unable to live up to my potential. I couldn’t make anything work. I felt like I’d failed at being a parent, a partner, a businesswoman. I felt like a waste.’

'Being diagnosed with ADHD wasn’t just life-changing, it was life-saving. Going on medication was ‘transformative’. ‘All the guilt I’d felt for years about not being able to make my life work just lifted.

'I’m still me– I’ve still got my fire and my drive – but my thoughts aren’t jumbled up any more,’ she explains. Since being diagnosed, Michelle has founded the charity ADHD Action and she now lobbies the government on policy.

Raising awareness on all fronts can make the biggest difference, says Dr Roy. ‘ADHD is an incredibly rewarding condition to treat because once you make a diagnosis and start working, you’re bound to make a difference.

'It doesn’t involve complex psychological treatment, response to treatment can be quick and, for some people, medications can make a difference within days,’ he explains. ‘This thing that I thought was untreatable anxiety or depression nearly killed me,’ adds Michelle.

‘My life could have been very different if this was picked up in my teens. I don’t want any woman to go through what I went through. I’m on a mission to get ADHD in front of people.’

How do you diagnose ADHD?

So how do you differentiate the odd scatty moment from a mental health condition you’ve been living with your entire life? For starters, forget the stereotype. You don’t have to be talking a mile a minute in order to have ADHD.

Remember that women are more likely to present symptoms of inattentiveness – getting distracted midway through reading an email, constantly flitting between the tasks on your to-do list or regularly losing things.

On top of these traits, you might also exhibit hyper active or impulsive behaviours – changing plans last minute, commanding the attention of a room and, yes, talking a mile a minute.

Nodding your head? If you think you have ADHD, the first step is to see your GP and ask for a referral to a specialist.

NHS guidelines suggest that you’ll need to exhibit at least five symptoms in order for your GP to refer you, and with consultation times as short as 10 minutes, it can help to come prepared.

Think about how it affects you in all areas of your life and write it down,’ suggests Dr Baskind. ‘If you have ADHD, the symptoms will occur very often –probably daily – and will impact several areas of your life.’

Evidence of a significant impact might include being a dangerous driver, struggling to hold down a job or having difficulty forming relationships.

Because ADHD is a developmental condition, a GP will also want to see evidence that you’ve had symptoms since childhood.

If a specialist does diagnose ADHD, treatment could involve medication, therapy – such as CBT – or a combination of both. You might not fit the stereotype, but it might just change your life.

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