Being me often feels like a game of Buckaroo: I can carefully arrange my life but, without notice, everything can be flung skywards. As a child, I was usually labelled as lazy or a daydreamer, forgetting to turn in homework, losing Tube tickets, generally scattering my possessions in the wind. But I never grew out of it: for decades, even when I was trying my best, I’d forget deadlines, mix up instructions and, on one occasion, arrive at the airport on the wrong day.
Finally, after 36 years of feeling like something wasn’t right, last year I was diagnosed with attention deficit hyperactivity disorder, or ADHD. It’s a neurodevelopmental disorder, now seen as partially hereditary, that’s characterised by poor organisation, fidgeting, impulsive behaviour and difficulty in concentrating.
Being diagnosed felt like a fog lifting. With typical ADHD enthusiasm, I began a deep dive into all aspects of the condition and found that it encompassed everything from an ability to hyperfocus – I’d certainly disappear into books for hours on end – to an inability to self-regulate your emotions, which explained many a printer-related meltdown and my tendency to endlessly worry that I’d upset someone.
Yet, like an alarming number of other women, I spent decades not understanding why I behaved and felt the way I did. Aged 17, I’d gone to my GP wondering if I could have ADHD – but I was practically laughed out of the consulting room. Now, evidence from the ADHD Foundation suggests that girls are at particular risk of not being diagnosed – and so not receiving the appropriate treatment.
Sarah* was 50 before she was diagnosed. She was always in trouble at school, was expelled numerous times, but often was not quite sure what had gone wrong. When she became a mother, she found a new purpose. ‘I was engrossed in my children – I devoted myself,’ she says. Eventually, though, the demands of motherhood became too much – partly because she was living with a life-changing condition and didn’t know it. ‘I began self-medicating,’ she says. ‘If I had to clean the house, I’d take some speed to be able to get it done. I couldn’t function without it.
It was only recently, after Sarah read a handout at an AA meeting, that things clicked into place. ‘I realised something wasn’t right. I wasn’t absorbing and retaining information. I saw a description of ADHD and thought, that’s me.’
Dr Nancy Doyle has ADHD and founded non-profit organisation Genius Within, to help people with neurodiverse conditions. As she notes, ‘Adult diagnoses of ADHD in men and women are equal, whereas in childhood four boys are diagnosed to every girl, so there’s something going on.
Diagnosis means that, finally, I can navigate the world with confidence instead of shame.
It’s partly an education problem, she says. In childhood, an ADHD diagnosis often relies on parents or teachers identifying signs of the condition, whereas in adulthood it’s more often self-observed. ‘Research shows that a lot of GPs believe ADHD doesn’t exist,’ she says. ‘Most don’t understand it very well and they’re unlikely to be looking for ADHD as it presents in women.’ In my case, I’d always been labelled as distracted, behaviour that was perceived as wilful. Contrast that with the stereotype of the schoolboy with ADHD, who simply can’t sit still, and it starts to become clearer why girls are going undiagnosed.
Social skills can also mask the signs of ADHD, according to Dr Philip Asherson, professor of clinical and molecular psychiatry at King’s College London. ‘Many women with ADHD are never diagnosed,’ he says. ‘Some people believe the way we view ADHD is stereotypically male. Women are less likely to be violent, they tend to turn their emotions inwards and they might self-harm, while men project out.’ This could explain why women are getting to their twenties, thirties and even forties before they are diagnosed.
Of course, women are socialised to be quieter and take up less space: to be the most agreeable versions of ourselves. This form of gender policing can feel particularly aggressive when it comes to women with ADHD. Growing up, Neshwa Boukhari, 34, felt pressure to modify her behaviour. ‘I learned to put a lid on my hyperactivity because it wasn’t socially acceptable – my mum helped me channel it by signing me up for lots of after-school activities.
For Kajol, 23, undiagnosed ADHD made life very confusing. ‘I couldn’t understand how I did really well sometimes and not others,’ she says. Coming from a conservative background didn’t help. ‘I’ve been ostracised by my Indian family for behaving in an “unladylike” way. Growing up I was a rebel, which conflicted with the strict gender binaries of South Asian culture’.
ADHD can also have a serious impact on life expectancy – up to 11 years – because of its effect on impulsivity and self-regulation, which can result in accidental injuries, as well as substance addiction and diabetes. In Sarah’s case, her struggles not only led to addiction to amphetamines and alcohol, but also money issues. ‘I wasn’t coping, I got into debt and got myself into a lot of trouble. I really struggle to stay sober. Now I’m in AA, I’m trying to manage my life.
That’s why, for many women, a diagnosis is a lifeline. It provides self-awareness, which is empowering and reassuring. ‘When you start to realise that not everyone has to deal with this, you see the many ways the odds have been stacked against you,’ Neshwa says.
Dr Doyle believes we need to change the way we speak about ADHD, if we’re to improve diagnosis rates for women and get them the treatment and compassion they need. ‘I encountered so much stigma,’ she says. ‘It’s one of the reasons I came out as ADHD. We’ve got to change that by talking about the benefits.’
And there are upsides to having ADHD, Kajol says. ‘It makes me passionate, driven and creative. As my educational psychologist told me, I have a richness of life that many people won’t experience.’ For my own part, diagnosis has allowed me to understand myself at last. I can now navigate the world with confidence instead of shame, knowing my strengths and weaknesses; seeing my multi-stranded life as an asset, not a failure.
And when I look back at what life was like before my diagnosis, I don’t want any other woman with ADHD to have to wait 36 years to find out who she really is.
*Names have been changed
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