Illustration by Elysia Stent
Trigger Warning: Suicide/ self harm/ professional and institutional sexism/ medication
How much do women have to lose before they win the war with ADHD?
Frustration. That’s what I felt when my psychiatrist told me that my period could stop my ADHD medication working, but that there’s limited research because most drugs were tested on men. Frustration is what I felt when he told me that I would have to prove I had symptoms before age 12 to receive treatment, even though most girls only experience an emergence of debilitating symptoms after puberty. Frustration encapsulates my experience to date since I first referred myself for an ADHD assessment. The title of this article reflects my best description of what it feels like to attempt a task when I’m not on my medication: physical discomfort to the point where I simply have to do something else, however important the task might be. As a friend in the same position put it, I “want to take my skin off”. That feeling is frustrating to the point of tears. And yet, there’s nothing I can do. Every part of the system works against women with this condition. Dr Ellen Litman describes it succinctly: “there remains a referral bias, in that girls are less frequently referred, and a diagnostic bias, in that the diagnostic criteria still exclude many girls.” What’s more, young women are forced to suffer in silence due to societal expectations of femininity and a drive to fit in, as Litman explores in her seminal article ‘The Secret Lives of Girls with ADHD’.
This isn’t a new revelation. As well as studies noting that young girls are less likely to be referred to health services for an ADHD assessment, there’s evidence that teenage girls with the disorder are at high risk for self-harm and suicide attempts. There’s evidence that oestrogen interacts with the neurobiology of ADHD, meaning that as we go through puberty and become emotionally and socially more vulnerable, we also become more symptomatic. Simultaneously, our differing presentations to young boys often result in the belief that symptoms are shameful character flaws rather than a medical condition. While certainly not a causal relationship, one can understand how these coinciding factors could interact to cause feelings of hopelessness. The shame was devastating, in my experience, and worsened exponentially when no amount of effort and good intention changed my behaviour. I still couldn’t concentrate, make appointments, work consistently on a long hobby or project, sit comfortably for more than 10 minutes, regulate my emotions, estimate time passing, stop interrupting people and much more. Instead, I concluded that I was a lazy, rude, emotional mess, and that the fault lay in my own lack of self-discipline and socially-lauded character traits. As a girl with a combined-type diagnosis, my hyper-talkativity and emotional intensity didn’t lend themselves to the “charismatic” and “passionate” labels I saw my male peers with the same condition receive. Rather, I became accustomed to “gobby”, “bossy”, “shrill”, “psycho”, and “overbearing”. All the while, spending every second thinking about how to be the opposite of those things. I’ll leave it to the reader to picture the mental chaos and gradual depression that that feeling leads to.
Although a symptom profile that worsens in young adulthood increases late referrals, the problem still remains that criteria to get diagnosed actively exclude women. The trends with regards to ADHD in girls that I have described have been reported both in clinical journals and by almost every major news outlet. I believe it’s time to demand change. Enough is enough. It shouldn’t have taken me a psychology degree and a task to write an essay on disorders involving dopamine to discover that I might have a name for what felt wrong with me. It shouldn’t have taken me finding a psychiatrist who was a particular advocate for this problem to help me work around the diagnostic barriers when others wouldn’t. It shouldn’t be this hard. You may be wondering why a diagnosis is so important that I’d harp on about it for 500-odd words, and if it’s not perhaps a Pyrrhic victory. Primarily, it grants access to medication, which in my experience singularly turned my life around. But in close second, diagnosis provides an understanding of how to work with and around your brain. Imagine trying to put together a piece of flat-pack IKEA furniture, perhaps the rather elegant ‘Skutskär’. Except you only have access to the manual for an entirely different item. And you’ve been attempting the same task for 18 years. I’d take a punt that the emotion coming to mind is … frustration. Now all of a sudden someone comes along and acknowledges how difficult a job you’ve been attempting, and hands you the correct manual. You might still lose a screw here and there, but life is significantly more enjoyable. This is why a diagnosis was so important to me.
There may be optimism if you squint hard enough. Recently I came across a BBC video that detailed how Jane Lambert, CEO of the Makewell Clinic, had recently set up a branch of her practice dedicated to autism and ADHD care that was “accessible and affordable”. I perked up a little at the idea of disrupting the private sector. A quick look on their website, however, revealed that the definition of affordable is £1600 for a 3-hour ADHD ‘assessment package’. This is unfortunately representative of the rest of the private psychiatry sector, with one centre quoting me the nausea-inducing sum of £870 for a single hour of consultation. It’s not a one-off investment either. The process of ‘titration’ onto meds, wherein one gradually increases dosage to find the clinical ‘sweet spot’ between benefits and side effects, involves 30-minute monthly Zoom appointments that’ll set you back a cool £250 a pop, and a cheap little add-on of £100 a month for medication. However, for many this is the only way to make life manageable for themselves or their loved-ones given the 2-year long waiting lists you’ll find for NHS help. I started this paragraph talking about optimism so I’m sure at this point you’re feeling a little lost. Let me point to the positives I see here: in the BBC piece on Lambert and on Makewell’s website, attention is drawn to the number of adults receiving late diagnoses and the prevalence of women wrestling with their neurodivergence in this way. While there’s still a long way to go with regards to the accessibility of care, awareness itself is priceless. Knowing that you might not be at fault for the things you feel going wrong, or that the guy with the manual is coming round at some point, is enough to keep you going when things are at their worst. As Dr Litman beautifully puts it, one of the most powerful interventions at our disposal is “a consistent sense of hope”.