It took me several exhausting months and hundreds of pounds to get an ADHD diagnosis

I didn’t just wake up one day, pop to the ADHD shop, and buy a shiny new diagnosis to make myself feel important – I’m not collecting diagnoses like some kind of neurodivergent Thanos

April 4, 2024 5:49 pm(Updated 6:01 pm)

Late last year, as I was moving out of London, I got a letter. It was from my local NHS service saying that they’d received my referral for an ADHD diagnosis, and that I was now on their waiting list. Which would’ve been great. Relieving, even. If the referral wasn’t three years old.

So it wasn’t surprising to read that according to a new report, the NHS is simply unable to meet the demand for autistic and ADHD diagnoses. The Nuffield Trust says that since 2019, the demand for diagnoses has risen by 400 per cent.

This statistic is alarming – but not for the reasons you might think, or are being led to believe by so-called “experts” arguing that the “remarkable” increase in ADHD diagnoses is due to something called a “diagnostic creep”, wherein an over-evaluation of feelings and emotions is leading to doctors “over-diagnosing” ADHD. As a result of this perspective, we’re hearing a lot about everyone wanting a label, needing to feel special and jumping on the hysterical bandwagon. But I can tell you that this is far from the reality. As neurodivergent author and journalist Kat Brown so rightly says, “it’s not a bloody trend”.

Like a lot of women with ADHD, I managed to fly under the radar for so long by masquerading as a functional human being. But lockdown knocked me for six, and I realised something wasn’t right when I suddenly lost the ability to meet deadlines both at work and at university. Like a lot of people in lockdown, spending an extended amount of time alone with my own thoughts with no distraction made me notice and confront things about myself I was able to brush off before, like my chronic lateness, my general inattentiveness, how sometimes, having to concentrate on something was more painful than pulling teeth. 

What those who say it is a trend are missing is one very important question: why on Earth would I choose to have ADHD and all the difficulties that it entails? Some well-meaning people might say that ADHD is my “superpower”, and in some ways, I guess that’s true. When I’m passionate about something, I can hyperfocus at an almost inhuman level, and because my brain is always going at 100mph, I’m good at generating creative ideas and looking at problems from an alternative perspective. In a lot of ways, I’m grateful for my brain being the way it is.

But this goes hand-in-hand with other pretty debilitating traits, including burnout, extreme fatigue, and inattentiveness. I also experience pretty intense emotional dysregulation where everything feels too overwhelming, and most of all, I experience “analysis paralysis” – where the ADHD brain feels so cluttered and overwhelmed, it’s virtually impossible to get started on a task even when I really, really need to.

So, this “superpower” narrative does more harm than good because it contributes to society failing to grasp that ADHD is a disability. It can and does disable you sometimes, and that’s why people like me are so desperate to get some kind of help and support.

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With all its moving goalposts, I don’t think that there is one single experience more frustrating than having to deal with the NHS’s mental health services. It’s like playing a never-ending game of whack-a-mole, because as soon as you feel like you’re getting somewhere, another barrier pops up.

Most egregious at all is the fact that ADHD is even under NHS’ mental health services in the first place. It feels dismissive, as if someone is trying to imply that ADHD is some kind of hysterical neurosis as opposed to a literal neurological difference.

And even when you do get a diagnosis, that doesn’t mean everything ends up being fine forever. After begging my NHS GP for a referral and filling in the same questionnaire about three times in a row, I was ignored, dismissed, and alienated to the point where the only viable option felt like paying for a diagnosis.

But I didn’t just wake up one day, pop to the ADHD shop, and buy a shiny new diagnosis to make myself feel important. I’m not collecting diagnoses like some kind of neurodivergent Thanos. Nobody does that.

By the time I found a private clinic willing to diagnose me, I had been oscillating back and forth between NHS services for over a year. And it goes without saying that paying for a private clinic is an immense privilege when many others don’t get that option.

Still, I decided to pay for a diagnosis – which costs between £380 and £1,150 and I couldn’t really afford – because living without one, in short, was hell. I had no idea why I had started to get overwhelmed so easily, why I had lost the ability to meet deadlines, and why my brain couldn’t quite simply be quiet. But what I now realise is that this was prolonged burnout from masking my ADHD symptoms for so long and trying to keep up with a world that wasn’t designed for me.

What I want society and health professionals to understand more than anything is that people aren’t choosing to get diagnosed with ADHD for fun. Nobody would willingly choose to get to a point where they feel like their brain is hijacking their life. To get to the point of seeking a diagnosis, it’s very likely that this person’s life has already been profoundly affected by undiagnosed ADHD. I think this is something even health professionals are starting to lose sight of at times.

Nuffield Trust chief executive Thea Stein says that neurodiversity is “a really complicated issue for us to all collectively understand as a society”, but truth be told, I don’t think it’s that complicated at all. It’s just a matter of listening to people who tell you they’re struggling and giving them the benefit of the doubt rather than scrabbling to be part of a big, neurodivergent trend.