I was finally diagnosed with ADHD in my fifties – and it changed my life

It was a long and arduous path for Lucy SM Johnston to get answers as to why she’d spent decades struggling to focus. But a global drug shortage now threatens her newfound peace

‘The drugs I was given, Elvanse, worked. I even took a career break to paint’ (Lucy SM Johnston)

Chaos isn’t always my fault, but it definitely follows me around. It has done for as long as I can remember. Only now, the chaos has a name: attention deficit hyperactivity disorder (ADHD). Finally, at the age of 52, I have a late-life diagnosis – and medication that has helped me focus properly for the first time. It wouldn’t be too dramatic to say that it has changed my life.

But the road to get here was far from easy – in fact, it was long, and arduous, and fraught with wild animals. Yes, you read that right. Allow me to explain:

My personal path to recovery began with an exhaustive telephone triage with a specialist mental health nurse, at the end of which she signed off with: “Don’t worry, we will get you help.” My shoulders immediately felt lighter.

After decades, might I finally understand the misfiring of my brain? After years of self-doubt and recrimination – a personal journey filled with anxiety, depression and an endless and debilitating fog of internal, self-berating noise – might I finally have answers?

I’d become so used to the lens through which others saw me that I embraced it with full shame: messy, disorganised, unable to remember if I’d completed important tasks (like locking the back door – thanks to my ever-distracted mind), that I couldn’t imagine a world in which I might not actually be “the chaotic one”.

I had never been able to understand why everyone else seemed to cope so much better than I did.

My school reports were frustratingly consistent: “careless”, “daydreamer – but shows great potential”. That last one was the sharp stone in my shoe. I pinballed between jobs and wildly different sectors – arts, banking, tech – but somehow, never really found my niche. All too often, I’d bail before I’d progressed up the ladder. And I was so terrified of rejection that I didn’t have the confidence to pursue my passions, either (writing, painting, photography).

I tried hard to fix things. I got up ten minutes earlier each day after failing to shift the same pile of washing. It felt Sisyphean. Absurd. The GP had prescribed anti-depressants, but they didn’t help. Something else felt “off” or “different” – I rarely had the perseverance to complete even the things I loved; passion projects abandoned at the first signs of imperfection or boredom.

The possibility that this could be explained away as ADHD was life-changing (the unwelcome alternative, of course, was that I was just a bit s***).

But with NHS mental health services stretched beyond breaking point, I was under no illusion that it would take years for a diagnosis. Going private wasn’t an option – and my heart sank after that initial call. I pictured waiting months and months for help and feeling increasingly dejected. So, when I was told by the same nurse that I’d be getting the help I so desperately needed – that a psychiatrist would see me in just a couple of months – I was stunned. Buoyant.

The letter of referral never came. They lost me in the system. When I did finally get another appointment, not even a burst pipe and a gas leak that had closed the main road, making my regular journey impossible, kept me from being on time.

Except that even when I made that renewed appointment – and despite obsessively checking I was in the right place, at the right time – I was told I wasn’t in their system.

I couldn’t believe it. “Why are you doing this to me?” I waved the letter they’d sent me and then burst into tears. It felt like being gaslighted. But if you can’t have a meltdown in a mental health unit, where can you have one?

The practice manager sat me down with a glass of water and not only promised she’d personally make sure this didn’t happen again but that the Holy Grail – an audience with a psychiatrist – would be rebooked for a fortnight’s time.

Even the day of the rescheduled assessment didn’t kick off calmly. Getting ready to leave, the frantic scrabbling I could hear in the living room turned out to be a thick tumble of dog, cat and squirrel. Although I managed to separate them, there was no time to remove the poor, terrified rodent, so I left it clinging to the folds of my net curtains and taped up a sign: “Keep shut: squirrel inside!” I sent warning texts to the kids.

Finally, I hurried to the clinic and put thoughts of domestic carnage to the back of my mind. I explained to reception that I needed someone to see me quite quickly as there was a squirrel destroying my house; so if they could speed things up, I’d be grateful. I flashed them the image on my phone and they seemed relieved I wasn’t hallucinating.

Then, at last, my assessment. During a lengthy 90-minute process the psychiatrist vindicated any remaining doubt that I might not have ADHD; that I might just be flawed or just not trying hard enough. I had my diagnosis.

But with it came emotions I didn’t expect: grief, for the loss of an easier, more fluid life-path; remorse and sadness for all the opportunities I’d wasted, missed or been unable to take. I cried when she prescribed me drugs.

Back at home, the squirrel had ominously disappeared, despite closed windows and doors. After eventually being discovered in the recesses of a baggy sofa, it catapulted for the safety of the bookcase, where it stayed until evicted by the gentle nudge of a broom.

I look back on it now as a metaphor for the clarity I was desperate to seek. The desperate chase for answers. The mad clash of thoughts in my racing brain, the panic that I might not be entirely… OK.

My diagnosis ended all of that doubt and fear. Some people buck against labels, others claim there are “too many” adults being diagnosed with ADHD; as though anyone who knows how it feels would choose it.

The medication I was given, Elvanse, worked. I even took a career break to paint. For the first time in my life, I was able to concentrate obsessively for hours, an unimaginable breakthrough. I felt “sane”, for the first time in as long as I can remember.

Until now – and a worldwide shortage of the very medication that changed my life. And with it, a jump back to chaos: a whirlwind of rationing and a frantic search for more.

To stay positive, I often look at the image of the desperate squirrel on my phone – stuck inside, clinging for its life, trapped. And I realise I know exactly how it felt.

Lucy Johnston is a writer, artist and photographer