Late diagnosis of ADHD: Kayla's story

It’s been less than a year since I received my ADHD (attention deficit hyperactivity disorder) diagnosis. I'm 33 years old and I'm only just beginning to understand how much the disorder has affected every aspect of my life, education, relationships, career and identity.

ADHD can be insidious when left untreated; it leaves you feeling exhausted, frustrated and hopeless – that no matter how hard you try, you can never quite reach your goals or keep up with your peers.

ADHD is a neurological disorder that impacts the parts of the brain that help us plan, focus and execute tasks. Symptoms are wide-ranging and not everyone will present all symptoms, nor in the same way. But the common ones are hyperactivity, inattentiveness and mood instability – with a whole array of other symptoms and side-effects.

Unnoticed with unfulfilled potential

When people think of ADHD, they often envision the stereotypical hyperactive child that can’t behave or sit still. I was the total opposite as a child. I was a daydreamer and spent more time staring into space and doodling than doing any actual work at school. This is probably why my ADHD went undiagnosed for so long; when you aren’t acting out and causing a scene, people tend to simply not notice you. Every year, teachers would say the same thing: she is quiet, she needs to apply herself more, she is lazy, she is not reaching her potential.

The truth is, I never found anything very engaging and learnt that if I just pretended like I was paying attention, it was relatively easy to coast by. When I did find an interest in a subject, I felt too restricted and unable to explore it in the way I wanted, and this led to a lot of frustration and often resulted in me giving up entirely.

My child and teenage years were spent internalising what people said about me – that I was lazy, different and stupid. There was a study published by Michael Jellinek in the 2010 Clinical Psychiatry News; from observations at school, the article suggested that ADHD children experienced up to 20,000 more negative or corrective statements than other children.

Low self-esteem

It’s no wonder my self-esteem into adulthood was always incredibly low; I felt that no matter how hard I tried, I was either destined to fail or embarrass myself, so I stopped trying. I did the bare minimum and the result was a very bitter and isolated adult with no real prospects or strong relationships. To get by, I developed terrible coping methods: overworking, perfectionism and often using the fear of failure as a driving force to motivate myself.

This worked for a while. I was getting by on spite, hate and anger often directed at myself. I thought I had finally done it, I thought this was how everyone did it. I was finally meeting the expectations of everyone around me; what I didn’t know was that this lifestyle was completely unsustainable.

My decline was a slow process – there was no single significant moment. It started with me impulsively quitting a good job in the field I enjoyed, because I believed I could do better. I spent the next three years chronically unemployed, only staying in work sometimes for as little as a few weeks. I spent my way through my savings on frivolous things, mostly takeaways. I impulsively moved in with someone I had been dating for only a few months. We stayed together for almost three years, but the relationship was extremely unhealthy and not good for either of us.

And then the global pandemic hit. I moved to Brighton a few days into the first lockdown, heartbroken, exhausted, penniless, alone and deeply depressed – and I couldn’t see any hope for the future. I had often sought help throughout my life; I would speak to my GP, but anti-depressants never seemed to work and no amount of cognitive therapy ever helped me to improve.

Towards diagnosis and hope

I was at the end of my rope, until one counsellor finally noticed the signs of ADHD and suggested I get assessed. At first I dismissed it, but since we were all stuck in lockdown, I finally had a chance for some real introspection and I began to identify with – and relate to – the experiences many people with ADHD have. I was still unsure, but to my surprise during my ADHD assessment, the doctor told me that the paperwork and tests provided had already convinced him that I had ADHD and that the in-person assessment was more of a formality to confirm. I had no idea it was that obvious.

For many people who receive a diagnosis later in life, there is an enormous sense of relief and vindication that this whole time you weren’t the problem. But there is also an equal amount of frustration and sadness that it took so long to learn that I wasn’t lazy, or stupid. I just needed support. I don’t blame anyone – ADHD is difficult to diagnose, but I do often wonder about the life I could have had if I had known sooner.

The past year has been a whirlwind of research and learning how to be kind to myself. My depression and anxiety have become far more manageable and with the help of stimulant medication, I finally have the energy to enjoy my hobbies, to perform well at work and have time for friends and family. I still have a lifetime of self-hate and bad coping methods to unlearn, but for the first time in my life I actually feel excited about the future.

Thanks to Kayla for sharing her story. Kayla is the chair of West Sussex Mind's Equality, Diversity and Inclusion co-production panel. Find out more about their work here.