18th October 2024 Blog

ADHD & Me: Lived experience will make barriers fall

ADHD • Lived experience • Stigma •

In his second blog for ADHD Awareness Month, journalist and poet Max Wallis shares his journey to diagnosis and how to remove some of the barriers so many people face.

Max Wallis

Attention Deficit Hyperactivity Disorder (ADHD) manifests itself differently in different people. I was thirty-four when I was diagnosed, but the first hints were there from nursery, where the teacher called me “glass bottom” because I would sit on my feet and never keep still.

For years, despite eventually scoring 100% on my ADHD assessment criteria, I had been overlooked.

In high school, bullied for being gay, that hyperactivity, there from a child, turned inwards into a vortex of internal chatter. But it was invisible, I was invisible, and so was my ADHD.

This variance between individuals highlights the need for more research input from people with lived experience, allowing us to showcase our different stories so that others might find similarities and won’t have to go through the same things I did.

This understanding also reveals how quiet, insular men like me were missed in childhood. By celebrating the lived experience of life with ADHD, more change will follow.

ADHD stereotypes and misconceptions

For years, the stereotype of ADHD was a child terror at school causing bother. That stigma was so strong that I could not recognise ADHD in myself at all. I thought it was for “problem children” or, worse, I dismissed it as parents wanting to medicate their kids. How wrong I was.

The last decade has seen a major shift in understanding.

For a century, ADHD was predominantly considered a behavioural disorder, but we now recognise it as a developmental one with genetics at play—a disorder affecting the cognitive management system of the brain and how it manages its executive functions.

We know it affects women and girls differently, where previously there was a bias that only men had ADHD.

This understanding also reveals how quiet, insular men like me were missed in childhood. By celebrating the lived experience of life with ADHD, more change will follow.

This dismissal only frustrates those with ADHD in their attempts to access support. If everyone around us dismisses our concerns, how are we meant to believe it ourselves?

Systemic and personal barriers to diagnosis

Part of the issue lies in the healthcare system’s lack of understanding at the point of first contact with patients.

Many GPs dismiss concerns that a patient might have ADHD as symptoms of anxiety or depression or lifestyle choices.

This dismissal only frustrates those with ADHD in their attempts to access support. If everyone around us dismisses our concerns, how are we meant to believe it ourselves?

Psychiatrists are required to diagnose, but waiting times for assessment are huge. Getting a referral can often take years, especially when patients feel dismissed or unheard by their GPs.

In my case, it took private intervention to circumvent the system, which is not available to everyone. My parents had the resources, and I had already cost them a fortune navigating the chaos of my life.

It is crucial to address the systemic, financial, and personal barriers to diagnosis. Shame, fear, and self-loathing often hinder many from seeking help, alongside societal misconceptions about ADHD.

We need to have more trust in those who are meant to help and treat us. But that trust can only come from doctors understanding ADHD as patients experience it, rather than what TV and the media portray.

For years, I had postponed seeking a diagnosis. One of the most insurmountable aspects of unmedicated ADHD for me was inertia - the inability to start tasks.

Surely I’m just lazy?

Days before my assessment, my ADHD in full swing, I found myself pouring over evidence for the psychiatrist—school reports, parental anecdotes, and notes on my daily life.

“What if they just say I’m lazy? I can’t have ADHD. What if they think I’m just a drug addict? I mean, I was,” I fretted.

“You’re one of the most ADHD people I know,” my friend reassured me, especially now that I was no longer self-medicating.

“But it’s so much money; imagine if they just turn around and say I’m a failure?” For years, I had postponed seeking a diagnosis. One of the most insurmountable aspects of unmedicated ADHD for me was inertia—the inability to start tasks.

The slow road to getting diagnosed

That inertia was compounded by barriers in the healthcare system and missed opportunities.

Years before, I tried to seek help through the NHS pathway. I had been sitting there thinking about it for weeks, months, and possibly years, constantly putting off the thought of seeking help.

When I finally did, I was confronted with hard barriers that halted my momentum. This impatience meant I fell down at the first hurdle. I gave up in a state of paralysis and despair.

I felt rejected by the system, and it led me to believe there was no point in trying at all. After all, all evidence suggested I was lazy like everyone had told me all my life. Yet, given the right topic or project, I could work miracles in a short time.

Nothing made sense, except for what everyone missed. My parents had offered to fund a private assessment, but I kept delaying it, thinking my friends had it worse.

This fear of being called a failure or lazy was my biggest concern when I finally considered getting diagnosed privately. “What if… what if… what if… I’m just a waste of space?”

I was ignoring my over-reliance on substances to cope. This fear of being called a failure or lazy was my biggest concern when I finally considered getting diagnosed privately. “What if… what if… what if… I’m just a waste of space?”

“It was clear you have ADHD almost the moment I logged on,” my psychiatrist said after reviewing my evidence.

I was grateful my parents kept those school reports rather than discarding them, as I would have probably hidden them away in an attempt to “hidy-up.” Yet, I still worried about my past struggles with drugs and alcohol, my lack of employment, and my emotional volatility.

“That’s ADHD, Max. You have it very severe. You have combination type, which means it’s not all hyperactivity.” I was shocked. “So, did I score well?” I asked, only to hear, “You got 100%.”

Even in this, I was an overachiever. Yet I felt a crushing sense of worthlessness—along with a tiny smile from my school days that I had aced another test, but that test was just a validation of my life.

ADHD is expressed in myriad ways. It is a cluster of symptoms, with each individual demonstrating various facets of the condition. There’s no one spread of experience.

Different expressions for different people

ADHD is expressed in myriad ways. It is a cluster of symptoms, with each individual demonstrating various facets of the condition. There’s no one spread of experience.

One friend may not be as hyperactive as I am, while another’s energy can be overstimulating to be around.

“You can’t start things because your executive functions are out of whack,” my psychiatrist explained.

These functions control thoughts, emotions, and actions, impacting memory, planning, and self-control. When they are dysregulated, it affects emotional regulation too.

Suddenly, it clicked. It was as if a spotlight shone on my life, revealing the words “HE HAS ADHD” above my head.

Why hadn’t anyone told me this sooner? I could have looked it up, but without the desire to do so and the ability to overcome inertia, I wouldn’t have. It was only after hitting rock bottom that I finally began researching ADHD extensively.

Many people spotted my ADHD before doctors did - my therapists, my friends. But not those who had the power to enact change in my life.

Barriers must fall

What prevents us from getting diagnosed are barriers everywhere and a severe lack of understanding.

A lot has changed since I was at school, getting bullied for being gay. The systemic failure of the education system under Section 28 – a Government Act from the ‘80s forbidding the teaching or mention of homosexuality in schools – continues to affect me at age 35.

I presented as anxious and depressed because I have a neurotransmitter deficiency: I don’t have enough stimulation in the form of noradrenaline, nor do I have enough dopamine, which registers rewards.

No wonder I was anxious and depressed: I couldn’t do anything, and nothing, no matter what it was, gave me enough reward.

Many people spotted my ADHD before doctors did—my therapists, my friends. But not those who had the power to enact change in my life.

Now, slowly, I am healing. I hope others will understand that it is okay not to have known all your life. By knowing now, I can build a life I will be proud of living.


Max Wallis is an award-winning poet, journalist, and writer based in Lancashire. He can be found on Instagram at @maxwallis.

Read his other blogs for ADHD Awareness Month 2024 here:

Read Max's first blog here