What Is ADHD Really Like?

Rough canvas with thick strokes of red, orange, yellow, blue and cyan paint

I have ADHD. A lot of you already know that, but for those who didn’t: now you do. I reckon most everyone will have some kind of idea of what ADHD is. And most people will now have an idea of what kind of person I am based on that information.

Since we’re all human, we all have certain preconceptions and even prejudices about others. That’s normal. But I’m going to tell you that a lot of those preconceptions and prejudices could very well be inaccurate.

When people think of ADHD, they have a certain set of things in their heads. But in my experience, those are not the things ADHD people would use to describe their experience. To illustrate this, here is a video of a bunch of ADHD-ers sharing what it’s really like for them.

How many things did you hear that you didn’t expect? How many things didn’t you know about yet? Or did it all sound familiar? Maybe you have ADHD yourself. Or maybe you know someone who has it. You might’ve already learned about what ADHD really is and what kind of effects it can have on someone’s life.

Maybe this is new information, but it still sounds familiar, and you’re now questioning whether you might have it yourself. But before we get into what ADHD actually is, let me share my own story.

My story

I got my diagnosis just under a year ago, in October 2019, when I was 25. For 25 years, I had been struggling through life. I did not know why I couldn’t function as well as my peers despite my high intelligence, despite my giftedness. My grades were fine, but I knew even then I could’ve done better.

If I was as smart as people said, and had as much potential as people said, why wasn’t I performing that well? Why, if I had less trouble understanding concepts in classes than some of my classmates, and didn’t have to study as hard to get a passing grade, did I still get lower grades than they did?

I remember I was always mystified when classmates told me how they stayed up all night to study for something. I used to think my classmates had actual superpowers when they told me they spent three hours on their homework.

Meanwhile I just couldn’t bring myself to do it. Despite all my intelligence and all the high hopes my parents and teachers had for me. I sat there, behind my computer, doing nothing productive for hours on end. All the while beating myself up internally, on the verge of crying. Because I just couldn’t seem to get myself to get started on homework.

The gradual decline at high school

In the beginning of my high school years, my grades were on fire. But as the years passed, my grades dropped, and my classmates caught up to me and started to surpass me. It baffled me. According to my IQ, I was supposed to be among the top 2% of the world. But my grades, and by extension myself as well, were falling behind.

There were many other things going on too. My undiagnosed autism, and my steady group of friends of six years slowly starting to discard me, leaving me feeling abandoned, unwanted, and alone. But with every passing year, and with every new grade, I started to doubt myself more and more.

Increasing self-doubt

Was I really that smart? Had they made a mistake when they measured my IQ? Were people just saying I had potential just to cheer me up or motivate me? Why, if they all said I was so intelligent, was I performing so underwhelmingly?

The only reason to still believe a little in my intelligence was the fact that I didn’t have to study as long for similar grades. I could often get away with not doing much homework at all. And considering my timetable, that was arguably still impressive. My timetable that consisted of five languages alongside math, physics, chemistry and biology.

For my final exam for math, all the effort I had put in was half-assed reading a summary of the material in the hour in between my Greek exam and my math exam. And I got a 6.1/10.

But my peers often did better, getting 7s and 8s and 9s. Because they possessed the superpower to study for their exams and put in time and effort for it. And even though I didn’t have to work as hard for a passing grade, I still felt like the failed one. I still felt like they were better than me.

Breaking down at university

I went on to university. There I had to drop out of Psychobiology after just a few months because I suffered a burn-out and a depression. I was 18 years old.

I switched to studying Greek and Latin Language and Culture, mostly because Greek and Latin were my best subjects in high school, and because I wanted to keep studying and didn’t want to give up.

After a year of struggling – which isn’t surprising considering the burn-out and the depression – I dropped Greek and continued by focusing on just one language.

Normally, it takes three years to get a bachelor’s degree in The Netherlands. I took six.

For six years, I had trouble handing in assignments on time (or even starting them on time). I had trouble organizing what I had to do and planning accordingly. I had a huge amount of trouble getting started on any task. And I was still thoroughly convinced that everyone around me possessed actual superpowers.

I passed most of my tests, but most of them I passed on having a good memory of what was said during lectures, and being able to logic my way through the language.

The dreaded thesis

It took me 1.5 year to finish my bachelor’s thesis. And I swear that at least 75% of that time was spent procrastinating, fretting, beating myself up, feeling terrible about my apparent inability to just get that shit done, and even more procrastinating. I managed to scrape together a thesis that was worth a measly 6/10. Was I disappointed by that grade? Not at all. I wouldn’t have even given it a 6 myself.

As soon as I was done and my final grades were in, I left everything behind. Regardless of my immense passion for the language and the culture and the history, the subject had grown to be traumatic to me. It had been a constant source of self-doubt and self-loathing. That thing that’s been looming over me that I’m apparently not equipped to handle. It was a mess. I was a mess.

Getting the diagnosis

Later – just last year, to be precise – I learned that I had ASD (Autism Spectrum Disorder) and ADHD. Suddenly I could explain it all. Suddenly, I knew what had been the bane of my existence for those 25 years.

All those problems I had run into, the massive inability to get myself to work and to be productive and active. I could trace nearly all of my social issues to my autism, and nearly all of my executive functioning issues to the cocktail of autism and ADHD. Those social issues had left me with something that hasn’t been diagnosed but lies somewhere in between social anxiety disorder and avoidant personality disorder.

But finally I knew. My peers in school and university didn’t have superpowers, my executive functions just didn’t develop as properly like theirs did.

After my diagnosis

I’ll be honest, I went through a serious mourning period at first. I cried over all those wasted years, I cried over all that I could’ve achieved if I had known sooner. I cried over all the hurt and fear and self-loathing that I had developed over the years, not just feeling different, but broken and defective.

But after I had gone through my mourning period, I felt uplifted. I realized that I live in a world that wasn’t built for me, but I also realized that it wasn’t built against me either.

While at first those labels partly confirmed my fears of being broken and defective, after a while I started wearing them as armor. I started taking pride in knowing myself and knowing how my brain works. And I actually have fun trying to figure out how to work with my brain instead of against it. It’s definitely still hard, and some things still hurt, but I’ve picked up the pieces, started wearing them as my armor, and integrated them as part of my identity. Now, I never shy away from telling people about it. This is who I am, so why should I pretend I’m something else?

So what is ADHD actually?

At its core, ADHD is a neurological issue, a neurodevelopmental disorder if you wish to phrase it that way. That means that our brains develop in an ‘abnormal’ way. The most important issue is that our brains have particular trouble making and using the neurotransmitters dopamine and norepinephrine properly. But I’ll get into that later. First, I want to clear the air.

When I say ‘abnormal’, that implies that there is a ‘normal’ way for a brain to develop. Experts estimate that ADHD affects 5-8% of the global population. That is certainly not the majority, no. But instead of saying that people with ADHD are ‘abnormal’ and that people without it are ‘normal’, I personally prefer to use the terms ‘neurodivergent’ and ‘neurotypical’ instead.

The all-important dopamine

So what about those neurotransmitters? To put it really simply, dopamine is our reward hormone. It spikes when we expect a reward, and that spike motivates us to get into action. If the reward is satisfying, it spikes again, cementing that response for the future. If the reward is disappointing, there’s even a dip in dopamine. That means we won’t have the same spike in anticipating a reward again, and therefore we won’t be motivated to do it again.

Short example: you see a cookie, dopamine spikes because you expect it to taste good. If it tastes good, dopamine spikes again. And the next time you see that cookie you’ll be motivated to get it. If the cookie turns out to be disgusting, you won’t be motivated to get it next time.

Throughout evolution, this system has helped us survive. If we ate something nasty, we wouldn’t be motivated to go get it again. If we ate something delicious, the dopamine spike would ensure that we’d get off of our butts to go get it the next time we see it. It’s only when the anticipatory spike in dopamine crosses a certain threshold that your brain is motivated enough to take action. Your motivation isn’t just you, it’s the amount of dopamine in your brain.

Dopamine in ADHD people

In ADHD people, dopamine doesn’t function properly. Either our brains aren’t sensitive enough to it, or we don’t make enough of it. In simple terms, that means the expected reward for anything has to be a lot greater for an ADHD brain to release enough dopamine to cross that threshold and motivate us to take action.

It also means that the spike we get when we get the reward is lower too. So we’re less likely to repeat that behavior in the past since it wasn’t as rewarding as our brains hoped it would be. That’s why people with ADHD lean more towards behaviors that provide instant gratification. Because only those provide enough dopamine to keep us motivated. Taking action now for a reward in the future just doesn’t cut it for our dopamine-starved brains.

In the search for enough dopamine to satisfy the brain, it just keeps itself occupied. It’s constantly creating thoughts, hopping from one thing to the next, focusing on one stimulus and then another. Just because nothing truly motivates the brain enough to stick with it. That’s also the cause of our distraction: whatever we’re working on doesn’t provide enough of a reward to keep us hooked.

Executive dysfunction

The dopamine story is a rather simplified explanation. Like everything in life, it’s far more complicated of course. But it explains a huge amount of our symptoms, the majority of which are grouped under the name ‘executive dysfunction’.

Executive dysfunction includes anything from trouble getting assignments done on time, to actually getting yourself to start on a task, to planning and organizing, trouble accessing and utilizing your working memory, the list goes on.

While neurotypical people are more easily motivated enough to start on their assignments in time, it’s not so easy if you have ADHD. It takes a lot of time before the time pressure is high enough that we have enough dopamine in our brains to get to work.

Time perception and working memory

Neurotypical people have a good sense of when they need to start preparing to get out the door to arrive at work in time. But our sense of time is skewed, and we keep underestimating how long it takes us to get dressed and pack our stuff.

On top of that skewed sense of time, we have issues with our working memory. Our idea of which things we still need to do before we leave is cloudy. It’s only when we get started on preparing that we realize there was a ton more stuff we needed to do, and then we’re running late. That’s also why we’re so often late with assignments: we forget about half we had to do and think about it way too late.

Where neurotypical people can more easily just pick a moment and get started on a task, we don’t have enough pressure on a random moment of the day to stop doing what we’re doing and get started on the task. Unless there’s a deadline, the moment to start feels arbitrary to us. And no hour of the day feels like that’s when we should get started.

ADHD in children and adults

ADHD can affect everyone

Healthline published a pretty comprehensive history, so I’ll keep it short here.

ADHD started out as a disorder mainly characterized by poor impulse control and hyperactivity. It took about half a century before ‘hyperkinetic impulse disorder’, as it was known then, was added to the DSM-II in 1968.

In the 1980’s, it was classified as an attention deficit disorder. They realized hyperactivity was not a common symptom, so they created the hyperactive and a non-hyperactive subtypes.

It was first described in boys, who are more likely to be hyperactive, disruptive, and difficult to handle. It took them a while before they realized girls could have it too, but would present with different symptoms. Until that point, their symptoms were just shrugged off as character traits. And that comes with its own slew of problems.

As PsychCentral says, “women are less likely to be diagnosed because the guidelines used in assessment and dianosis have traditionally focused on males”. Just like most things in life.

Though all types of ADHD can present in all different kinds of people, there are some general differences. Men are more likely than women to present with hyperactivity. In women, that hyperactivity usually isn’t on the outside, but on the inside.

It goes without saying that the outward symptoms of ADHD are noticed sooner than the inward ones. So it’s no surprise that historically, women are far more likely to remain undiagnosed until later in life. Like me.

ADHD in adults

It also took scientists a while to realize that ADHD doesn’t simply go away when you grow up. As an adult, you face different challenges in life. For most people, the executive dysfunction becomes more painfully apparent. Now we have to live adult lives and do adult things, and we have way more responsibilities. So many more things to ADHD at, so to say.

As you grow up, you develop coping strategies to mask the things you’re struggling with in life. You hide those parts that you’ve learned to consider ‘abnormal’ with excuses and by evading problematic situations.

There is so much pressure from society to function normally, that it’s hard for people to speak up about their troubles. And because so few people speak up, people that struggle only feel more isolated, more abnormal.

And so, ADHD in adults often goes unrecognized, especially in women. But adult men also have a hard time, because they face even more pressure from society than women. Men have even more difficulty speaking up, In the US, men commit suicide over 3.5 times more often than women as a result.

Another issue is that, while ADHD has some common symptoms, there’s a lot of diversity. Just like autism, it exists on a spectrum.

I usually describe it as a barcode. Not everyone has the same combination of bars, and not everyone’s bars are the same width. The symptoms I’ve mentioned thus far are common, but there will be people who miss a few, or have a few extra. Some people’s symptoms will be worse, others’ will be milder.

What Is ADHD Not?

Something people with ADHD unfortunately hear a lot, is things like ‘you’re just lazy‘, or ‘you’re not trying hard enough‘, or ‘you don’t care about it enough‘, or one of the worst, ‘if I’m able do it then so should you‘.

Not only are these statements factually incorrect, they can also come across as incredibly patronizing and denigrating. Even though you probably don’t mean it that way at all.

First of all, you can’t look inside someone else’s head. You can’t see how hard someone is trying, or how much they care about something. You don’t know what’s going on in there, so stop making assumptions.

Second of all, people are very different. We come in all shapes and sizes, inside and out. What might be easy for you, might not be easy for someone else. So steer clear of the word ‘just’. That can already make the other person feel like they’re somehow defective or broken, since it’s so easy for you and so hard for them.

So let me be very clear.

We are NOT lazy.
We ARE trying hard enough.
And we DO care about it enough.

We can’t help it either

Our ADHD just impairs us to function the same way you do. We have a noticable, measurably deficit of functioning dopamine in our brains. We are literally physically incapable of executive functioning at the same level as neurotypicals.

For the love of all that does and doesn’t exist, never ever mistake this for laziness, or not trying hard enough. The truth is that we are quite possibly even trying much, much harder than most people. We are trying to conform to a world that values things that our brains suck at, through no fault of our own. Instead of just walking across an open field, we are wading through waist-deep mud to get to the other side.

If you tell someone with ADHD that they’re not trying hard enough, you’re telling them that their absolute best isn’t good enough.

Imagine you’re trying to run against Usain Bolt, and he’s just skidding along at half his top speed without effort. Then he turns around and sees you falling behind. You’re over there fighting with every fibre of your body just to keep up with him. How would you feel if he told you ‘you’re not trying hard enough’? How would it feel if he told you ‘you just don’t care about beating me enough’, or ‘you’re just lazy’?

And that doesn’t make us broken, or faulty, just different. We just have the dreadful misfortune of living in a world that wasn’t built to accommodate for how our brains work.

The daily struggle of having ADHD

We try to force our brains to focus and stay focused. We try millions of different ways to organize our spaces and all the things we have to do. But none of them stick.

We beat ourselves up when we realize we have yet again forgot to pay a bill on time. We’re fighting against the endless stream of trains of thought and distractions and eventually also frustration and self-loathing.

We think, ‘why is it so much harder for me than for everybody else?’, ‘why can’t I just get started on this task when it would only take a minute?’, ‘why does life seem so much easier for everybody else?’. Very soon the worst thought you can have pops up: ‘what is wrong with me?‘.

The trouble is that our struggle isn’t visible from the outside. Even the name itself, Attention Deficit Hyperactivity Disorder, completely bypasses what’s really happening in the brain of someone with ADHD. It only mentions what’s noticeable on the outside. All the outside world sees, is our failures and mistakes.

They don’t see the internal war that’s going on. How desperately we want to just be able to function normally, trying to just fight our brains hard enough to get stuff done that seems like a breeze to other people.

They don’t see how we beat ourselves up, how we start to feel like failures more and more. They don’t see how we start believing more and more that we’re ‘abnormal’, that we’re ‘broken’.

The damage of stigmatization

I’m willing to catch all the flak I might get from people who learn about my autism and ADHD and have (inaccurate) prejudices about it. To me, they are just opportunities to educate those people on what ADHD and autism really mean.

The fact that people like us receive so much shit for the way we are, like the statements about being lazy or not trying hard enough, illustrates that a significant amount of people simply don’t know what it’s like.

And that’s okay. You can’t expect people to be knowledgable on any topic under the sun. But it’s still very much necessary to change those stigma’s.

Those prejudices are, sadly enough, also the reason that people like me often won’t get a diagnosis until way after high school. Nobody, including myself, ever had an inkling that I might have had ADHD back then. I talked at a thousand miles per hour and my thoughts went even faster, but people just thought it was due to my giftedness.

No one could look inside my brain, so no one could see the churning chaos that was going on inside there. To the outside world, I wasn’t hyperactive, aside from my speech. Because of all the chaos in my mind I was always tired. I didn’t come across as super energetic.

They told me my inability to focus was due to just being bored, because the material wasn’t challenging enough. (It totally was, but my brain just spaced out).

I don’t blame anyone for not having seen it sooner. Society apparently wasn’t knowledgable yet on what ADHD actually is.

Why we should all learn about ADHD

But that’s I think it’s vitally important that we, as a society, learn to understand ADHD better. And not only ADHD, the same goes for all the other neurodiversity in the world.

Because, you see, people with ADHD aren’t broken. We aren’t defective. We’re not the majority, no. But neither are people with blue eyes (apparently we’re only 17 percent of the global population). And nobody’s telling us our eyes are wrong.

People like me who struggle with ADHD need to know they’re not alone. 5-8% is actually quite a lot. We may struggle with things most people consider ‘normal’, but that’s just because society isn’t built for us.

That doesn’t mean, however, that there’s something wrong with us. It’s just a mismatch between us and the society we live in. But if we can find more acceptance, more understanding, and a little more patience here and there, this world is ours just as well.

Speak up!

Please, if you can, please speak up. The more we talk about it, the more we normalize the existence of ADHD. And the more we talk about it, the better others will be able to understand what we’re going through. For example, we can talk about it by using spoons and pots as analogies for how we feel, like I described in an earlier blog post.

If we manage to normalize ADHD as part of the broad diversity of humankind, we’ll never have to feel broken again, just different. There will be more room to explore the many wonderful benefits of ADHD, of which there are many!

And the more we talk about it, the more people will be able to get a diagnosis and proper treatment in time. If we share our stories, our experiences, maybe people with undiagnosed ADHD will recognize themselves in it, and they’ll be able to seek help. If we’re open and honest about ourselves, fewer and fewer people will have to deal with discrimination against neurodivergent people.

My hope for the future

My hope is that people with ADHD will never again have to hear that they’re not trying hard enough, or that they’re lazy, or that they apparently don’t want it hard enough.

I hope that people will never have to go decades feeling different and abnormal, without getting a diagnosis that could help them get a handle on how their brain works.

I hope that, instead of considering ADHD as abnormal, we learn to consider ADHD as just diversity in society. As people who we, as a society, need to help instead of ostracize, so they can enjoy life just like everybody else. And the first step towards that, is spreading awareness, understanding, and acceptance.

For more information, I recommend this TEDtalk by Jessica McCabe from the YouTube channel ‘How to ADHD’.

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