The first thing a lot of neurotypical people (NTs) say to me when I tell them I have ADHD is “ah we all forget things sometimes” or “it can’t be very serious if you weren’t diagnosed until an adult.”

My favourite is always, “but you finished writing 20 books” which doesn’t show I don’t have ADHD, it shows how badly the ADHD diagnosis system is skewed in favour of teenage boys who are failing school because when that’s all professionals see, that becomes their definition. Thankfully, that’s finally changing and THAT is why it took so long to get the right diagnosis.

So here’s what it means to have ADHD. I’ve written this for the neurotypicals who can’t imagine life without all the fully-functioning parts of their brains. It’s written in the first person because I can only speak for myself and my own ADHD. Like autism, you haven’t “met autism” you’ve “met one autistic person” and the same is true of ADHD.

At school, they called me “hyper” or “hyperactive” or “emotionally immature” and teachers were concerned about this but my work was decent and I didn’t throw chairs so they never took it further.

ADHD means forgetting to give your baby daughter her medicine for a month because it has to be kept in the fridge and you keep forgetting it exists, so you have to get it prescribed again (and pay again) because she still has that rash.

ADHD means phoning the doctors about that medicine and finding out you forgot to apply for your daughter’s medical card so she can’t get any free GP visits anymore even though she’s entitled to them.

A normal person will say “why don’t you just set alarms?” like you’re terminally stupid. But I don’t have executive control. I don’t have that part of my brain that tells me to do stuff like that. I can observe on an intellectual level that this would be logical, but if my brain doesn’t prompt me to do it, I won’t get it done. Or I’ll set an alarm, then when it sounds, I’ll turn it off with no recollection of what it was for. Or I’ll turn it off meaning to do the thing, get distracted and remember days or weeks later.

ADHD means I spent all afternoon writing this instead of the zillion things I needed to do while my son was in nursery.

ADHD means I really struggle with pointless rules. Trainers to school? Why not? They’re comfortable. Why can’t you eat and drink in the classroom? Food and water literally make your brain work better! Some people claim teaching is great for their ADHD. For me, teaching destroyed me. I have almost no confidence left because I am a flamingo-shaped peg trying to hammer myself into square hole after square hole to earn money to eat and drink, and not fulfilling my potential in anything.

ADHD means I can’t do time management. I am usually in a near-panic over being late. I am rarely late. I usually show up within a few minutes of when I was supposed to. But when I get ensnared by someone who doesn’t want me to leave, maybe a lonely relative or in-law, I can end up hours late. This has damaged relationships with friends and family members like my sister who is really over the top about people being on time for things.

ADHD is a misnomer. ADHD is a disorder as big and complicated as autism spectrum disorder — in fact, some people think they’re the same big spectrum, manifesting in different main ways at the time of diagnosis.

ADHD includes a host of satellite disorders it shares with autism. I have sensory processing issues. When certain noises happen, my brain starts doing this (trigger warning, if you’re on the non-NT spectrum that video might be upsetting, it made me cry because it’s so realistic and seeing my own reaction, as an adult, enacted by a child was very hard to look at).

Sometimes I can mask and act like I’m ok. Sometimes I can’t. Sometimes I set out for the day thinking I can do this, then something happens and I can’t. I often complain of “too many” when I’m having a meltdown or shutdown. Too many noises. Too much sensation. Too many lights. Too many demands on my time and attention. Too many things I need to fit into not enough time. Too many expectations. And when it gets to that point, I’m curled up in my bed sobbing under the duvet. If I’m out, I’m leaving the shop/building where I’m having a problem. Abandoning my shopping trolley. Leaving my place in the hospital queue. Sometimes I just have to flee to avoid a big public embarrassing scene. I don’t want to draw attention to myself because that’s more sensory input. More demands. And when I’m in “too many” mode, I can’t focus. My brain is just scribble. I can’t have a single coherent thought.

Another issue my ADHD shares with ASD is stimming. I sing. I used to have a friend who told me over and over “shut the fuck up” every time I did it. So I stopped. Now I get embarrassed if anyone hears me sing. But I still wiggle my toes in my shoes or I draw patterns on the back of my thumb with a nail or I tap my teeth.

ADHD makes me say too much. I over explain because I’m used to being misunderstood. I’m used to people asking fifty thousand questions that seem irrelevant to me. I’m used to people laughing at my ideas because they don’t know what I’m trying to do. Children. Teachers. Adults. People with ADHD are very sociable but we can also struggle to socialize appropriately. We are creative but can struggle to create coherently. I struggle with boundaries — mine and other people’s. I am an extrovert at times and an introvert at others.

ADHD isn’t actually a deficit of attention so much as an excess of attention on the wrong things to the detriment of your life. Our capitalist society expects us to be able to turn our attention to the things it wants us to do. People with ADHD struggle with this.

Yes, everyone finds it hard to do stuff they don’t like. No, that doesn’t make my diagnosis invalid, it makes some NT people lack in imagination and perspective-taking to understand that some people struggle more than others with really basic shit.

For example, at school I spent most of my time drawing in the margins, reading, or staring out of the window. In lessons where we were allowed to chat, I’d spend most of my time chatting. When I got older, I’d sit in class or breaktime just writing stories. Writing and writing. I could not tell you what 99% of my classes were about but if you gave me a lesson title, e.g. Africa’s Savannah, I could probably tell you where I was sitting, what Emma’s highlights looked like, how much mascara each girl in the class was wearing, and what story I wrote during that class.

From one point of view, I’m not paying attention, but from another, I’m hyperfocused. This is ADHD’s biggest superpower AND downfall because when you’re hyperfocused on the wrong thing, e.g. computer games, you fail your A-levels. Unless you should have got A*s and get Es instead and move on through the system to fuck up in the same way over and over. Degree? Scraped a 2:1. PGCE? Failed it, resubmitted and passed. Masters? Scraped a merit. At every stage I should have done better but didn’t, but because we measure everyone by the same yardstick it’s hard to explain that to people.

ADHD’s biggest, most detrimental issue for me, however, is RSD: Rejection-Sensitive Dysphoria. Really, it should be listed as one of the main ADHD diagnostic symptoms but it’s barely given a thought in the DSM. It’s the most debilitating aspect for me. It stops me doing about 90% of the things I’d like to do, in case a rejection happens. Because when I feel rejected, I get dysphoria.

Dysphoria is… very hard to describe briefly if you haven’t felt it. It’s like psychotic, suicidal depression (I have a double whammy as I’m also diagnosed with Pre-Menstrual Dysphoria Disorder). It takes a lot to stay in touch with people who have pushed me away in the past. It’s also ruined my work life to the point where I haven’t had a real job in about 7 years, I’ve been self employed and not earning much because writing is all about rejection.

Case in point: I got told at 10:20am that a breastfeeding drop-in was happening from 10:30-12. I got there at 11:45. Rang the bell. Got told off by a random woman because “it started at 10:30 and no one came so the facilitator has gone home. You should have come on time”. But I came. I was literally there. And it was a drop-in. For mums with young babies. That I only heard about 10 minutes before it was starting. This is a rejection. I came to the thing, at great effort, and got turned away at the door. I went to my car and cried. I now can’t go back for breastfeeding support even if my boobs are falling off. That’s just one example. A NT person would not see the problem, and would probably say “don’t let it bother you” or “try again next week” but I can’t do that. I just can’t. It doesn’t work. Forcing myself to do something results in vomiting, diarrhoea, tears, excess time spent brushing my hair and, ultimately, in a bigger meltdown when a tiny thing happens because I don’t feel safe doing the thing now.

I can’t pull together all the thoughts in my head, they’re like little floating islands punctuating a sea of distraction. I work around it as best as I can to function, but that means I’m usually not doing stuff the way other people do. I can’t go on social media consistently because I get overstimulated by it. I am constantly drowning in a messy house and it really upsets me because I really do put the time into working on it, but I spend a lot of that time getting hyper-focused on one small detail at the expense of fixing the general, bigger picture.

Now add in hyperactive emotions. I was misdiagnosed with bipolar disorder and medicated (and that’s serious-shit meds) for five years. Mostly because no one was looking at the bigger picture, they were only looking at a small part of it. In ADHD, hyperactive emotions are what some people describe as “she goes from 0-100 like that”. Although IRL you’ve probably been sat at 99 for so long it’s become normal.

Yeah, and then I’m back down from 100 again 10 minutes later and trying to pick up the pieces. The “H” in ADHD is literally all about this. Hyperactive isn’t just bouncing on a trampoline like a Duracell bunny. It’s how that turns in on itself soon after, so you get negative moods. Impatience. You want everything to happen now, as soon as you’ve thought of it. Stress. Frustration. Snapping at someone then instantly regretting it.

This is the part that burns bridges. It scares me when I get like this. It scares me to talk about it because I know some people will make shitty remarks about it and use it to invalidate how I feel about stuff. That’s what they did when I had a bipolar diagnosis. But then, even talking about this will make some people judge me, and I know that. “Oh look, she’s got another mental health diagnosis. She’s such a hypochondriac. She’s always ill. She’s just like her mother.”

I see you. But what you don’t see is that I’m not just waking up and going, “hmm I know, today I’ll have a debilitating illness” I’m trying to find meaning and a workable solution, because I break everything I try to do in life. I don’t waste £400-a-pop on psychiatrists for the fun of it, I want to know what’s happening and what I can do about it.

Whether you are a “no labels maaaan” or “pro-diagnoses so you can solve the problems and move forward without letting it define you” sort of person, the problems caused by symptoms within the ADHD framework don’t get enough understanding.

It’s so much more than just being unable to “pay attention” on demand, but in our capitalist society, where time, attention (and even blood) is worth money to someone, and you’re effectively bled dry of time and attention until you retire, ADHD has been defined in a typically capitalist way that reduces it to only the parts that impact people’s ability to function as cogs in a machine.

Maybe some people aren’t meant to be cogs. Maybe we’re cams or that twirly stick that goes between them. Or the paint that makes them colourful. Or maybe we shouldn’t define ourselves by our role (or lack of) in making WEF members richer than they already are.

No shade on cogs. Most of my daily angst is about my inability to turn in time with the rest of the clock. It sounds all, “oooh listen to her, she thinks she’s special” but seriously, no, if that’s what you’ve taken from this then you’re not even trying to understand why this is a debilitating problem.

And if you’re frowning and thinking, “doesn’t everyone have these problems?” you might want to consider, what if they don’t? What are the implications of that?