sorry wrote this so fast, is full of crap errant commas, random apostrophising. And no pictures. Hope you get the gist.
Two weeks ago, on a Monday, I woke up after a shocking night’s sleep and knew I had no ADHD medication. I lay in bed, my heart and gut so heavy I could barely peel myself up out of bed. I was already tired, but without lisdexamfetamine I’d knew I’d be fucking useless: anxious, emotionally pulled this way and that by gut feelings, ideas and thoughts none of which especially serve me.
I woke with the dread I used to feel after a bit night out. Monday hangover type feelings, except I’d drunk nothing. How can I get out of bed and get through the day without some my dopamine support drug.
Almost immediately, I groped around for my phone, something I try to avoid doing until after lunch for the sake of my brain’s better functioning.
The phone. The fucking phone. After leaving hateful comments under news articles, the phone is the cheapest scrolly scrolly shit Temu dopamine available. It’s disgusting, like sniffing glue. I scrolled until I truly hated myself fully, had metaphorical sores all round my nose. Normally I’d get up, go outside, make coffee (add some C8 MCT oil and creatine to for my brain), do a little bit of exercise, pick up dog poo, listen to the Today programme. You know, it’s not writing War and Peace but as an 8am activity, it beats 90 minutes of doom scrolling in a darkened room. I hate myself.
Eventually I get up, albeit on my knees, wondering why I continue to exist on this planet, missing my rent, alone, old, agitated.
Eventually I get up, albeit on my knees, wondering why I continue to exist
The day is a constant assault of thoughts that feel like self harm, but I am not inactive. I was very busy doing other things: getting exotic flavoured homemade kombuchas (mango and lime, ginger, plain) going on the second ferment that adds the fizz. I’m making money (dog money, that is, blend lamb’s liver, oats, meat, egg, egg shell, baking soda and stock til smooth and bake for 40 minutes at about 180°). A kefir made with half cream half milk. I tidy up in this strange way that seems to make the house messier and full of shoes.
Am I mad. I thought. Or dementing? The tiredness didn’t help. I’ve never slept well, not since I was a baby. It’s common in people diagnosed with ADHD. The drugs do work, it’s the tiredness that just makes things worse.
I’ll spare you the misery memoir. In short. I really missed my daily dose of Elvanse.
The taxing task of the med-free day drew to a close and I went to bed ecstatic that 40mg of Elvanse donated by a friend was waiting for me to pop tomorrow. Oh Christ, I thought, I’m hooked, I am “addicted to the meds” as people like to say. I am hooked on stimulants the way a type I diabetic is hooked on insulin.
Sounds awful that, doesn’t it. Comparing myself to a diabetic who would die without insulin. But people with ADHD do die, if not by suicide, then earlier: misadventure, or of illnesses built in an untreated ADHD past of substance abuse and risky and harmful behaviour. It’s not the same as T1 diabetes, which kills people very fast; but it also is, a little.
Then again, perhaps it is a myth. A made up thing. Not a pathology at all. Just “useless” people.
IS ADHD A MYTH?
Is ADHD a myth? I’d like to know if it is because for two years or so I have dragged around these four embarrassing letters ADHD after my name. If I wasn’t a journalist and unfortunately filed under, “unfiltered woman who will cannibalise own life in print” on editors’ Rolodex, I would not have gone public about this, maybe mentioned it to no one. 75% of my immediate family’s reaction ranged from ker-ringe to amused indifference. Over 50, make that 100%.
It is not an identity for me, it does not make me proud, it’s a pain in the ass and a shameful one at that. The only pluses to being diagnosed are 1/ the drugs, 2/ the drugs, 3/ the drugs, and, 4/ understanding the neuroscience of me a bit better. For most of my adult life, what a psychiatrist would diagnose as ADHD, was, for me, simply a regular question of, ‘Why are you so useless at life?’
When my ex and I split up, he said, “You are completely useless.” He even helpfully wrote me a list of reasons why I was completely useless, probably written with help from the secret girlfriend he was trying to get pregnant, M___e G__t.
What struck me about the list that she, M___e G__t, and him, (“Daddy”, as she called him) wrote together about my uselessness is that it all arose from very ADHD stuff: impulsivity, time blindness, risky behaviour, restlessness, financial idiocy…
Let us not go on. I sound quite angry and bitter. And I am. My ex did not say to me, I have met someone else and I want to have a baby with her, he said, you are “useless”, he said you don’t have ADHD, you just need to buy a deskplanner and try harder. ADHD is just an excuse for being, “Useless.”
And I thought that, on the day without the meds, about once a minute or so. Useless. Completely useless.
The drugs provide relief. I love them. Not saying, “You’re Useless,” to yourself repeatedly is just one of the benefits of taking ADHD medication and preserving what little dopamine there is in my brain so that different brain regions can communicate better.
If you think ADHD is a myth, and many people do, including my ex, and many of my well-educated colleagues on the broadsheet newspapers, is it OK for us to keep the meds. And just help a useless person be less useless? Is that OK, please? I’d like to carry on taking them because they work at treating whatever it is I have, a myth, uselessness, ADHD? Don’t really care. Just let me have those drugs.
People are not afraid to remind me of how bad ADHD’s largely stimulant class medication is. Even my fellow attention disableds tell me not to take them every day. These are a demonised class of drugs. Among these ADHD drugs are bad drugs class of people are a few psychologists and medical professionals with psychiatric training.
I had one staying last week actually who likes reminding me taking lisdexamfetamine is “load” on my body’s nervous system - it keeps my body activated and unrested.
People do so love to lecture, don’t they
I didn’t like to tell her about the unbearable “load” that came with my previous medication: coke, booze, toxic procrastination, fags, tonnes of crisps. Nor about the great “load” on my sympathetic nervous system that came from listening to her sermonising on a medication that has radically improved the quality of my day to day existence, my ability to function and stability of my mood. People do so love to lecture, don’t they.
Finally, we reach the point at which I will discuss C4’s documentary
Another priggish psychiatrist popped up this week to frighten parents and kids with scaremongering about these naughty and dangerous drugs we use to treat a myth.
The Channel 4 ADHD documentary, The Great ADHD Myth? was authored by Dr Max Pemberton, who believes ADHD is a social construct. Meaning, a condition that aims to medicalise behaviour that is inconvenient to society with its need for a compliant and easily controlled school population.
Dr Pemberton trundles out nature, exercise and a healthy diet as all ADHD kids need to thrive and pay attention to their lessons. And takes a kid off meds as proof of this. Ta da.
I know more than a few people who believe this social construct thing. It takes many forms, of which some I’m sympathetic to - in short, we are not animals designed for this modern world and the cost of living is not such we can go at our own pace. I might write a book though.
It’s been much discussed, so I will leave it here. Far more illuminating was the cover story of the New Scientist that week, on how female hormones interact with ADHD and increase women’s sensitivity. Especially during, as the writer, Caroline Williams says, during “Major hormonal shifts…[are] periods that exacerbate ADHD symptoms leaving chaos in their wake."
Oestrogen levels fall during menopause, dopamine drops with it. The academic OG on this is Sandra Kooji. Post partum, certain points in a cycle, and especially during menopause, the ADHD myth gets worse.
The roots of all this denial of ADHD’s credibility as a diagnosis go back to the anti-psychiatry movement currently enjoying an orange renaissance in the US under Donald and his health secretary, RFK. Wellness-fixated, peptide-poking, former-heroin addict and coke dealer turned enthusiastic anti-vaxxer, RFK has mooted treating ADHD by sending kids to live on organic farms.
I mean, we could all benefit from a few weeks in the country, but as a treatment for neurodivergence it’s somewhat meagre in scope and won’t fix the underlying neurological issue of dopamine dysregulation. If it did, I’d be delighted to take some schedule 2 organic carrots instead of Elvanse.
Using the word “myth” to describe any mental illness is an in joke for psychiatrists. In 1968, the giant of 20th Century psychiatry, Seymour Kety, published some pretty definitive evidence on the role genetics play in schizophrenia. It established what we now know, that many mental health conditions including ADHD are highly heritable, like blood type, how old you are when you enter menopause, eye colour, or whether you can roll your tongue or waggle your ears.
What this means is mental illness is an illness and not just a snap out of it imagined thing.
Regardless, some psychiatrists continued calling schizophrenia - and mental illness generally - a myth, and regarding psychiatry generally as coercive control over patients who didn’t fit the societal norm.
The big name in this movement was the psychiatrist Thomas Szasz who said schizophrenia was a myth and ADHD was simply “problems in living” and an excuse to chemically control naughty boys. Kety famously said to him: “If schizophrenia’s a myth, it’s a heritable myth.”
“If schizophrenia’s a myth, it’s a heritable myth”
The Szasz logic is applied to ADHD in the C4 doc: that it is effectively largely just normal kids and people whose personalities are not thriving in our culture, that are broken by our era of screens, sitting around all day, crap ultra-processed food, sausage factory teaching methods (see Pink Floyd’s Another Brick in the Wall, Part 2) and unnaturally low rates of physical movement. So, the logic goes: it’s not the child that has a broken brain, it’s a difficult kid versus a culture that can’t accommodate them.
ADHD is a social construct.
It’s a reasonable point, for all kids, not just the tricky ones. And one worth talking about.
But what of adults with ADHD, or women whose condition gets significantly worse at menopause when oestrogen declines, with its crucial role in making dopamine - the messaging molecule so implicated in ADHD’s symptoms.
They, I suppose, also have problems in living. They are just middle aged inconvenient naughty boys.
Which leads me to another of the programmes reasonable points. That the rising awareness of ADHD has led to a public demand that has overwhelmed the NHS, and opened the market up for eager profit motivated private services, which do cursory assessments and give diagnoses and pills out on demand. Another important point and one far more worthy of our scrutiny, in my opinion anyway.
My point? These are interesting and in some ways really valid points of view to bring to the wider ADHD conversation. Perhaps doctors should be allowed to prescribe stimulants to all of us “problems with living” useless lumps (PWILUL) and we can do away with the label entirely.
There is a lot to recommend that too.
So, it might look like I‘m leaning towards TEAM SOCIAL CONSTRUCT.
However, I feel the need to defend ADHD against a large chunk of bloviators (mostly right wing, but there’s all sorts in the ADHD denialist camp) who insist it isn’t real. Meaning, it’s not just people experiencing problems at doing life.
Meaning, for those at the back hissing and tutting and rolling their eyeballs: THERE IS A PHYSIOLOGIGAL CONDITION UNDERLYING IT ALL.
The Times and The Sunday Times regularly despatch their top columnists, the late Rod Liddle (RIP, the funny hate speech legend), Hadley Freeman (an unexpected naysayer given she was for a long time a liberal Guardian writer and when younger so severely anorexic she was hospitalised so you’d think she had a more cogent understanding of the nuance of modern psychiatric evidence) and the avuncular kindly chap, Matthew Parris, who in so many words says what my ex did, that ADHD is a useless at life personality not a physiological condition worthy of pathology. Parris says ADHD is merely an “excuse” for failure, inadequacy and bad behaviour - people with ADHD are just useless people or disappointed people looking for a dog to eat their homework. Etc. More of that social construct argument basically.
Parris says ADHD is merely an “excuse” for failure, inadequacy and bad behaviour
My Dad believed this, a medical man, a significant person in the development of paediatric surgery, a man who went back to look at evidence throughout his life right up until the days before he died, a man who had considered becoming a psychiatrist. A man who believed that results in his own field of expertise should be written up as academic evidence, whether those results reflected well on him, or not, whether the outcome was good or bad.
Yet he never as far as I know took a look at the physiology of ADHD.
About three weeks before he died, he introduced me to two old medical pals sat beside his death bed, an anaesthetist and a fellow surgeon, and said, chuckling, “Have you met Kate, my eldest? She self-diagnosed herself with ADHD a few years ago.”
He admitted to me, he didn’t have any sympathy with this rising numbers who think they have ADHD and said, “It’s just personality. Though I do acknowledge you have been greatly helped by the medication.” (Adding the sly like kicker , “Though, of course, there are some people who think you’ve got worse.”)
The irony is that Dad was one of my informants, a term to describe the reporting of relatives and friends to the medical professional doing any credible ADHD assessment. My Daddy sent his report over to my assessor, Steve Taylor at the ADHD Specialists, and I was told that his report confirmed what Steve suspected: I had moderate ADHD, largely inattentive type.
This let Dad off the hook. For ages I thought I was useless at life because my parents had a messy divorce. But no, my adventures in ruining your life may well have been some crucial lack in how my brain functions.
There’s other stuff that we are learning commonly comes with ADHD. Hypermobility of joints, for example.
Is ADHD real. As far as we understand it as a matter of wide dysregulation that is largely caused by genetic differences, yes, it probably does. Do I have it? I don’t know. An ADHD specialist managed by a very eminent professor at King’s College diagnosed me. I spend some of my professional days now interviewing ADHD experts of world standing, the sort who see ADHD on brain scans and write government policy. I have leafed the reams and reams of academic literature that confirm ADHD is a biological condition, that ADHD brains are physiologically different. That it’s real and medication helps protect a person from all kinds of harms and costs to self, to family, to community and society.
The thought, ‘ADHD is a myth and I’m just useless’, still squats in my consciousness and makes me feel, well, just useless.
There is a large bank of data now to show untreated ADHD poses greater risks to an individual: lifespan, human relationships, financial, professional, abuse and abusing, criminality, suicide and all kinds of health issues from obesity to addiction to sexually transmitted disease.
Despite the overwhelming evidence, the thought, ‘ADHD is a myth and I’m just useless’, still squats in my consciousness and makes me feel, well, just useless. I suspect I will always think it.
Kids with ADHD tend to carry an increased likelihood of experiencing shaming as kids, and they grow up to internalise that shame. Like homophobic gay people, they carry a lot of shame and worthlessness.
All the ‘ADHD isn’t real’ voices, leave me feeling two things. One, a need to write a furious evidence based defence of the condition, and also many shades of cringing shame that I have to talk about ADHD, and that really I just have “problems with living” and being “useless”.
If ADHD is a myth, then I and a couple of million other Brits are simply inadequate people looking for an alibi.
🧠
Of course kids should be outside and moving more. Moving around helps ADHD brains. Moving around helps all of our brains. It’s not a cure for ADHD/problems at life. As Dr Jessica Eccles, Associate Professor in Brain-Body Medicine, Brighton and Sussex Medical School said, when answering the programme’s Robert F Kennedy-like proposition that being in nature sorts out ADHD, “Short exposure to green space and physical activity does measurably improve attention and mood in the general population, including in children with ADHD.”
Sitting all day is really bad, for all of us. Schools, offices, taxi drivers. All of us should get up and move for five minutes every 30 minutes or so. I don’t want to shut down that conversation.
I am able to hold two truths in my head.
One can exist without negating the other.
The programme though, misrepresented the evidence so that two truths were not possible. Only their position - that ADHD is made up - came up credible. The bloviators in the papers do the same. They cherry pick a small evidence base, a single bellowing outlier expert, and ignore the greater mass of tens of thousands of highly credible papers written by quiet academics that say different.
The opinionating merely adds to the cycle of shame associated with ADHD, and I hear already that kids are stopping their medication because they’ve been shamed by popular opinion into thinking they’re just bloody useless and not neurodivergent. Poor little bastards that are statistically likely to have grown up experiencing a more hostile world anyway.
The C4 doc was an example of jigsaw journalism: that handy thing of cutting the interviews so that they not represent the views of the expert, and all the new stuff they know about the condition, and instead usefully provide a misinforming crucial piece in an argument that supports the programme’s agenda.
One of the experts, Prof Katya Rubia, quoted in the show has publicly described how her words were taken out of context, “largely misrepresented” and “cherry-picked”, to make it look like there is no biological basis for ADHD, and that is solely a social construct, when in fact she said nothing like it.
“There are differences in genetic, neurochemical, even immunological features .”
The medication comes in for some stick, a zombifying agent, yet, she says, “Substantial evidence from epidemiological studies shows that long-term use of medication in ADHD is associated with many benefits such as reduced rates of suicide, comorbidities, crime, traffic accidents, and substance abuse. The side effects are relatively minor and benefits are very large compared to other drugs in psychiatry.”
The show claimed ADHD meds kill personality. And to some extent they do damp down some aspects of self, sometimes, but that is a simplistic view. If what they damp down is thoughts of suicide, impulsive crazy behaviour, radically raised chances of self harm and - in my case - a near constant swing between wild enthusissm, aimless distraction, and frequently, an internal atmosphere thicker and blacker than treacle. There’s a mood stabilising effect to the meds that is the old cliche of blessed relief.
Is mental health somehow different to physical health?
Should T1 diabetics ideally not take insulin, if they can get their shit together. Of course not.
Why is mental health medication taken with a shooter of moral dilemma? Are we all anti-psychiatry really?
(One expert I spoke to this week, Prof Philip Asherson, described the drug’s outcomes as possibly the most successful in psychiatry ever. I have, for subscribers and nerds, a 3000 word edited transcript of our conversation below the paywall. In it he describes how certain patients, especially comedians and musicians, don’t take meds all the time. Sometimes you don’t need them, like, when you’re playing the Pyramid Stage at Glastonbury. Sometimes you do, like when you’re doing housework or anything for HMRC.)
We’ve all done it. Jigsaw Journalism. Especially when we can’t really stand a story up. It’s a very school debating society approach. One that seeks only to win, and not to listen or explore nuances.
This kind of division is normal now. It’s black and white. Babyish and founded on intolerance and contempt for others, rather than discussion and proper debate.
We are being driven into ideological herding pens by every type of media, from The Sunday Times to Tik Tok. It’s not just the obvious culprits.
If this kind of hateful division that comes with little rationale gives you a buzz, you may want to consider seeking an ADHD assessment. You know there are better sources of dopamine than rage bait and sectarianism. It’s prescribed by your GP.
I don’t hate the other side. I see their point of view.
I just wonder what the purpose of this debate is. We know ADHD is real. The academics in the field stopped debating this 20 years ago. It’s recognised everywhere, has an enormously strong evidence base and a successful treatment. Why aren’t we asking useful questions about how to get all those ADHD people on benefits into work and contributing to society. Or how to raise kids that are happy, flourishing and fit. Or how to ensure assessments are good quality? Or how to integrate difference into our society so that we flourish as a whole and don’t sit pointing at the other side, like a bunch of spiteful prom queens picking on the weird kid all the time.
Forget stimulant ADHD meds, it’s the addictive zombifying effects of endless culture wars that’s going to flush this country down the toilet.
LOVE Kx
Comments
Nothing yet. Say the first thing.
Sign in to join the conversation.