I am a 55-year-old woman who last year was diagnosed with attention deficit hyperactivity disorder (ADHD).
In the aftermath of that recognition a lot went wrong: most notably, my partner ended our relationship.
The reason he didn’t want to be with me can be summed up by an early 1902 definition of the disorder as ‘a defect in moral control’. My partner had simply had enough of my impulsive behaviour.
Though I had been exhibiting chaotic character traits throughout our 15-year relationship, for some reason being formally diagnosed with a condition that explained them, and being put on medication, was the last straw.
Perhaps he thought I was making excuses or, like Tony Blair, he thought I was over-medicalising the normal ‘ups and downs’ of life.
The former Prime Minister appeared on a podcast earlier this week warning that Britain was spending vastly more on mental health than a few years ago: ‘I think we have become very, very focused on mental health and with people self-diagnosing on mental health,’ he said. ‘You’ve got to be careful of encouraging people to think they’ve got some sort of condition other than simply confronting the challenges of life.’
But anyone who lives with it will know that ADHD is very real. It’s a largely inherited neurodevelopmental disorder that causes a number of areas of the brain to under-perform. That includes executive function (organising and executing tasks) and emotional regulation. A key part of the disorder is having low levels of dopamine, the neurotransmitter concerned with motivation and impulse control.
There are around 250,000 adults receiving ADHD medications in the UK, yet based on conservative estimates of the prevalence of the condition in adults being about 3 per cent, there could be ten times that.
Recently women have been bumping up the numbers as they seek diagnosis in the endocrine storm of menopause that can exacerbate symptoms: fluctuating sex hormones around menopause, pregnancy and puberty are known to heighten ADHD symptoms, including depression.
At the weekend, one newspaper columnist wrote that for some middle-aged women, a diagnosis of ADHD or Autism Spectrum Disorder (ASD) is a ‘get out of jail free card’ for their chaotic behaviour. And it’s not just Tony Blair – there are a great many other people in Britain who agree with her.
It makes me cringe to read columns that describe middle-aged people with a diagnosis as feeling ‘special, part of a tribe’ or that they see their condition as a ‘superpower’. I absolutely don’t think ADHD is a superpower. If it really was a superpower, why would people living with it want to be medicated for it? Yes, I’ve seen a few ADHD idiots on social media who seem to revel in their diagnosis – their innate time blindness, messiness and impulsivity – rather than work on conscious methods to control it. But for the majority of people, like me, the diagnosis is something of a mixed blessing.
A relief at first, it can help you understand why certain behaviour was so hard to control and certain feelings so overwhelming but in time, and especially if you speak up about it, it will cause division and judgment.
If I met someone diagnosed today, I’d say shut up and keep it to yourself. ADHD has become another front in the culture wars – when you mention it, all you get is discreet eye-rolling and awkward silences. It’s like Brexit. Or the trans debate.
I honestly wish I’d kept it a secret and never mentioned it, not just publicly, but to my family and friends, too.
My father, a retired paediatric surgeon, would agree with those commentators who rubbish some adult diagnoses. As such, we have studiously avoided discussing it. Recently, I forced myself to ‘go there’. He told me that at work he ‘always had a tendency not to pathologise/medicalise normal variations of personality and anatomy. The commonest reason for me coming into conflict with parents in my work was my refusal to operate on young children with anatomical variations.’ And, as such, Dad believes I fall ‘within the spectrum of normal variation of personality. Patients with serious problems such as schizophrenia and bipolar disorder are just not being seen and treated.
‘These other possible pathologies being added to waiting lists has just made things even worse.’
And I understand. I, too, was one of those people who pooh-poohed adult ADHD. Until that is, I was diagnosed.
For years, I couldn’t understand why I messed up so much and lived in a near constant state of crisis management. It was like my brain was a shopping trolley with the wobbly wheel that veers all over the place except where you want it to go.
From my late teens and throughout adult life, my search for a quick fix for the dopamine deficiency that characterises the ADHD type brain resulted in chaotic spending, procrastination, impulsiveness, risk-taking, substance abuse, drinking and wild emotional drama. I frequently longed to be admitted to rehab.
At first I thought it was something to do with my parents’ divorce – they split when I was about five – but no matter how much exercise, meditation or therapy I did, I simply couldn’t move on from a life of barely contained chaos.
Sometimes I’d get to the point of actually banging my head against the wall. What was wrong with me?
Over the years, a couple of psychiatrists I’ve met socially have suggested I look into an assessment. One of them was addiction specialist Dr Thilo Beck, whom I’d been interviewing. We talked about willpower, organisation and addiction. At the end of the interview he suggested I get myself an assessment for ADHD. I never did. Not for years.
It was a friend who really galvanised me into action. She was no professor of psychiatry – in fact she was infuriating. After she was diagnosed with ADHD, she never stopped telling me I had it, too.
To get an assessment on the NHS, you first fill out a brief online questionnaire. Questions include: ‘How often do you misplace or have difficulty finding things at home or at work?’ and ‘How often are you distracted by activity or noise around you?’ All my answers came out as highly consistent with ADHD.
Then I rang my GP who told me: ‘People are clamouring for autism, ADHD and gender reassignment diagnoses as answers to “existential crises” and the NHS is overwhelmed,’ but, ‘yes, it does sound likely you have ADHD.’
Assessments for ADHD are done by specially qualified practitioners in secondary care – psychiatrists mostly. There was no way I would be able to get assessed by the NHS. I was told the waiting list was closed.
I knew it was right to go private but London psychiatrists are terrifyingly expensive. Beyond my means, in fact, given I live at the uncomfortable edge of my overdraft. The financial outlay is significant. The end-to-end diagnostic process can cost thousands. But I hoped it would be worth it.
So like many others before me, I set about finding a private practitioner. Steve Taylor is a level 7 mental health nurse and nursing lecturer with over three decades experience. He also has a degree in psychotherapy and is what’s known as a Nurse Independent Prescriber. Turns out, Steve had also just been diagnosed with ADHD. It took more than two hours to go through the process, starting with what’s called a DIVA-5 diagnostic questionnaire for ADHD. It evaluates whether a patient meets the five diagnostic criteria for ADHD and whether these are an impediment to different areas of your life, including education, work and relationships. Around 150 questions must be answered in relation to adulthood and childhood.
These include statements such as: ‘You’re so busy talking that other people find you tiring’; ‘Needing a lot of words to say something’, ‘Too easily bogged down by details’, ‘Emotionally reactive to everything’, and ‘Interrupts the conversation of others’.
He also asked for at least two ‘informants’ among my friends and family to fill out forms independently and carried out a general assessment to ensure I did not have any other possible causes of my symptoms.
It was not a simple process. But Steve was half the price of a psychiatrist and could provide me with some therapeutic support afterwards.
I found the analysis fascinating: examining the doom spiralling where you are lost in the overthinking default mode network (DMN) and coming to understand rejection sensitivity dysphoria (RSD) – which can reduce you to a quivering, sobbing wreck after a relatively modest slight – made me able to detach a little from my feelings and understand why brief periods of my career in an office did not endure.
But most of all, he prescribed the medication that helped me with work, with life, with the chaos, without falling apart. It costs £180 a month.
It has given me hope that I can wrestle a life spent off the rails back on track. My ex, however, hated it. It was a deal-breaker.
Most days I take either a capsule of lisdexamfetamine, the effects of which last from morning to mid-afternoon, or dexamfetamine, which is a short-acting version of the same compound. It took a while to work out the right dose.
Too much and you feel like a speeding train; just right and a focused calm and emotional resilience descends; too little can make you feel more anxious than if you had taken nothing.
I don’t take it every day, but most working days.
After Steve advised me I had moderate ‘inattentive type’ ADHD last spring, I resolved not to publicise the fact I had it.
Who wants the world to know you’re crap at life – chaotic, loud, mal-coordinated, oversharing and prone to addiction and procrastination? Or, as some prefer to see it, you just have ‘no willpower’, ‘are lazy’ or ‘don’t work hard enough’?
And I am not impervious to the popular voice of dismissal. I regularly doubt myself. And I know others do too. Every time I sit down with Steve, we go through an exhausting 20-minute pantomime of, ‘I don’t have it, I’m just lazy, attention seeking, a bit rubbish, I just need to work harder.’
Each time, Steve has to say: ‘We do a psychiatric assessment to rule out other pathologies that cause similar symptoms. Why would you diagnose people who don’t have it? ADHD is not a joke.’
This trend for slating it among people who pride themselves on their intellect seems to miss the essential, bigger picture for society and no matter how irritating or made up or attention seeking or meaningless you have decided ADHD is, this bit is important.
ADHD is a significant risk factor or a comorbidity with many things that may be lethal pain for the person but are also a cost burden on wider society, including obesity, binge eating disorder, Type 2 diabetes, depression, anxiety disorders, problem alcohol and substance use, migraines, cardiovascular issues, dysautonomia, asthma, sleep disorders, traumatic brain injury and suicide.
At a certain point, the thing an ADHD brain is lacking becomes a problem for more than just the individual.
Had I not been born into relative privilege would I be one of the estimated 25 to 40 per cent of people with ADHD in prisons and on remand, for example?
If you really want to arm yourself with the crucial relevance of understanding and managing ADHD to our society, dig out a paper called ADHD In The Criminal Justice System: A Case For Change and some of the follow-up papers written in the British Journal of Psychiatry.
Over 93,000 scientific papers have been published since 1952 on ADHD, according to the biomedical database, PubMed. Recognition of the disorder dates back to 1798 when it was described by Dr Alexander Crichton as ‘Mental Restlessness’. By the early 20th century it’s called ‘minimal brain dysfunction’ (MBD), then ‘hyperkinetic impulse disorder’, Attention Deficit Disorder and then Attention Deficit and Hyperactivity Disorder. It was primarily viewed as a paediatric condition until this century when it started to be more commonly diagnosed in adult males, then females.
Thanks to my own personal shame and familial conflict, I have done my reading. Far more than any of these commentators, I suspect – and that includes Tony Blair. If I hadn’t done my homework, I would have surrendered by now, rolled over and said to all the naysayers: ‘You were right all along, it turns out I’m a “perfectly imperfect normal” person.’
Perhaps if I’d got this diagnosis five years ago and had kept quiet about it, my relationship might have survived. Or how about 30 years ago, wow, how different my life could have looked. Or perhaps I am just an annoying, flappy, self-absorbed person not worthy of any kind of medical diagnosis.
That’s what all these armchair experts would like me to believe. But they don’t have any idea what a life in chaos feels like. They pontificate from a place of privilege.
Since I’ve started medication, I’m no longer at the mercy of the shopping trolley with the wobbly wheel.
I can steer the ship and it’s a bloody relief to feel normal.
