When I was diagnosed with ADHD, I thought it would be one of the happiest days of my life. I’d spent years ruminating over what exactly made me different, knowing that I didn’t get through the day-to-day with the same ease that my friends did. After reading an article about how ADHD affects women, I felt a resonating click, but let that feeling linger for several years until lockdown held a mirror up to the problems I could no longer avoid.
Ready to face my issues head on, and having saved some cash across lockdown to pay to see a specialist privately, I took the plunge and booked an assessment. After the questions were over, the psychiatrist told me she knew I had the condition before I’d even started speaking because of the depth and severity of the symptoms I’d listed before the appointment.
While it felt cathartic to learn that there is an answer to why I work how I do, and ways of managing the debilitating symptoms that come with it, I didn’t feel the joy I’d heard so many people speak about on diagnosis day.
In reality, it marked the beginning of coming to terms with managing yet another chronic illness, one which is costly to manage, little understood and so hidden in plain sight that even my closest friends and family had failed to spot it.
The way we think about ADHD stops a lot of people getting help until later on in life and affects how we deal with it afterwards. Up to 75% of people with ADHD are undiagnosed, failing to connect the dots between their struggles, so often written off as kookiness, disorganisation or laziness.
The first time I’d seen ADHD represented on screen was when Sex and the City’s Carrie Bradshaw dated Ray King, a jazz musician who couldn’t sit still for longer than three seconds – and it repulsed her. I bought into the horror and shut the door on diagnosis for several years afterwards.
Female ADHD is most commonly 'inattentive' ADHD, which means that the symptoms may be less visible to the naked eye even though the mind is elsewhere. This type of ADHD leaves sufferers prone to disorganisation, daydreaming, difficulty making decisions, being withdrawn or taking longer to process information.
"As the ADHD girl is quieter and less disruptive, her symptoms are often overlooked or only mildly reprimanded in school reports, told she must pay better attention," says Dr Rachel Gow, a neurodevelopmental specialist. "This sadly means often girls suffer in silence, can become withdrawn, anxious, experience low self-esteem, develop school phobia and in worst cases, self-harm."
Like me, a lot of women were told that they couldn’t have ADHD because of their gender and have internalised their symptoms being dismissed while the sexist clinical guidelines play catch-up.
As I requested an appointment with my own GP to discuss my diagnosis and treatment options, I found myself fighting to be seen as someone with ADHD rather than focusing on getting support or assuming that it was a given that support would be offered.
"I think generally mental health conditions in adult women are dismissed as neuroses. I think there is still a pervasive misogyny in medical thought that doesn't take conditions that affect women seriously. Look at the treatment of PMS and the menopause, for example," says Dr Alison McClymont, a specialist who has worked with women and children with ADHD for a decade. "I think women are also socialised not to rock the boat or complain and therefore it may take them years to demand a diagnosis."
Those who are diagnosed with ADHD later on in life are often described as having 'high functioning' ADHD, meaning they don't appear to be struggling to the outside observer. The reality may be quite different. ADHD sufferers who were not diagnosed early enough may have had to develop coping mechanisms in the absence of professional support. Added to this, as sufferers have managed with the symptoms until adulthood, those symptoms are often perceived by peers as manageable and therefore not worth getting het up about.
"High functioning ADHD is not a diagnosis but it simply means you have likely been socialised to manage your condition enough that it does not dramatically affect other spheres of your life such as work or education," says Dr McClymont.
"It essentially means you have developed enough coping [strategies] or, more likely, have learned to internalise a huge amount of stress caused by having ADHD and not displayed it to the outside world as much as you might have liked to on occasions."
ADHD in itself means that organising aftercare following diagnosis can often be extremely challenging. NHS specialists are in short supply, with struggling ADHDers in England now waiting up to five years for an initial appointment. In 2020 the BBC found that there were at least 21,000 adults on NHS waiting lists for ADHD services.
For those like me who have splashed the cash to see a specialist privately, there’s a significant outlay on private prescriptions and follow-up appointments.
Those who saved up for an assessment appointment and need to return to the NHS for treatment can face a protracted wait for shared care. Shared care transfers clinical responsibility from a hospital or specialist service to general practice, where prescribing is done by the patient's GP or other primary care prescriber.
This process doesn’t play to an ADHDer's strengths. Chasing a GP means remembering to do so in the first place, a more difficult task than you might think if your working memory is so poor that it has similarities to that of someone with early stage dementia. If you’re assessed privately, your first prescription has a private price tag, setting you back £190 for a month’s supply of ADHD medication.
That’s before we get to how little support there is for ADHDers who want to take medication to manage their symptoms.
"If you do decide to go down the medication route for ADHD, be proud. Nobody who takes medication for a physical complaint is encouraged to feel shame or guilt and nor should you," says Dr McClymont.
"ADHD is often spoken [about] in the same breath as the 'medication debate' i.e. the discussions about whether or not people should medicate for attention problems. It’s also coupled with the suggestion that ADHD has risen as a result of the availability of medication, possibly due to pharma industries' interest in 'perpetuating diagnoses'. These points distract from the main topic, which is that people who have ADHD struggle with a great many areas of life, not just education and work. It can affect friendships, romantic relationships and health," she adds.
For others, it might be years of waiting after diagnosis to receive medication or therapeutic treatments, leaving them with the awareness of what the condition entails but without the resources to manage it.
For women from low-income backgrounds, diagnosis can be another stage in a frustrating journey to access support. Studies show that people with ADHD are more likely than their peers to come from a disadvantaged socioeconomic background. Nevertheless, social class is still incorrectly conflated with the likelihood of ADHD. Dr Gow says it’s "a real shame" that in the 21st century, ADHD and its treatment remain widely misunderstood.
"For clarity, ADHD is not unique to children raised by single parent families, it is not caused by watching too much television as a child, it does not equate to lower intelligence, it is not a label for 'naughty boys' and it is not an invention of the pharmaceutical industry," she adds.
Of all the post-diagnosis frustrations, there is one that is more overlooked than any other: how it affects our sense of self.
ADHD is all too often seen as a concentration issue but the mental health implications are devastating. Specialists often class ADHD as a mental health disorder. It leaves sufferers at significantly more risk of dealing with anxiety and depression.
For many, it’s the first time they realise that their high sensitivity to rejection is so profound, it has a name: rejection sensitive dysphoria (RSD). Revisiting struggles and emotionally fraught memories can be a painful reflection for many ADHDers grappling in the dark.
"RSD is a condition that affects some ADHD sufferers where they find emotional responses 'hard to bear'. The ADHD brain we know is one that overfires in some synaptic responses and produces that chaotic thinking and cloudy mind effect," says Dr McClymont.
"ADHD sufferers can find themselves desperately overthinking an interaction or finding it difficult to distract themselves from negative thoughts about an interaction, and do not have the ability to just 'let it go'.
"When you combine this with impulsive behaviour, this pressure to be liked and have people think well of you might promote the sufferer to bombard another in the hopes they will not reject them, or indeed to chastise and reprimand themselves for slights they might have caused other people.
"This can create turmoil in relationships with non-ADHD sufferers where they wonder why the ADHD sufferer appears so emotionally erratic, angry one minute and desperate to make up the next," she concludes. "However, dialectical behaviour therapy is a wonderful therapy for sufferers of RSD."
So what needs to change to make life after diagnosis easier? After working with children and adults with ADHD for more than a decade, Dr McClymont says it’s easier for patients who feel understood and heard.
"A great thing about a diagnosis is that it can make a person feel finally understood or heard, however this can be accompanied by a wave of trauma for all the years that you internalised you were at fault, when in fact you simply had ADHD," she says.
"Be kind to yourself, love your ADHD brain for the gifts it brings and show it compassion for the challenges it presents."
Dr Gow says that researching the condition can prove fruitful for ADHDers and give them more insight into what makes them tick and how to manage it.
"Do your research first if you think you may have symptoms so you can be well-informed to communicate your findings to a professional such as your GP to optimise the most appropriate referral," she says.
"Work with a psychologist such as myself who can pre-screen for symptoms and write a professional letter to your GP highlighting the screening outcomes. Most importantly, talk to others diagnosed with ADHD, join social media forums to connect with the ADHD community and importantly, never give up to make your voice heard."
No one should be undermined for feeling joyful to receive an ADHD diagnosis but I think that by boiling it down to a positive experience, we might miss the stickier parts of getting an earth-shattering diagnosis and consequently overlook what needs to change in the neurotypical world to make the condition more manageable.
'Happy diagnosis' stories are important but for as long as the world doesn't properly accommodate women with ADHD, the diagnosis will just be the beginning of another journey.