ADHD in women: My story of getting a diagnosis at 40 and its positive impact

Bay of Plenty Times reporter Catherine Sylvester speaks about her experience living with ADHD. Bay of Plenty Times Photo / Alex Cairns

Intelligent students failing classes and accomplished professionals living in chaos. Misplacing items, disorganisation, social challenges, extreme focus, inability to focus and a host of accompanying mental health challenges can overwhelm someone with undiagnosed attention deficit disorder. And wāhine have the odds stacked against them. Bay of Plenty Times and Rotorua Daily Post journalist Catherine Sylvester shares her experience of living with ADHD, and what it’s like post-diagnosis and treatment.

ADHD is just one of the many things that makes me who I am.

I was diagnosed later in life (as is often the case with women) despite ticking many of the boxes for attention deficit issues. I was able to mask these symptoms for years, but always at a cost to my emotional, mental, or physical health.

The stereotypical person with ADHD is bouncing off the walls; which does little for the inattentive girl staring out the classroom window lost in a daydream, the young woman jumping from job to job and in and out of relationships, or the mother of small children overwhelmed by the need for routine and organisation.

At school, it was hard to pay attention to any lesson that didn’t hold my interest.

I was once all of these.

At school, I was chatting through class or lost in thought, not paying attention to any lesson that didn’t hold my interest. Jobs, relationships, and even countries of residence changed frequently throughout my 20s and 30s. I was misdiagnosed at 30, then received an accurate diagnosis at 40 - but not before my life nearly unravelled.

Eleven years on, I’m living the life I only dreamed of. A life that seemed out of reach before receiving treatment for ADHD.

‘A lifetime of serious self-criticism’

After a lifetime of serious self-criticism over aspects of life I was ill-equipped to conquer, my narrative now feels exponentially healthier. I understand myself better and recognise strengths within the disorder with the benefit of knowledge, medication, and time.

Last year I held a managerial role, completed my postgraduate diploma in journalism, worked as a freelance writer, spent a month in the United States, and managed the lives of my two teenage daughters, which involved some next-level, unpaid Uber work ferrying them around.

I absolutely could not have achieved this without medication and years of retraining my dopamine-deficient brain. I did not, however, ‘do-it-all’. I did not maintain a pristine home, excellent social life or do the main grocery shop for my whānau. I have my limits and now I embrace them.

Evidence shows females are less likely to be diagnosed with ADHD, be diagnosed later, or receive an incorrect diagnosis of another mental health or neurodevelopmental disorder, national committee chairman for the Royal Australian and New Zealand College of Psychiatrists [RANZCP], Dr Hiran Thabrew previously told NZME.

Even the official name, attention-deficit/hyperactivity disorder, can be disadvantageous to wāhine as we often present without the hyperactivity symptom more prevalent in males.

Difficulty prioritising information

Pre-diagnosis, the minutiae of life seemed insurmountable. I lived a roller coaster of emotional highs and lows,and there’s discomfort in recalling that part of my life. Even more so in sharing it.

But perhaps one self-isolating woman feeling like a failure because she can’t do what other mothers somehow manage might read this and recognise herself in my story. Perhaps she’ll question whether her perceived moral failings are actually something deeper.

Me aged around 30, the age when I was misdiagnosed.

Neuropsychiatrist Dr Gil Newburn describes attention deficit disorder as a “disturbance in the brain networks that allow us to hold more than one item in consciousness at a time”.

I’ve heard it described as a difficulty in prioritising incoming information. For example, when my young daughters talked to me while I was cooking dinner, and a dog was barking outside, and the TV was on, my brain would consider every one of those factors equally important. It felt overwhelming.

Dr Newburn says women are good at masking their symptoms and internalising any hyperactivity, resulting in fidgeting, feeling restless, or being very talkative or disruptive. The Gisborne-based senior clinical fellow at the Mātai Medical Research Institute says a woman’s ability to hold attention or focus is also impacted by fluctuating hormone levels throughout life. For menstruating wāhine with ADHD, the drop in estrogen after ovulation impacts the dopamine receptors in the brain, decreasing “attentional processes” and an increasing impulsivity. The same is true for perimenopausal women.

It’s often during high school that girls with inattentive ADHD start to struggle as they encounter more nuanced social rules, Newburn says.

“You’re in conversations with people and you suddenly realise you’ve zoned out, and their presumption is that you were just not interested, so they think, `Why should I bother with you?’.”

Or “you piss them off by seeing where the conversation’s going and you dive in and cut across them and go three or four steps ahead and you finish their sentences for them”.

Or you jump in with strange things and those combined, result in you being pushed out to the edges, Newburn says.

I relate completely. At the time, I didn’t understand where I was going wrong.

I’d start strong in a group and slowly find myself pushed to the edge.

I knew I was missing the mark but I couldn’t put my finger on why. I felt like a square peg in a round hole. I still do sometimes.

Gaining an accurate diagnosis of ADHD and receiving treatment has made an enormous difference says Catherine Sylvester. Photo / Alex Cairns

Bay of Plenty Times reporter Catherine Sylvester speaks about her experience living with ADHD. Bay of Plenty Times Photo / Alex Cairns

Medication and self-knowledge have helped me enormously but there’s no ‘cure’ for ADHD. I’m still me - the difference now is the reduced degree to which I’m affected by the more challenging aspects of the disorder.

The resulting anxiety I felt around socialising meant I was susceptible to taking that edge off with alcohol and cigarettes, which Newburn says is common in people with ADHD.

However, it was a traumatic brain injury in the surf at the beginning of my last year of schooling that amplified my previously manageable symptoms and set the attentionally deficient wheels spinning for the next 23 years.

Untreated ADHD is associated with an increased risk of depression, anxiety, addiction, and eating disorders - all boxes I could tick.

Impulsivity increases the chance of making choices without fully weighing the risks and repercussions. Such was my choice to leave Aotearoa at 17 years old to move halfway across the world five days after deciding to do so.

Then to the United Kingdom ... Australia ... New Zealand.

Untreated, engaging in activities that did not hold my interest was an enormous effort. Common for many people, I took it to the next level.

Unpacked boxes from moving house, or suitcases from holidays would stare woefully at me for months. Projects and assignments would be delayed until the day before they were due. Ironically, the last-minute panic associated with this boosts dopamine activity which I needed to move past the ADHD paralysis. Time management eluded me..

‘When life was utterly unmanageable’

‘But everyone experiences these things’ I hear you say - and you’re not wrong. However, it’s when the symptoms of ADHD compound and become debilitating that people may feel they are not functioning at full capacity. Additionally, people with ADHD often experience intense emotions or have difficulty managing them.

I have extremely successful friends with careers requiring years of university study or multiple businesses who experience feelings of shame and self-negativity because they’ve missed an appointment again, they’ve lost their phone again, they feel despondent over their seemingly wonderful lives again, or they beat themselves up for oversharing at a party again.

Taking into account the prevalence of comorbid factors such as anxiety, depression and addiction for untreated ADHD, the importance of accurate and timely diagnosis becomes clear.

That's me on the right, when I interviewed Boyzone singer Ronan Keating, second from left, for Juice TV.

Unfortunately, an accurate and timely diagnosis was not for me. I gave up cigarettes and stopped drinking alcohol when I was 27, which exposed my untreated symptoms and at 30, a friend recommended I see a psychiatrist who specialised in ADHD.

I dutifully trotted off, paid a large sum of money, and left with the lone diagnosis of “You’re very smart and bored at the moment, and you have a large emotional range”.

It was 10 years later when my life was utterly unmanageable that I was finally diagnosed. I was self-medicating with dopamine boosters such as energy drinks and sugar; experiencing panic attacks, insomnia, and low mood; struggling to stay awake during the day; and unable to go out with friends or to the mall because my brain couldn’t cope with all the stimuli.

I was put on a treatment plan which included medication.

‘Exactly what my brain had been missing’

I will never forget the first day I took a dose and sat down to play with my 2-year-old.

I felt engaged and focused on the game we were playing - a night and day difference. It was immediate. It was profound.

It was 100 per cent exactly what my brain had been missing, and which I had been attempting to remedy with poor substitutes.

Over the next few years, I worked with my doctor to fine-tune the type of medication and dosage that worked best for me.

I made lifestyle changes, moving from Auckland to Pāpāmoa and using natural remedies to help heal my body from all the caffeine and sugar I’d been consuming.

With medication, I retrained my brain to do tasks I used to struggle with - organisation (which I’m now surprisingly good at); initiation of boring tasks I used to avoid at all costs; and re-engaging with the professional and social world.

There were hiccups and setbacks but I could recognise what caused them and became gentler and kinder with myself.

Often at the end of a day’s work now, I will tell my whānau I need a ‘brain-break’ which means time alone to do crosswords, read, or scroll mindlessly through my phone, which are all forms of mental relaxation for me.

No one interrupts or talks to me, and 20 minutes later I feel more human and ready to engage with the world.

One of the best non-pharmaceutical therapies to assist my brain’s function was prescribed to me by Dr Newburn: Twenty minutes of gentle aerobic activity a day.

The explanation for its efficacy involves the salience network and a molecule called brain-derived neurotrophic factor. It’s complicated to easily summarise so you’ll have to take the psychiatrist’s word for it - it’s worked for me.

With regulations regarding who can diagnose the disorder (psychiatrists); the cost of prescriptions which, until recently, needed to be obtained monthly; additional two-yearly appointments to retain special authority approval for the Class B medication; and six-monthly required GP visits to check blood pressure (which has always been low), I estimate I’ve spent around $8000 to $9000 on my treatment. That’s an enormous cost that many can’t afford - if they’re fortunate enough to see a specialist in the first place.

ADHD New Zealand chief executive Suzanne Cookson told the Bay of Plenty Times last year that adults not being able to get diagnosed with ADHD through the public system was a “big issue”, and the average cost of a private diagnosis may be around $1600.

“Once you turn 18, you are pretty much thrown to the private system because it is very, very difficult to get help for diagnosis and support for ADHD once you’re over 18,” she said.

Cookson noted the difficulties with this due to a shortage of psychiatrists.

Pharmac’s director advice and assessment and chief medical officer Dr David Hughes said changes to the renewal criteria for ADHD treatments were being considered.

Dr Thabrew of the Royal Australian and New Zealand College of Psychiatrists says girls and women must not be missed when it comes to ADHD.

“Self-perceptions, social behaviours, and school experiences from childhood must be comprehensively assessed to accurately identify the condition in women.”

Thabrew says psychiatrists “have a responsibility to ensure that women receive timely and accurate diagnosis and treatment, addressing any biases or misconceptions that may hinder proper recognition of the disorder”.

These potential changes in regulations and diagnostic abilities give me hope that women and girls may soon receive equitable and timely care and treatment to avoid some of the pitfalls I experienced living with undiagnosed attention deficit disorder.

Because being on this side of it is just so much better.

Catherine Sylvester is a multimedia journalist at the Bay of Plenty Times and Rotorua Daily Post. She has a background in feature writing, radio and television, and has taught media at a tertiary level.