'A waking nightmare': How one woman's missed ADHD diagnosis could have killed her

A file photo of a woman in front of a laptop with her head in her hands
Women with ADHD are often misdiagnosed, as the condition presents differently in women. Photo credit: Getty

A Wellington woman who went 24 years living with undiagnosed Attention Deficit Hyperactivity Disorder (ADHD) says it was "a waking nightmare" which could have killed her - and many more women could be experiencing the same horror, due to a gender discrepancy in diagnosis. 

It's estimated one in 20 New Zealanders have Attention Deficit Hyperactivity Disorder (ADHD). But those numbers could be much higher because women are often misdiagnosed or diagnosed late, as the symptoms are often mistaken.

For Jane* her late diagnosis almost killed her.

She told Newshub her life before her diagnosis could only be described as "a waking nightmare".

There are three kinds of ADHD - primarily hyperactive-impulsive, primarily inattentive and combined.

The first - hyperactive-impulsive is more prevalent in boys - and more noticeable.

"This is what the average Joe on the street thinks of when you say ADHD - that little boy running around who can't sit still," says Jane. 

But the second type - inattentive - is more common in girls. It's less noticeable and was formerly known as Attention Deficit Disorder.

"This looks like a little girl, sitting at the back of the class staring out the window and playing with her hair," says Jane.

"Girls with inattentive ADHD are often written off as ditzy, space cadets, away with the fairies - all these really fun terms - but it's the same thing as hyperactive, it just presents differently and it's harder to spot."

Researchers have found the stereotypical perceptions of ADHD hinder women in the diagnostic process.
Researchers have found the stereotypical perceptions of ADHD hinder women in the diagnostic process. Photo credit: Getty

According to a study published in BMC Psychiatry boys are diagnosed with ADHD at a rate of three to one, compared to girls.

Researchers have found the stereotypical perceptions of ADHD hinder women in the diagnostic process.

"The stereotype of the ADHD 'disruptive boy' is likely to influence the likelihood of referral and access to diagnosis and treatment," it reads.

"The key message is not to disregard females because they do not present with the externalising behavioural problems, or the disruptive, hard-to-manage presentation commonly associated with males with ADHD. Females with ADHD may be overlooked and/or their symptoms misinterpreted."

In Jane's case, it took 24 years of hell for anyone to spot what was different about her brain.

As a child, she was described as gifted. But internally, Jane was in turmoil. She was in all gifted classes, and took dozens of extracurricular activities - but keeping up with her life was exhausting, and she didn't know why. 

Towards the end of high school, she says she "could not even pretend to keep up anymore".

"The outbursts, the tantrums in class - when I say tantrum I mean...imagine a kid sitting at a science table just sobbing."

It wasn't until her final year of university that Jane reached breaking point. 

"[University] was all downhill from the get-go. It was a three-year degree done in five years - I really, really struggled."

Throughout her tertiary career, Jane was misdiagnosed with anxiety and depression, and put on heavy medication which eliminated the crushing lows - but also got rid of any happiness.

"I was just existing in a constant state of sadness."

Deadlines were hellish - she would receive an assignment, formulate a plan of attack - and then stare at a blank word document for weeks until kicking into "panic mode" when she would stay up for hours on end, smoking cigarettes and ingesting any stimulant she could get her hands on.

She dropped out, then back in again. She developed a heavy reliance on marijuana - the only way her dopamine starved brain could make sense of her racing thoughts.

"I would smoke weed and suddenly I could grab a single thought and follow it."
"I would smoke weed and suddenly I could grab a single thought and follow it." Photo credit: Getty

"I guarantee I did not write a single essay sober," she says.

"I would smoke weed and suddenly I could grab a single thought and follow it. In my mind, it was better than alcoholism."

People with ADHD are overrepresented in substance abuse statistics - researchers estimate substance abuse disorders are twice as likely for people with ADHD, and four times as likely for people with ADHD and comorbid disorders - disorders such as anxiety and depression, that exist alongside their ADHD.

"Without knowing why you feel the way you do all the time it's pretty easy to reach for drugs," says Jane.

  • Do you have a story on this subject? Email vitamolyneux@tv3.co.nz

She told Newshub without marijuana, she doubts she would be alive.

"I don't believe I would be here today if I hadn't had access to pot. For me, I was constantly thinking and worrying but in my mind pot put everything in slow motion."

Marijuana was one coping mechanism - but illegally purchasing Ritalin, a drug used to treat ADHD, was another. 

It was this illegal drug-seeking that finally got Jane the help she desperately needed. 

"I went in and told my doctor that I had been buying Ritalin illegally from a friend - and it was the only thing that helped me. So she said 'well let's try and get it prescribed'."

Ritalin was "the only thing that helped".
Ritalin was "the only thing that helped". Photo credit: Getty

A year later, Jane walked out of a psychiatrist's office with a diagnosis and access to medication that she is finding helpful. 

"I didn't think for a second I would walk out with an ADHD diagnosis, I thought the doctor would give me meds because that's what helped - I did not think for a second I would walk out with a whole new lease on life."

Jane found with the correct support, for the first time in her life, she could function.

"Before meds, I understood that people get up in the morning and meal prep,  then go to the gym at lunch then socialise. I realised people did this, but in my mind, it seemed fake - I couldn't imagine it. And then I spent a week on these meds and thought 'oh my god, it's real."

She says they're not a catchall - but give her "the capacity to enjoy being conscious."

As well as giving her a new lease on life, Jane's medication stopped her reliance on marijuana entirely.

"I went from smoking pot every day for three years to cold turkey within a week and I do not miss it at all. It was also a huge relief because I could tell my parents I'm not actually a dropkick loser, I just don't make dopamine naturally so get off my case."

While she considers herself "one of the lucky ones" to be diagnosed at 24, Jane says it doesn't make reflecting on her childhood any easier.

"I think about my childhood and the way my symptoms were dismissed and trivialised - it's a blessing and curse knowing all this now but you look back with a little bit of pity. The misunderstanding of what it is makes it so, so hard - especially when it comes to women."

Although she's grateful to be diagnosed now, Jane says her heart breaks to think about the other women and girls who will be experiencing what she went through. 

"I think about how many people are going to spend 24 years going through what I went through - and it's f***ing horrible.

"There were points where I was suicidal and genuinely did not know what the point was in existing in the way I was existing - looking back now, I don't know how I got to 24, I don't know how I did it."

Now, taking prescribed medication, Jane is able to function and enjoy her life. She works a fast-paced job that requires a keen eye for detail and doesn't need to take naps or smoke weed to get through the day.

She says anyone who recognises symptoms of ADHD in themselves shouldn't dismiss it.

"In New Zealand, for mental health, we're taught to minimalise - pull your socks up and get on with it but there is so much information out there, that can really help you if you just Google it. My problem is, I didn't know I had to."

* Name changed to protect Jane's identity.