Why I won’t let this diagnosis be a secret

I have some massive life-changing news, as the title suggests.

I have recently found out that all my life I have had a neurological condition that affects my brain’s “executive function”. So, what does this mean exactly?

Well, for me (it’s different for everyone) it has meant I often have a very hard time focusing on, and therefore understanding many subjects, I’ve had a really hard time in relationships and a hard time with ‘impulse control’. I might say or do the wrong thing without awareness that it may not be a good idea, or binge eat too much for example.

My short-term memory was getting so bad I thought I was getting dementia and I would often forget appointments and things that people say. I’ve always been told I’m a terrible listener, which really translates as you don’t think about anyone but yourself.

I have problems with planning, sequences of instructions and information — for example, I‘ve never been able to follow a recipe or a mathematical problem to save my life. I have to think about my left and right.

This was made worse by the fun hormonal changes middle-aged women go through — I seriously cannot believe I am turning 50 this year… but let me give you an example of a week I had a few months ago.

o Day one — I realised I had left some meat in my hand-bad, the hard way

o Day two — I left the front door open when I went to the aquarium with my son Harry and forgot about a public holiday so someone who picks Harry up from kinder on Mondays arrived there only to find it closed

o Day three — I “carelessly” knocked a glass off a table

o Day four — I lost track of time and was late for a specialist appointment at the Children’s Hospital, left Harry’s food bag at a shop and then forgot to get a script filled before heading back to the car…

All things we all do, but not every day. It is embarrassing as people think you’re hopeless. And the mental energy I was having to use to stay on top of things in my business, at home and for my son Harry’s speech therapy, OT, Psych, and socials skills sessions, and all the admin this requires in terms of scheduling, National Disability Insurance Scheme reimbursements etc. is utterly exhausting. (Harry, who is five, has autism).

This condition has meant that I have always performed beneath my ability in all but a few areas of life. Reports at school ALWAYS read, “makes careless mistakes, is not performing to her ability” — and that translated into adulthood.

I was told that I talk too much, the list goes on— until I became a regular meditator. And it means that it’s harder for me to manage my emotions than it is for most people. I’m super quick to be stressed or upset and it’s difficult to calm down. My feelings are very intense, often, despite all the meditation I do.

However, now that I’m getting support and better understanding things are improving a LOT. :)

And now I can enjoy the good side of my condition such as having a very creative, problem-solving mind and being smart in many ways others aren’t. The ideas rarely stop!

The fact that my emotions are full-on due to having difficulty regulating them has made me super sensitive to others’ suffering and I have always tried to help in any way I can, a trait common to those of us with this condition.

The crazy thing is I have been teaching stress management techniques, meditation and yoga for nearly ten years now knowing that these skills are incredibly important for executive function — the very problem I have. Along with exercise and medication, these strategies are considered some of the most effective ways to treat/manage it.

And I can’t tell you how amazing it feels that, after nearly 50 years, I now have a name for my condition. I have ADHD.

For most people, it’s a life-long condition and it’s believed to affect 5–7% of the population. It’s terribly named, especially for women and girls, because often there is no obvious hyperactivity or obvious ‘inattention’. Crazy right?!

And I’m so bloody pleased I now know why I have struggled in every area of my life — until discovering meditation etc. when things became a lot easier. These techniques saved my life. Though I do pretty well these days it has not been easy… Parenting is not easy, parenting a kid with autism is even harder.

I’m writing this to raise awareness and to rage gently against the ridiculous stigma the condition has. This stigma and a lack of awareness mean so many girls and women go without diagnoses for WAY too long, often never knowing why they struggle as they do.

Now I know what my condition is I can understand my strengths and challenges better than I ever have and make sure my needs are being met. I’m lucky I have a massive head start, I’m doing so many of the recommended strategies. Now I can just take it all to a whole other level.

And in relation to celebrating strengths, in a time when thinking outside the box is arguably more important than any other time in history, this is something people with ADHD are particularly good at. Many believe that Einstein for example and Richard Branson had/have ADHD.

I’m not dropping these names in here to point out how awesome we are, but instead, I think it’s incredibly important that all variances are celebrated for their strengths. Just as we recognise that Greta Thunberg is not incredible despite her autism but because of it.

And I love how Jessica McCabe puts it in her TED talk. As she says, people with ADHD not only think outside the box, they may not even know there is a box! In another example, we are also apparently 300x more likely to start our own business.

In my case, green as can be, I once pulled off an Indigenous art auction that raised $250K for Aboriginal kids health research. And I got close to $1,000,000 funding for a web resource and grass-roots national network tackling a particular area of Aboriginal kids health that was then used as a model for similar resources for different health problems.

In both these examples, there was no box! And there’s no way I’d have achieved these things if it wasn’t for my crazy brain. I hope one day we live in a world where kids, and particularly girls’ parents are not horrified to hear their child may have a very special brain that needs some extra care, but that they recognise that given the right support it means they will be able to do truly extraordinary things.

It’s been a very steep learning curve in our family wrapping our heads around Harry’s autism and the whole notion of neurodiversity. That was last Easter.

I mean I knew I was not remotely typical. So now I know why! Turns out we have two atypical brains in our little family, out and proud as punch. 👊

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PS I am planning to do more awareness-raising work about the strengths of neurodivergent people so if this interests you please get in touch. I am also studying to become an ADHD coach as it fits so well with the work I already do so reach out if you would like more info.

PSS It feels insanely uncomfortable sharing this, but I’m a very open person and I’d share about other life-changing news so it feels right - like I’d be buying into the shame around it if I didn’t. Thanks for reading and your understanding.