ADHD at 43
A few weeks ago I officially joined the neurospicy club. At 43 years old I’ve been diagnosed with AuDHD – ADHD with a side-dish of autism – and suddenly so much of my life makes complete sense.
A year or so ago I would have never seen this coming (although apparently a bunch of other people did!) When I tentatively started talking about investigating an ADHD diagnosis the general response was along the lines of “Oh, I thought you already knew!”
Spot the kid with undiagnosed ADHD
Understanding the connections
To be clear, I still have, and am being treated for, obsessive compulsive disorder – but back in the 90s, there wasn’t much understanding about how different brain stuff connected. I was diagnosed and treated for a specific thing, and anxiety fell out of that as a symptom/co-morbidity. The treatment and therapy absolutely made my OCD manageable, but I could never really nuke the anxiety. Now, I am beginning to understand that much of what I have blamed on anxiety throughout my life may have been something else entirely.
The psychiatrist who diagnosed me told me that if 15-year-old me had been diagnosed with OCD today, ADHD and other neurodiverse conditions would have been investigated too. I’m so glad that’s the case now. I’m not mad that they didn’t make the connection then, they didn’t know what they didn’t know. The psychiatrists and counsellors did the best they could with the information they had, and it worked. It wasn’t perfect, but I’m still here and I’m still learning and I appreciate that so much.
Learning from friends
It was a few years ago now that I met my first (amazing) adult woman with ADHD. She told me about how the diagnosis had changed her life, how it presented differently in those of us with more estrogen than the archetypal hyperactive little boy, so women often weren’t picked up. She said symptoms in women were more subtle. We were dismissed as daydreamers, easily distracted, too sensitive. We also learned how to compensate from a very young age. I was thrilled for her that she’d finally found answers, but I never considered it in relation to myself.
Fast-forward a couple of years and I’d met a number of women and non-binary folk my age who had been diagnosed, many alongside their children. So much of what they talked about rang true to me, but I wasn’t brave enough to go there. I had OCD and anxiety – that was it, right?
Ortant strikes again
From there it took a year. A year of me trying to convince myself I wasn’t seeing what I wanted to see, or jumping on a bandwagon. That was Ortant talking. For new readers, Ortant is my imp-oster syndrome. He’s a total dick. You can read a short story about him here:
It was a year of me trying to find an appointment with someone who wasn’t booked up to their eyeballs, a year of symptoms I’d had all my life steadily getting worse.
Just add peri-menopause
Around about the time my brain was really catching fire, I discovered the joys of peri-menopause (trust me – that’s a whole other blog!). As far as I was concerned, menopause was something that happened in your 50s or 60s – I had zero idea that it could be a frikking decade-long process that can start in your early 40s.
I will elaborate on what I’ve learned about the whole crappy process another time, but if you are there now, or suspect you are, I recommend these two books:
Don’t Sweat It by Nicky Pellegrino
This Changes Everything by Niki Bezzant
And Petra Baghurst’s awesome podcast Grey Areas has some great episodes on peri-menopause and menopause.
A process of elimination
While I was negotiating this my OCD flared a bit and so did a bunch of other symptoms. I read that things like OCD and ADHD can ramp up during menopause, but it put me in a bit of a quandary. How much of what I was experiencing was menopause, how much was OCD, and was any of it ADHD? I decided on a process of elimination. Treat the menopause symptoms first and if there was anything left over it might be worth investigating.
I read books, listened to podcasts, made some lifestyle changes, bought a bunch of fans, and finally started on hormone replacement therapy. That took a bit of dosage tweaking, but it was a lifesaver. It is insane how much of your body is affected when your estrogen starts to drop. I was able to cross insomnia, homicidal rage and night sweats off the symptom list and the OCD symptoms started to calm the farm. It left me with enough confidence that the leftover symptoms might just be ADHD.
Why am I so bung?
Bung, if you are a Kiwi or an Aussie, is basically slang for ‘broken – not in working order.’ (It’s also the thing you plug into your dinghy to stop it filling up with water, so for any confused sailors out there – that’s not the one I’m referring to.)
Why am I so bung/munted/dropsy/scatter-brained/unco/useless? are questions I have regularly asked myself throughout my life. I’ve spent a lot of time getting mad at myself of being rubbish at being a human. For struggling to manage things most people find simple. I drop just about everything I try to pick up. If I do manage to hold onto something, I will put it somewhere idiotic and immediately forget where, despite it being in my hand three seconds ago. I leave things on buses and trains and in shops, I spill things, I break things, I whack my arm into the same door every single day.
What is time?
I need two digital calendars, a paper diary and a bullet journal to remember where and when I am going to meet you. I will either turn up awkwardly early and hover round hoping no one will notice until you arrive or I will get side-tracked by a conversation with someone, despite all my planning, and end up frantically texting you because I’m running late.
Unless I am regularly checking a clock I have zero concept of time passing. Have we been talking for 10 minutes or an hour? Who knows? – not me! Back in the day my friends would tell me movies started half an hour before they really did, so I’d actually make it on time. We laughed about it, but I was actually really ashamed. I hated that they had to do that.
Too fast
I’ve always felt like I’m too fast for the world around me. Not in a winning races kind of way (see unco) but in an inability to take my time not to crash into shit kind of way. I worry I talk too much and too fast. I tend to babble and overshare when I’m nervous.
I pick things up quickly, which is a blessing and a curse. It’s great for learning new systems for work and for writing, but it can also be incredibly frustrating. Often when I’m taking with someone, I know what they are going to say before they finish their sentence. I’m not psychic, I just pick up on context really quickly (which was great for journalism, but less so for polite conversation.)
Hitting the wall
The flip side of moving so quickly through the world is suddenly having to stop – and it really is sudden. I get to a certain point in the day and I run out of gas. If I’ve been interacting with a lot of people, I run out much quicker.
It’s the weirdest contrast. I am super high performing when I’m working, I pick up new things really quickly and eat deadlines for breakfast. If a crisis comes out of nowhere, I’m on it. I’ve published books and articles I’m really proud of and done some really tough interviews with amazing people. I’ve sailed across the South Pacific. But that uses up everything I have – all of my spoons.
Spoon theory
For the uninitiated, spoon theory was originally a way of describing how people with chronic illness and disability have limited energy stocks (spoons) and spend more energy on everyday tasks than people without those conditions. It was quicky picked up by the mental health and neurospicy communities as well. You can read about it here:
For me running out of spoons means coming home and crashing into a million pieces. Struggling to feed myself without eating quick and easy crap, being unable to keep on top of the house. Simple things like showering and cleaning my teeth can become massive hurdles.
In the weekends I would get to a certain point in the day and need a nap. It’s not gradually feeling tired, it’s suddenly hitting a wall – you have to be unconscious, that’s it. I would feel guilt for sleeping through a beautiful sunny day when I could have been out in the garden, and shame for not being able to keep on top of my laundry. It meant that trying to fit in things I actually enjoyed and spending time with people I cared about was confusingly stressful. I wanted to do these things and catch up with people, but I was completely out of gas. I often felt like the worst friend, partner and family member in their world.
Sensory overload
One thing I have noticed getting worse since good ol menopause started was my hyper-sensitivity to stimulus. I have always been a bit noise sensitive, but it has definitely increased – to the extent that I haven’t been able to listen to podcasts because noise inside my head is too much. Bright lights and temperature changes mess with me, I have pain conditions flare up meaning I can’t sleep. Some days I just feel like a walking jangling nerve.
I’m also hyper sensitive about my own interactions with people – constantly replaying conversations and overanylsing my tone/comments in case I upset someone. That’s where the autism comes to join the party. Obviously it’s mild because I can function, but it explains the sensory overload I’ve had all through my life in a way seeking answers through the medical profession never has.
Masking
Through learning about autism I also learned about the concept of masking – the thing we subconsciously do to present ourselves to the world in a way that is deemed acceptable, our armour that helps us fit in. The thing we learn to do from a very young age, when the world starts to tell us we’re a bit ‘too much.’
Masking is very useful, but it is also exhausting. Often, when we get home and we feel safe, when we don’t have to pretend anymore, that’s when we crash or melt down. Unfortunately that means the people we live with, the people we are closest to, often only see us when we are at the end of our tether.
The grief/validation sandwich
Talking with friends who have been through this, I have been told to prepare for a whole bunch of emotions – and trust me, I am having them.
I see it as a grief/validation sandwich. I finally have answers that make sense and it’s the most amazing feeling. However I also have years of second guessing myself and blaming myself for things that really were out of my control, and that’s a bit to get your head around.
I learned about the concept of time-blindness, which gave me answers about why I have to overcompensate so much to be on time for things. It gave me permission to be gentler with myself and investigate tools to help me cope. I learned that I wasn’t lazy, that my exhaustion was because my brain took in everything, everywhere, all at once. It was working harder than it was designed for. I learned that I wasn’t greedy because I lacked self-control around food (something I have had quite a bit of shame about). Food wasn’t about hunger, it was a source of dopamine (the pleasure hormone) which I didn’t have enough of.
Would I change?
Would I choose to change it if I could? I actually don’t think I would. If I hadn’t struggled so much to make friends when I was little, would I have read so much? Would I have become a writer? If I didn’t hyper-fixate on what I enjoy/want, like a stoner with the munchies on a pie, would I have gotten a book deal? Would I have gone on to publish myself?
I wouldn’t give up my neurospicy community for the world. They are the best, most genuine and talented people, and I have unconsciously collected them throughout my life. There’s an internet meme that says something like ‘neurodivergent people group together, like a pack of poorly emotionally regulated wolves, so if most of your friends have ADHD, I’ve got some news for you…’ It looks like that one could be incredibly true!
Ditching the acronym
I loath acronyms – I think they are a way of excluding people who aren’t ‘in the know’ so I usually always spell them out. I’m going to be a total hypocrite on that front now though, because I hate what the acronym stands for. I don’t think it takes into account the strengths ADHD gives people alongside the overwhelm. It is about as literal an example of deficit language that I’ve ever seen.
Attention Deficit Hyperactivity Disorder – it actually has the word in there. Deficit and disorder – way to kick someone when they are trying to work out how to drive their brain!
The te reo Māori word for ADHD is aroreretini which translates to ‘attention goes to many things’. I like this definition much better. It describes what is going on without judgement and leaves space for the strengths the condition brings as well as the struggles.
Anger and acceptance
I guess I have a bit of anger for all the young women who were brushed off as ditzy, spacey, manic pixie dream girls, while the boys got all the help. But they only knew what they knew back then I suppose.
I read somewhere that boys get diagnosed because they are a pain to other people, while the rest of us do because we’re a pain to ourselves. That’s probably a bit simplistic, but I would say, that when I see hyper kids bouncing off the walls I think to myself ‘that’s how it feels inside my head.’ Their hyperactivity is mostly external and ours is internal. It presents differently, but it’s the same thing.
Nurturing difference
I also know that my brain running a million miles an hour is the reason I can do a lot of the things I can. These are the parts that I want to nurture. I am different, I always have been, and I can finally say I am proud of that. I think the only time I wanted to be ‘normal’ was when I was struggling to connect with people at school. I wanted to fit in and I tried so hard. I feel sad for that wee kid, but I also feel validated, there was nothing she could have done, she was wired differently. None of it was her fault.
And eventually she found her people. People who accepted and celebrated her quirks, people who encouraged her to do the things she was good at, people who were happy to be seen with someone wearing bright orange paisley with blue hair back when everything was grunge and brown and beige. You know who you are, and I can’t thank you enough.
Charts and hypocrisy
I think the most emotional part of the diagnostic process was when the psychiatrist showed me where my responses sat on a diagnostic chart. I had told him at the beginning of the process that I was worried I had pinned too much hope on ADHD being the answer and that I might be hearing things I wanted to hear (thanks for nothing Ortant!). Part way through the assessment he showed me the chart to reassure me. It was the only time during the process that I began to get teary.
Being able to cry is something I have only recently been able to do after years of therapy. I think I taught myself to mask a bit too well. I told myself that crying was a sign of weakness, that if you are going to be loud and open about mental illness to normalise it, you can’t be the one who melts down, you can’t let people see you are ‘weak’. I was basically being the world’s biggest hypocrite. That was a lot of unlearning that I had already done before even thinking about ADHD, and weirdly, I feel so much lighter now I can actually experience my emotions.
The therapy dot
The chart had a line in the center – answers landing above it pointed to ADHD, answers below it pointed away. All of my marks were above the line except for one which equated to ‘awareness/acceptance of self’. That was just below the line. High for someone without ADHD/autism, low for someone with. This is where the self-loathing lives, where you get mad at yourself for what you can’t do.
This is something I’ve been working on with my therapist for quite a while, which is why I have named it the therapy dot. The psychiatrist saw how moved I was by seeing things so black and white and asked if I wanted to take a photo of the chart – of course I did! I added a few embellishments myself, to help make it clear for friends and family.
Spot the dot
Test driving the meds
The end result of the diagnosis session was that I am test driving medication. I’m not gonna lie, I was scared. I was worried it might kill off what makes me good at stuff – the noticing things, the creativity, the book characters having heated conversations in my head. The psychiatrist was confident it wouldn’t and that it would more likely have the opposite effect, helping me focus on these things more by removing the distractions.
At the time I was at my wits’ end with the exhaustion and the hypersensitivity, so I decided to give it a go. It’s just under a month in and I am sitting in a library writing a blog, so I guess he was right on that front!
Learning what it feels like not to be tired
I wasn’t really sure what to expect. I had heard people say things seem quieter in their head almost immediately and others say, until they got the meds/dosage right, it turned them into an anxious wreck. I was basically prepared for anything. In reality, the effect was subtle, but powerful. I knew something had changed, but I couldn’t put my finger on what exactly it was.
Then I clicked that, for the first time in years, I had worked through an entire day from home without having to skip my lunchbreak to take a nap. The change I was noticing was that I wasn’t tired. I had been operating in a state of background exhaustion for decades, to the extent that I didn’t actually recognise what not being tired felt like. I also notice almost immediately when the meds wear off – the edginess and the noise creeps back and everything just feels a bit off.
Breathing and hunger
There were a couple of other things I noticed, that I didn’t think were that big a deal, until my therapist started to get excited about them. One is that I am noticing that I’m hungry for the first time in a long time. Normally I fixate on food (mostly sugar) all the time, but I rarely notice hunger. Now I don’t really think about eating until my stomach starts growling and tells me I should.
The other thing I have noticed is my breathing. I often hold my breath and don’t realise I’m doing it – apparently it freaks some people out. I have now started to notice when I am and am deliberately breathing regularly when I do. I genuinely didn’t realise how amazing just breathing could actually feel.
Apparently if I’m noticing things like hunger and breathing then it means my nervous system is starting to down regulate (basically hitting the brakes on the hyper) which is why my therapist got all enthused about things I thought were just funny little side effects.
Slowing me down by speeding me up
When explaining how the meds actually worked, the kind, polite psych apologised for his language (after I had been intermittently swearing for the past two hours) “It’s a bit of a head fuck isn’t it?”
He’s right, it is. I am basically taking a bunch of uppers to slow myself down. My whole life I have avoided taking anything recreationally that would speed me up. The last thing I needed was something that made my head zippier. The irony of that is, if I had tried, I may have worked things out sooner (NOTE: This is absolutely not a suggestion for anyone who thinks they might have ADHD to go and try anything ‘off brand’).
One thing that did give me a clue however was the effect coffee has on me. Coffee helps clear my head, but it doesn’t amp me up. In fact it does the opposite, it actually calms me down – and if I have too much, I need to go take a nap. It turns out I have been self-medicating with caffeine and sugar for most of my life.
Brains are weird
The way he explained it to me was that, because my brain doesn’t have all the dopamine it needs, it’s constantly scanning for ways to find it, which is a bunch of extra work. It’s one of the reasons I notice things, which is great, but the problem is I have zero control of what I notice. I notice everything, even when I don’t want to. It was actually the experience of constantly being overwhelmed by tuning into every noise or conversation whether I wanted to or not, that inspired the title story of Ghost Bus. What the meds do is give me the dopamine I should have had in the first place, meaning my brain doesn’t have to go and look, giving me more capacity to slow down and pay attention to the things I actually want to. So here I am taking stuff that would have other people bouncing off the walls and all I’m noticing is that I don’t need to nap as much and when I’m actually hungry. Brains are weird man!
It’s still early days, and I’m still ironing out wrinkles and playing with pills, but I am definitely feeling more ‘me’ than I have in a long time.
Resources:
If you want to learn more about aroreretini and other neurospicy conditions for yourself or for someone you care about, I can’t recommend Sonia Gray’s podcast No Such Thing As Normal enough.
The ADHD New Zealand website has some great resources and, if you are on Facebook, the ADHD NZ community for Adults with ADHD group is a great place to connect with people and ask for advice.