It's time to account for the invisible work of neurodivergent perimenopause

It's like another job but not one I get paid for

Photo by Jan Kopřiva on Unsplash

Dear reader, I aim to get my newsletter out by week’s end but alas this week I’ve been extra busy with the demands of being a perimenopausal person.

There was a time, in fact vast expanses of my twenties and thirties where I did not darken the door of a GP’s office. Visiting the doctor was something other people did. When filling out a form that asked my GP’s name, I could respond with no more than a scratch of the head.

Fast forward a couple of decades and I speak to my GP more often than some of my friends. Perimenopause has pushed my health from something in the background to something that I actively manage.

I would say that perimenopause started happening to me roughly eight years ago in my mid-forties. But it’s a lot more recently that it’s become something that I do. Nary a day goes by when I’m not giving attention to perimenopause-related issues and an increasing proportion my waking hours are devoted to managing it.

The GP sits in an ever-expanding web of medical providers to which I’m about to add an endocrinologist and probably a gynaecologist at some point. I’ve also become very familiar with local pharmacists and folks in the pathology and scanning centres. I’ve got a psychologist and psychiatrist on standby and I’m about to start with an occupational therapist. It would be great if this was all case-managed by a professional with a well-informed and holistic approach to my life but instead it’s me in the project manager’s seat.

I’ve also built up a self-care practice that includes regular exercise (swimming and walks), meditation, exposure to nature, regular solitude and as much sleep as I can manage. I’ve also become more judicious about food choices and alcohol consumption. My concept of self-care has shifted from a “nice to have” occasional respite or reward to a vital foundation to my wellbeing. Being diligent about self-care is more about sustained effort than relaxation. Things can go downhill very quickly if I’m not on top of it.

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I came to perimenopause (or did it come to me?) with a baseline of good health and no serious illness or debilitating chronic conditions. But perimenopause isn’t just something that sits alongside whatever else you’ve got going on. It interacts, magnifies, exacerbates and in some cases, changes you fundamentally.

I should have clocked the first sign something was up ten years ago when a relatively low-impact fall shattered my shoulder leading to multiple surgeries, physio and a permanently reduced range of movement. A bone density scan revealed mine was abnormally low despite having no previous signs or risk factors. My bone density continues to be treated with six-monthly injections overseen by my GP.

If my life has been an uphill battle, moving into the perimenopause years increased the gradient even more sharply. I will never know how much is attributable to the onset of perimenopause, burnout from the cumulative stress of undiagnosed neurodivergence or just dealing with a bunch of traumatic life events.

It was only when I was diagnosed with ADHD two years ago after every coping mechanism I’d ever had scattered to the wind that perimenopause registered on my radar. It was impossible to ignore the relationship between declining oestrogen and brain function, particularly the impact on dopamine receptivity. I had been masking my ADHD until I no longer had the ability to.

It’s not just that oestrogen levels are lower, but that they are constantly fluctuating so that I never know what each day will bring mood-wise. My emotional regulation was at an all-time low ebb and my reduced capacity to internalise it resulted in regular toddler-level meltdowns. ADHD medication has been a game-changer.

My threshold for sensory input also took a dive as I became increasingly sensitive to all manner of environmental conditions, but particularly noise. Although research on the intersection of peri/menopause and autism is scant, it’s clear that heightened sensory sensitivity is a big part of the picture. The relentless impact on my battered nervous system is why I’m seeking the help of an occupational therapist.

Experiencing menopause as someone who is autistic and has ADHD is not just the sum of its parts, but a qualitatively different experience. It both magnifies and is magnified by neurodivergence. From a clinical perspective, I’m a complex case that requires a nuanced and finely calibrated response and much of that is down to me.

Here’s a rundown of what’s been on my perimenopause work agenda this week.

Changing my Menopause Hormone Treatment (MHT) AGAIN

I’d love to be one of those women can cheerily proclaim “MHT gave me my life back”. Yes, it is vitally important for me to shore up my declining oestrogen but I’m yet to settle on a foolproof way of doing that. The oestrogen gel was difficult to use and not particularly effective, probably because the “metered” pump actually delivered dollops anywhere between peppercorn and pea size for me to slather up my arms. The uncertainty made my autistic brain explode.

I made this week’s Telehealth appointment with the GP to talk about changing back to MHT patches. A few months earlier I had opted for a tablet version which for a while seemed like a nice, neat solution. (This story is stubbornly non-linear, so bear with me.) But it had become apparent that it was creating a hell of its own, its cyclical regime throwing me back into the lion’s den of monthly periods and PMDD.

I had abandoned the patches when my skin started reacting to it in the height of summer, leaving perfectly rounded itchy red spots over my body. Now in the middle of winter, I wondered if the patches might be kinder to my skin and at least offer a more palatable version of hell. I tried one I had leftover and amazingly, after a couple of days I felt nothing more than a minor irritation. When the GP gave me a new prescription I thought I was sorted. But alas...

Hustle time

Spoiler alert. There is no such thing as the perfect solution when it comes to MHT. Even when you find something that works for you, there’s no guarantee that you can reliably access it. I knew that the supply of the patches was variable and I was no stranger to the monthly hustle that saw me visiting at least five pharmacies before I got my hands on the elusive packet, feeling like I’d won the lottery. (Yay dopamine)

But this time was different, and not in a good way. It turns out I had unwittingly chosen to return to the patches during a nationwide shortage (yeah thanks for the heads up, GP). I tried ten pharmacies before facing the futility of my efforts.

A Google search took me to a TGA website page declaring a long-term shortage due to the manufacturer not being able to supply enough to meet demand. Seriously? Surely grappling with this foundational economic principle is not beyond a multinational company? How hard can it be to run off more in the factory, especially when you’ve had a few years lead-in time? What am I missing here?

And how much different would it be that if instead of vital hormonal support for women, we were talking about Viagra for randy old men?

Switching up to advocacy mode

So I did what I usually do when confronted by a situation that is illogical, unfair and frustrating. I ranted and raved and seethed. Then I thought about who the other players are in this game and how I might be able to put pressure on them to change things.

Thanks to a recent Australian Senate committee enquiry overseen by a bunch of similarly frustrated lady senators of a certain age, peri/menopause is on the national political agenda. The report released late last year noted among other things, the ongoing supply issues hampering access to MHT patches. It seems to be stuck in the too-hard basket on the assumption that governments can’t tell pharmaceutical companies what to do. But hey, does anyone remember the Covid pandemic?

These past couple of days I’ve been deep diving into whatever I can find on the web and sticking podcasts in my ears whenever they’re free. My job for next week is writing to key politicians and figuring out how to fashion my own personal campaign for change.

Making visible the invisible work of peri/menopause

I resisted seeking perimenopause support for far too long because I didn’t see myself in the mainstream narratives of peri/menopause. Somehow it seemed easier to address the cognitive and emotional symptoms from the ADHD side. It was only when I started experiencing the unmistakeable hot flushes that I felt like I had a pass to the menopause club, despite this being low on the scale of my symptoms.

It took women talking about their lived experience of perimenopause in online platforms and podcasts to bring home the reality of how perimenopause messes with your head and turns your life upside down. There is at last, growing awareness of the debilitating effects of hormonal depletion and fluctuation on virtually every aspect of physical, mental and emotional health, not to mention the flow-on effects for work, relationships and general quality of life.

There is no longer any excuse for medical professionals or anyone else to fob women off by assuring us how perfectly natural our particular personal peri/menopausal hell is. And after the incredibly unfortunate setback in MHT treatment due to some dodgy research a couple of decades ago, the idea that women can take control of their menopausal health rather than sucking it up has finally gained traction.

But there is still an onus on women not just to advocate for our own treatment but to drive change. While podcasts might wax lyrical about “finding your power”, in truth this translates to doing a shitload of work because if we don’t step up to safeguard our individual and collective wellbeing, no-one else will.

Getting through peri-menopause isn’t just about dealing with a raft of physical, mental and emotional symptoms. It’s doing work: tangible ongoing efforts that have a value. And it’s not just ticking off a weekly list of tasks but an ever-present mental load that is always top of mind.

It’s listening to a podcast in the car and telling yourself you’ll check out a website or follow up on some new idea that resonated and being dragged down a bottomless rabbit hole. It’s keeping track of how many days of patches you have left and making a diary entry to start the monthly hustle. It’s carving out a space for yourself that is not just time for self-care but an essential buffer for a demanding life. It requires intentionality, resolve and stamina.

Like all forms of invisible labour women perform, we need to illuminate the work of peri/menopause in order to have conversations about shifting the burden. Being multiply neurodivergent places extra demands on me as it is and my energy is at a premium. I’d love to be able to invoice someone, somewhere for all of this, if only to quantify its value.