Perhaps We Should Listen to the Noise

Women are equal now, apparently.  We can vote, own property, open bank accounts without a man's permission. We can become doctors rather than marry them! Run companies, choose whether to have children, keep our own names, earn our own money.

On paper, at least, achieving equality looks remarkably successful. The trouble with measuring equality on paper is that women don't live on paper.  We do, however, live in bodies.  And medicine, it transpires, has spent an an awful lot of of time knowing far less about those bodies than we might reasonably have expected.  I read an article in “New Scientist” the other week on a flight (my husband - “read more of that than that bloody TV gossip mag you bought!”). And this particular article about ADHD and the menopause angered me, and when I get emotional, I write. So thank you, Greg for inadvertently inspiring this one.

For decades, women were routinely excluded from areas of medical research. There were reasons for this, some more obvious and defensible than others. Pregnancy, for example, presented genuine ethical complications. But female hormonal fluctuations presented another problem: they would make research messy and complex. Menstrual cycles introduced variables….oestrogen and progesterone moved around…nice and clean experiments became less clean.

So (mostly male) researchers controlled for the problem. What was the problem in doing this? Women. Half the human population was, biologically speaking, inconvenient. As the “New Scientist” article describes, however, now something rather fascinating is happening. Let’s just ignore the fact it’s taken over a quarter of a century into the 21st Century for this to come to light.

Instead of trying to eliminate hormonal variability from research, scientists are becoming increasingly interested in the variability itself. Because the hormones  - once regarded as irritating interference - may be finally helping us understand connections between the brain and the rest of the body.  The idea being, what if the noise wasn't obscuring the signal at all, and what if the noise was the signal?

I have a fairly personal interest in this question. I hesitated to write this precisely because it is very personal and I know it can still invite questions and judgment. Two years ago, I was diagnosed with ADHD in my mid-forties. I didn't really see it coming.  If anything, I thought I might just be mildly affected.  It was my husband that convinced me to seek a diagnosis and potential treatment.

During parts of the assessment I actively argued with it. There were questions about organisation and procrastination, losing things, forgetting things, difficulty completing tasks. No, I thought. That's not me. Greg was there.

“Er...” There would be a pause. “No. That's you.”

Excuse me? Another question, and another confident denial from me. Another look from Greg.

“You absolutely do that.”

It was somewhat irritating to discover that the biggest obstacle to my ADHD diagnosis might be my own conviction that I didn't have some key symptoms of ADHD. But the questions kept coming.

How often do you have difficulty getting things in order when you have to do a task that requires organisation?

How often do you put off starting things that require a lot of thought?

How often do you have trouble wrapping up the final details of a project once the difficult parts have been done?

These small, clinical questions required clinical answers; except my answers were anything but clinical.

If you were to take one of my handbags and have a look inside, then that’s a big answer to some of the questions. Every handbag I have ever owned eventually becomes some archaeological ordeal that happens a couple of times a year. Receipts…earrings (usually one)...lipsticks (often without a top). Weird things belonging to my children (and thank god the days of slime and carrot puffs are over). Objects I put somewhere particularly safe because they are important, thus ensuring that I will never see them again. Old food with sticky residue, or crumbs, or fur! Keys with melted chocolate on them. Suncream spilled onto a prescription that I hadn’t collected.  A spoon.

My answers were also about clothes. I always struggle with clothes. A top taken out of the wardrobe because I was going to wear it, but never actually put on. Now, even as I write, it occupies a bizarre half-way territory in the bedroom on a window sill, because I can't remember whether it is clean, dirty or simply abandoned enroute to the charity shop, washpile or bin. Who knows?

And then there were the appointments. A three o'clock appointment wasn't something I had at three o'clock: it was what I was Doing That Day. I couldn't properly begin anything in the morning because I had an appointment later. By lunchtime it was definitely too late to start something. The hours before it became a kind of irritating limbo.

And the biggest clue was when I thought about a duvet cover in answer to something about household chores. I needed to change the bed. I knew how to change the bed. I was a grown woman with three children, a career and several decades of competent bed changing behind me. I couldn't do it. Not didn't fancy it. I literally couldn't begin, felt stuck and I became genuinely upset.

That paragraph above is actually harder to write publicly than the handbag thing. There could potentially be something at least slightly charming/eccentric about saying your handbag is full of rubbish. But there is nothing particularly charming about admitting that you can stand in front of a classroom, raise children, meet deadlines, write, organise events and cope extremely well with genuinely difficult situations, then find yourself close to tears because your brain doesn’t seem to be able to start you doing a basic household chore.

I would much rather tell you about the things I'm good at and, like I say, I nearly didn't include this at all. But, I think I have to… and people have to communicate the difficulties they encounter more in general. Life throws so much at us and honesty counts for so much. I know that somewhere there may be another woman who can manage a crisis, meeting, family or career but then goes upstairs and cries because she cannot begin one ordinary task. But I get it. She is so overloaded and exhausted that she lies down to try and nap for half an hour before she starts….but then her brain goes into hyperdrive again with guilt. She may not recognise herself in a diagnostic checklist but she might in something as simple as a mundane task. This is why it matters to me that we talk about this more.

Personal testimony is not scientific evidence and nor should it be treated as such. But, I would argue, personal testimony can tell science where to look. Symptoms begin with somebody noticing something;  and women's accounts of their own bodies have historically occupied an uncomfortable place in medicine. We know this. Women were routinely said to be subjective, anecdotal, over emotional. I wonder how many important questions about women's health have begun with a woman saying, “I know this sounds stupid, but...”

My ADHD diagnosis didn't give me a new brain, but it did make me re-read the life I'd already lived with the existing one; especially when the diagnosis came unexpectedly back as “severe.”  That was quite a moment. On reflection, I could see patterns stretching backwards through the decades….through school…university…work…creativity…motherhood. Procrastination, hyperfocus,overwhelm, overthinking, guilt. I knew I had an impressive ability to accomplish something hugely difficult in an adrenaline-fuelled burst, but this was often combined with the inability now and then to accomplish something easy and mundane.

My specialist said that it is very common for girls who are academic and empathetic to mask the condition for decades…and then the wheels come off spectacularly in middle age.

If I am given something urgent, creative, interesting or difficult and I know can work with a focused intensity. I can think on my feet and firefight five different situations at once (hence why the creativity and demands of teaching suit me so well e.g. I can shut down conversations and backchat while on the phone about an IT problem and mark at the same time!) But give me a duvet cover on the wrong Monday, or even the wrong duvet cover on any day of the week and suddenly I can’t handle life.

The timing of my diagnosis interested me enough to read further, which is when I realised I was far from alone. At roughly the same point in my life that I discovered I had ADHD, I was entering perimenopause (another tale for another day). There is increasing scientific interest in women whose ADHD is diagnosed, unmasked or becomes far, far harder to manage around perimenopause. ADHD doesn't suddenly develop at 45; it is neurodevelopmental. The interesting question is why a woman who has managed, compensated, masked or just ‘muddled through’ for decades might suddenly find that her old methods stop working.

As the article states, one possible part of that story is oestrogen. Oestrogen is not just the substance responsible for periods and hot flushes before just being disposed of by the ovaries when they shut down. It interacts with the brain, including neurotransmitter systems involving dopamine. Dopamine, meanwhile, is central to our understanding of ADHD.

To me, this raises some very obvious questions. What happens to ADHD symptoms when oestrogen fluctuates? What happens at puberty, the menstrual cycle? During pregnancy? After birth? During perimenopause? Does medication work identically at every hormonal stage? Do symptoms change? Might some women require different support at different points in their reproductive lives?

I know I did, and felt bad and guilty and ignorant as to why.

These are not obscure questions concerning a tiny subgroup of humanity. And yet, a 2025 systematic review examining ADHD and female sex hormones found only eleven studies that met its criteria. When researchers looked specifically for empirical research into ADHD and menopause, they found none.

None.

We are in the 21st Century and are only beginning to investigate properly what happens when an (increasingly common, it seems) neurodevelopmental condition interacts with a biological transition which is experienced by half the population. How is it that we are  only just asking? That question has started following me around.

ADHD is only one example. For years, female hormonal fluctuations were regarded in research as something to control for; a complication. But now, scientists are increasingly interested in those fluctuations, because hormones may offer information about the relationship between brain and body that disappears if variability is just designed out of an experiment. There is something both exciting and infuriating here. The inconvenient thing to scientists may have been telling us something all along.

Medicine has another habit that becomes more strange the more you think about it; we divide a woman into departments. The reproductive system = gynaecology. The brain = neurology. Mood and attention = psychiatry. Skin = dermatology. The heart = cardiology.  What floor of the hospital does “the body” go? Oestrogen doesn’t know and hormones circulate through one body.

I have become particularly conscious of that recently because my own body has decided to become a bit of an unscheduled research project. Alongside perimenopause and my ADHD diagnosis, I have experienced episodes of severe, whole-body itching without an obvious rash. I am currently undergoing various tests and have been referred to a specialist. I don't know what is causing it and it may have nothing whatsoever to do with hormones. However, that distinction matters enormously. I do not want a new version of the old medical mistake, in which every unexplained symptom experienced by a middle-aged woman gets the diagnosis of MENOPAUSE. Women have had enough of being told that physical symptoms are hormonal, psychological or purely something they must tolerate.

My question is the reverse. When we are still discovering the effects of female hormonal change, how can we be so certain about what hormones cannot be doing? For much of history, women have heard variations on the same reassurance. Periods hurt/pregnancy is uncomfortable/childbirth causes that. You're tired because you have children/you're anxious because you're stressed/your tests are normal.

Normal is an interesting word in women's health. Sometimes it means healthy. but maybe sometimes it means common enough that we've stopped asking why. There are different versions of “normal’ amongst those experiencing endometriosis, adenomyosis, PMDD, pelvic-floor injuries, miscarriages, infertility. Menopause. Female presentations of ADHD and autism. Differences in cardiovascular symptoms and disease.

Again and again, we discover areas in which the universal map of the human body was drawn from evidence that was disproportionately male. The male body became the unmarked human body. The phrase “women's health” implies we are a specialist variation on the species.

This is where women's health becomes inseparable from the wider question of equality - believe it or not I am rounding back to my original point! Legal equality is extraordinarily important and I am grateful for every woman who fought for it. However, equality cannot simply mean that women are permitted through the same hospital doors. Equality has to mean that the knowledge waiting on the other side was gathered and ready with women in mind.

Ultimately (and crucially) equality doesn't always mean treating male and female bodies identically but it does require acknowledging difference. Hormonal variability makes research more complicated? Fine - study the complication. Menstruation introduces variables? Study them. Pregnancy radically changes physiology? So study it. Perimenopause is unpredictable?Yes, it is! Find out why.

I believe that the female body does not owe science simplicity. There is another kind of noise here too; details that are personal, meaning that we are reluctant to share them or share any symptom that marks you out as different. There will always be a woman who says something has changed but can't  explain exactly what.  The handbag and the bloody duvet!

I would like to reassure women that the sentence that begins, “I know this sounds stupid, but...” is not stupid. Writing these things about myself makes me uncomfortable, because the cost of vulnerability is that once something private is written down, other people are free to interpret it through their own lens and projection. They can trivialise it or laugh at it, or decide it means something about your competence. Older generations can (and do) say “well it wasn’t like that in my day. No one had conditions like that. We just got on with it.” No, it wasn’t like that in your day. It was worse.

I do think that for women in particular, admitting that you are struggling can feel dangerous when generations of women fought so hard to establish that we were every bit as capable as men.  To me that's one of the crueller paradoxes of equality, i.e. we fought to prove that we could cope, so maybe we are now sometimes we are frightened to admit when we can't. But if women edit the strange bits out of our stories because we want to sound credible, maybe we are repeating, in miniature, the very mistake I'm angry about. Which is removing messy information and filtering out the noise. So - I'll leave the duvet cover bit in. Science should not believe something because a woman says it.. of course not. That isn't science.

However, neither should science assume that what it cannot yet explain isn't actually happening. The history of women's health gives us ample reason for humility about the difference between those two things. Maybe the very hormonal fluctuations that researchers once worried would contaminate their findings will help illuminate connections between brain and body we couldn't see without them. And so the middle-aged woman saying something has changed isn't suddenly less resilient or less capable, but instead has noticed the change before science ever found official terminology or academic study results.

For years, women's hormones have been treated as noise. Women themselves have too often been treated the same way. We should have been listening to both.