The door from our living area to the kid’s bedrooms was jammed, and my teenage kids were trapped on the other side, along with one of our two little dogs.

This felt like the universe teaching me a lesson for writing a piece a few weeks ago about progress in parenting neurodivergent teens.

‘Think you got it all figured out, huh?’ It seemed to be saying.

‘Well try this on for size’.

My youngest child (who is fourteen), had a raging, menstruation-driven autistic meltdown and stormed off - shouting, screaming and swearing, only stopping to repeatedly slam the hallway door to make

Every.

Single.

Point.

Until it wouldn’t slam again.

Because the latch had broken off.

These moods arrive with grim monthly regularity, leaving us all walking on eggshells. None of us can recall what even sparked this particular meltdown. It’s possible I said something grossly offensive, like ‘hello’.

To add to the monthly fun, the day had been thirty-three degrees.

Biblical heat and relentless sweating, added to menstruation, can create the sensory equivalent of exfoliating your skin with a cheese grater whilst staring into the Big Light.

Despite the veneer of rage and aggression, my daughter quickly descended into panic once the door broke - no doubt envisaging her future trapped in a hallway, with nothing but a rug and a bit of dust to keep her company, forced to nibble on the leaves of a plastic monstera plant for sustenance.

Her older sister gamely climbed out of one our sash windows and into another via the garden, to reassure her sister and try to help me budge the door.

After nearly an hour of wrangling with screwdrivers, boiling hot and well past my bedtime, I seriously contemplated getting an axe out of the shed and breaking the door into splinters, like the famous scene from ‘The Shining’.

Whilst no doubt cathartic (for me at least), I sensed a horror film-inspired axe scene might not be helpful at this point, so out of sheer desperation I messaged our builder at midnight.

Miraculously, he replied to say someone would be with us first thing in the morning. Hallelujah!

I handed out bottles of water, and gave reassuring hugs, sending the teens off to bed and emphasising that all would be well in a few hours.

I finally slumped into my own bed, exhausted.

I closed my eyes, relishing the silence.

But wait….

I could hear howling.

I got up again. Dragging my weary body from the bed felt like lifting a large and uncooperative sack of potatoes to it’s feet.

Our male dachshund was having an anxiety-driven meltdown all of his own, another family member whose tolerance for stress and changes in routine is unfailingly low.

I climbed through the window and into the garden in my nightdress. A gymnastic feat, given I’m disabled and can’t bend. At all.

We live in a rural area. The darkness is as black as ink thanks to the ‘dark skies’ initiative.

Whilst the bats apparently appreciate this, I certainly didn’t when I was barefoot on the grass, trying to grapple with an anxious dog and get myself back through the window whilst clutching him.

My husband was away that night, so I let the anxious dog (a boy called ‘Biggy’ - big in personality only) sleep in bed with me, knowing I’d have to do a forensic inspection for dog hair in the morning so my husband wouldn’t know I’d broken the ‘no dogs in beds’ rule.

My calmer female dachshund (Pandora - key personality trait: ‘nonchalant’) simply slumped into her little bed with a sigh, and promptly fell asleep. But Biggy insisted on sleeping glued next to me, like a miniature furnace strapped to my side.

Every time I moved him over, he would silently shuffle back, looking to me for reassurance through physical proximity that the world had not gone mad.

Even if it felt like it had….

Aside from a particularly unusual start to the day, with a man coming to loudly saw the door off at 7.30am, we all followed the pattern of a normal day, as if the preceding night had never happened.

There was a conversation to be had with my daughter, but first she needed time to regulate and feel calmer again. The way to achieve regulation in our family is not some miraculous ‘nervous system regulation’ strategy.

It’s routine, predictability and calm familiarity.

It’s having favourite meals at predictable times, watching a favourite childhood film or petting the dogs (regulating for both parties).

Incidentally, that evening her school report arrived in the post. I opened it with trepidation, we’ve had some bigs ups and downs with school through the years to say the least.

It showed a remarkable improvement, and even included a special letter from the headmaster to say how well she has done this school year.

This is huge, for a kid who could barely write a couple of sentences a few years ago and felt near-constantly confused and afraid.

It’s a reflection of her abilities and effort, but also of the effort we’ve collectively made to create the right environment for her in school and at home, enabling her to do her best without sacrificing her mental health along the way.

I thought twice about publishing this story. About the potential for judgement for not ‘getting it right’. About admitting my kids can still have spectacular meltdowns, and on occasion even break furniture.

I personally don’t enjoy seeing parenting presented as perfection, all tied up in a neat bow. It inadvertently puts pressure on parents who are struggling with the reality of raising neurodivergent kids. And I’d venture it’s usually fairly liberal with the truth.

Whilst you might reduce the frequency and severity of meltdowns, and make progress in other areas, there will be meltdowns some days nonetheless.

Especially when sweating through a heatwave in period pants.

The door debacle was a reminder that progress is often messy and imperfect.

But it can still be progress nonetheless.

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You can read my previous article on the challenges and successes of parenting neurodivergent teens here:

A note I related to on the chaos of parenting younger neurodivergent children, especially in the summer holidays can be found here:

Would you like to see more on this topic? If so, please let me know !

Before I became disabled, the only criticism my wardrobe had attracted was from my mother, who repeatedly caught me trying to smuggle her designer jackets out of the house and wear them to the local pub.

Now I get odd looks.

Not because of the clothes, I’m all for being looked at for my edgy sartorial choices. And some of the more choice ones have certainly drawn stares over the years.

It’s because I’m wearing the clothes whilst using a mobility aid.

Some people apparently can’t cope with the cognitive dissonance of seeing someone using a walking stick whilst wearing cowboy boots. Or using a wheelchair and wearing a killer shade of red lipstick at the same time.

I wouldn’t mind if this was just a judgment on my style choices. But it feels like so much more than that.

Like underneath those stares there’s an underlying assumption that disabled people don’t have fashion sense, passions, hobbies or good taste. And certainly not opinions about linen mixes or lipstick.

We’re expected to simply be… disabled.

The assumption that disability must be your whole personality annoys me. That it takes up so much space that there’s nothing more to you, no room for self expression or (heaven forbid!) enjoyment of anything fanciful.

To be visually confronted with a disabled person who cares about her appearance, let alone anything as frivolous as fashion, seems to be difficult for many observers to compute.

Or maybe they’re just wondering why I’m ruining a perfectly good dress with a walking frame….

Fashion is part of my identity and always has been.

From a young age I aggressively rejected anything I found visually disagreeable. And when I found something I liked it would often lead to wholesale adoption of an entire aesthetic. Usually with a level of commitment most people would bring to joining a religious order.

I was an 80s goth, a look my mother described as looking like I had ‘run blindfolded through a graveyard charity shop for drag artists’. The black lace, the cobwebs, the black lipstick. I loved the sheer, glorious theatricality of it all.

I also painted my bedroom deep purple, a compromise with my father on my preferred shade - black. Residing in a room that looked like a tomb completed the vampirical vibe I was currently embracing.

Stevie Nicks inspired a ‘gypsy wild woman’ phase. I wore layered lace skirts, bare feet, chunky amber jewellery and bangles that rattled as I walked. There may also have been a tambourine involved.

My mother was constantly complaining I would burn the house down, as I sang ‘White Wing Dove’, whilst dancing in what I assumed was a suitably ‘wild woman’ fashion, amongst a thick cloud of incense smoke.

Later, in my Noughties diamanté phase I took to various dancefloors looking like a human disco ball, where my friends would be blinded by the kaleidoscope of light glinting off my diamanté encrusted boots.

It is hard to find appropriate clothes when you are fifty and disabled but love fashion.

Others might find this process tiresome. But I love a fashion challenge, so I approach finding trousers which look elegant, have a stretch waistband and don’t cost the earth, as others might approach training for a triathlon - with commitment and a resolve not to give up.

It’s a symbolic competition between me and life. Life might seem to conspire to take away my choices and my fun. But I’ll be damned if it’s taking my earring collection away with them.

I have complicated requirements around which clothes I can wear - a long list of them.

Elasticated waists are a must when you’re habitually uncomfortable from chronic pain. A stiff waistband can tip me over into sensory meltdown. Flat at the front, stretch at the back - that’s a good rule for a decent shape with a less obvious stretch factor.

I wear large ankle and knee supports which I feel look unsightly. The wide leg trouser has been my saviour, as has the ankle length dress. Worn long, sitting over most of my shoes, these look like I’m embracing an elongated silhouette when I’m actually covering up an awful lot of beige compression garments.

I need shoes with comfortable, moulded soles to avoid making joint pain worse. I’m not yet ready to embrace the fully visible orthopaedic shoe so I find stealthy ones instead. To the untrained eye, my current shoes look like vintage trainers, whilst keeping my arthritic vintage feet comfortable discreetly.

I have to carry a thick, foam ring cushion with me to be able to sit down, which I hate because people feel compelled to ask me if I have haemorrhoids, as if that were an appropriate chat to open up whilst queueing for coffee.

I have chronic pelvic pain actually. But either way, a handsome oversize handbag enables me to carry said cushion, along with my dignity, whilst looking like I’m making a statement (which isn’t ’strangers - please ask me about my bum hole’).

I sometimes disguise my foam ring cushion inside a square navy velvet cushion cover. It makes it look less like medical equipment and more like something a victorian lady might have sat on whilst doing embroidery in her drawing room.

One day I took it out on the Tube and placed it carefully on my seat. The young woman next to me - immaculate edges, impossibly long nails, maximum glam - started laughing.

“Why are you laughing?” I asked.

She looked at the cushion, looked at me and said, “You bring a velvet cushion to sit on on the Tube. Queen!”

Then she put her hand on my knee and laughed so hard that I started laughing too. We laughed until the next stop.

Queen ? You better believe it.

Some days make up helps me to feel better. I have applied myself to finding an under eye concealer which stops me from looking dead, as though I’m on a one woman search for the Holy Grail.

I love a bright lipstick or a berry tone in the winter. I have scoured the earth for lipstick that I can’t feel on my lips because I find it to be a sensory nightmare.

Anything sticky becomes unbearable in milliseconds. The thought of the wind blowing my hair into sticky lip gloss makes me want to tear off my face with my bare hands.

I use mascara that literally doesn’t budge, even if you develop a menopause or POTS related sweat in the heat, or because you’ve inadvertently found yourself under fluorescent strip lighting, which seems to be busy sucking your soul out of your body.

There are many interests and sources of joy which are lost through disability. I can’t go for a run or even a walk any more, do weights, go to work, or take a class.

All the more reason to seize joy where we can find it, no matter how small or seemingly inconsequential. The small things add up. They may not be world changing, but why should they be?

I’ve written before about Gen X women and our driving need for ‘achievement’ - and subsequently, how hard it is to allow ourselves to like something just because without mentally feeling the need to justify it, or to feel it has to be purposeful, profitable or worthy.

As midlife women, we don’t often give ourselves permission to simply enjoy ourselves, whatever that looks like.

I’m here to advocate for letting ourselves embrace creativity, fun and frivolity wherever we can find it. And if you feel like it, to do it all in funky sunglasses and an excessively large hat.

And you don’t need to be into fashion to do that.

For my 50th birthday I bought a purple, sequinned trouser suit off Vinted. I luurrrvvve that suit. It reminds me of who I am inside, and makes me feel younger and bolder again.

It only cost £25 - but that feeling, especially for a midlife disabled woman, is priceless.

It reminds me that some days I may be down, but I’m not out.

And I have the sequinned suit to prove it.

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50th birthday picture below.

Them: just be yourself.

Me:

We were the first generation of women who supposedly had access to equal educational and career opportunities.

But no one told us that having it all also involved doing it all.

We were not gifted the choice of whether to take on the careers of our fathers or the domestic commitments of our mothers. We had the unique ‘opportunity’ to take on both of the roles that they had considered to be full-time occupations and merge them into one 24/7 profession.

Performing superhuman levels of endurance whilst calling it normality is simply what was expected of us.

This was exhausting and destructive for many women, but especially risky for neurodivergent women who we now know through our collective experiences, are much more prone to burnout.

If you’ve read some of my work about my younger years, you will know that I have a rich fantasy world inside my head, and no matter how fantastical, it’s always felt entirely achievable in real life.

In the same way that I felt I could realistically reproduce the stage show on roller skates that was ‘Starlight Express’ (in our school hall, at age ten) I also believed I could realistically reproduce the lives of the aspirational female role models who were held up to us as examples of success.

As a woman with ADHD, I was perhaps particularly vulnerable to these ideas. I absolutely never undertook anything in half measures. I was in or out, up or down. The middle remains a challenging place for me to access even now.

So, if I was shown a woman who was a partner in a law firm, had five kids, an MBA and a side hustle in international supermodeling, then that became the ideal that I would set about trying to create.

Imagine telling every average man that he could make the England football squad just because David Beckham managed it.

Or pointing at an Olympic marathon runner and insisting that because one man can run 26 miles in just under two hours, every man should be capable of it and aiming to do the same.

How absurd.

Yet we were constantly shown these ‘aspirational women’ as though they were ordinary. These women, in reality as rare as unicorns, were our very own David Beckhams.

On the face of it, I was at an advantage. Being ambitious, practiced at confrontation and largely impervious to criticism thanks to years of practice, was a pretty killer combination for building a career as a corporate leader in intimidating, male-dominated environments.

But this was just one side of the story.

Many auDHD people will recognise the feeling of your ADHD traits being firmly in the driving seat of your life, with their foot slammed permanently to the floor, particularly in your younger life.

Meanwhile, your autistic side is resigned to the back seat, terrified and clinging on for dear life.

The issue with the fantasy was that it never showed the downsides, the actual cost to the individual of it all: the cost to relationships, to your physical health and your very sanity.

My lack of ability to emotionally connect with risk meant that I couldn’t mentally conjure these potential downsides by myself, and we were resolutely never shown them.

My lack of interoception also meant I could ignore my body’s signals of physical and mental discomfort for long periods, only registering them when I finally rested or when they reached crisis point.

Even before having children, I would reach a point each afternoon where I would feel physically unwell with exhaustion, like I was coming down with the flu. The brain fog would become like wading through thick treacle.

I would push through the exhaustion, because human limits could be overcome with mindset.

Everyone knew that.

Just look at David Beckham.

Gen X women were always encouraged not to have any discernible needs, to forever maintain a ‘cool girl’ persona. This performance of lack of need applied to relationships, and it also extended to workplaces, and even to motherhood.

We wore competence, hyper-independence and unfailing strength like an impenetrable armour.

We ignored what our bodies needed, focusing on either starving them down against their will, or pretending that we were just like men in an attempt to compete more effectively with them.

I went through this charade with grim monthly predictability. Grey-faced, running back and forth to the bathroom and dining exclusively on ibuprofen. Staying at home never even crossed my mind.

Instead, I simply concentrated harder on pretending not to have a uterus.

I was fooling no one.

I ran a half marathon in under two hours not long before I got pregnant for the first time. The process of conceiving took much longer than I expected. I made no connection between my suddenly erratic and missed periods and the strain I was putting on my (as yet undiagnosed) hEDS/POTS body with all the running.

Running was good for you. Everyone knew that, right?

Eventually, however, I finally became pregnant and that’s when things became really toxic.

(I’m going to write a separate article on that, not least because I have a stream of pure, white rage that I need to let out.)

After my first baby I was physically damaged, traumatised and exhausted. Going back to work, even a year later, was difficult. I had back pain, coccyx pain, an untreated prolapse and permanent fatigue that I could never seem to shake off.

I put this down to the fatigue that all new mothers describe. Lots of women have fatigue or back pain, I reasoned. When everyone tells you motherhood is exhausting, it’s very easy to miss the point where exhaustion becomes pathology.

When I became pregnant again, my pelvic instability quickly became so bad that I could no longer walk, and a C-section with anaesthetic failure was the icing on the cake.

All of this now makes sense, through the lens of an Ehlers Danlos diagnosis. But I didn’t even know what EDS was back then. I just thought I was either very unlucky, not trying hard enough, or both.

I never made it back to work after my second child. My body finally collapsed in spectacular fashion and never recovered.

My career was the Starlight Express of my twenties and thirties. It also ended in an absolute train wreck, only without the roller skates.

Prior to my ADHD diagnosis at age 50, I looked on this turn of events as a mystery, a fluke happening that my health deteriorated so suddenly and so sharply.

The life I’d been leading was so normalised. But was it normal? Or had we been sold a dangerous lie?

I now recalled things that I had always dismissed, and saw them in a different light, through the lens of this late diagnosis.

I hated the strip lighting, the glare of screens, the constant sitting down. I couldn’t concentrate in long meetings. I hated wearing uncomfortable shoes, stiff shirts and proper bras. The warm bodies crammed together on my commute made me feel nauseous.

I spent most of my weekends walking and hiking for hours, swimming outdoors and being in nature, just to mentally survive the office week.

It never occurred to me that other people weren’t processing the world like this. But looking back I can see that the effort of doing what were considered everyday things, was actually monumental.

These daily assaults were like death by a thousand cuts for the quieter part of me that just needed to float in the water, or sit under a tree in the sun.

Looking back from my vantage point of midlife, with my laundry list of chronic health conditions, I can see with 50/50 hindsight that my body spent decades telling me to slow down.

I spent decades congratulating myself for not listening.

Disability and maturity have together forced me to release the quiet voice of reason from the back of the car and let her do the driving. I acknowledge limits and discomfort and try to work with them, not against them.

Allowing myself to have limits is psychologically challenging, even after all these years of disability. There is shame attached to not being the Gen X superwoman we were all trained to be, and it’s hard to shake off.

The idea of ‘having it all’ hurt all Gen X women.

But for neurodivergent women, a toxic mix of culture and vulnerable neurobiology meant it often hurt them more.

Our carefully constructed armour didn’t always protect us, sometimes it just stopped us from noticing we were injured until it was too late.

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To read about the Starlight Express debacle, go here:

Many parents of neurodivergent children experience constant hypervigilance: Anticipating an endless stream of problems before they happen, solving crises, standing up to bullies and battling oppressive systems on their behalf. The constant cycle of the invisible fight becomes so routine that it becomes difficult to ever consider standing down, or even know what that looks like.

As the hands-on parenting years slowly draw to a close, you’re left trying to gradually hand over the reins, while feeling like a soldier who’s left the trenches but remains there emotionally. The metaphor isn’t accidental. Many parents of neurodivergent children come out of these years carrying genuine trauma.

You continue to function on a ‘war footing’, your nervous system trained to be that way over the years, until it becomes the default setting. And now you can’t remember how to be any different.

There came a point when I realised my hypervigilance, once necessary, had now become overbearing and was ultimately reducing my daughter’s own agency.

On my current trajectory, I could absolutely see myself becoming that mother. The one ringing my twenty-year-old daughter’s manager because he had the audacity to tell her off for being five minutes late for work.

Or worse.

I picture myself striding across Tesco staff car park, wrestling Riley from Fruit and Veg to the ground and attempting to strangle him with the ties from his blue nylon apron.

‘Help,’ he would gurgle.

‘Mess with my daughter again and I won’t be so lenient next time,’ I’d hiss into his pallid, spotty face.

(I would sound like Reggie Kray. Because that’s my default persona in any confrontation fantasy - see audio version for more).

A proportional response, surely? She couldn’t help the traffic. He has no idea what she’s been through. How dare he.

Fortunately for Riley, this scenario is unlikely to play out. I am disabled and can’t walk very well. The more probable outcome is that he would effortlessly outpace my most vigorous shuffle, before I fell over and had to ask him to help me back up again.

At best it would be an amusing diversion for the staff having a cigarette break on the loading dock.

I’m obviously not advocating attacking actual supermarket staff in car parks. My point is that your nervous system is left with the emotional residue from years of fighting.

You don’t just stop protecting your teens as they move towards adulthood. But your role becomes entirely different. Especially when you have oppositional-profile daughters, who value independence and agency above all else.

You’re now there to support from afar, to remain loving but give input when invited. Your role is that of someone who’s been forcibly retired then occasionally asked to come back as a consultant.

Only your nervous system hasn’t got the memo, and still thinks it’s CEO.

In the famous book, ‘Let Them’ Mel Robbins tells a story about needlessly interfering in her daughter’s choices around prom.

Oof. Did I relate to that. My daughter’s prom was recently, on the hottest day of a legendary heat wave. She was worrying about her hair. I was worrying about everything else.

‘Have you got a fan, should you put your hair up, is the venue air-conditionioned, have you drunk enough? I’ve not seen you drink for hours, take some electrolytes, make sure your phone is charged, let me know if you need picking up early, is the dress too warm? Don’t go outside for photos. Wear a hat.’

Wear a hat?! And ruin the hair. I’d clearly lost touch with reality.

My job in this scenario was to buy the dress, book the hair appointment and make a few drinks, as well as plenty of supportive noises. Nothing more.

‘Let Them’, I reminded myself as they all trooped off after prom to a remote campsite with no toilets, running water or tents. They were woefully ill-equipped.

One very game set of parents had volunteered to discreetly supervise from afar in case of a genuine emergency.

But what if it was hot, or cold? Did they have water bottles, warm tops for later, fold out chairs, adequate phone signals. Was there insect repellent? What if the camp fire got out of control and burnt the whole County to the ground?!

Predictably they did get cold, they got bitten, they were boiling hot and thirsty when the sun came up. They got no sleep.

They also had a great time. That’s what they’ll remember, not some mild discomfort.

I recall ‘camping’ in a field with my friends when we were around the same age. We all got severely stung from head to toe by nettles, it was pitch black and we had no torches, we were freezing cold and damp by 4am due to having no sleeping bags. We hydrated with Malibu and Coke.

The result? We had a fantastic time! I still recall the fun of it now, 35 years later. As a Gen X-er you can be sure my mother wasn’t there fussing with bottled water and insect repellent. It’s almost like by letting us make mistakes, we would learn to do it differently next time. And learn we did.

It was brought home to me recently in a meeting about my daughter transitioning into Sixth form, that all the years of working on assertiveness, self-advocacy and communication skills had paid off.

It’s now only two short years until my daughter will be out in the world caring for herself. Possibly at University some miles away. Yet, ever on the offensive against ableism, and with a history of anticipating problems and shooting them down before they can even fully form, I immediately launched unprompted into my speech about accommodations.

Until I noticed I was giving long winded justifications I’d not even been asked for.

I stopped myself mid sentence and apologised, letting my daughter talk instead.

In a few sentences, she explained her physical and mental health challenges, the adaptations she needs to succeed, and delivered it in a way that clearly landed. Her new Head of Sixth Form agreed to her suggestions and they discussed the details of how it would work. Job done.

Meanwhile, I managed to feign a relaxed demeanour, despite any formal meetings like this one automatically turning my internal pressure gauge to ‘high,’ I managed not to relieve it with an explosion of words.

Or to quote from the Equality Act.

Progress.

In future, I’ve resolved to focus only on issues which are systemic or of genuine consequence. Or those that might need an adult context or experience to figure out. The day-to-day issues of friends, teachers, school work and casual employment, everyday minor setbacks, can be mentally filed in the category of ‘advise when invited.’

Instead of taking control and directing by default, I will try to be curious, and ask questions along the line of, ‘What do you think could be some options for handling this?’

(Rather than, ‘you need to taser Riley if he talks to you like that again.’

Only joking. Kind of).

The handing over of the reins is very individual in both timing and the extent to which it can be achieved. But we will all face points where we need to trust our kids with decisions.

Sometimes things go wrong, like when my daughter Googled how to stop her insect bites itching at 2am and was instructed (by Tiktok), to press hot spoons onto them. Her interpretation of this advice was to put a metal spoon in boiling water, straight from the kettle, then press it onto her skin. Suffice to say she looked like a victim of medieval torture.

(We later decided this would have been a punishment called ‘a Spoon Scalding’ and be meted out to women who were too loud and had opinions. Like us).

Regardless of incidents with campsites and hot spoons, our work is no longer to helicopter, but to turn towards ourselves and figure out how to calm our nervous systems after years of fighting.

To process the invisible trauma of it all so we can be a calm and reasonable presence, who our children still want to consult.

Even when they no longer have to.

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Note: I wanted to write this article in part for parents still very much in the trenches with younger neurodivergent children, fighting battles that no one sees. It can feel relentless and even hopeless at times. You fear for the future constantly.

Please know that your love, listening and support will absolutely pay off, although it may not feel like it right now. Our kids may need more and different support, and for longer, but they are resilient, amazing little people who are often a lot more capable than our anxious parent brains will allow us to believe.

One day you may find yourself sitting quietly in a meeting while your child calmly explains exactly what they need. And you’ll realise your monumental efforts are starting to pay off.

Until then, hang in there. I see you, and you’re doing an amazing job.

Internally, I roll my eyes. Here we go again.

It’s been over a decade since I was forced to abandon my hard-won career, after my health crashed in spectacular fashion. You would think I’d be used to this conversation by now, have a standard answer at the ready. But I never seem to quite find one that works.

It’s very difficult to explain to people who haven’t lived with chronic illness, that showering, dressing, drying my hair and putting on a proper bra IS work.

If I’m out in public looking vaguely presentable then I’ve already completed the chronic-condition equivalent of a 10k run. Only without the medal.

For someone to ask if I work in the full-time-employed sense they are alluding to, highlights how invisible the ‘work’ of getting through every day life can be.

I’ve raised children and managed a family whilst struggling under the weight of complex illness.

I’ve staggered around the kitchen making packed lunches with yet another migraine, pausing to vomit in the sink, clutching my dark glasses to my face as I tried to find juice boxes in the fridge with my eyes half closed.

I’ve sat through Parents’ Evening on a pile of carefully arranged memory foam, trying to ignore the overwhelming pain in my abdomen and too full of codeine to follow what was actually being said.

If that’s not work then I don’t know what is.

My previous career was in corporate affairs - advising CEOs, being involved in high profile court cases and government enquiries, managing daily crises….all a cake walk compared with the trials of more recent years.

But it all remains largely invisible.

My attempts to explain all of this inevitably send a conversation veering off down routes I like to avoid, such as my health history, which is a three hour TED talk for the executive summary alone.

I found myself desperately trying to emphasise that I absolutely would work if I could. To impress upon people that I am genuinely unable to do so, by trying to explain the thousand-piece jigsaw that is my health, all within a few sentences.

Last year, as I turned fifty, it felt like life handed me a pair of glasses I didn’t know I needed. Suddenly I could see, with uncomfortable clarity, how I was seeking approval in these conversations, from other people, but also from myself.

Once I noticed it, I was furious. I’ve always prided myself on being confident and unapologetic - brazen even. Yet, my attempts to answer the question of whether I work amounted to repeatedly apologising, for daring to develop a health condition that happens to be poorly understood.

I felt ashamed to note that I was buying into the idea that if I wasn’t achieving, striving, producing, a useful worker bee, that my worth as a person was somehow less.

It wasn’t just my response to this question that needed to change, it was my longstanding guilt about not working. My attitude to myself as a human being, not a human doing.

There’s often a cavernous gap between seeing your patterns of behaviour and actually changing them.

Changing the way I approach the question of my employment status has been a manageably small but important step towards the much heftier long term goal of giving up this odious approval-seeking-slash-apologising once and for all.

Rather than continuing to tie myself up in knots, I decided to draw a firm but gentle boundary around the topics of my health and employment.

Now, when people ask what I do for work, I tell them the truth, and add some humour, before redirecting the conversation in a way that’s proactive but not defensive.

“I don’t work because of my health, but I won’t bore you with all that. It makes War and Peace look pithy,’ I might say.

Then I ask them what they’re interested in at the moment. When it works, it can be a jumping off point into a more meaningful conversation.

Sometimes people seem slightly thrown, or worried about boring me, but often they launch enthusiastically into describing a hobby, a recent trip, or a book they’re enjoying.

People are my lifelong special interest, and my brain adores new information on yet undiscovered topics, so I’m happy to hear all about things that may be considered ‘boring’ by others.

My ever-changing collection of special interests might drive algorithms to despair, and cause online personality quizzes to hand in their resignation, but they come in very handy when talking to actual people.

Turns out the most interesting thing about any of us is probably not our employment status. And mine is not my health, which would send even the most committed listener to sleep.

Perhaps I simply need to remember to make space for conversation instead of accidentally filling it up with my unspoken guilt. Or even better, to start shifting that guilt and letting it drift away.