There’s something I need to tell you.
I am so much more sick than I've ever let you know.
I’m basically a health-catfish at this point.
Not intentionally, of course.
If I’ve been lying to you, it is only by proxy. The denial runs so deep its more like a refusal, at this point. Because I really don’t want it to be true.
How can I describe my current health state to you most accurately?
In numbers, maybe -
4 hours of meaningful daily wakefulness
18-20 hours per day in bed
Leaving the house 2 or 3 times per month
3 years since I last drove my car
11 prescription medications to take daily
26 years since all of this first started
7 different complex diagnoses
1 camping toilet for when I’m too sick to walk to the bathroom
Half of my business revenue lost
The shame I feel committing that truth to the screen is heavy; the fearful animal part of my brain is convinced I’ll be thrown from the pack. Who wants a coach that lost half her business? Who wants lifestyle writing from a woman with no life?
But of course, I’m still the same person I always was. I’m still driven to help people and make connections and live beautifully and well. I’m just dealing with shittier circumstances right now. It’s important to remind myself of that.
I do not want to be trapped like this. A redundant thing to say, you might think, but I’ve been blessed with that constellation of amorphous symptoms and overlapping diagnoses that makes the wrong kind of doctors tend to roll their eyes. (Lord, grant me the unerring self conviction of a doctor who read a mandated half-page in a textbook 40 years ago and has never revisited it since 🙏🏻.)
The kind that affect women, overwhelmingly and disproportionately, and so have never attracted any serious funding or research as a result. The kind that get called trends or malingering or TikTok diagnoses and other dismissive pejorative terms. And I get it - it seems impossible that so many young women are dealing with a mysterious and crippling illness like this. That would be a crisis, if it were happening. So we try to push it away.
I’m safe, at least, from the worst of these accusations by mercy of my heart rate magic tricks and the fact that I was diagnosed before it was trending. Not to brag or anything, but I’ve had this for over 20 years 😎.
Not that anyone diagnosed it that early, of course. I would talk to people - doctors, boyfriends, family, friends - and have my struggles unilaterally dismissed. We’re good at that, aren’t we? Minimising tiredness as normal. Wafting women’s pain away.
I was only too eager to hear it, though. Who wants to be sick with something vague and undecipherable? If I was just lazy, I could overcome that.
It took my own health getting unignorably bad for me to finally advocate for myself properly, and by then, so much damage had been done. And still, the masking dies hardest. Even now, I’ll waste precious energy pretending to be ‘normal’ to people who don’t matter at all. It’s a survival mechanism of sorts, I suppose, but it’s also just escapism for me. I cling to these moments where a stranger perceives me as a whole and fully healthy human. For that handful of minutes, I get to be her again.
I cling to these moments where a stranger perceives me as a whole and fully healthy human. For that handful of minutes, I get to be her again.
It’s important to me that you know that I did not choose this. In fact I’ve explicitly un-chosen it, daily, voraciously, for the past 20 years. I’ve rejected it as a diagnosis and a reality, and worked tirelessly (ha) and tenaciously to make it un-true.
I’ve paid every possible specialist, knocked on every conceivable door. And when none of those helped me, I’ve made new doors for myself; novel drugs bought from India, research peptides mixed in tiny glass jars. I’ve become my own doctor and specialist and helpless lab rat. And still, my life continues to shrink.
I mean, I’m a big proponent of minimalism. I truly believe that so many of the things we consider essential are actually quite optional, and that our life can be better with less. Less in our homes, in our businesses, in all the ways we strive to control how we’re seen by the world.
But this sickness has made my life a study in minimalism down to the most minute of movements. Long aching seconds while I work up the energy to drink from a glass, or turn down the radio, or push the hair from my eyes. Learning to ignore all but the loudest, most demanding of my body’s needs, because it is too expensive to meet them. Not all the time, of course - but some of the time; for multiple hours, and almost every day.
Chronic illness has made me pare back and pare back until I hit the core.. All the waste and unnecessary and the frivolous was gone from my world long ago. Now when I make cuts - which I must, with only four hours in which to do everything - what’s lost is inevitably the juicy goodness of life.
Supermarkets. Dog walks. Coffee with friends. Opening my own parcels. Training a bird to do tricks. Do I want to shower today, or reply to some texts? Simple touchstones that can seem insignificant, but that tether us all to this life.
I read about prisoners kept in solitary confinement. Each day, they’re taken outside for a single hour of fresh air and exercise. I envy them that.
I try to remain committed to living a beautiful life.
Most of my energy units go to my business, then my daughter, then my husband. If there’s anything left after that, then I give it to beauty.
Does that sound like a messed up priority order? Perhaps it is, but I know it’s not fair to live just for my family, and work remains my consistent connection to the outside world, and to magic, and to myself. Helping people, sharing ideas. Writing desperate dispatches from the front-line of a battle nobody sees.
I’m still the breadwinner, still bring in six figures each year. I take a lot of self esteem from those facts, I suppose. It’s one of the ways I can still know that my life counts.
And beauty? We treat it as frivolous, but beauty feeds my soul. Beauty nourishes me even when everything else is painful and hard. If I’m only awake for a few fragmented minutes, I want those brief and blurry-eyed perceptions to count. The sun through the skylights; a single peach rose against soft blue-green glass. There’s resonance and magic in that. I take my joy where I can find it right now.
There are some better days, too, of course. Days when I get to go to a park, or share a coffee with friends. Days by the river in France, lying with friends in hot-baked sand and icy cool waters, instead of alone in my bed. But they are few and hard and often unpredictable. Always, I’m so hungry for more of this life that I take in too much of it. push my body too hard, then pay the price for days afterwards in the form of increased pain, increased fatigue, decreased capacity to exist.
So I live between hope and despondency. That I can still be the same vibrant, creative, fierce and passionate human I’ve always been, but with my body now warped into a cage.
And I encounter new people, daily, through my work - almost always women, of course - struggling with the exact same things. Fatigue, daytime sleepiness, vaguely auto-immune symptoms and tests from the doctors that tell them they’re in perfect, dazzling health.
Together, we collect up different diagnoses - Idiopathic Hypersomnia, Dysautonomia, CFS/ME, POTS, Post-Concussion Syndrome, Long Covid, MCAS, Post Viral Syndrome. Wishy-washy labels for all the things we don’t know. Specialist doctors describing, like in the fable, the one part of the elephant they can see. And then telling us all, individually, that there isn’t any treatment. They’re truly sorry, but there’s nothing they can do.
What can I say to these women?
What can I say to myself?
This isn’t your fault.
You did not deserve this.
You can still make a contribution.
Your story still counts.
A few months back I talked to
”I hope it makes people angry” she told me, in a way that made my arms spring into goosebumps. “I hope they’re furious”.
It’s stuck with me. On dark days, it’s almost a reason to keep on going.
I want to be here for the day when we prove all of this.
I want to see a time when our daughters are safe.
So, if you read this far, that’s my battle cry to you.
Please don’t feel sorry for me, for them, for all of us living like this.
Feel livid.
PS - I read every comment and they mean the world to me, even when I’m a little slow to reply! xx
I am livid. It’s not ok. It’s so unfair & I hate that the response is just “we don’t know”.
Fwiw just know in your 4 hours a day you’re still somehow more magical than anyone else I know. Love you.🤍
Thank you for sharing this Sara, so brave and beautifully written. We need to hear these stories so we can understand more about life in other people's experience. Your honesty and the way you think are some of my favourite things about you. Oh, and your skin, your skin is beautiful!