I pay attention to the parts of my body without pain,
try to feel my ears as flesh and gristle,
not to hear the birds sing or listen for my phone to ring.
I move to my toes, which are comfortably distant,
part of a different story.
Atiyah is on her way across the sea
With her high winds and white rain.
My skin is heavy.
If I didn’t know, could I sense her coming?
In November I resigned from teaching and I am adrift,
spending whole afternoons in a brown armchair,
chasing thoughts that go in circles
like dinner in the microwave.
When I tell a friend she leans away,
as if my words might be infectious.
On my way to the fridge,
I knock over a vase of flowers.
They are almost dead and the petals flutter to the floor,
a shattered image.
I want to be direct with you but I only know how to be elliptical.
I am a panicked narrator trying to form sentences.
Words are life lines.
I am looking for a name for the storm in my body.
At the bottom of the ocean
gobi fish keep pistol shrimps safe by guarding the home they share in the sand.
And when they swim together,
the shrimp rests its antennae on the gobi
to feel its chemical warnings.
In January the GP asks me to bring an inventory of my symptoms.
There is a man in the waiting room with spider plants in his pockets.
My heart is racing and my legs are shaking.
I tell the GP about my fluctuating fatigue, aching shoulders and neck, pain in my arms, wrists, fingers,
chest and diaphragm, nasal drip, sore throat, swollen tongue, loss of appetite, weakness,
breathlessness, fizzing skin.
The sensations of my brain vibrating and an echo in my head.
My ears, full of dark matter, hear too much.
This gives an impression of distinguishable complaints
whereas all these feelings combine into a sensational mix.
I haven’t finished. Sometimes my jaw is heavy and my lips feels wobbly.
My mouth wants to hang open.
The GP says something but it’s like a puzzle.
Writing doesn’t give form to illness, but
helps me see its shapelessness.
I’d rather wrestle with words than with doctors,
re-arranging myself as lines on the page.
The cost is exhaustion and self-exposure,
but silence brings separation and invisibility.
In February my symptoms become asymmetrical
moving down the back of my head and my throat
then slanting off across my lung and stomach
towards my left thigh.
A doctor who is a friend compares me to a software problem,
saying my processing system is malfunctioning,
and my connections are broken.
I don’t identify as a faulty machine.
In April I get my official diagnosis: ME/Chronic Fatigue Syndrome.
I am referred for six sessions of Cognitive Behavioural Therapy on the NHS.
What does therapy have to do with feeling like I am dying?
Under my favourite tree, eating a boiled egg,
I try and diagnose the situation I’m in.
The sky is a bruise.
I am a fallen statue.
But just because I am recumbent doesn’t mean I am docile.
I commit to bending, so that I do not break.
May is full of hot days and the garden is in superbloom
I touch the petals of a palest yellow rose to my lips
which are one hundred times more sensitive than my fingers.
Dark purple tulips hang in the humidity.
Time sticks to me, like wet leaves on skin.
In my dreams I am all about speed.
I whizz about on zipwires, toboggans and lilos with wheels.
I am still having adventures.
I am still, having adventures.
The CBT therapist explains the biopsychosocial model of illness.
She diagrams a topology of anxiety, flare-ups and loss of control.
Then she draws a circle and puts me somewhere on it,
so that I can see the spiral I’m in.
Ants move aphid eggs into their nests
and drink their sugary milk.
The ants thank the aphids for providing these little underground dairy farms
by protecting them from predators.
Names are dangerous.
ME/CFS goes way beyond fatigue, which is far too gentle and polite,
and sounds like tiredness.
We prefer a more violent language,
of crashing, hitting, poisoning and hell.
The more I learn about ME/CFS,
the more I understand that our bodies are part of an ongoing conspiracy
which messes up biology and psychology,
in a devastating inversion that blames physical pain on mental distress
as if our weakness is a moral problem,
and we just aren’t doing enough to get better.
No one is responsible for us but us.
We’re in a category that started with the invention of hysteria;
feminised pathologies located somewhere between our wombs and our minds.
I do not want to want to join the genre of the suffering woman,
so I am looking for a new vernacular of illness.
Some prominent psychiatrists say
ME/CFS can be spread just talking about it,
a verbal contagion.
Medical ignorance is powerful and difficult to dislodge.
Meanings turn too easily:
Complaint – compliant
Feel – flee
Science – silence
Pain – panic
The twist is that the more we do to help ourselves
the more we dig ourselves into being sick.
People who are ill are often told they are strong,
but not people with ME/CFS,
because being strong makes us more ill.
Way too late, science is starting to learn how
our cells and mitochondria misbehave
and our immunological pathways overreact.
Like we always said, this is molecular.
If you tell us any version of the idea that illness will make us better people
we will well up with angry tears that will fly at you like small arrows.
And don’t ever call us amazing.
Write to your MP and tell them care for people with ME/CFS is a disgrace.
A diagnosis should open pathways of care and attention,
but for ME/CFS it closes them
and then uses our despair as evidence against us.
Without treatment there is speculation.
And I seem to be open for interpretation.
Have I tried radishes? Turning my bed round? Balancing on one leg?
Eating more salt? Eating less salt?
Investigating for cavitations?
Perhaps it’s the rain or the sun or the cold or pollution or mould or damp or pollen or poor dental
work or heavy metals?
The therapist gives me information about pacing:
“If you want to tidy the house as you have guests arriving in the next few days, divide the cleaning
and tidying up over a number of days, rather than tidying the whole house in one go the day
before your guests arrive. So, if you knew, for example, that your guests would be arriving in five
days, start to clean things up, say, three days before, a little at a time.”
I assume these guests must be metaphors,
as no-one is coming.
Also, I wonder, will I ever be someone else’s guest?
Ants cut holes in the thorns of certain acacia trees
making little waterproof nest for their larvae and eggs.
They feed on the tree’s sweet syrup and to thank the tree they
attack predatory insects.
I sense the narrative pressure of being ill.
But I don’t have the right kind of story.
ME/CFS is a permanent condition of unrecovery, with very little action.
When I am doing better,
people want that to mean I am getting better.
They want the promise of recovery,
and if I can’t give it to them, they want to give it to me.
I have my glorious moments of course,
But they are in a minor key.
My friends and family support me and exhaust me,
and help me keep hold of feelings of love.
One tells me about stillness in nature, about two-toed sloths
that are so slow that algae has time to grow on them,
making them a good home for moths and beetles too.
I want these easy intimacies
but my questions of care are more political.
The therapist educates me in the techniques of care-ful and rotational thinking.
She has a sharp and beautiful intelligence
but I’m not ready for her ideas about acceptance or detachment.
I tell her about all the people with amazing bodies that I see on TV,
that plough fields and jump out of windows and over fences and swim away from sharks and chop
wood and dance.
After six sessions of CBT, I am on my own again.
Before I go, I have to rate my scores:
o Interest or pleasure in doing things
o Trouble falling or staying asleep or sleeping too much
o Feeling tired or having little energy
o Trouble concentrating on things
o Moving or speaking slowly
o Poor appetite or over-eating
o Feeling bad about yourself
o Feeling that you are a failure
o Feeling that you have let yourself or your family down
o Feeling down depressed or hopeless
o Thoughts that you would be better off dead.
Words can get in the way of understanding.
I am depressed because my illness is neglected,
I am not ill because I am depressed.
For ‘care’, the thesaurus, lists ‘concern’, ‘load’ and ‘responsibility’ as its first three synonyms.
There is no such thing as an independent language for illness.
To be a no-body.
That sounds good to me.
Oxpeckers ride on the backs of
wildebeest, rhinos and zebras.
They eat their parasites such as ticks and blood-sucking flies and in return for this feast they
warn the hosts of any impending danger.
Even though we can’t wash our own hair,
The government would like us to work,
reminding us that even in illness we remain capitalist bodies.
Apparently our ‘beliefs’ are the problem
and getting a job would help us focus on something more productive.
We not very good consumers either:
we don’t spend enough money in restaurants or on holidays.
How do we care for each other when we struggle to care for ourselves?
How do we come together when we hardly have the energy to get out of bed?
I google ‘union of the unemployed chronically ill’
because there must be something other than #NEISVOID #chronicillness and #missingmillions
I see a picture of neat rows of empty shoes outside parliament put there by people with ME/CFS in
and a group of people with tape over their eyes and mouths,
which I think is about us being prisoners in our own bodies.
It is not easy to be radical when you are ill.
In August I tell my GP I want to see a specialist.
What do I think I need? She is asking me.
A physiotherapist? a neurologist? a gastroenterologist? an immunologist? an endocrinologist?
Medicine is so cut up. I want a bodyologist.
The only way to reconnect the parts is to write the whole.
Words get me closer to truth than any test.
The GP refers me to a rheumatologist and offers me anti-depressants,
Which I decline, and then, a few months later, accept.
In September, my neighbour, who is also ill, invites me to join her on the doorstep to clap for the
nurses and frontline workers.
I know it’s a political smokescreen,
so I bang pots instead to raise the noise to a protest.
There are so many reasons to be furious.
Today I have a conversation with a friend:
Me: There is a school in Camden where they do skate-boarding lessons.
Them: How do you know?
M: On my way home from an appointment, I saw 30 kids walking to the skateboard park with their
T: How do you know it was a lesson?
M: They were all walking in a line, wearing school uniform and they all wore helmets.
T: How do know they were doing it with school?
M: It was 10.30am and there was an adult at the front and back of the line.
T: Are you sure the adults were teachers?
In November, I speak to a different GP, describing persistent pain.
My voice trembles,
like a wire with birds on it.
“So you feel as though this is a catastrophe?”
He gives me the number for the Samaritans.
At St. Leonards Hospital the rheumatologist doesn’t turn up for my first appointment.
When I finally see her three months later, in January,
She presses all my joints for tenderness
And then has me bend and fold and stretch
To help her find a signal in all the noise.
Up close, she smells meaty.
She laughs that I know more about my condition than she does.
It is true, but not funny, that we are our own experts.
In corridor I hear a patient saying,
“Please, this is a one hundred per cent real life situation!”
Joshua trees and yucca moths have been in a relationship for 40 million years.
One can’t survive without the other.
The moth’s larvae depend on the seeds of the yucca for food
and the plant can only be pollinated by the yucca moth.
If one were to disappear, the other would die.
What happens when an author is no longer an authority?
I do not recognise the body that is written in my medical records.
To try and stay in control of the story,
I am putting together the fragments and non-observable facts,
That I write everyday onto my phone.
Language is a refuge.
Sometimes there is just hot, speechless grief.
When you lie down and cry for long enough your ears fill with tears.
There is no virtue in ME/CFS, just an excess of feeling.
Absence of care puts us in a dark and vulnerable place,
between desperation and alternative healthcare,
which welcomes us with the possibility of recovery.
Cranio-sacral therapy, heart rhythm breathing, the Perrin Technique, somatic
experiencing, ANS Rewire, Buteyko breathing, biomagnetism, integrated medicine,
Chinese herbs, Chinese massage, keto-paleo diet, vitamins and supplements, UV
treatment, hyperbaric oxygen treatment, acupuncture, fasting, CBD oil. This is just
some of them.
I am fortunate, not because any of these treatments worked for me,
but because I can afford to try them.
These therapies fill a gap where medical research should be for everyone who has ME/CFS.
And they are private, so don’t produce public knowledge.
The only good advice for people who are ill is not to be poor.
I try the Lightning Process
which tells me that my brain drives the problem in my body.
I agree that my attitude affects my experience of illness
but since I also know my brain is my body I am instantly in the wrong paradigm.
For nine months I challenge my cognitive habits and patterns,
STOPPING thoughts instead of listening to them.
So that I can unlearn the illness.
‘The anticipation of the symptoms brings them on.’
When people ask me how I am, I am not allowed to tell them.
At least one hundred time a day I have to visualise myself being well
And step to one side to enter a new timeline.
Reading other people’s accounts, I am lucky it didn’t make me worse.
We do have new and improved NICE guidelines,
but words take time to spread and we are weary with waiting.
People with ME/CFS often die of heart disease,
not surprisingly for an illness defined by exertion intolerance.
But the biggest cause of death is suicide,
because our hearts break long before the blood stops flowing properly.
The handful of books on ME/CFS tend to be written by the few who have got better,
finding answers in the body to questions that lie far outside it.
I know about these individual tales of pacing, diets and discipline
from Amazon reviews, but don’t read them.
I am in search of collective stories and social understanding,
words to make people angry.
People with Long Covid are our new bedfellows,
allies who are beginning to understand.
These new connections are welcome but also fragile.
New voices make us louder
but we musn’t forget to listen,
as some people having already been shouting for 30 years.
Firstly, the phrase ‘unrecovery’ is from Alice Hattrick’s book, Ill Feelings, which blends personal, historical, literary, and critical perspectives on ME/CFS.
Secondly, ME/CFS was first recognised as an organic ie physical illness by the UK Government in 1987. Though research shows a biomedical basis for the disorder across multiple body systems, the mechanisms underlying the illness are still poorly understood. There is still no bio-marker for diagnosis and no therapies or medications are currently approved to treat the cause of the illness. From 2007 to 2021, patients were recommended Cognitive Behavioural Therapy and Graded Exercise Therapy, even though patient evidence and experienced consistently showed these to be either ineffective or harmful in the majority of cases. NICE Guidelines, were revised in 2021 and no longer recommend either CBT or GET. There has been systematic under-investment in research for ME/CFS compared to other illness.
Finally, the Unite Union has a community membership for people who are not in paid work, who are disabled or chronically ill, or who are carers.
Liz Orton (@lizzyorton) is artist working with images, performance and text to disrupt and re-imagine archival representations of landscape, technology and the body. Liz taught for eight years on BA Photography at University Arts London. She is an Associate Artist with Performing Medicine, and has recently published two books, Every Body is an Archive and Becoming Image: Medicine and the Algorithmic Gaze.