Mainly Affects Women

KM

creative partner Lana Citron

editor and reader Julia Pascal

It is 2002
The year of Sars.
I am in Spain
recovering from whiplash.
Sudden onset Flu
Shivering, shaky, muscles aching.
After ten days
it disappears
I think.
Just a weird, foreign infection.
But afterwards…
racing heart, feeling faint on standing,
breathless walking –
Bruises on legs.
Hospital,
A heart problem?
Monitor says yes,
But doctors decide I’m too young.
Blood tests
High white blood cells,
Low red, low haemaglobin.
No diagnosis.
In the UK
a neurologist says
I must be struggling adapting to adulthood.
At twenty-eight years old!
‘Maybe you’ve taken drugs?’
Yes. Coffee and coca cola.
‘It’s only panic attacks.’
Dismissed.

Next summer,
A lump on my neck.
Racing heart, rapid weight loss
Large brown patch on my forehead.
Sudden onset Obsessive Compulsive Disorder
OCD.
Everything is filthy.
I must clean, clean, clean –
Look at that dirty door handle
Oh my keys!
And then comes Covid.
And whole world gets OCD.

On the bus
Where will I find a clean seat?
Someone’s drink splashes me.
I freeze. Abort journey, go home, shower.
Green! The colour terrifies me.
19 hours a day I search for
non-green, non-synthetic tights
online.

Cognitive behavioural therapy (CBT) doesn’t help.
Made washing divert into checking.
Checking words.
Check
Check
Check.

Before
I was an international PA,
A qualified journalist
An award-winning story writer.
Now, all gone.
My work is
Check
Check
Check
Over and over and over. 
No more fresh thoughts
All gone to the thief of three letters
OCD.

What is wrong with me?
Nobody in a white coat
is interested.
Check
Check
Check.

Then I get meningitis
and can’t stand or walk without fatigue.
The checking goes through the roof
as my memory and focus fail.

Am told I have
Chronic Fatigue Syndrome
Also known as
Myalgic encephalomyelitis
M.E.

Told it’s depression,
and fear of exercise.
That I should walk to get better.
So I walked. But it only made it worse.
Much worse.

Then…
Maybe you have POTS?
What’s POTS?
A heart rate rise of 30 beats within ten minutes of standing.
Mainly affects women.
Has various causes.
Some doctors don’t know about it.
Did I read that correctly on the NHS website?
Some doctors don’t know about it.
Why not?
Mainly affects women.

Fifteen years lost.
The successful PA,
journalist
Prized short story writer
housebound, jobless, crippled
because so many GPs and specialists
dismissed me.

Diagnoses finally arrived,
Some new.
Check
Check
Check
Others sitting in hospital medical records
Tests that nobody
had sent my GP or reported.
Why?
So it wasn’t all in my head.
Endocrine diagnoses.
Conditions known to cause anxiety and OCD.
Fifteen years too late.
A heart scan showed
Three faulty valves.

Misdiagnosis
Missed life.

Long Covid is déjà vu.
Its sufferers are reporting the same symptoms
I had all those years ago.
Tachycardia, orthostatic intolerance, exercise intolerance, anxiety.
Many are dismissed as anxious.
Just as I was.
Because long Covid, like most post viral conditions,
affects mainly women.

Historically, women’s health problems have been dismissed,
the female often branded a hysteric
Check
Check
Check
I read and check again that the term ME –
the name given the mystery illness
at a London hospital in 1955,
was branded female hysteria
by two male psychiatrists
who never met a single patient.
Why?
because of the high attack rate in females
compared with males.’

Hysteria was first described
By the Egyptians
In 1900 BC.
They believed it came from the uterus.

As for me
I now have some hope.
Doctors and scientists are no longer laughing at women
Covid has made them look deeper and
Check
Check
Check.

KM

Giving Voice

Find out more about Giving Voice