This is a short written piece about the first memories I have re my current condition.
Seven Years Old
The First Time I Wasn't Believed
I was seven years old when I first learned that being sick and being believed were two very different things.
It began ordinarily enough.
Mum had taken me to the doctor for my vaccinations. I was perfectly well when we went in, and there was no immediate adverse reaction afterward.
Like mothers did, Mum watched the injection site diligently for redness or swelling. She even made up her own little remedy of crushed Panadol and honey to ease any inflammation or pain.
Within three days, her daughter was completely normal.
No soreness.
No swelling.
Nothing to worry about.
She had done her duty as a parent, and her daughter was well.
Another ten days or so passed.
Then I developed a tickle in my throat.
It became a cough.
And every cough seemed to travel further down, deeper and lower into my chest.
Then came the fever.
The cough sounded terrible.
Within twenty-four hours, Mum had me back at the doctor.
“Oh, it’s just a cold,” he said.
So Mum took me home.
Three days later, I could barely move.
Mum had spent the night cleaning up vomit and emptying buckets because moving hurt me too much.
Every time I coughed, my colour changed.
The house seemed to shake at its foundations.
You could hear my throat being ripped apart by it. My head felt as though the pressure of each cough might make my brain burst.
Every cough.
Every time.
Worse.
Mum took me back to the doctor.
Again, she was fobbed off.
Go home.
She’ll be fine.
It was the same doctor who had given me the vaccination.
The same doctor who treated so many of the low-income families living in our area.
Mum walked out of his office frustrated, frightened and feeling completely unheard.
Then, as she stood at the counter paying the bill, she heard something.
A familiar sound.
Whoop.
She turned around.
There were two other children waiting.
About my age.
Coughing.
And there it was again.
Whoop.
Same doctor.
Same age.
Same cough.
Mum took me home.
She spoke with Dad for a while, then she left.
I don't know exactly where she went or everything she did.
I only remember her coming back.
I can still hear that nylon coat.
Rustle. Rustle. Rustle.
There was something different in the way she moved. Brisk. Alert. Determined.
She grabbed Dad and they went into the kitchen, speaking in low voices.
I couldn't hear everything.
But I heard Dad's name.
Then Mum's voice, firing off what sounded like bullet points.
One sentence made it through clearly.
“I went there and sat outside. Five of them.”
Then:
“I'm going to the school.”
And off she went again.
About twenty minutes later, the nylon coat came through the door once more.
She had been checking.
The children she'd seen were absent.
They attended my school or the school behind it.
Both schools had children absent because of illness in my age group.
Mum had connected the dots.
The next day, she took me back to the doctor.
This time, she wasn't there simply to ask what was wrong with her daughter.
She wanted answers.
Why had he failed to recognise whooping cough?
Why had I been sent home so ill?
Why were there so many children registered at the same practice with the same distinctive cough?
Why were two local schools affected?
Mum was angry.
She took me home and cared for me herself.
Eventually, I began to recover.
But being “better” didn't quite mean going back to the child I'd been before.
I began getting migraines.
Not once.
Not twice.
Every few weeks.
They interfered with school and with my ability to maintain the A grades I was accustomed to.
There was vomiting.
And I was tired.
So tired.
Seven years old and tired.
Mum kept looking for answers.
Eventually she took me to some kind of specialist.
She told him about the whooping cough.
The headaches.
The vomiting.
The exhaustion.
She told him what she had watched happen to her daughter.
Tests were done.
The tests didn't provide an explanation.
And his answer, as I remember it, was devastatingly simple:
“The tests say she's fine.”
Then:
“She's lying to you.”
I was seven.
I didn't have the language then to explain why that moment mattered.
I do now.
A negative test result did not make my symptoms disappear.
It did not stop the migraines.
It did not give me my energy back.
And it certainly did not establish that a seven-year-old child was lying.
But somewhere along the way, the absence of an explanation had become an explanation in itself.
The tests were fine, therefore I was fine.
And when my body contradicted the tests, apparently the problem was me.
That was my first experience of something I would encounter again in medicine:
dismissal.
Not necessarily because someone intended to cause harm.
Sometimes the damage is much quieter than that.
It happens when “we haven't found the cause” becomes “there is no problem.”
When uncertainty becomes certainty.
When the test result is given more weight than the human being sitting in the room.
And when the patient cannot reconcile those two things, the patient's credibility becomes the thing under examination.
I was seven years old the first time it happened to me.
It wouldn't be the last.
I went on to live a fairly ordinary life despite all of this.
Years later came another diagnosis:
epilepsy.
That diagnosis would follow me for decades.
Forty years of my life would pass beneath its shadow before that story, too, began to unravel.
And eventually there would be another diagnosis.
One that finally gave a name to symptoms that tests could fail to explain while the symptoms themselves remained very real.
Functional Neurological Disorder.
It took 46 years to get there.
I'm 58 now.
More than half a century has passed since that sick little seven-year-old lay beside a bucket while her mother refused to accept that there was nothing wrong with her.
I remember the coughing.
I remember the pain.
I remember being exhausted.
I remember the doctor.
But perhaps most vividly, I remember Mum.
That bloody nylon coat.
Rustling in and out of the house as she investigated for herself.
Sitting outside a doctor's surgery counting sick children.
Checking the schools.
Connecting dots.
Going back and demanding answers.
She didn't have Google.
She didn't have online patient portals.
She didn't have medical journals sitting in her pocket.
She had her eyes, her ears, her instincts and a very sick seven-year-old daughter.
And when someone told her that daughter was lying?
She didn't stop believing me.
Fifty-one years later, I think that's the part of the story that matters most.
The first person who taught me what medical dismissal felt like was a doctor.
The first person who taught me that I was still worth believing was Mum.
