The power of telling my story
When we write down our stories there’s a rush of relief - and release for the teller. But for the reader - there is immediate empathy, connection … ‘me too’ moments, the beginning of trust.
Liberation of crammed down emotion - a steam valve bursting open – a great whoosh of air: all the bad stuff expelled … things are changing. The simple action of writing it all down, in order, in all its terrifying detail … all its colour and texture is cathartic. For what’s the point of being half-hearted now? Send it all ‘out there’ into the universe, off your chest.
Some people write so much it turns into a book.
I remember being sent for a CT scan. Nothing could explain my headaches: constant, constant dull always-there headaches. Every day. Every week. And sinus infections, doubling the pain in my head – every month: the paracetamol, the pseudoephedrine. I felt doctors stopped believing me. But around we’d go with the antibiotics … again. Followed by a second course again – because it hadn’t cleared up. Only for it to reappear a few weeks later.
But now a CT scan! Were they looking for tumours, brain abnormalities, blood clots or something more sinister? They didn’t say. But yes to all and any of those - according to Dr Google. In the days leading up to the appointment I was tetchy, bossy and, when alone teary. Because the thing that really scared me was that this was coming after all the blood tests, lung capacity tests ultrasounds, ECG and gastroscopy – which all found nothing.
So all the easy stuff has been ruled out – now we’re down to tin tacks. I was preoccupied, obsessing. What if they find something dreadful, incurable … inoperable? Who will look after my kids? How will they cope without me? My mind raced hopelessly for answers for three never ending days.
Then the CT scan went ahead. All normal.
After the rush of relief - a weird feeling. Like it was wasted effort, unnecessary stress – how stupid did I feel! Yet still no answers on the headaches.
A critical moment came later when I was giving my regular donation at the Blood Bank in Melbourne. But on this occasion a switched-on nurse noticed my iron levels and referred to my file. In fact they had been consistently low for months - but today I was actually anaemic – and she refused to let me donate. Humph! Couldn’t believe it - I flunked blood donation!
Then the nurse asked, 'Do you think you could have celiac disease?'
'What's celiac disease?', I asked.
A critical turning point. The very next day I went back to the university library and began scouring the medical journals for information - and found plenty. How could the doctors have missed this? Don’t they read the journals? Don’t they care about the cause?
Then with a 50c exercise book I put myself on a strict elimination diet as in the studies. And within 48 hours the headaches vanished. Stopped. Just like that.
Suspects: gluten, dairy. But ‘food challenges’ for each soon confirmed they were major culprits. As time went on I would also nail other niggly symptoms. Then I noticed welcome weight loss, 8 kg – eventually 17 kg.
This whole experience altered my opinion of medicine: why pop pills to combat an illness - when discovering the cause makes much more sense?
As the months passed I carried on my research – learning about other food toxins and their effects on my body. It was exhilarating, rewarding and life-affirming, and I told everyone.
My skin cleared up, my energy bounced back, no more bronchitis and I was sleeping better. So, I thought - perhaps others like me were having trouble being diagnosed using medical methods? Maybe my story would help them, who knows?
So in July 2003 I set up a website foodintol® (now the Food Intolerance Institute) to tell my story. Little did I know that it would change the course (and cause) of my life. A few weeks later I resigned from my corporate business development position to devote myself to food intolerance.
Please share your journey with food intolerance. No matter how many symptoms, sicknesses, diagnoses, wins, losses and flunk-outs you’ve had – we would love you to hear from you. Get started here.
