Earlier this year, I became seriously ill and ended up in hospital with widespread pain throughout my body. At the time, I was in so much discomfort that I couldn’t talk, could hardly move, and I could not even let anyone touch me.
It all started with my arms. My hand therapist called it ‘overuse’. But as my health declined, I asked if there might be something else going on. The response from the hand therapist was, ‘like what?’. Looking back, I can see that he should have ‘heard’ what I was saying and recommended I see a specialist to determine why I was getting worse. But he didn’t, and so my story continues.
Around the same time, I visited my then GP to discuss my hands, and also my declining health, which included increased fatigue and immobility. At the time, I had a Mirena intrauterine device (IUD) – a long-term form of contraception – that put me at a higher risk of infection. I asked the GP if she thought I should see a specialist, as some of my pathology results indicated a possible infection, but she told me it wasn’t necessary and that I’d be fine.
My instincts told me something was wrong, and I could not escape the thought that all my symptoms were linked to the IUD. It wasn’t the first time the Mirena had concerned me. Before I had it inserted to treat my stomach problems, I had been reassured by my gynaecologist that it was ‘very safe’. This was repeated to me again when I presented to her with complications, post insertion.
The World Health Organisation (WHO) reports that 80,000 Australian patients are hospitalised each year due to medication errors
Although it eliminated my period pain, the Mirena was affecting my hormones and anxiety levels. I sought medical advice, but every doctor I discussed this with encouraged me to keep it in. “Why break something that isn’t broken?” was one response from a GP. “It is actually really good for your body to have a break from ovulating”, was another. But every fibre in my body was telling me to have it removed.
Soon enough, I ended up in the emergency room. The doctors diagnosed me with fibromyalgia, a widespread pain in the body usually accompanied by fatigue and distress, and moved me to a pain management hospital so I could be under the care of the diagnosing doctor. The emergency staff did not check my uterus. It was only when I started bleeding at the pain management hospital that the gynaecologist discovered I had a terrible infection. Even after this, the rheumatologist did not change his diagnosis of fibromyalgia.
The gynaecologist removed the Mirenaand gave me antibiotics to clear the infection He also encouraged me to go on the pill, and so I did.
But it felt like the entire ordeal of being in hospital was becoming detrimental to my recovery. So for the first time, I followed my own instincts and checked myself out of hospital. I refused to accept the diagnosis of fibromyalgia and left the hospital without fibromyalgia medication.
When I changed GPs after leaving hospital, my body was screaming for my hormones to regulate. Although I initially started the pill, my new GP said it was a good idea to stop using contraception and give my body a break. So I listened to the GP and stopped, because I felt this new GP was listening to me. We were on the same page; I felt respected and heard.
I rested and worked on improving my muscle strength with a physiotherapist. Months later, I travelled to Cyprus. Two weeks of sun and sea and I was almost at full health, and I have been ever since.
My story of misdiagnosis is not an uncommon scenario. The World Health Organisation (WHO) reports that 80,000 Australian patients are hospitalised each year due to medication errors, often as a result of medical misdiagnosis.
But, just because a patient suffers a bad outcome from a medical diagnosis and subsequent treatment, it doesn’t necessarily deem the medical errors as ‘negligent’.
It was only when I started bleeding at the pain management hospital that the gynaecologist discovered I had a terrible infection.
In my case, I feel the oversights were made because the doctors I saw focused too much on the science checklists to match my symptoms, and not enough on what I was actually saying. But at the end of the day, sometimes all we have is our instincts to go by. A 2011 study published in the journal Psychological Science revealed how the body is able to speak intuitively to the mind by monitoring heart rates during a card game.
And so, our gut instincts should count for something.
Koraly Dimitriadis is a freelance opinion writer, poet, filmmaker and the author of Love and F**k Poems. Her debut theatre show KORALY : “I say the wrong things all the time” will premiere at La Mama in Nov-Dec 2016. www.koralydimitriadis.com