“It’s all in your head”: When your body is screaming and no one is listening

With Lyme disease making headlines in Australia, and more people bravely sharing their stories, it felt like the right time to share part of mine.

I’ve been writing *Back from the Brink* behind the scenes for a while now. It’s the book I wish I’d had existed when everything in my body started to collapse. When pain, fatigue and nervous system chaos left me barely functioning, and yet I was told I was "fine."

This book is part personal story, part healing roadmap.

It’s for anyone who’s ever been misdiagnosed, dismissed, or told their suffering isn’t real, and for those still searching for hope in a system that too often looks the other way.

What people don’t see with chronic illness is the heartbreak behind the scenes: the disbelief, the gaslighting, the medical dead-ends.

This excerpt (and a more expanded recorded reading) is from an early chapter. It is a glimpse into what it’s like to live in a country where your illness isn’t recognised, and getting help feels like pushing against a locked door.

For anyone who’s ever been told they’re “fine” when they know they’re not, this one’s for you 💚.

And, a chapter excerpt…

“Gaslit by the medical system: “It’s all in your head.” 

After countless hospital visits, dead-end tests, and hollow reassurances, the narrative shifted. Doctors began suggesting that maybe it was all in my head. Maybe it was just anxiety. Maybe it was depression. Maybe I simply needed to "relax" or "push through."

Hearing those words was like a punch to the gut. I wasn’t imagining the burning pain that stole my sleep, the dizziness that left me clinging to walls, the overwhelming fatigue that crushed my spirit. But in the medical world, if your blood work looked "normal," your suffering became invisible.

I wasn’t thrown into a cycle, I was trapped inside a relentless loop of confusion, gaslighting, and endless guessing games. Some doctors didn’t listen at all and made me feel crazy. Some insisted I had Chronic Fatigue Syndrome (CFS) or Fibromyalgia. Others suggested burnout or depression. I had to laugh at that, I was WAY beyond that stage.

A couple of doctors quietly mentioned Lyme disease but seemed reluctant to investigate further. I didn’t realise at the time that Lyme disease wasn’t officially recognised by the Australian government, and doctors who pursued it risked professional scrutiny. It was like Lyme had been blacklisted from medical care.

Something was very, very wrong.

I spent a fortune on specialists and tests - every blood, urine, and imaging test imaginable. Thyroid, iron panels, white blood counts, tests for Crohn’s disease, parasite screenings, lung ultrasounds, heart scans - you name it. Most came back "normal." Still searching for answers, I ventured into genetic testing, chasing methylation issues linked to the MTHFR C677T gene mutation. Another small clue, but no real relief.  Another anomaly - a high iron saturation level - revealed a single copy of the H63D gene linked to hemochromatosis. Yet even that was brushed off as "insignificant."

Every minor diagnosis seemed to lead me one step forward and two steps back.

After changing doctors yet again, I received a diagnosis of Fibromyalgia and was referred to a pain clinic. For three months, I dutifully attended physiotherapy, heat therapy, occupational therapy. It helped a little, while I was there. But the symptoms continued to escalate.

The shouts from my body grew louder. "Stop. You’re going the wrong way."

I felt confused. Desperate. Crazy. How could no one help me? How could an entire system fail someone so obviously sick?

Finally, I met a hospital doctor willing to order a Lyme test. He dismissed it outright but said, "You’ve tried everything else, we might as well."

It was a low-sensitivity Australian test, destined to fail from the start. The result: negative.

Another dead end.

Each dismissal didn't just delay my healing, it stole pieces of my hope, one appointment at a time.”

💚 Would you like to read more from the book as I finish writing it?

Let me know in the comments, or sign up for updates and early access:

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From Pocket Rocket to Patient Advocate