Shared Scars

Hi, I’m Michael and I’m a stroke survivor.

Recently, I returned to my hometown of Newcastle. As I get older, I find myself reconnecting with people I went to school with. Not always close friends back then, but people who’ve gradually moved into my orbit over the years.

At first, it was shared professional interests that brought us together. Now, more often than not, it’s health. Usually because they’ve experienced a major health event themselves - or someone close to them has.

Much More Than a Coffee

On this trip, I caught up with an old friend who lives with lupus - Systemic Lupus Erythematosus (SLE) - specifically lupus nephritis, where the disease attacks the kidneys.

I didn’t know much about the condition and wasn’t prepared for her story when we sat down for coffee in a café in Merewether.

It brought me to tears.

Living With the “Great Masquerader”

Lupus is notoriously difficult to diagnose. There’s no single definitive test, and it mimics many other illnesses. Symptoms come and go - fatigue, joint pain, rashes, fevers, memory loss - earning it the nickname the great masquerader.

For my friend, that meant years of incorrect diagnoses. Years of pain, exhaustion, and confusion. Eventually, she was hospitalised for further testing - but the wrong diagnosis nearly killed her.

“What Is Wrong With Me?”

As her fatigue and pain worsened, my friend made the decision to go to hospital so doctors could run more tests. She wasn’t improving, so she stayed an extra day - partly because her husband was taking one of their children to a sporting event over an hour away that weekend.

That decision saved her life.

While her husband was on the road, he called to check in. She didn’t sound like herself, so he asked her parents to go and see her. When they arrived, she wasn’t responding. They rushed her to ICU, where she coded - she suffered a heart attack. Doctors managed to revive her.

If she’d gone home on the Friday as originally planned, she would have had that heart attack alone, while everyone was away.

A Call No One Wants to Make

Her father stepped outside to make the call no one ever wants to make - telling her husband to get back to Newcastle immediately.

She was transferred from a smaller hospital to the John Hunter Hospital. On the way, she died again - and was revived again.

Thankfully, she was in a specialist transport vehicle with a doctor and nurse in the back, and another nurse driving.

The Long Road Back

We talked about rehab. About relearning function. About the relentless, invisible work that happens behind the scenes long after people think you’re “better.”

We laughed - because sometimes that’s all you can do - about comments like, “Good to see you’re better now,” when you’re living with conditions that could flare up again at any time, without warning.

We also shared something deeper: a genuine appreciation for life, and a determination to make the most of every day.

Being Understood

These experiences can be hard to explain to people who haven’t lived them.

So it was comforting, and necessary, to share this story with someone who truly understands. To shed a few tears. To get a hug. And to feel seen by an old friend who has walked a similarly hard road.

Sometimes, that shared understanding is everything.