Earlier this year, I started feeling off. Tired. Fuzzy-brained. Just not right.
This wasn’t me. I’m usually the person juggling work, kids, family, friends, and whatever my latest obsession is.
A few tired days in February turned into a day off work here and there, some naps, and sleep-ins. That had helped before. Not this time. I couldn’t get enough sleep. I’d sleep until midday and still be tired. My brain kept getting fuzzier. I couldn’t find the right words. My body felt heavy and sluggish. My head was always throbbing. Everything seemed too loud and way too bright.
After trying to keep going for a few weeks, it became too much to push through. I took a week off work… then another… then a month.
I was scared. I still am.
I started the first of many doctor’s appointments: blood tests, a stress ECG, specialist appointments, an MRI, a sleep study, and then more blood tests.
Apart from low iron, everything was “normal.” I was a “healthy” person… who needed a four-hour nap to recover from dropping her kids at school.
I had an iron infusion and hoped for a magic turnaround. No luck. In between naps, I freaked out full-time. What was going on?
Slowly, doctors started mentioning something I didn’t want to hear… Chronic Fatigue Syndrome. I thought I knew what that meant… someone who slept a lot, right?
It turns out, Chronic Fatigue Syndrome isn’t just being tired. It’s your body treating the simplest things in life—the school run, a work meeting, making dinner—like you’ve run a marathon, sat a four-hour exam, and been hit by a truck. And then punishing you for it afterwards.
There is no cure. There is no test to diagnose it. Just symptoms. Guesswork. And waiting.
Here is a short list of maddening things about Chronic Fatigue:
- It makes you doubt your own thoughts and question your own body.
- It makes you say “sorry baby, Mummy is too tired to play” when you desperately want to
- It makes people tell you to try “going for a walk” a lot. A lot.
- It makes you learn the phrase “word retrieval”—something we all do, all the time. You just don’t notice until it stops working.
- It makes you lonely. And sad. And frustrated.
The hardest part is that from the outside, you can still look mostly normal. People see you answering emails, picking up your kids, and assume you’re okay.
They don’t see the crash afterwards. They don’t see what it costs.
So I am now a new Chronic Fatigue expert. After all, nothing motivates quite like the pure panic that “this might not get better.”
I’ve learned that 75% of people with CFS are women, and that 20–30% of us also have ADHD, far higher than the general population.
I’ve learned that pacing is essential for managing chronic fatigue, which honestly feels like a bit of a cosmic joke. The all-or-nothing, go-go-go wiring I’ve built my life on? Turns out I need to unlearn that.
May 12 is International Awareness Day for Chronic Fatigue Syndrome. I’m sharing my story because even though there isn’t a cure, there is hope. There are organisations that help, people who understand, and things I can do.
The Neurological Council of WA has been one of those organisations. Their NeuroCare nurses are skilled, kind and free, and that has made a huge difference. Their compassion and advice were comforting and helped me navigate the health system, which was so overwhelming.
During the last few months, I’ve started listening to audiobooks. I love reading, but even that has been hard some days. While listening to a book by the wonderfully pensive John Green, he shared advice a mentor once gave him:
“Don’t just do something, stand there.”
That line has stayed with me.
When someone is unwell or struggling, our instinct is often to fix it. To offer solutions. To suggest a walk, a vitamin, a better routine.
But trust me, the most powerful thing you can do is just show up. Just listen.
Don’t just do something. Stand there.
And maybe don’t tell them to try going for a walk.
About Melissa
Melissa Cashman is a marketing professional, board director, and mum based in Western Australia, working in the not-for-profit sector.