Invisible illness or ‘all in the mind’? What are millions of Australians with unseen conditions experiencing and how can our healthcare system better diagnose, support and treat them? In Insight episode Invisible Illnesses, we explore the daily realities and impacts of those living with invisible, chronic illnesses. Watch Tuesday 20th May at 8:30pm AEST or live on SBS On Demand.
As a society, we are obsessed with the negative toll of COVID-19 lockdowns on children. But for our child, the experience of isolation wasn’t new.
Eight years earlier, in 2012, as everyone else carried on as normal, our daughter was pulled from school to isolate at home.
No friends, no sport, no social time. Just her — lonely, isolated and bedbound — with only a sick mum, a carer dad, and a sibling for company. Month after month.
In Year 8, when she should have been having fun with her friends, enjoying a little more independence and discovering who she was, she was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
Her diagnosis was a dagger to the heart.
Sadly, we knew this condition well and how bad it could get. My wife Jenny has had ME/CFS for over three decades.
Jenny has been mostly housebound and bedbound since the late 2000s. Source: Supplied
‘We felt cursed’
Jenny and I were drawn together by a love of adventure. She cherished overland journeys from London to Kathmandu, hiking Tasmania’s wilderness, and being the last to leave the party.
But in 1993, one year into our marriage, everything changed. Jenny caught the flu and never recovered.
Within a year, she was diagnosed with ME/CFS. Initially, her symptoms were mild. We continued to travel and started a family, but poor medical advice accelerated the progression of her illness.
In the late 2000s, Jenny became severely affected, and it led to her being mostly housebound and bedbound.
Like many others with the condition, she’s also gone into lockdown — a life disappeared from the rest of the world.
Then, when our daughter also developed ME/CFS, we felt cursed.
Before Jenny got sick, the couple loved travel and adventure. Source: Supplied
What Is ME/CFS?
The good news with ME/CFS is it probably won’t kill you. The bad news is, well, it probably won’t kill you.
It’s a grim joke, and for those of us who live with ME/CFS, whether as patients or carers, it’s far from funny.
Symptoms range from debilitating headaches and brain fog to nausea, hypersensitivity to noise, light, and smell, and flu-like symptoms.
Its hallmark is Post-Exertional Malaise — any exertion, physical or cognitive, can trigger a crash that lasts for days, weeks or even becomes permanent.
For Jenny, that might be watching a movie or, heaven forbid, going to the shopping centre for the first time in six months.
Worse still, there are no proven treatments.
The recommended treatment, Graded Exercise Therapy — which gradually increases physical activity levels — made Jenny worse and she remains severely impacted by her condition.
We decided to avoid that treatment for our daughter and she has improved somewhat.
ME/CFS is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. Source: Getty / Family video
‘Dismissing decades of suffering’
As I’ve mentioned, we were already familiar with lockdown well before COVID-19 hit.
Many respected health professionals announced they had “never seen anything like it before”.
A life of loss
The hardest part of being an ME/CFS carer is witnessing relentless suffering.
The quality of life for those with severe ME/CFS is often compared to that of late-stage cancer. But with this syndrome, the suffering is unending.
I effectively have a front row seat to a misery show that just goes on and on.
Equally challenging is communicating with some health professionals, who dismiss or downplay the illness, leaving carers and patients feeling invalidated and hopeless.
This deepens the isolation of managing this illness alone, amplifying the emotional toll on carers who must constantly advocate against disbelief while supporting their loved ones.
As a carer for two people with ME/CFS, Peter McCluskey says his life is also one of loss. Source: Supplied
I’m an emotional anchor for Jenny, who faces daily grief for the life she once had.
My life, too, is one of loss — of friends, opportunities, money, the life I knew, and the energetic wife and daughter I once had.
I’ve said no to so many invitations that they’ve stopped coming. I have limited social interaction, and I’m still the weirdo wearing a mask in the supermarket to avoid bringing COVID-19 home.
I took lower-responsibility, lower-paid roles to work from home mostly. But when I was working, I felt I should be caring. When caring, I felt I should be working.
We’ve lived for decades on a reduced income with mounting medical expenses.
And every day, I watch someone I love suffer.
A graphic showing the number of Australians who live with an invisible disability or illness. Source: SBS
Fighting for change
For those with invisible illnesses, advocacy is a never-ending task.
It means educating family, friends, politicians, employers and health professionals, while battling the entrenched stigma surrounding ME/CFS.
I don’t believe many people with cancer, multiple sclerosis or motor neurone disease must convince their doctor that their illness is real. It’s probably not commonplace for them to endure dismissive remarks like “it’s all in your head” or “just take some antidepressants”.
Some ME/CFS patients don’t even have the belief and support of family members, who simply urge them to “get on with things”.
ME/CFS patients, many of them housebound or bedbound, face unique challenges in pushing for change. For them, the marches, protests and public visibility of activists in other movements like HIV/AIDS is unthinkable.
Without the ability — or energy — to mobilise en masse, their suffering largely remains hidden away.
Nevertheless, from our bunker, Jenny and I have found purpose in advocacy, including working with Emerge Australia — a telehealth patient support service for those with ME/CFS and Long COVID.
Last year, hearing federal MP Dr Michelle Ananda-Rajah share our story in parliament — and pledge funding for updated clinical guidelines around ME/CFS — was a powerful moment.
ME/CFS sufferers and carers have endured too much for too long. But change feels closer than ever.
For Jenny and me, so much of our shared life has been stolen. But in the face of perpetual grief, we’ve found a shared strength that endures.
Emerge Australia offers a free, national telehealth service for people living with ME/CFS and Long COVID. Visit emerge.org.au or call 1800 865 321.
