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.

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’

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?

Its hallmark is Post-Exertional Malaise — any exertion, physical or cognitive, can trigger a crash that lasts for days, weeks or even becomes permanent.

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’

A life of loss

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.

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

Without the ability — or energy — to mobilise en masse, their suffering largely remains hidden away.