CATH Lawrence was once a full-time statistical programmer, a choir singer and a yoga enthusiast, but a chronic fatigue diagnosis seven years ago means that now even taking a shower can leave her exhausted.
“It feels like you’re wading through concrete,” says Cath, 59.
“I have to spend most of my day laying down. I’ve had to cut my hair because it can be too exhausting to brush.
“On particularly bad days I can be really thirsty and I’m unable to physically lift a glass of water.”
For decades chronic fatigue was called the “yuppie flu”, with some believing it’s merely a case of feeling tired or burned out.
“There can be a misunderstanding that it’s being lazy, there’s a level of dismissal that sets things back a long way,” says Cath.
But this May 12 will see the annual Chronic Fatigue Awareness Day take place, an event that aims to bring understanding to how life altering the condition can really be.
“I was working and was active socially and musically, and you really define yourself by these things, you define yourself by what you do,” says Cath.
“When you lose that you can feel like nothing. It’s mentally hard to try to find value in yourself that isn’t about your jobs or activities.”
The condition is estimated to affect around one per cent of the Australian population, with onset often following a trigger.
For Cath, the trigger was a respiratory illness.
“The acute symptoms of the respiratory illness faded but that intense fatigue stayed,” she says.
“I was working as a public servant full time, then as my condition worsened it became part time, then part-part time and it got to a point I couldn’t do it anymore.
“I’ve now become dependent on my wonderful husband who helps me and my superannuation, but I miss being able to work. That loss of independence is a very sad thing.”
The wide misunderstanding of chronic fatigue inspired Robyn Harris, a woman who herself lives with the condition, to become a support officer to help those suffering.
After doing an online support course from America that was huge for helping in her own struggle with chronic fatigue, Robyn developed a program that she runs here in Canberra.
“There’s no silver bullet but there are strategies to help manage it,” says Robyn.
“The key symptom of chronic fatigue is called post exertional malaise and it happens whenever you do something outside what they call your energy envelope – what’s outside your capability because of the condition.
“An example could be walking up a set of stairs, and then having to lay in bed for days afterwards.
“The course is about learning how to pace yourself, you have to divide your energy into little pieces.”
Cath is just one of the patients who has taken Robyn’s course, and she says it’s been “brilliant” for her.
“To be able to meet other people with the same symptoms when so many people tell you it’s all in your head, there’s a real validation in that,” says Cath.
“Before doing the course, I’d crash a lot more regularly, but it’s helped teach me how to balance my energy use a lot more and stay within that energy envelope.”
For sufferers of chronic fatigue, resources like this are a small saving grace, especially when Robyn says not even the National Disability Insurance Scheme considers the condition a full-time disability.
It’s something she and Cath agree needs to change moving forward, so those who are dealing with chronic fatigue can start to see more conversation around treatment for their ordeal.
“Changing people’s perception is hard to do, but it’s worth doing,” says Robyn.
“We need to believe those who have the condition so that more expert support can start to come through, support which can make a major difference to quality of life.”