What Australia doesn't get about how hard it is to be a full time, unpaid carer.

Cassie Day had just taken on a leadership role within her human resources team when she fell pregnant with her first child.

The plan was for the then 23-year-old to take six months off work before returning to the state government department she worked in, when her husband would take over primary parenting duties.

But when their son Matthew was four weeks old, Cassie learned something that would change her career, her relationship and her life forever.

Matthew was diagnosed with cystic fibrosis in 2002 – the first of many complications the family would face – and immediately Cassie’s world began to alter as she became a full time carer to her son.

“Everything changed from there,” the 37-year-old told Mamamia. “We didn’t even know what cystic fibrosis was.”

Matthew required different medications and a form of physiotherapy known as chest percussions, which involves lightly hitting your child's chest for 20 minutes at a time, several times a day.

"Emotionally that was gruelling. I think I cried a lot. That first year was incredibly tough," she said.

While the South Australian mum was able to go back to work, it was just 10 hours a week and not in the same leadership role she had left.

"My career stopped in its tracks. I was just not reliable and able to lead a team, because of my caring responsibilities," the now mum-of-two explained.

"My organisation was fantastic, but the absolute guilt that riddles through you for letting people down is crippling, you feel like a failure.

"If you look at the time, certainly the support wasn't in place for carers like myself."

Listen: Mia Freedman speaks to Vanessa Cranfield, who's daughter with Down Sydnrome is in her early 20s and still lives at home. (Post continues...)

As if one life-long illness wasn't enough for the family to deal with, Matthew was presenting with language, speech, auditory processing disorders and behavioural challenges.

Her marriage also began to crumble as her husband struggled to cope with his son's various medical issues.

"There's not support available to coach parents through that process," she said, adding it was common for parents in their situation to experience problems. "All the communication breaks down really quickly. You tend to take out your frustrations on each other first.

"Their dad really struggled, he was hurt and he couldn't voice that... unfortunately, he couldn't cope with Matthew's diagnosis and he chose to walk away."

Becoming a single mum for that period of time, Cassie had been reaching the edge of her limit for months, but it all came to a head when she was hospitalised in November 2010.

"I was not in a good place mentally, Matthew at that time had been in hospital a lot. I had put on a lot of weight, I hadn't eaten enough of the right things... I probably drank too much of an evening," she said.

The mum had gone into hospital for a preventative hysterectomy, but her recovery was stalled thanks to the poor mental and physical shape she was in.

Realising that if she didn't start taking care of herself, there might be no one left to care for her boys, Cassie made a vow to start treating herself better.

"What I found is that I got happier and healthier, so did my children," she said. "I can't take away Matthew's illness or diagnosis, but both of my children were so much happier because I was as well, because I was taking care of myself."

It was then Cassie began a second career as a personal trainer. While she suffered a setback when Matthew fell from a tree and acquired a brain injury in August 2011, that period of making self care a priority put her in the best position to overcome this new challenge.

"He fell five metres out of a tree and sustained a fracture... He was in hospital for three weeks for that, but it was a good six months of intensive rehabilitation and another couple of years after that of ongoing rehab," she explained.

"I was healthy then and I had an appreciation for looking after myself and I think if I hadn't have had that, I may very well have snapped."

Now, Cassie is putting her energy toward helping other carers to navigate a system that can be completely overwhelming to those who have to deal with it for the first time.

"I got to a point where I needed something else. I couldn't be at home all of the time caring. I needed something else to fulfil me and I thought well, 'I love helping people, I'm passionate about health and wellness... who better to help support carers than me, someone who has lived experience?'"

And that's when she developed The Carers Place, which supports carers and their families by providing online training and connections to services as well as offering a forum for carers to connect, cry, laugh, share and trouble shoot.

However, Cassie says more needs to be done to link carers with the services available to them - and that's why she's supporting Embracing Carers - global collective led by Merck in collaboration with Carers Australia, which aims to raise awareness of the crucial role of carers.

Cassie attended the seventh annual International Carers Conference in Adelaide last month, where she learned the most recent findings of Embracing Carers' 2017 survey.

The survey found many carers were falling short of the self care Cassie has found to be so important, with 58 per cent of the 3516 carers surveyed reporting sleep difficulties and three out of five feeling they didn't have time to exercise.

Cassie added that caring can be quite isolating and urged carers to reach out to family and friends - as well as professionals - and ask for help.

"As far as relationships with family and friends... people don't get it. We put a brave face on and we can kind of snap. We expect people to understand, but how can they if we don't tell them?

"Carers need to know takes incredible strength to accept help, with accepting or seeking out help it means everyone is going to be better off for it.

"It's the best gift you can give those you love is looking after yourself first. It's extremely important that carers have and can have their own lives."