The 52-year-old Kambah part-time community nurse has had chronic fatigue syndrome and fibromyalgia since 1986. It took three years for her to be formally diagnosed.

"I had headaches, overwhelming tiredness which wasn't relieved by rest, non-restorative sleep and muscle pain. It was like I had a flu which wouldn't go away. It went on for a few months and then I started reading and started looking into it," she said.

"It was the end of the year so there were Christmas parties and I was burning the candle at both ends. So doing the stuff you do in your mid-20s but I just never got better after the busy Christmas social period."

Opening up about her health battle, Ms Robinson has highlighted the need for public awareness around conditions such as hers.

"The difficult thing about these conditions is that everybody's symptoms are different, their onset is different, their recovery is different. It's not one size fits all which is why I think diagnosis is so hard and why it is so unrecognised and misunderstood."

Ms Robinson said she needed to manage her conditions very carefully.

"If I'm getting to bed early, adhering to my good diet, drinking purified water, I don't drink or smoke, I meditate, I don't do too many things in one days, I function fairly well," she said.

"It's situational because if it's a really busy time, I have to be more vigilant and rest more."

Ms Robinson said it could be incredibly difficult – both mentally and physically – for sufferers because the illnesses could have such a huge impact on their lives.

Former Canberran Carol Baker also has fybromyalgia and chronic fatigue syndrome, and she too knows of the emotional and physical toll that comes with them.

No longer able to continue working as a teacher, Ms Baker says her life has been turned upside down by the debilitating conditions.

"I can't work anymore and I have cognitive impairment so I forget things," she said.

Ms Baker said she also has constant pain and unable to work, so she relies on a disability pension.

"My social life is almost non-existent. You find that the friends you once had who you were able to do things with start dropping off a bit and don't invite you along to things anymore," she said.

"So economically, job-wise, socially, it's impacted greatly on my life."