Living with ‘invisible’ illness of chronic fatigue syndrome | Video

HANNAH Williamson is always exhausted.

But no amount of sleep can remedy it.

The 21-year-old has a poorly understood condition that has kept her mostly confined to her bed for the past three years: chronic fatigue syndrome.

She describes it as being tired at a cellular level, a feeling of having concrete in her veins.

Hannah was first diagnosed with CFS and fibromyalgia – a condition that causes widespread pain - at the age of nine, when the everyday activities of childhood left her whole body aching.

While the exact cause of CFS is not known, she believes tonsillitis, which her body never fully recovered from, and a tick bite were contributing factors.

Hannah was able to live with the conditions, but at the end of her first year of university in Albury, she “crashed”.

Since then, her life plans have been put on hold and she has been living back with her parents.

Despite having about 12 hours sleep each night, the overwhelming exhaustion leaves her in bed for most of the day, although she makes it a priority to try get up and have some meals with her parents.

“It’s shocking, really,” Hannah said.

“There’s a grief as well, because I’ve lost a lot of my life, what I wanted to do.”

As well as the physical symptoms, Hannah also has to deal with the isolation her condition brings, and a lot of misconceptions that come with having an illness that is not immediately obvious to others.

Sometimes she is advised to simply have a nap, while others have suggested she is on an extended holiday.

Finding medical treatment has also been a process of trial and error, with one doctor suggesting her problem was psychological, rather than physical.

But despite her challenges, Hannah maintains a positive outlook on life: she is thankful that she is alive and is not facing something worse, and describes her family and friends as “amazing”.

She is also optimistic that she will, one day, get better, having seen some improvements in her condition since she fell ill.

“I’m chronically ill, but it’s my life and I have to make the most of it,” she said.

“She laughs, but I say she chooses to walk on the sunny side of the street,” her mum Karin said.

Hannah and Karin are trying to raise awareness of conditions like CFS, with Friday May 12 marking the international day of awareness for chronic immunological and neurological diseases.

The nature strip at the front of their Junortoun home has been decorated with scores of pairs of shoes, representing people ‘missing’ because of their inability to participate fully in life.

Some carry notes from others, offering well wishes or sharing similar stories of CFS and other chronic conditions.

Hannah wants people to simply be kind to others, and have a bit of empathy for those with chronic conditions who might not outwardly appear ill.

Members of the public have been invited to participate by leaving a pair of shoes at 26 Homebush Drive on Friday, with all shoes to be donated to charity.