Georgia McCluskey spent her 18th birthday in hospital alone.

While other teens would have partied the night away, McCluskey sat slumped in a wheelchair in a waiting room at Sir Charles Gairdner Hospital. She was suffering from a severe episode of tachycardia that had been triggered by contracting COVID-19.

McCluskey says her smartwatch first alerted her to her dangerously high heart rate, clocking up to 193 beats per minute. She was taken to hospital by ambulance and immediately isolated.

“No one checked in on me. I was in this waiting room for hours, just by myself,” she says.

After being monitored, she was sent home in the early hours of the morning without receiving any treatment.

It was just so isolating and I felt so alone.”

Georgia McCluskey

McCluskey had been diagnosed with postural orthostatic tachycardia syndrome just a few years earlier, during her final year of high school in 2021. POTS, according to Dysautonomia International, is a dysfunction of the autonomic nervous system that causes lightheadedness and an elevated heart rate upon standing.

For sufferers like her, every facet of life is affected.

“It really is life-altering and it’s the little things that you don’t think about,” McCluskey says.

McCluskey recalls experiencing her first episode of tachycardia during an Anzac Day ceremony in primary school.  

“I just remember standing up, it was a hot day, and my vision just started going. I was so young, and I just passed out,” she says.

She put the episode down to heat exhaustion at first but continued to experience symptoms and was finally diagnosed with POTS years later after seeing a cardiologist.

Reflecting on her school years, McCluskey says that having an undiagnosed invisible illness was tough on her social life.

“I went through high school not knowing what was wrong with me and why I was feeling gross, just not having the energy to do anything,” she says.

“I was even nicknamed Cadbury Flake because I used to flake on plans all the time.”

For McCluskey, her invisible illness causes her to feel like she is missing out on parts of youth. She struggles to socialise in environments that could trigger an episode like concerts or nightclubs, and often worries about letting friends down.

“I feel like I am the buzzkill in the friend group,” she says.

After years of having her symptoms brushed off by her peers, she still finds herself downplaying the severity of her condition.

“I don’t want to seem like I’m too much of a problem. I don’t want anyone to know that I have this little special need that I need to sit down, or I need some extra water,” she says.

Her advice for others living with a chronic illness is to not be afraid to speak openly about their condition.

“Just own it,” she says.

Finding a community

From her home in a quiet residential street in Warnbro, Michelle Greenwood runs a non-profit organisation that makes a big difference in the lives of people like McCluskey.

Inside, the walls are adorned with butterfly décor – a metaphor adopted by those with fibromyalgia to symbolise that even the lightest touch can cause pain. For Greenwood, the butterfly also represents hope.

Dressed in a yellow butterfly t-shirt, she radiates warmth even when recounting her darkest days. After being diagnosed with fibromyalgia 14 years ago, she founded Invisible Illnesses in 2016 after losing her support system and feeling suicidal.

“After my diagnosis of fibro, losing all my friends and whatnot, I just sunk into the biggest hole of depression,” Greenwood says.

The organisation supports people living with an invisible illness, which accounts for 90 per cent of the 4.4 million Australians with a disability according to the University of Sydney. The term includes any disability that can’t be seen, which Greenwood says often fuels skepticism.

“Because people can’t see it, they don’t believe it. Unless they themselves are going through something, then they have no idea of what it’s like,” she says.

Greenwood is one of the one million Australians living with fibromyalgia, a complex chronic illness that causes widespread pain according to Arthritis Australia. For her, even simple tasks are a challenge.

“There’s days when I can’t get out of bed. The fatigue is so bad you can’t do anything, or your pain levels are through the roof.”

Michelle Greenwood

Greenwood’s health took a toll on her relationships, leading to the breakdown of her marriage and loss of friends. She recalls feeling her friends gradually pull away as her health often prevented her from going out.

“It was quite heartbreaking because I lost some really good friends,” she says.

Since founding Invisible Illnesses, she has made new friendships based on mutual understanding and acceptance. Her advice for people living with a chronic illness and struggling to make friends is to get involved with a support group.

“You will find that you will make some really good friends … and people are there to pick you up when you’re down,” Greenwood says.

A digital solution

Nicholas Carlton’s life also turned upside down when he became sick a few years ago.

“Eventually I had to stop working and my long-term relationship ended. When I had to reemerge back in the world as a chronically ill person and hit the mainstream dating apps, I discovered that they’re not built for sick and disabled people,” Carlton says.

His experience inspired him to co-found Spoony, a social app dedicated to connecting chronically ill, neurodivergent, and disabled individuals.

“People can not only be upfront about, but also celebrate and feel comfortable sharing, who they are with other people that have a common experience,” he says.

The app’s name derives from the spoon theory, a metaphor used to describe the physical or mental energy levels of a person with a chronic illness.

People living with a chronic condition may wake up with a different number of spoons each day depending on how they feel, which influences the number of tasks that they can put this energy towards.

“If you have lots of spoons that day, you’re in a good place and you’re able to go to the shops or meet a friend for coffee. If it’s a low spoon day, you might be stuck in bed,” Carlton explains.

He says one of the biggest barriers to making friends with a chronic illness is social stigma.

A lot of fatigue comes about in having to constantly educate new people about their condition or their illness or disability.”

Nicholas Carlton

Carlton finds value in connecting with other members of the chronic illness community and hopes Spoony can be an outlet to foster these connections.  

“People who have something similar understand what I go through best and have the most patience with me,” he says.

His advice on how to support chronically ill friends is to be flexible with social catchups and accommodate their needs.

“Park your pre-conceived notions at the door and just listen to your friends and try to understand what it is that they’re going through,” Carlton says.