Invisible illness or 'all in the mind'? What are millions of Australians with unseen conditions experiencing and how can our healthcare system better diagnose, support and treat them? In Insight episode Invisible Illness, we explore the daily realities and impacts of those living with invisible, chronic illnesses. Watch Invisible Illness on SBS On Demand.
From the age of 19, Chloe has endured chronic pain, chronic fatigue and brain fog. After a decade of doctors calling her 'overdramatic' and 'hysterical', she was diagnosed with fibromyalgia.
"[If] you've ever had a really severe flu when you feel achy, like you're just strapped down by rocks, that's kind of how I feel every day," the 33-year-old told Insight.
She says her experiences with doctors have been "difficult", with some questioning if she was imagining her symptoms.
"I feel like the medical system isn't quite set up to deal with people like me … people that have long-term conditions," she said.
"They make you feel like you're going crazy. And you start questioning whether you are being over-dramatic or whether it is all in [your] head. And I know that it isn't."
Her illness has also affected her finances.
"I've shown friends how much I spend on a monthly basis and it's always just shock, unbelievable shock. People my age are buying houses and going on holidays. And I don't have a savings account.
"I always said that my body is my savings account. Every cent that I have, it ends up going back into my health."
Chloe says she's lost multiple friendships and relationships due to the demands of trying to manage her health. Source: Supplied
"Sometimes people can get sick of dealing with you when you have a chronic illness," she said.
When this happens, she feels a mix of anger and resignation.
"It just shows how ingrained ableism is."
Yet, she says she doesn’t entirely blame them.
"I get sick of hearing myself talk about it. I get sick of being sick."
Hard to get sympathy or empathy
When Brett caught COVID-19 in 2022, he felt drained and his brain felt foggy.
He's never recovered.
But he finds it challenging to gain empathy for his Long COVID and he's lost many relationships since becoming unwell. Some of his friends do not believe Long COVID exists, while others blame the vaccine.
"There are a lot of people who have COVID fatigue. It was a very traumatic time," he told Insight.
"So it's very hard to try and get them to sympathise or empathise with what we're going through."
Brett has been living with Long COVID since 2022 and believes his symptoms are getting worse. Source: Supplied
"My doctors didn't know [about long COVID]. I didn't have a diagnosis. Who could say when I was able to go back to work? Eventually, I had to resign," Brett said.
Facing a mortgage without any income has left him in a difficult position. He now claims JobSeeker, which he says doesn't make sense because he's 'medically unemployed' and feels unable to work until he recovers.
"We can't push ourselves to get back to work. We're not seeking jobs," Brett said.
Two years on, he believes his symptoms are getting worse.
"I've spent two years pretty much living a very sedentary lifestyle, trying to focus on my health."
'We're doing nothing for them'
Invisible or 'hidden' disabilities are conditions or chronic illnesses that are not immediately visible to others. Dr Mark Donohoe, a GP who operates a practice focused on treating chronic illness, says the medical system in Australia isn't equipped to handle conditions that are invisible.
"A medical profession deals with acute illness very well. We've got a good healthcare system in disease care. But when medicine feels powerless, we're not inclined to say, 'I don't know'. We're more inclined to gaslight people to say, 'Maybe it's in your head'.
"And I've gotta be honest, it's sometimes a misogynistic profession ... we're not good with women and women's health problems; we tend to discount them."
Almost four million Australians have one or more invisible disabilities. Source: SBS
He says that after submitting forms and letters, applicants often receive responses asking for proof of their illness.
"How do you prove the thing that you have not yet studied, that you don't know how to prove? The natural outcome is people just go home and rely on family," he said.
"As a compassionate society, we're doing nothing for them."
He says there are ways the medical profession could do better.
'[We have to] acknowledge that we're not all-powerful. That there are illnesses that are disabling and catastrophic that we don't understand, and not gaslight people [and tell them] it's all in the mind if we don't understand it."
Coping with stigma
Carl has lived with migraines for most of his life, but in his 20s, following an injury playing touch football in which he sustained nerve damage, they became chronic.
"I was having up to six migraine attacks a week," he told Insight.
He was prescribed various medications typically used to treat other diseases.
"I was given antidepressants, I was given anti-seizure medications and sometimes the symptoms of the treatments were hard to distinguish between the symptoms of migraine itself."
Carl says his frequent migraine attacks caused him to quit his job. Source: Supplied
"A lot of people think that migraine is just a bad headache, when in truth it's a lot more than that and you don't actually need to have headache to have a diagnosis of migraine," he said.
After seven years of coping, he decided to leave his job.
"I quit work. I made up an excuse. They still, to this day, don't know the real reason why I left. And I moved back with my parents, and my single goal was just to get a grip on what was going on."
Years on, after taking the right medication, tracking his sleep, exercising regularly and focusing on his diet among other strategies, Carl has reduced the frequency of his migraines from six attacks per week to less than six per year.
Meanwhile, it's been 15 years since Chloe was diagnosed with fibromyalgia. She is working hard to try to break the stigma around invisible illness and disability.
"A lot of people would assume that [invisible illness] would be a negative thing [but] you can be sick and disabled and be a fully whole [and] happy human being. And that's not to say that having an invisible illness or being chronically ill or disabled isn't frustrating and tough. But I wouldn't change it for the world. It has shown me how f---ing tough I really am," she said.
Chloe is trying to break the stigma around invisible illness and disability, and wants to encourage people to listen to people living with these conditions and believe their experiences. Source: Supplied
"It is human nature to believe something because we see it. We need to listen to what people have to say and believe chronically ill and disabled people when they're speaking about their experiences.
"I've gotten to the stage where speaking about my chronic illness and my disability is something that I deeply, deeply care about."
Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at beyondblue.org.au. Embrace Multicultural Mental Health supports people from culturally and linguistically diverse backgrounds.
And for more stories on sex, relationships, health, wealth, grief and more, head to Insightful — an SBS podcast series hosted by Kumi Taguchi. Follow us on the SBS Audio App, Apple Podcasts, Spotify, or wherever you get your podcasts.
