Researchers found young people with chronic illness were often told their symptoms were part of growing up, caused by stress or related to mental health, when the reality was a serious underlying condition requiring medical attention.

The study, published in the Journal of Applied Youth Studies, Unpacking the Assumptions, Oversight and Consequences that Surround Young People’s Difficulties in Accessing Chronic Illness Diagnosis and Care, draws on interviews with 33 Australians aged between 19 and 29 (23 women and 10 men) living with chronic illness. 21 participants had become ill while a child or teenager, although some had only received an official diagnosis once a (young) adult.

Lead researcher Dr Imogen Harper, from the Sydney Centre for Healthy Societies, said the research highlights how deeply held assumptions about youth can prevent young people from receiving appropriate care.

"Because young people are expected to be healthy, early signs of illness can be overlooked, dismissed or explained away, sometimes until conditions become more severe."

Researchers found participants frequently struggled to have their physical experiences taken seriously, with symptoms often attributed to normal adolescence, stress, anxiety or behavioural issues.

One young woman, who had recently been diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome after years of illness, told the research team: “I can remember a few times [the school] described me as difficult, a problem child, a bad person, careless. I was sent to the principal’s office a few times, lectured, things like that. And all along I was really struggling.” 

"Although our participants were living with very different chronic illnesses, elements of their stories were remarkably similar. Whether it was endometriosis, Crohn's disease, rheumatoid arthritis or a rare condition, many described the same experience of having their symptoms dismissed because they were young,” said Dr Harper.

For many participants, the “invisibility” of their conditions made things more difficult, as another young woman who Dr Harper spoke to explained:

For some young people, repeated dismissal began a cycle of self-doubt where they questioned their own experiences, minimised symptoms or became reluctant to seek medical support.

“When young people are repeatedly told that what they are experiencing is not serious, they can begin to distrust their own bodies and their own understanding of their health,” Dr Harper said.

The research also found parents and carers often faced barriers when advocating for their children.

While many parents played an important role in seeking answers and supporting their children through healthcare systems, researchers found their concerns were sometimes dismissed or reframed as overprotectiveness.

“When parents and young people are repeatedly not believed, the message they receive is that their own knowledge and experiences cannot be trusted,” Dr Harper said.

The consequences extend beyond delayed diagnosis, affecting young people’s confidence in managing their health and their relationships with healthcare systems.

The research found that even after receiving a diagnosis, many young people continued to struggle to have their expertise recognised by healthcare professionals.

“The problem is not simply delayed diagnosis, but a broader culture in which young people's accounts of their own health are too often dismissed,” said Dr Harper.

"The consequences extend far beyond the time it takes to receive a diagnosis. It can shape how they understand their bodies, whether they seek help in the future, and ultimately their physical and mental health."

The researchers say schools and healthcare providers need to better recognise chronic illness in young people by listening to their experiences, improving health literacy, and treating young people and their families as partners in care rather than passive recipients of treatment.