More than Seizures: Living with epilepsy
For many young Australians living with epilepsy, one question can shape everyday life – do I tell them?
A new research project at CQUniversity is exploring the deeply personal and often invisible decisions people with epilepsy face when deciding whether, when and how to tell others about their condition.
Led by CQUniversity social work researcher Madonna Lewis Chesham, the study will examine the experiences of people diagnosed with epilepsy in young adulthood, focusing on how they navigate work, study, friendships, relationships and independence while managing a lifelong condition.
Ms Lewis Chesham said epilepsy remained widely misunderstood despite advances in medical treatment, with many people still experiencing stigma and concern about how others may respond.
“For many people living with epilepsy, deciding whether to tell someone about their condition is not a simple decision,” she said.
“It can be something they weigh up regularly – whether they’re starting a new job, meeting new friends, moving into a share house or entering a relationship.
“People often think disclosure is a one-time conversation, but for many young adults it’s an ongoing process shaped by trust, safety and concern of being treated differently.”
The research will examine how young adults learn to live with epilepsy over time, and the strategies they use to manage conversations around their diagnosis in social, educational and workplace settings.
Young adulthood is already a period marked by major life transitions, but Ms Lewis Chesham said epilepsy could add another layer of uncertainty and emotional pressure.
“While many people focus on seizures and medical treatment, there’s often less attention given to the social and emotional side of living with epilepsy,” she said.
“This research is about understanding those quieter experiences – the moments where people are trying to work out who they can trust, how others might react, and how epilepsy shapes their identity and future planning.”
The project is informed by Ms Lewis Chesham’s personal connection to someone who developed epilepsy in young adulthood – an experience she said highlighted the broader emotional and social impacts of the condition.
“Seeing someone navigate epilepsy opened my eyes to how much of the experience exists beyond the medical diagnosis,” she said.
“I saw how it affected independence, study, relationships and future plans, and how nuanced and complex decisions about telling others could be.
“That experience made me realise there are still gaps in understanding and support for young adults living with epilepsy.”
The study aims to help ensure future policies, healthcare responses and support services are shaped by the voices and experiences of people living with the condition. Researchers also hope the findings will encourage more inclusive approaches in schools, universities, workplaces and healthcare settings.
Based at CQUniversity’s Bundaberg campus, Ms Chesham is seeking participants from across Australia who were diagnosed with epilepsy between the ages of 18 and 26 and are willing to share their experiences in a one-on-one interview, either in person or online.
Participants will receive a $50 eGift voucher for their time.
To learn more or express interest, contact Madonna Lewis Chesham at m.chesham@cqu.edu.au or phone (07) 4150 7119.
