Over 150,000 Australians face the challenges of epilepsy, making it one of the most common neurological disorders. 

Epilepsy is characterised by recurrent seizures which are caused by a temporary disruption of the electrical activity of the brain.  

Thankfully, for up to 70 per cent of people with epilepsy, seizures can be very well controlled with medications. For a subset of the remaining 30%, surgical treatment can lead to seizure freedom. For those who are not candidates for surgery, options include neurostimulation (e.g. vagus nerve stimulation), dietary therapies and new medications; these options will rarely stop a person’s seizure but can improve their seizure control.    

Epilepsy, however, is much more than just seizures.  

People often don’t talk about the impact of this diagnosis on their day-to-day life or mental health. Indeed, for many people, the psychosocial consequence of epilepsy can often be more problematic than the seizures themselves. 

Living with epilepsy means living with uncertainty. Seizures typically do not follow a specific pattern, meaning that the individual must constantly adjust their day and prepare for their plans to be changed. 

The unpredictability of seizures and the related lack of control may erode self-confidence and self-esteem. 

Education: Academic challenges, misconceptions, and social difficulties in the school environment are common among children and young adults with epilepsy. 

Family relationships: Over-protection and sibling conflicts often arise, impacting familial dynamics and contributing to social isolation. 

Stigma: Despite improvements in general awareness, at least in Australia, stigma and misinformation remain significant barriers to education, employment, and access to appropriate supports. 

Social networks: Fear of seizures in public settings leads to social anxiety, isolation, and limited participation in activities. A lack of eligibility to get a driver’s license can impact on job opportunities, living arrangements, levels of freedom and personal independence.  A reliance on public transport and/or other people to get around is a common frustration.  

Treatment effects: Long-term drug treatment can result in challenging side-effects, and treatment failures are disheartening. 

Most people who suffer with epilepsy lead full and productive lives. Ongoing education and awareness initiatives, however, are crucial to reduce stigma and improve understanding. 

Specialised programs, like the Bladin-Berkovic Comprehensive Epilepsy Program at Austin Health, offer resources and long-term support for people undergoing surgical treatment of their epilepsy. 

People with epilepsy should be encouraged, where appropriate, to join epilepsy forums and support groups. Such services provide emotional support, contacts, information and reduce social isolation.