Living with epilepsy: how to thrive

Epilepsy is a common neurological condition that impacts millions of people worldwide, including a significant number of Australians.

For those living with epilepsy, life can be a journey filled with unique challenges and triumphs.

The condition is more than just a medical diagnosis—it influences many aspects of daily life, from health and safety to emotional wellbeing and social relationships.

For many, the journey begins with understanding and managing epilepsy’s diverse symptoms, which range from mild, momentary lapses in awareness to more severe seizures that affect physical mobility and consciousness.

Beyond the medical aspects, living with epilepsy often means navigating the societal perceptions and barriers that can come with the condition, including stigma, misconceptions, and restrictions in certain areas of life, such as employment and transportation.

However, with proper education, support, and resources, people with epilepsy can thrive, achieve their personal and professional goals, and lead fulfilling lives.

In this article, we will explore the experience of living with epilepsy, delving into its symptoms, impacts on daily life, and the various strategies available for managing the condition.

We will also highlight how APM is committed to empowering eligible people with epilepsy through Disability Employment Services and help them succeed in their careers, build confidence, and reach their full potential.

Whether you’re living with epilepsy yourself, supporting someone who is, or simply seeking to understand more about this condition, this guide provides insights and practical information to inspire and inform.

Seizures in Australia

Seizures are relatively common, with approximately 10% of Australians experiencing at least one seizure during their lifetime. However, not everyone who has a seizure will receive an epilepsy diagnosis.

Currently, about 260,000 Australians—roughly 1% of the population—are living with epilepsy, highlighting the distinction between occasional seizures and an ongoing neurological condition.

What is epilepsy?

Epilepsy is a neurological condition characterised by recurrent seizures caused by abnormal electrical activity in the brain.

It can affect anyone at any age, with causes ranging from genetic predispositions to brain injuries. In Australia, about 1 in 25 people will be diagnosed with epilepsy during their lifetime, according to the Epilepsy Foundation Australia.

What are the types of seizures?

Seizures are a key characteristic of epilepsy and occur due to abnormal electrical activity in the brain.

While they vary widely in how they manifest and affect individuals, seizures are broadly classified into two main categories: focal seizures and generalised seizures. Understanding these categories is essential for identifying and managing epilepsy effectively.

Focal seizures

Focal seizures originate in one specific area of the brain, and only affect one side of the brain and body. Their effects depend on the region affected.

These seizures are further divided into two subtypes based on the individual’s level of awareness during the event:

• Focal aware seizures: During these seizures, the person remains fully conscious and aware of their surroundings. Symptoms can include unusual sensations like tingling, flashing lights, or sudden feelings of déjà vu. Some individuals may experience involuntary movements in one part of the body, such as the hand or face.
• Focal impaired awareness seizures: In these seizures, awareness is altered, and the person may seem confused or disconnected. They may display repetitive behaviours, such as lip-smacking or fidgeting, and might not remember the seizure afterwards.

Focal seizures can sometimes spread to other areas of the brain, potentially evolving into generalised seizures. This progression is known as secondary generalisation.

Generalised seizures

Generalised seizures involve both sides of the brain from the onset and often result in a loss of consciousness or awareness.

These seizures can take various forms, each with distinct characteristics:

• Absence seizures: Sometimes referred to as ‘petit mal’ seizures, these cause a brief lapse in consciousness, often mistaken for daydreaming. They are most common in children and typically last only a few seconds.
• Tonic-clonic seizures: Also known as ‘grand mal’ seizures, these are the most widely recognised type. They involve two phases: the tonic phase, where the body stiffens, followed by the clonic phase, where rhythmic jerking occurs. These seizures can last for several minutes and may require recovery time afterwards.
• Myoclonic seizures: These cause sudden, brief jerking movements in one or more muscle groups. They often occur shortly after waking up and do not typically lead to a loss of consciousness.
• Atonic seizures: Known as ‘drop attacks,’ these seizures result in a sudden loss of muscle tone, causing the person to collapse or fall. Protective measures, such as wearing a helmet, may be needed to prevent injury.
• Tonic seizures: These involve sudden stiffness in the muscles, often affecting the back, arms, and legs. They typically last a few seconds and may cause falls.
• Clonic seizures: These seizures are characterised by repeated jerking movements of muscles, often in the arms, legs, or face. Unlike tonic-clonic seizures, they involve only the clonic phase.

Why is understanding seizure types important?

Accurate identification of seizure types is crucial for diagnosis, treatment, and management.

Different types of seizures respond to various treatments, including medication, dietary adjustments, or other interventions.

Knowing the specific seizure type can help individuals and caregivers prepare for and respond effectively during an episode, ensuring safety and support.

By understanding these classifications and their unique features, individuals living with epilepsy and their support networks can better navigate the condition and collaborate with healthcare providers for tailored care and management.

What is the impact of epilepsy

Epilepsy affects people in many different ways, influencing not only their physical health but also their emotional wellbeing and daily activities.

Understanding these impacts is essential for creating a supportive environment that enables people with epilepsy to lead fulfilling lives.

Physical health

Epilepsy’s physical effects on the body can be significant. Seizures, particularly those that occur without warning, can lead to injuries such as cuts, bruises, or fractures caused by falls.

Additionally, the recovery period after a seizure can bring fatigue, muscle soreness, and a general feeling of exhaustion, making day-to-day tasks more challenging.

A rare but serious risk associated with epilepsy is Sudden Unexpected Death in Epilepsy (SUDEP), which occurs in a small number of cases, typically linked to uncontrolled seizures.

Although the risk of SUDEP is low, it highlights the importance of managing seizures through medication, lifestyle changes, and regular medical consultations to minimise potential dangers.

Emotional wellbeing

Living with epilepsy often takes a toll on mental health. The unpredictability of seizures can foster feelings of anxiety, especially in social or professional settings. Fear of stigma or misunderstanding may also lead to isolation or lowered self-esteem.

Depression is another common challenge for people with epilepsy, driven by the condition’s impact on independence and perceived limitations.

However, building a strong network of supportive family, friends, and healthcare professionals can significantly alleviate these emotional burdens.

Access to counselling or peer support groups can also play a vital role in helping individuals navigate the mental health challenges associated with epilepsy.

Daily life

Epilepsy can impose restrictions on certain activities due to safety concerns or legal regulations. For example, people may be unable to drive until they have achieved a seizure-free period as mandated by law.

Similarly, certain careers and employment—especially those involving heavy machinery or working at heights—might not be suitable for people with uncontrolled seizures.

Despite these limitations, individuals with epilepsy can still lead rich and fulfilling lives. With the right support systems in place, they can pursue hobbies, relationships, and rewarding careers.

Employers and educators can contribute by fostering inclusive environments and offering reasonable adjustments, such as flexible schedules or assistive technology, to accommodate individual needs.

By proactively managing the risks and seeking emotional and practical support, people living with epilepsy can overcome barriers and achieve their personal and professional aspirations, demonstrating that the condition does not define their potential.

Managing epilepsy: strategies for empowerment

Managing epilepsy involves medical, lifestyle, and emotional strategies tailored to each individual's needs.

Medical management

• Medication: Anti-epileptic drugs (AEDs) are often the first line of treatment.
• Surgery: In cases where seizures are drug-resistant, surgery may be an option.
• Emerging treatments: Innovations like vagus nerve stimulation and dietary therapies (e.g., ketogenic diets) provide alternatives for some individuals.

Lifestyle adjustments

• Sleep hygiene: Regular sleep patterns help reduce the likelihood of seizures.
• Stress management: Techniques like mindfulness and exercise can help regulate the nervous system.
• Seizure triggers: Identifying and avoiding triggers, such as flashing lights or certain foods, is essential.

Emotional support

• Therapy: Psychological counselling and cognitive therapies can help in coping with the emotional toll of epilepsy.
• Community groups: Peer support groups provide a safe space to share experiences.

How to thrive with epilepsy

While living with epilepsy presents challenges, countless Australians demonstrate resilience and determination, leading rich, fulfilling lives.

With the right support and resources, many individuals with epilepsy achieve personal and professional success, participate in sports and recreational activities, and make meaningful contributions to their communities.

Their achievements highlight the importance of creating inclusive environments and offering tailored support to help people with epilepsy realise their potential.

Employment and epilepsy

Meaningful employment is a vital aspect of life for many people with epilepsy, offering financial independence, personal growth, and a sense of purpose.

However, individuals with epilepsy may face unique barriers in the workplace, such as concerns about safety, misconceptions about their condition, and the need for specific accommodations.

At APM, we are committed to addressing these challenges and empowering individuals with epilepsy to thrive professionally.

Here’s how Disability Employment Services support people with epilepsy:

• Career guidance: Our experienced employment consultants work closely with eligible job seekers to identify roles that align with their skills, interests, and health needs. We help people navigate job opportunities in industries that provide safe and supportive environments, ensuring they can pursue careers that suit their unique circumstances and aspirations.
• Workplace support: APM provides expert assistance in creating inclusive workplaces. This includes helping employers implement reasonable adjustments and modifications, such as flexible working hours, seizure-safe environments, and access to assistive technology. Our team also offers epilepsy awareness training to employers and colleagues, fostering understanding and reducing stigma in the workplace.
• Ongoing development: We believe in continuous growth and development for our clients. APM provides access to tools, resources, and training programs to enhance skills and build confidence. Whether it’s learning new technologies, gaining certifications, or improving interview techniques, we support eligible people in achieving long-term career progression.

Many people with epilepsy have achieved remarkable success across various fields, from healthcare to creative industries. These stories remind us that epilepsy doesn’t define a person’s abilities or limit their potential.

With the right support—such as that offered by APM—job seekers can find roles that value their contributions and provide opportunities for growth.

Employment is not just about having a job—it’s about finding a role that empowers people and enriches their lives.

At APM, we work to remove barriers and promote inclusivity, ensuring people with epilepsy are not only employed but valued and supported in their workplaces.

Epilepsy awareness: Breaking stigmas

Fostering a society that embraces inclusivity and understanding requires a shift in how epilepsy is perceived.

Historically, epilepsy has been surrounded by misconceptions and stigma, which can create unnecessary barriers for individuals living with the condition.

Raising public awareness is key to dismantling these outdated beliefs and building a culture of support, empathy, and inclusion.

Why awareness matters

Epilepsy affects people in diverse ways, yet public understanding often lags behind.

Myths about the condition—such as the belief that epilepsy is rare or always results in convulsions—can lead to fear, misunderstanding, and exclusion.

For individuals with epilepsy, these misconceptions can impact their confidence, social interactions, and opportunities in life.

Education is critical to dispelling myths and replacing them with facts. 

For example, understanding that epilepsy is not contagious, that many people with epilepsy can lead seizure-free lives with treatment, and that it doesn’t define an individual’s abilities, can dramatically shift public perceptions.

Awareness in action

Efforts to promote epilepsy awareness are most effective when they target various aspects of society, from workplaces to schools to public policy.

Key initiatives include:

• Awareness campaigns: National and international epilepsy awareness campaigns, such as Purple Day, provide platforms for sharing stories, highlighting achievements, and promoting knowledge about the condition. These campaigns encourage everyone to learn more about epilepsy and how they can support those living with it.
• Workplace training: Employers and colleagues often play a significant role in shaping the experiences of individuals with epilepsy. Workplace training programs can educate teams about epilepsy, addressing topics like recognising and responding to seizures, creating a supportive environment, and implementing workplace adjustments.
• Educational programs: Schools and community groups can be powerful venues for raising awareness. Programs tailored for children and young adults help foster understanding from a young age, reducing the likelihood of stigma in future generations.
• Media representation: Representation in films, television, and other media can also influence societal attitudes. Positive, accurate portrayals of people living with epilepsy showcase their capabilities and normalise their experiences.

Know someone with epilepsy? Here is how you can help

Everyone has a role to play in breaking the stigma surrounding epilepsy.

Simple actions can make a big difference, such as:

• Educating yourself: Take the time to learn about epilepsy, including its causes, symptoms, and impacts. The more you understand, the more effectively you can challenge misconceptions.
• Supporting inclusion: Advocate for inclusive policies in workplaces, schools, and communities. This might involve encouraging epilepsy-friendly practices, like flexible schedules or accessibility to seizure-safe spaces.
• Speaking up: If you hear or see misinformation about epilepsy, take the opportunity to provide accurate information. A single conversation can ripple out to create broader awareness.

The role of empathy

Above all, promoting epilepsy awareness is about fostering empathy.

People with epilepsy, like anyone else, deserve respect, understanding, and equal opportunities.

By prioritising compassion and listening to the experiences of those living with epilepsy, we can break down barriers and build communities that celebrate diversity.

The path forward

Creating a world that fully embraces people with epilepsy starts with awareness.

By challenging misconceptions and promoting education, we can cultivate an environment where individuals with epilepsy are not only accepted but empowered to thrive.

Together, through collective understanding and action, we can make a meaningful difference.

Unlocking potential: tailored services for living with epilepsy

Living with epilepsy requires courage, adaptability, and support. By leveraging medical advancements, supportive communities, and the tailored services provided by APM, people with epilepsy can overcome barriers and lead empowered lives.

For more information and support visit Disability Employment Services or call APM today to learn how we may be able to assist you or someone you care about in living and thriving with epilepsy.

Resources and further reading

• Wellness and epilepsy toolkit - Epilepsy Foundation
• Emotional health wellness factsheet - Epilepsy Foundation
• Newly diagnosed with epilepsy toolkit - Epilepsy Foundation
• Understanding epilepsy - Epilepsy Action Australia
• Managing epilepsy - Epilepsy Foundation Australia

About this article

APM supports people with disability, injury, or a health condition through various programs and services across its businesses, including Disability Employment Services in Australia.

The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.

When discussing disability, APM’s copy style is to use person-first language and the social model of disability in the first instance. Some articles may use identity-first language or refer to the medical model of disability for clarity or to better suit a specific audience.

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