Living Beyond Seizures: Understanding Epilepsy, Breaking Stigma, and Building Support

Over 50 million people in the world live with epilepsy – yet epilepsy remains one of the most misunderstood conditions – often hidden, often feared. Awareness of the condition matters so that we can ensure the safety of individuals, improve their quality of life, and increase support, treatment, and research. The goal of this blog is to leave you with a clearer understanding of epilepsy and help those living with epilepsy feel seen, supported, and empowered.

Epilepsy: More Than Just Seizures

When people think of epilepsy, seizures often come to mind – but there’s far more to it. Seizures can be triggered by many factors, and they don’t always involve dramatic collapse. In fact, the indications that a seizure could be on the horizon are often subtle, and this is how it is instigated:

·       The Prodrome Phase – Mood shifts, déjà vu, dread, or strange sensations hours or days before a seizure

·       The Ictal Phase – Repetitive movements, muscle tightening, or leg motions like cycling

·       The Postictal Phase – Fatigue, confusion, memory issues, or emotional distress afterwards

Understanding these stages helps us to realise what someone with epilepsy might be experiencing – even if it isn’t obvious.

How Epilepsy Affects People Day to Day

Whilst epilepsy is often characterised by dramatic seizures, there are several types – each with distinct features:

·       Tonic-clonic – Loss of consciousness, muscle tightening, and shaking

·       Tonic – Sudden muscle tightening, often causing falls

·       Atonic – Muscles go floppy, leading to sudden drops

·       Absence – Brief deteriorations in awareness, often misinterpreted as daydreaming

·       Focal – Unusual sensations, emotions, or movements

·       Myoclonic – Quick, involuntary muscle spasms

Understanding these types helps us recognise that epilepsy isn’t one-size-fits-all – and that all seizures manifest differently according to each person with the condition.

Fighting Misunderstanding and Stigma

People with epilepsy deserve understanding, not fear. Many are open to sharing their experiences – and simply want to be seen as individuals, not defined by their diagnosis. Sadly, stigma still persists. One person shared how they were assumed to have intellectual disabilities and questioned for pursuing a master’s degree. Another received hate mail mocking their seizures. These stories are real – and deeply upsetting. As someone with friends who have the condition, I know the value people with epilepsy bring to our communities, and therefore seek to put an end to stigma, by discussing misconceptions and breaking these apart. Invite people with epilepsy into your community. Open the door to participation. You’ll be surprised by the strength you find.

The Lifelines: Epilepsy Action and MedicAlert UK

Reading case studies from people with epilepsy has shown me how vital organisations like Epilepsy Action and MedicAlert UK truly are. Epilepsy Action’s befriending service helps individuals connect, share experiences, and feel less alone. MedicAlert UK provides easily identifiable items like bracelets and wallet cards that display medical information – a lifeline during emergencies. These services reduce anxiety and offer reassurance that someone will know how to help. Without them, many would face isolation and fear. As someone with disabled friends and lived experience, I know how much confidence and dignity these supports can restore. Advocacy and visibility aren’t optional – they’re essential.

Living with Epilepsy: A Personal Perspective

One of my friends, who lives with epilepsy, is a passionate advocate for disabled people and mental health. She once worked in advocacy, but now finds the number of professional opportunities to do so few and far between due to organisations failing to provide proper support. Despite her talents, she’s faced bullying, ignorance, and exclusion – yet she continues to raise awareness and fight for change. When people show curiosity and kindness instead of fear, it makes a world of difference. She’s not just surviving – she’s a pillar of the community. People with epilepsy deserve more than tolerance; they deserve opportunity, inclusion, and the freedom to thrive.

What You Can Do to Make a Difference

Supporting someone with epilepsy starts with curiosity and compassion. Ask respectful questions – most people appreciate genuine interest in their experiences. But listening is just as vital; empathy grows when we truly hear each other. Offer help when needed, whether it’s with daily tasks or simply being present. Physical activity can also boost wellbeing, and celebrating small victories – like completing a chore or attending an event – builds confidence. For those living with epilepsy, these moments aren’t minor; they’re milestones. Your support can turn isolation into inclusion, and uncertainty into hope. It’s not about fixing – it’s about standing beside someone as they embrace their journey through life.

Awareness That Empowers

To empower people with epilepsy, we must understand the condition, know how to respond in emergencies, and challenge outdated myths. Real change comes from sharing lived experiences, promoting inclusion, and ensuring access to support and resources. When we listen, learn, and stand alongside those affected, we help shift epilepsy from the margins to the centre – where every person can live with purpose, pride, and possibility.