Why this project exists
Epilepsy: The Untold Side is an independent awareness and education project for the parts of epilepsy that are often hidden, misunderstood or difficult to explain.
Beyond the visible seizure
Appointments and first-aid guidance understandably focus on seizures. But epilepsy can also affect recovery, memory, sleep, confidence, safety, relationships, work, caregiving and everyday life. This project gives those subjects room to be seen.
What makes this site different
Evidence first
Clinical information is checked against authoritative guidance and peer-reviewed research, with sources linked so readers can follow the evidence for themselves.
Experience matters
Lived experience can reveal what clinical descriptions miss. Personal stories are clearly identified as experience, not presented as medical evidence.
Awareness can be visual
Original posters and artwork make room for subjects that can be difficult to capture in ordinary health information.
How the site is organised
Understanding Epilepsy is the permanent reference library. Deep Dives investigate narrower questions in more detail. Voices & Stories holds permission-based lived experience. Art & Awareness is the visual side of the project. Research & Resources shows the evidence and organisations behind the information.
Independence, permissions and accuracy
The Untold Side is not a replacement for clinicians, emergency services or established epilepsy organisations. Health information is written in original language, country-specific guidance is identified where relevant, and important classification or guidance changes are reflected as the site develops.
Community stories, interviews and contributions are only published with permission and with the contributor’s agreed level of credit. Nothing submitted through the site is published automatically.
What The Untold Side is trying to do
Explain what gets missed
Give proper space to recovery, cognition, behaviour, safety, family impact, stigma and the less visible parts of epilepsy.
Separate evidence from experience
Research, personal stories, history and awareness art each have their own place so readers can tell what kind of information they are looking at.
Stay useful
The aim is not to collect pages for the sake of it. New material should answer a real question, correct a misunderstanding or add something that is genuinely missing.
Who the site is for
The Untold Side is written for people with epilepsy, families, carers, friends, advocates and anyone trying to understand the condition beyond the most visible seizure. It is designed to be readable without assuming medical training, while still showing where the evidence comes from.
In Memory of Cath
Cath was part of the Epilesode community and shared her experience of living with epilepsy with warmth, honesty and a gentle outlook on life.
On one of my posts, she wrote:
“I stay positive and cheerful with it all.”
— Cath
Those words stayed with me. Cath is remembered with affection, and her voice will not be forgotten.