Madeline Bolton-Smith, a client of Fetcham Park at Bolton & Co Accountants, was diagnosed with epilepsy at the age of 13. Since then, she has lived with unpredictable seizures, pursued numerous treatments and undergone neurosurgery – all while confronting the less visible effects of the condition.

Madeline is now sharing her experiences to raise awareness, challenge misconceptions and help others feel less alone. Her new book, Diary of an Epileptic: The Hidden Reality, offers a candid account of life beyond the diagnosis – from the loss of independence and difficult treatment decisions to the emotional impact of living with uncertainty.

Madeline explains what epilepsy can really look like and the change she hopes her advocacy will create.

For someone who may know little about epilepsy, how would you describe the condition?

Epilepsy is a neurological condition that causes a tendency to have seizures because of abnormal electrical “misfiring” within the brain. There isn’t one type of epilepsy or one type of seizure.

Some people may lose consciousness and have the convulsive seizures most commonly associated with epilepsy. Others may stare blankly, become confused, experience unusual sensations or movements, or temporarily lose awareness.

Personally, I have a form of complex partial epilepsy, meaning I experience multiple types of seizures. These vary from the typical tonic-clonic – or convulsive – seizure to absence seizures, which I can only liken to repeated concussions.

I also have atonic seizures, when my muscles suddenly go limp and I become unresponsive, but the convulsing doesn’t happen. Essentially, it is the “tonic” without the “clonic” aspect of the seizure.

Epilepsy has meant living with unpredictable seizures for the majority of my life. The condition is so much more than what happens during the seizure itself.

What is the biggest misconception about epilepsy that you would like to challenge?

That epilepsy is simply someone falling to the floor and shaking. That is only one of many seizure types, known as a tonic-clonic seizure. Many seizures aren’t obvious to other people at all.

I’ve had absence seizures in public where strangers have actively jumped away from me because I will be staring blankly and often murmuring in confusion.

I’d also challenge the idea that epilepsy is something you can always control with medication. Some people, such as me, have drug-resistant epilepsy, where medicines don’t control their seizures.

I’ve undergone numerous invasive and non-invasive treatments, including neurosurgery following a lengthy campaign for NHS funding. Yet I still live with unpredictable seizures.

People often focus only on seizures. How can epilepsy affect everyday life between them?

The impact can be enormous, even when you’re not actively having a seizure. There can be exhaustion, anxiety and uncertainty, as well as the constant need to think about safety.

For me, unpredictable seizures have affected my independence, including the continual calculation of what is safe to do alone. I spend the majority of my time either alone at home or waiting for someone to take me out.

Epilepsy affects work, socialising, relationships and plans for the future. It also means I am unable to drive. People may look at you and see someone who appears completely well, while having no idea how much you are having to think about and manage behind the scenes.

What inspired you to turn your journals into Diary of an Epileptic: The Hidden Reality?

Following my unsuccessful neurosurgery, I saw a psychologist who encouraged me to write about my experiences and feelings. I had placed all my hopes in the surgery, and when it failed, writing became a way to process what was happening to me.

Eventually, my notes became so extensive that I realised what I’d written might help someone else understand that they weren’t alone.

I wanted to show the reality behind the diagnosis, including the fear, frustration, loss of independence, treatment decisions and uncertainty that don’t always appear in medical explanations of epilepsy.

I also wanted relatives and healthcare professionals to understand what epilepsy can actually feel like from the patient’s perspective.

What could friends, colleagues and the wider community do to offer better support?

Listen to people with epilepsy and don’t make assumptions about what they can or can’t do. Ask what support they actually need instead of deciding for them.

Learn what to do if someone has a seizure, but also recognise that supporting someone with epilepsy isn’t just about knowing first aid.

Sometimes the most helpful thing is understanding why plans may need to change; being patient, calm and unhurried when someone is exhausted or recovering from a seizure; and recognising that losing independence can be one of the hardest parts of the condition.

Even an absence seizure can leave me wiped out for anything from the next few hours to several days. It is a form of exhaustion that even sleep doesn’t fix, particularly if I experience cluster seizures, when they occur several times in one day or on consecutive days.

What is the most important change you would like your advocacy to help create?

I’d like epilepsy to be taken seriously as a complex neurological condition rather than something people simply have to learn to live with.

For people whose seizures aren’t controlled, I want greater awareness of the available treatment options, better communication between healthcare teams and much more meaningful involvement of patients in decisions about their care.

Ultimately, I want people with epilepsy to feel heard, understood and hopeful about their future – particularly when conventional treatments haven’t worked.

Discover the hidden reality

In Diary of an Epileptic: The Hidden Reality, Madeline shares the personal story behind these answers, offering an honest insight into the physical and emotional realities of living with epilepsy.

Order *Diary of an Epileptic: The Hidden Reality* on Amazon