Epilepsy is more than seizures. It changes lives.

I want to build on my previous post and discuss how epilepsy actually changes your life.

Because it's not just the seizures.

Seizures are undoubtedly awful, and something that we strive to stop.

But once you're "seizure free" doctors can just push you away, like you're all good now - bye!

When in reality, epilepsy has wormed it's way into pivotal parts of your life, and even your identity.

These deserve to be treated too.

Awareness and education of epilepsy holistically is needed.

Not just for doctors, but for those people with epilepsy too.

I had no idea how it would affect me, until it did.

I've learnt how to manage these areas of my life, and have adapted.

But I wanted to share this for people that don't have the insight, or for those that want to feel seen.

You only see seizures.

But epilepsy is everything in between.

It affects your: Independence, identity, relationships, and mental health.

Independence

Simple things like having a bath without supervision are out of the picture the loss of freedom is hard to explain to people who haven't lived it

Identity

You have to figure out who you are now that epilepsy is part of the picture it's taken time to think of epilepsy as something I've grown because of - it's made me who I am

Relationships

How your family sees you, how you spend time with your friends… everything changes!

Mental Health

I've had to learn to ask for help and to value myself enough to say "no" mental health the anxiety of not knowing when the next seizure will happen is constant.

I've had to grieve a version of my life I thought I was going to have.

It's exhausting to always be watching, waiting, and managing your body.

Epilepsy is so much more than seizures.

If you're living with it, I see you.

If someone you love is, I hope this helps you understand that