Nicole was diagnosed with epilepsy when she was 13 years old. She shares the impact epilepsy has had on her mental health and the challenges she has faced looking after her two girls.

What type of seizures do you have? How does it affect you?

I was only taking focal seizures which was just a small twitch each morning, but it then developed into tonic-clonic and absences.

It has affected me throughout my whole life as I missed a lot of school, I was rejected for jobs for declaring I had epilepsy and was also disciplined for taking seizures due to absences.

Also, it has taken a toll on my mental health and leaves me with bad anxiety.

What challenges have you faced since being diagnosed with epilepsy?

My parents have always raised me to still be able to do anything I want if its supervised which I am super thankful for as it has helped me be who I am today.

Challenges I do face however, now that I am a parent to two beautiful girls, is that I can’t just take them swimming myself or I can’t bath them on my own.

My anxiety is also doubled if not tripled since becoming a parent as I am always thinking ‘what if’.

What if I’m holding my baby and I take a seizure or what if I’m making dinner and take a seizure.

There is a constant crippling fear, even though I have been seizure free for eight years.

We always say that epilepsy is more than seizures. Do you feel this has been your experience?

100% people hear the word epilepsy and think oh the lights must bother you then.

Not the case at all, people don’t understand it is a crippling condition that even if you are seizure free for a period you are left with crippling anxiety and constant fear.

Also, medications leave you totally drained and mess with your motivation and concentration, so people just assume your lazy all the time.

Has your epilepsy diagnosis impacted your mental health? If so, in what way?

Yes, to begin with I was a teenager with not a care in the world except what my plans where at the weekend with my friends.

Then the diagnosis of epilepsy comes and I’m suddenly under watch of all these doctors and parents are listening for any sound in case it’s me falling taking a seizure, not allowed to lock the bathroom anymore and having to tell everyone my every move.

Also, taking medication but being told the doctors don’t know what one will work, so I will be a ‘guinea pig’, until they find the correct drug and dose so adding all the side effects into my already chaotic life just drives my mental health and anxiety into overdrive.

Then comes work life, relationships, and family life. It’s a constant battle, even though people look at you and say well you look, okay? Instead, we are fighting a battle they know nothing about.

What kind of support have you received to help your mental health?

I have spoken to doctors and Samaritans and only just after lockdown I was passed onto Epilepsy Scotland who were amazing with me and gave me weekly check ins and where just there for a chat if I needed it.

Honestly, couldn’t thank them enough and I know they are always there should I need that support.

What would you say to others who have been recently diagnosed with epilepsy?

Be strong, be brave and don’t be afraid to ask for help.

There is so much help there now and so many community chats to reach out to.

It’s a tough road ahead of course but let people guide you through it and help take the burden off you.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.