Epilepsy is more than just seizures—it’s a condition that can affect every aspect of a person’s life.

Linsey was diagnosed with epilepsy 11 years ago. She shares the impact epilepsy has had on her and how her mental health suffered as a result.

When did you first get diagnosed with epilepsy and how did you feel when first diagnosed?

I got diagnosed when I was 24 (35 now) and it was a massive shock to me.

When I heard the word epilepsy, the first thing that came to my head was shaking bodies and flashing lights. knowing I could of been having seizures for a number of years and no one noticed and people put it down to ‘day dreaming’.

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

I have absences, tonic-clonic and cluster seizures.

Also, I wear epilepsy bands when I’m out and about in case it happens. I don’t want people to worry or be scared that I’m drunk or on drugs.

It depends what type of seizure I have. If it’s an absence usually headaches and brain fog. If it’s tonic-clonic or clusters, it can be a week or two before I’m recovered.

It feels like a really hard gym session. I usually can’t get up on my feet without help. The weight on my legs is too much, usually bite the inside of my cheeks or my tongue as well.

What challenges have you faced since being diagnosed with epilepsy?

Most challenging is people treating you different, trying to get a job as soon as you mention the word you can feel things change in the interview.

Workplaces not knowing enough about it and say stupid things that could be insulting and learning about epilepsy, I did all that myself I had no help.

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

Yes, epilepsy is more than just a seizure. It’s dealing with the brain fog, the pain you could be in if it was a full seizure.

It’s the side effects of your medications that sneaks in and messes everything up.

When you have epilepsy, you don’t know when it’s going to happen, sometimes you might get a warning, but you always have that thought in the back of your head, what if I ruin this day because I take not well.

Do you feel that epilepsy has stopped you doing what you want to do?

I definitely don’t feel as confident as I did when I was in my 20s. My husband and I spilt up five years ago and I haven’t been interested in dating anyone because he was the only guy I’ve dated since having epilepsy and I don’t know how people will react to that.

I’ve had really bad experiences with work so finding a workplace that understands, again I usually find if I’m speaking to someone about epilepsy, they only think it’s down to the lights so if people in general knew more about it.

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

When I was first diagnosed, I couldn’t leave the house without having a panic attack. I was in a bad way.

The medication I was taking, the side effects were bad temper/suicidal thoughts, so trying to deal with your diagnosis and dealing with your seizures and then taking tablets that don’t make you feel better and take a while to find the right brand/dosage for you. It can be a lengthy process that will have its highs and its lows.

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

Personally, I haven’t been given any support from hospitals/ nurses.

It’s when I found the Epilepsy Scotland page on Facebook and I gave it a nosey and it was everyone helping each other.

When people are having similar issues, and you realise you’re not imagining things or I’m not overthinking.

What has helped you with your mental health?

Talking is a good thing for mental health. I say all the time there should be meet up groups for people it could do wonders.

A group for parents with children with epilepsy can be a support branch, just little groups like that where everyone feels the same and just talking it over.

What more do you think can be done to support people living with epilepsy who are struggling with their mental health?

I would try and be as supportive as I could to the person suffering with mental health as well as their epilepsy, but there’s only so much one person can do.

The person needing help needs to want it as well or it won’t work.

If you are struggling with your mental health, please call our freephone Helpline on 0808 800 2200 or email us at contact@epilepsyscotland.org.uk