My experience of living with epilepsy

 

Helenann Murray was diagnosed with epilepsy in 2016. Helenann’s partner and her middle child also have epilepsy. Below Helenann shares her experiences and the challenges she and her family have faced.

 

What type of seizures do you have and how does it affect you?

I have tonic clonic seizures and its more when I am stressed so around Christmas time and kids birthdays. Also, being a woman my time of the month had a big part to play in this, my memory, I feel like I don’t have one at all.

 

What challenges have you faced with your epilepsy?

I am struggling to find a job. Not a lot of people understand that its not a case of having a seizure and getting on with it. There is a lot to deal with other than just having a seizure.

Also, it seems no one wants to hire me knowing I need to leave as soon as I get a phone call from my childs school, if he has had a seizure because I need to go make sure he is safe and ok. 

For example, I was at my local job centre and they told me that no one will employ me, as there is no job that would allow me to leave when I get a phone call from my kids school.

 

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

Yes definitely. It ruined all my plans I had set out in life. I feel like I have no freedom as I need to check in with someone and others constantly check on me if I am out. I ended up with really bad depression and my panic attacks have got worse.

epilepsy

 

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

Yes most definitely. I would love to drive. Even though, I haven’t had a seizure for over 2 years, I still worry what if I was to drive and have an accident while my kids were in the car all because of a seizure.

 

How did you feel when your middle child got diagnosed with epilepsy?

I felt so sad. I started to blame myself. But he had a blood test and it wasn’t a genetic form of epilepsy he has.

 

Do you feel that since you have epilepsy you were more able to provide information and support to your child?

Since my partner and I both have epilepsy, we have always been open with the kids about it so they weren’t scared when we had a seizure. We had wrote phone numbers and stuck them to the wall so they knew who to phone and what to say. However, it is obviously still frightening for a child.

 

What would you say to someone who has been recently diagnosed?

You will have a whirlwind of emotions and try not to blame yourself. Try to take every day as it comes. Realise it is not just you and you will get into a routine and it will be your new normal.

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

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