Impact epilepsy has had on mental health

One of our social media followers has shared their story of living with epilepsy and the impact it has had on their mental health.


How did you feel when you first got diagnosed with epilepsy?

Confused and shocked given no one in my immediate family or from the past had it.


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

Tonic-clonic seizures, frontal lobe and myoclonic jerks (since 2017). The myoclonic jerks happen 3-4 times a week which leaves me exhausted both physically and mentally.


What challenges have you faced since being diagnosed with epilepsy?

Being ignored by people that I had been friends with for years. They see me in a different light and didn’t understand what I was going through on a daily basis.

Also, not been able to work since 2009 (had worked since 1992 when I left school).

Because I get benefits, I’ve been labelled a scrounger. Trust me, if I could, I would love to go back to work but two doctors and four specialists have said otherwise.


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

Yes. It is hard to describe though. It’s the not knowing when you will have one, although given I have had it for 28 years this year, I kind of know when I will.

To people that see me and don’t know about my epilepsy, I am just an ordinary person. Don’t get me wrong, I have never wanted to be treated differently by people.


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

Yes, I can’t work and that is the most frustrating thing. Even if I did want to work the company would need to pay more insurance for me than others that work for them in case I injure someone if I have a seizure, which I think is all wrong.


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

Yes. I was diagnosed with depression in October 2021. I had a rough idea even before then that I had depression (also panic attacks and anxiety) but I tried to work my way through it myself without anyone’s help. Worst thing I done.


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

In 2020, when COVID first started, I was meant to have meetings with a specialist about my mental health.

However, it ended up with phone calls once a week for about an hour. They helped with my panic attacks and anxiety giving me breathing exercises but sadly not my depression.


Do you feel there is a stigma surrounding epilepsy?

Yes. I have had seizures outside and despite wearing medical bracelets people walk past you as if you’re a drunk.

People just don’t understand epilepsy and maybe it is time there was a way to educate them, not just on epilepsy but other things as well (autism, ADHD).


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

It isn’t the end of the world. You can still have a life maybe not what it was like before, but you have to adapt and never give up.


Is there anything else you would like to add?

Always make sure you are on the right medication and don’t be scared to get in touch with your specialists that is what they are there for to help 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.