Mental health and epilepsy: Jacquie’s story

Jacquie shares her epilepsy story. How she felt when she was first diagnosed, the challenges she has faced, and how her epilepsy has impacted her mental health.

Everything was great. I was completely and utterly healthy.

The only time I had ever been in the hospital was to have my son and he was born by C-section in 2010.

I was very healthy, did half marathons, and had been completely financially and in every way independent since I was 17.

Then when my son started school, I was thinking about returning to work. I’ve got a Master’s degree in palliative medicine and wanted to use it in some way and go back to work.

I was driving home from dropping him off at school. I live in a rural location about two and a half miles from any village and I was driving home and drove at high speed into a ditch.

My car was found submerged in the ditch and I was found wandering alongside the road.

I was admitted to the hospital when I was found. I was presumed to have a traumatic brain injury, which I did.

When I attended the outpatient appointment about 2-3 weeks later, they admitted me to the Southern General in Glasgow, they did all the tests and I was diagnosed with mild cognitive impairment and focal tonic-clonic epilepsy in April 2017.


Life completely turned upside down

So, literally, I went from being completely independent and not having any medical problems to not being able to leave the house myself.

I couldn’t drive, couldn’t get back to work, and at times, couldn’t even look after myself or my son. It’s affected every single possible aspect of my life.

I had so much difficulty adjusting, to begin with. I took so many ridiculous risks because I refused to accept that this was going to be my life.

As well as the diagnosis of epilepsy, since I was diagnosed, I’ve had 21 emergency admissions to the hospital and they’ve all resulted in stays at the hospital between four days and five weeks.

There has been a rational explanation for that. For example, I had a really bad seizure at the back door and nobody found me until like five hours after my seizure.

I had aspiration-type pneumonia and ended up really unwell as a result of that.

I mean my son, who is now 12, and the impact on his life is immeasurable.

At times he has come home and found me on the floor where my head has split open following a seizure.

He was eight when he first found me like that. He has had to phone ambulances and talk to medical personnel and come into ambulances with me because there’s no one else there to do it.


Impact on mental health

I think that I’m quite a resilient person anyway. Mentally quite self-motivated and I’ve always been self-motivated in all areas of my life.

I don’t feel sorry for myself. I don’t want sympathy. Probably because of 20 years working in the healthcare setting, the last thing I want is for anyone to feel sorry for me.

Always want to maintain that fierce, sense of independence.

As well as being a good thing. That was a negative thing to begin with because I took a lot of stupid risks. Endangering myself, to begin with.

Even though that fierce independence may have helped me in the long run, at the beginning it was a huge challenge having the input of neuropsychology quite early on in my diagnosis.

That was really important to my wellbeing, and mental wellbeing because I had to learn how to stop comparing me now to the me I was before.


Epilepsy Scotland’s Check-in service

My journey has been so intense and I have been in and out of the hospital so many times and it has been a big strain on my family.

In my first face-to-face with my epilepsy specialist nurse last summer, I felt I couldn’t cope with this anymore and don’t know if I want to go on like this any longer.

Just felt what is the point in this. It is a crap life but that was how I felt and I think of the intervention of Uschi and Epilepsy Scotland’s check-in service talking about these things that I had been bottling up for a long time.

Uschi would frame things a certain way that had never been said to me like look what you have coped with, no wonder you are feeling this way.

Nobody had ever said things like that to me before, and that was a big step for me to be able to accept that help without there being any label attached to it.

The reason I bother is that I have a son who is 12, who loves his mum and needs his mum.

That’s why I keep going. That’s why I keep fighting. If it wasn’t for him, I would have given up a long time ago.

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

We have launched Scotland’s first-ever national survey seeking to understand the effect epilepsy can have on the mental health of someone who has a neurological condition. To complete the survey, please click here.