Mental health campaign

It’s Time to Talk about Epilepsy

Our Policy and Communications Manager, Ross Cunningham, shares his own experiences of depression and anxiety.

Also, how we are eager to hear the experiences of people living with epilepsy and mental health struggles to paint a picture for ourselves and to policymakers about the current situation and what steps can be taken to improve lives.

Depression is a horrible, horrible illness. It’s something I have battled myself in the past and when it is severe it can be completely debilitating.

I’ve also had to contend with anxiety at different points in my life. Like depression, it can be an awful condition to experience, but fortunately, I’ve found ways to manage it.

I don’t live with epilepsy, but for people who do depression and anxiety can be common.

I can’t put myself in the shoes of someone living with epilepsy but from listening to the lived experiences of the people I’ve met living with the condition, particularly those with unmanaged seizures, life can be extremely challenging.

Getting on a bus, going to the shops, attending a job interview, or meeting friends for a drink are all fraught with the anxiety of “will I have a seizure when doing these things?”

It can also create a vicious cycle: the fear of a seizure occurring can, in turn, increase the likelihood of it.

It’s understandable why someone in that position would try to distance themselves from others and not take part in social events or feel supported enough to go to work.

But it shouldn’t be that way – and we can’t let it continue to be that way.

 

It’s Time to Talk about Epilepsy

People living with epilepsy have a right to live free of discrimination, to have access to high-quality support, to be valued and included in society, and to determine their own way of life.

And for people living with epilepsy who are struggling with their mental health, Epilepsy Scotland is here to help. Whether that’s through our Helpline, Check-in, or Wellbeing services.

But more – much more – needs to be done, which is why Epilepsy Scotland’s latest policy work is so important.

‘It’s Time to Talk about Epilepsy’ is the beginning of a potential campaign around mental health and epilepsy which will be formed by the responses we receive to our national survey, which is running now until 13 March.

Parliamentarians from all parties have helped support it so far, including Alasdair Allan MSP, who is one of the estimated 58,000 Scots living with epilepsy.

To date, we are close to the 500 response mark but want to get over 1,000 to ensure a large sample size.

We want to listen to the experiences of all people living with epilepsy in Scotland.

Only then can we paint a picture for ourselves and to policymakers about the current situation and – crucially – what steps could be taken to improve lives.

Epilepsy Scotland’s vision is to work with people living with epilepsy to ensure their voice is heard – please make your voice heard through this survey.

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.