If you would like to talk to someone about epilepsy, our trained advisers are here to help.
I had my first tonic clonic seizure when I was 21. At first my family and I had no idea what was happening to me. Four weeks later I was diagnosed with myoclonic epilepsy. I really struggled a lot in the early years with my diagnosis. My memory isn’t how it used to be and it’s been that way since my first seizure.
Even though my epilepsy is with me for life, I have found it difficult to accept at times. I’ve worked since I was 16, mainly in warehouse/factory work, and I’ve found when I mentioned my epilepsy to my colleagues or my employer that it’s met with shock – because I look no different to them. Even though my epilepsy is controlled with medication, I have still been ‘let go’ in numerous jobs, and I know it’s because of my epilepsy, even though it’s never been directly said to me.
I’ve worked at my current employers, Print Foundry Lab, for about six months now. I didn’t tell them about my epilepsy at interview, but I decided to tell them about it recently following a phone call from my GP regarding a medication check-up. I chose this moment to tell my production manager – he was really understanding and wanted to know more.
They have since printed out a guide about how to deal with tonic clonic seizures, which they’ve put up on the factory floor and in the offices. I find it really reassuring to know that they have accepted me and my epilepsy. They want to understand more and always make sure I’m ok. I have regular chats and meetings with them and I get feedback on my work. They are interested in me as an individual and I feel part of a team. I feel really valued and that is so important.
I think it’s important to tell your employers what kind of epilepsy you have and think a tool like the Epilepsy Action toolkit is really useful to help open up those conversations. There are many different kinds of epilepsy and explaining to your employer more about the type of epilepsy you have means that they can act straightaway if a seizure happens.
It hasn’t always been easy and I have thought about not declaring my epilepsy to anyone. But I wouldn’t be true to myself and I don’t want to keep anything back when I’m proud to be me and knowing what I overcame after having my first seizure at 21.