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'It is just good to cry and let it all out'


13 November 2019

Louise is 41 and has had epilepsy since she was 12 years old. She has many different seizure types and although her  tonic clonic seizures can leave her cut and bruised, her greatest fear is the complex partial seizures when she is in danger of wandering out into a busy road. She often comes out of a seizure not knowing where she is.  Here Louise talks about the support she receives from our Helpline, even if it is just having someone there to listen while she cries. 

"Having epilepsy is about so much more than the seizures. It is about the side effects from the medication, the tiredness, anxiety and  depression; problems with cognition, learning speech and aphasia where I can't remember words or names or faces.

"Simple things can be so frustrating like when I want my partner to turn on the fire because I'm cold and I'm looking at the fireplace but can only think of the word 'fridge' or 'oven'. I have to work my way through the alphabet, trying to find the right word.

'Listening to me cry'

"Being able to pick up the phone and call the Helpline is such a lifeline. It is so good to know there is someone there who understands what I am going through and will just listen,  even if it's just listening to me cry.

"Some nights I lie awake fearing the worst. What if I don't wake up in the morning? What if I have a seizure in the night and it is my last? What if I have a seizure during the day and it isn't the seizure that kills me but the fall when I smash my head on the ground?

"I know I have family and friends who I can talk to, but sometimes you don't want to burden them. You don't know what troubles they're going through. Phoning the Helpline means I don't have to be embarrassed, because no-one knows me. It is just good to cry and let it all out.

"I always come away from the Helpline feeling more confident in myself and feeling that things will be ok again."

Above: Louise with her daughter Millie.

Our Helpline Appeal

We are desperate to extend our Helpline opening hours to five days a week, so that we can answer more calls from people like Louise. You can help us to do this by donating to our Helpline Appeal. Thanks to a very generous supporter, all gifts donated before 31 December will be doubled. So, if you donate £10, that will instantly increase to £20. And with Gift Aid added, your £10 will grow to £25. Everyone needs someone to talk to. Please help us to be there when we are needed.