Gemma was diagnosed with epilepsy in her twenties after many years of seizures. She is prone to falling and this, together with the fear and reality of generalised seizures, has a huge impact on her life.
“I can rarely, if ever, leave the house alone,” she explains. “My coordination and balance are so badly affected after years of seizures, that it's too easy for me to fall. I have to wear incontinence pads because - if my brain "blips out" for even a single moment - my bladder can too easily let go.” Like many other people with epilepsy, she has often been accused of being drunk. “So I choose to stay at home and avoid being stared at, mocked, or remembered for some incident or other that was beyond my control.”
Gemma has good support around her, but daily life is still a struggle. “I fall into heavy depressions because I remember my life before epilepsy stripped it all away. I was a semi-professional swimmer, a basketball player and keen cyclist. But instead of getting out on a pushbike, I can spend anything up to a week in bed sleeping off the lingering effects of a seizure: it's like being flattened by a steamroller and leaves my body weak and my brain completely fried, with aftershocks going off all over the place. I'm so disoriented and frightened after these episodes.”
Loneliness is a major feature in Gemma’s life. “My husband works full time, meaning that I am alone all day,” she says. “My main contact with friends and family is via social media, and I very rarely manage to go out and spend an evening with them anymore. More than anything, I miss my career as a care assistant, my friends and my social life. I'm only 43, and I sometimes feel as though my life has been cruelly cut short by my inability to just get out and do things - but anxiety over my epilepsy rules everything I do now. I cannot risk walking any distance alone, and will order groceries online because I am too frightened to be in a supermarket by myself in case something happens.”
Despite everything, Gemma is trying to overcome her loneliness. “My proudest achievement was coping with Stansted Airport and flying to Sweden for a weekend before Christmas. I had never flown before, and was nervous in case of any trouble from my epilepsy, but I was fine.”