Patience was diagnosed with epilepsy five years ago, when she was 14. She has both tonic clonic and focal seizures, sometimes two or three a week.
She’s speaking up this Purple Day to let people know that you can’t always see what is going on with people. Some disabilities are invisible.
“I always get people looking at me and saying ‘but you don’t look like there is anything wrong with you’. It’s so frustrating. I sometimes have lots of seizures in a week, and I feel like I have to let people around me know, but it can have devastating consequences.
“Epilepsy has affected my life in more ways than I can imagine and during the most crucial times of my education,” says Patience. “My epilepsy has stopped me from going to university and living on my own. However, I am still proud of the fact that during that I haven't changed as a person. I’ve managed to stay strong and finish my GCSEs and A Levels with wonderful grades, despite having really bad attendance and despite all the teachers doubting I could do it.”
“I have been laid off jobs because of my epilepsy and with no job I need support,” she says. “When I was applying for PIP, I had to fight hard for any support. When using a disabled bus
pass and railcard, I often get asked what's wrong with me. I just feel like in order to get any help, I need to look disabled. This is not fair for other people in the same position as me.”
"She says she remembers the day when she had her first seizure ‘like it was yesterday’: “I was getting ready for school one day, and I just fell, just dropped to the floor. I kept having them after that so the doctors had to investigate. But my family knew nothing about epilepsy. It would have definitely have been easier for us all if we had known more before I started having seizures.”
"In all of the uncertainty with the coronavirus, Patience is trying to remain positive.
“I have found that the main triggers of my seizures are stress, lack of sleep and if my body is just under pressure. For example, being on my period can cause a seizure. So I’m trying to keep calm but it is hard. I've been having quite a few seizures despite isolation. I officially lost my job a week ago which is not ideal so I'm feeling sad about that and with this virus just not knowing what your life plan will be is scary. It’s been taking a toll on my mental health, but I’m trying to look after myself the best I can.”