Our phone chat #7 – Alicia

Maria: Hi Alicia, thank you for taking the time to have a chat with me today. I understand that having epilepsy has created many challenges for you.

Alicia: Yes, living with epilepsy has certainly been challenging, heart breaking, and at times overwhelming. There are days where my brain feels as though it could explode as I have tension headaches on a daily basis.

Social occasions can cause me grief especially when I have sudden grand mal seizures in public. One day, I took my son, younger brother, and friend up the sky tower and I had a seizure in the public food court and I wet myself and vomited. I required an ambulance to help me. The following days I had a support network of people who were there to look after me until I was able to look after myself and feel safe alone again.

Maria: I can imagine how you feel. Struggling with anxiety is so common with people living with uncontrolled epilepsy. It is the unpredictability of when and where the next seizure is going to happen.

Alicia: Absolutely! The fear of being in a situation that I have no control over is terrifying. My anxiety takes over, I feel physically sick and more often than not I will choose not to go anywhere. I also feel a great deal of shame for having epilepsy because it is a hidden condition and people often say, ‘but you don’t look sick!”

I have days where inside I feel as though I am running on a fuel light and the warning bells are going off. Quite often I have to push through my anxiety.

Maria: It saddens me that there is still a lot of fear and prejudice around epilepsy and hidden conditions in general.

Alicia: Society is definitely not educated on the seriousness of hidden conditions. Apart from having epilepsy, I also have cerebral palsy and depression. I feel that I am constantly battling to keep well especially in keeping my triggers under control so that I don’t have seizures.

Maria: What are your seizure triggers?

Alicia: Being tired or having a headache are my seizure triggers. They are my yellow lights before the red light switches on and I have a seizure. It will take me anywhere between three days and two weeks to fully recover after a seizure.

Maria: It can’t be easy for you but I know that you have the support of someone really special in your life.

Alicia: Yes! I have a son and I want to be there for him and so I work hard in being the best I can be. I make sure that I take my medications and lead a healthy life. I try not to burden my son with my epilepsy but at the same time I know that he is there for me.

Maria: Good people in our lives are really important and I know that your son is a one of those people.