Hamsia’s story

Hamsia is 33 and was diagnosed with epilepsy as a teen. She is from a Somali background with no family history of epilepsy. Hamsia was in denial after her diagnosis and felt too distressed to talk about how she felt with her family. But today she has come to terms with her condition and is “happy in her own skin”. She has spoken out on national radio about living with epilepsy.

You can hear Hamsia talking about her epilepsy on BBC Radio 4’s Listening Project, presented by Fi Glover. Hamsia is in conversation with Alex who also has epilepsy.

Visit bbc.co.uk/sounds and scroll to 11:30 to listen in.

Here is a taste of what Hamsia has to say:

“I have never felt so comfortable to talk about my epilepsy as I do today.

I was diagnosed as a teenager, just as I was about to go off and do exciting things, travel the world, and go to uni. I had a seizure, I thought it was a one off at first, but then I had more! It was the most awful experience.

It is important that people are comfortable talking about it and find their ground. There is power in self-acceptance!

Somali background

Coming from a Somali background I was a little scared about how epilepsy will be perceived in my community. My family and I didn’t know much about it, feared the condition and were in denial about it therefore just didn’t speak about it. 

They naturally, became very overprotective and no longer wanted me to do things on my own. If I was going out with a friend’s or to the cinema, they always insisted on dropping me there, I felt like I was losing my independence. I felt like my life was pretty much over because I had always been a free bird and very independent. At the time, I was looking forward to leaving school, travelling, going to university, experiencing different cultures etc… 

My family advised that I didn’t travel and as they were concerned about my safety, this made me feel a little trapped and I could not live a normal life which was a struggle. 

Ignoring epilepsy

One of the main triggers for my seizures was stress. The more stressed I got, the more likely I was to have a seizure. I was quite closed about my feelings and my family did not want to cause me distress, so we thought it was best just to ignore it all. 

The more we ignored it, the worse it got. I wish there had been some guidance from GPs and neurologists but that was not offered at the time. There needs to be more wellbeing support available for young people with epilepsy.

My seizures are better controlled now. I have come to terms with my epilepsy and feel more comfortable in my own skin. I accept me for who I am. My family is different now, too. They say “if we could do it all again, we would do things differently.”

Children’s book about epilepsy

Hamsia has written a book about epilepsy for children which aims to help young children to embrace their differences and overcome the fear of talking about living with epilepsy.