Purple Day - Olivia's story

For this year’s #PurpleDay2021 we caught up with Olivia, a patient at Bristol Royal Hospital for Children, who has shared her experience of living with epilepsy.

“Hi! I’m Olivia and I’m a 16-year-old girl who has epilepsy. I suffer from tonic-clonic, absence and focal onset seizures and was diagnosed when I was 5-years-old.”

“When I was younger I was proud of my epilepsy, it was a big part of me and I embraced it. When I started secondary school that pride disappeared, I couldn’t find it anywhere, and I would bully myself for how much I ‘stood out'. It took me about 5 years of sadness and hardships to notice that I don’t stand out, I deserve to be in the position I am in now. 

I may take more medicines than my friends, visit the hospital more than others, but I’m ok with that. I mean, hey, it’s a good excuse to get out of homework aha!

I’ve received some really hurtful comments about my epilepsy. I was always treated differently and I do wonder, if I wasn’t treated like that or spoke to like that, would I have gone through that period of agony? Even though those were dark times, I’m happy they happened, because I don’t think I would have found the confidence or the love I have for myself now. Life may be dark, and people can be mean but you will come out stronger, and people will admire you. Be yourself and have no shame, because your world will be more blissful than theirs, regardless of how many seizures you have.

The team at Bristol Royal Hospital for Children has been amazing. My VNS [vagus nerve stimulation] surgery with Mr Carter in March 2017 was a success and Vicki, who I see every 3 months, is just brilliant. The VNS implant completely changed my life, I’m not in ambulances or hospital as much and I’m having less tonic-clonic seizures! I loved going to the children’s hospital when we went in, as the staff are absolutely lovely.

I think it is important that Purple Day is celebrated and should be publicised more, due to the large number of people who are affected by epilepsy. Unfortunately, I didn’t celebrate it for a long time because of my denial and embarrassment. It feels very stigmatised to talk about epilepsy or seizures and you can feel very alone.

To this day, I have not met anyone who is the same age as me and has epilepsy. I want us to work together and break down these walls of stigma and silent suffering and reach out to those who need help and reassurance that they aren’t alone!

I have just started taking another drug to help control my focal onset seizures and it’s not always fun but hakuna matata!”

Thank you to Olivia, for sharing her story with us to help raise awareness and increase understanding of epilepsy. Check out the Bristol Royal Hospital for Children’s Facebook page where you can read other patient stories and find out more about our specialist epilepsy teams.

Find out more about Purple Day.

 

#EpilepsyAwareness #PurpleDay #PatientStory