Tiffany was diagnosed with epilepsy in 2008. She shares the challenges she has faced, why she decided to become an advocate for people living with epilepsy, and the importance of awareness days such as Purple Day.
How did you feel when you were first diagnosed and what type of seizures do you have?
It was a mix of emotions. I was scared, I was confused and I was frankly very upset.
I have tonic-clonic seizures and I have focal seizures and they affect me in such a way that I am not able to do the simplest of tasks sometimes. Such as driving, sometimes I can’t do dishes or laundry.
Sometimes I just have my bad days where I have to take a break.
What challenges have you faced since being diagnosed with epilepsy?
Some types of challenges that I have faced are basically my mental health issues and that is really navigating emotions, as some days I will feel a little sad or anxious and I really have to check in with myself to make sure I am well and that I am happy and healthy mentally.
I focus on what I am grateful for and I spend time with my loved ones and my close friends. Especially my husband who has been so loving and caring and supportive.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Yes definitely. It’s more than seizures. It really impacts the person beyond physically. It impacts the person mentally and emotionally as well.
I have received so much support from family, close friends, and the epilepsy community. Even the entire chronic illness community.
I am always learning every day. I have lived with epilepsy for almost 15 years and I am always learning something new.
We teach one another, encourage one another and inspire one another and help us to learn ways to navigate this condition.
Do you feel there is a stigma surrounding epilepsy?
There has been a stigma attached to epilepsy for many decades and we still trying to destigmatise this condition.
Right now, there are people who believe that we can’t live a happy, healthy, and fulfilling life.
Talking about it. Sharing facts and destigmatising by helping people feel comfortable in sharing their story.
Why did you decide to become an advocate for people living with epilepsy? Do you feel this has helped you with your own epilepsy?
Following my diagnosis, I felt alone and scared and it wasn’t until I really connected with the online community, people that were impacted by the condition, that it really gave me the confidence and inspiration to want to tell my story and help others to understand the condition.
How important do you think awareness days like Purple Day are?
I think it is essential because it’s an opportunity to raise awareness and to destigmatise the condition and to eliminate fear and support those impacted by the condition.
What would you say to others who have been recently diagnosed with epilepsy?
Living with epilepsy isn’t easy. But we have an option, we can make it easier on ourselves or we can make it harder.
We need to look at the silver linings within the storm is what I like to say.
There are so many things that are positive, even though we might think the whole condition and the whole situation are negative.
Although we have challenges that we are facing, we have the ability to overcome them.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.