When you think about ‘isolation’, you might think of being physically alone. Isolation also means the feeling of being alone – even if you’re in a room full of people.
As a young person with epilepsy, isolation is a feeling you may know well. You may choose to be on your own, or you may feel that you are being left out. Either way, you probably feel like you’re the only one going through this.
But you’re not alone.
Sometimes isolation (being or feeling alone) is caused by being afraid of being embarrassed. Does the thought of having a seizure in in front of other people make you want to avoid parties, sporting events, or large gatherings? Or maybe you’re worried about your friends and family being stressed looking after you while you have a seizure?
Sometimes worrying about how other people will react to seeing you have a seizure can make people stay by themselves too. Isolation (being or feeling alone) can make everything else seem worse. And it can lead to a vicious cycle where being alone makes you feel worse, and feeling worse makes you stay alone more.
Young people with epilepsy can feel lonely because others might judge them or think that they can’t do certain things because of their epilepsy. You might feel left out because some people don’t understand epilepsy. But epilepsy is only one part of who you are, and it doesn’t have to stop you from doing great things.
Other young people with epilepsy describe the impact on their mental well being as:
It has made me very self-conscious about whether people may stare or say things if I have an episode. For that reason, I do not venture very far from home and spend a lot of time locked away in my bedroom.Young person living with epilepsy
Constant feeling of being left out. I’m not able to do what most people around me are able to do.Young person living with epilepsy
Young people with epilepsy, who responded to our survey, said their mental wellbeing has affected different areas of their social life, including:
77% of young people who responded said living with epilepsy has had an impact on time spent with friends
50% of young people who responded said living with epilepsy has had an impact on time spent with family
'I became very paranoid when someone would ask me if I was alright as I just didn’t want to feel like I was burdening someone else with my problems.'
'I didn’t go out much. I wanted to be like other kids - but I couldn’t be. I didn’t feel safe.'
Talk to others so you can share what you’ve been through and help them feel less alone too. Join the Youth Voice Network or come along to our Virtual Youth Clubs to meet young people who 'get it'.
Your epilepsy nurse may be able to help you find a local group who meet face to face or virtually (online), so you can feel more confident with young people like you who get it. There are also Facebook or Instagram groups for epilepsy where you can connect with other people going through the same thing. You can chat, share what you’ve been through, and you may even be able to link up with these people if they live near you.
It’s okay to talk about feeling sad, upset, or lonely. Sharing these feelings can help you to feel less alone.
Reach out to your friends and family, they love you and want the best for you. Spend some time with close family and friends, people you can open up to. And do things that will not be affected by your epilepsy, or with people that you feel comfortable around having a seizure.
Listen to some podcasts or YouTube videos of other people’s stories and experiences with seizures, such as The Sunflower Conversations. Some people find that hearing about what other people have been through helps them to feel less alone.
Whether it be getting involved in your community or joining an organisation online. Volunteering and giving something back is a great way to meet people, and to also feel better about yourself.
If you are feeling isolated (alone), please contact your GP.
If you are struggling with feeling isolated, remember, you are not alone.
Try downloading one of these apps that young people recommend:
TalkLife - Peer-to-peer app, which helps people connect with others, who are caring and ready to listen. This would be a great way to connect with others who have epilepsy going through the same thing.
Daylio - This online journal will help with motivation, creating goals, creating memories, building habits and sharing progress with friends.
If you would like to talk to someone, reach out to one of the organisations below. There are people ready and waiting to help you:
SHOUT - text PURPLE to 85258
Find further signposting and how you can receive support from Young Epilepsy
For anyone struggling with their mental health, we have partnered with SHOUT, a FREE 24/7 confidential text service.
To start a conversation Text PURPLE to 85258
Lots of people with epilepsy experience feelings of isolation. It can make you feel different from other people, and like you can’t do the things that you want to do. There’s also a lot of misunderstandings about epilepsy. But, epilepsy doesn’t have to limit you, and you are not alone. Other people are going through what you are feeling, and you can always reach out for support when you need it.
Make people around you aware of epilepsy: it's a weight off your chest and people can often misunderstand what it actually is.Young person living with epilepsy
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