What is Isolation?

“Make people around you aware of epilepsy: it’s a weight off your chest and people can often misunderstand what it actually is.”

You are never alone

Other young people with epilepsy describe the impact on their mental wellbeing as:

“[I’m] living in constant anxiety and feeling incredibly isolated which in turn leads to long periods of depression.”

“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.”

“Constant feeling of being left out. I’m not able to do what most people around me are able to do.”

“I feel extremely anxious and isolated and different from my friends.”

Did you know:

  • Young people with epilepsy said their mental wellbeing has affected different areas of their social life, including:
    • Time with their friends (77%)
    • Time with family (50%)

What can I do if I feel isolated?

Chat to others via The Channel and The Hub to share your experiences and support others to overcome their isolation challenges.

Your epilepsy nurse may be able to point you in the direction of a local group who meet face to face or virtually, so you can build your confidence socially with like-minded people who understand. There are also Facebook/ Instagram groups for epilepsy where you can connect with other people going through the same thing. Conversations can be started, experiences shared, and you may even be able to link up with these people if they are local.

Take every opportunity to express any negative emotions – this will help you reduce the feelings of isolation.

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 activities that will not be effected 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, it will help you to feel less alone. 

Here are some we recommend: 

Seize Your Adventure Podcast

The Sunflower Conversations 

 

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 improve your self worth. 

'I felt like I wasn’t myself anymore. Having a physical disability is hard enough, but then adding another thing into my life. Wow. That took some getting used to.'

Read about Lauren's experience of feeling isolated...

So, what is isolation?

Living through a pandemic, isolation has become part of daily life. It’s a word we’ve heard over and over in the past 18+ months, and may associate with being physically alone. But you can feel isolated in a room full of people. As a young person with epilepsy, isolation is a feeling you may know well. You may choose to isolate and not socialise – or you may feel that isolation has been forced upon you. Either way, you probably feel like you’re the only one going through this. Are we right? But you’re not alone.

 

How does it affect people with epilepsy?

Sometimes isolation is triggered by a fear of potential embarrassment. Does the thought of having a seizure in public or a social setting make you want to avoid parties, theatre trips, sporting events and large gatherings? Or maybe you’re worried about your friends and family being stressed looking after you while you have a seizure? Sometimes the guilt and fear of what others will experience witnessing your seizure can prompt isolation too. Isolation can be just as hard to deal with as seizures themselves.

Social isolation is often caused by stigma, or someone else’s prejudice and perceptions of what you can and can’t do when you have epilepsy. You may feel left out or excluded from social activities simply because others don’t understand epilepsy. But we can change that, by educating others. You know that epilepsy doesn’t define you and it shouldn’t limit your opportunities.

Where can I access support?

If you feel you are experiencing severe isolation, please contact your GP. 

Find urgent help and support here.

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 enables people to connect with others, who are supportive 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, build habits and sharing progress with friends.

If you feel like you would like to talk to someone, you can contact us or reach out to one of the organisations below. There are people ready and waiting to support you:

Throughout our #OnTopOfEpilepsy campaign, our supporters shared messages of support to children and young people with epilepsy who may be struggling.

'I was diagnosed with epilepsy when I was 12. I'm now 49. It was hard to deal with at first, and I felt very alone and different. It helped to talk about my feelings. I've travelled by myself, and now run my own business. Life gets better!'
'To all of you that have epilepsy. In my eyes you are the very best! … if you’re ever feeling a little under the weather, just remember you are loved so much and cared about!'
'Just to let you know I’m thinking about you guys who are struggling out there. Don’t be sad or feel down because everyone is here to help you. You’re not alone.'