Mental health wellbeing space

So what is Isolation?

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.

Young people with epilepsy told us

Young people with epilepsy, who responded to our survey, said their mental wellbeing has affected different areas of their social life, including:

  • 77%

    Time spent with friends

    77% of young people who responded said living with epilepsy has had an impact on time spent with friends

  • 50%

    Time spent with family

    50% said it had impact time spent with family

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.”

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.

Lauren, one of our Young Reps, talks about her feelings of isolation.

Are you struggling to cope?

Shout is a free, confidential and 24/7 text support service for anyone in the UK

To start a conversation, text PURPLE to 85258

Shout’s trained volunteers are available around the clock to listen and support anyone who is suicidal, depressed, anxious or overwhelmed. The service is anonymous and does not show up on phone bills.

find out more about our partnership with Shout.

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.

Where can I access support?

If you feel you are experiencing 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:

Our supporters shared messages of support to children and young people with epilepsy who may be struggling.

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

Mental health wellbeing space

Explore other emotions

Mental health wellbeing space


Overwhelmed is an emotion that can cause physical strain during difficult times. It can make you feel like there’s not enough hours in the day, like you have too much to cope with.

Mental health wellbeing space


Self-worth is how you value yourself. It’s also easily bruised, because it can be the hardest thing to protect.

Mental health wellbeing space


Anxiety is common emotion that many people experience, from mild to more severe forms. And it’s ok to feel anxious, especially during times of stress.

Mental health wellbeing space


Depression effects on average 1 in 6 people in the UK. If you have epilepsy this is 1 in 3. Everyone feels sad from time to time, but a constant low mood shouldn’t be ignored.