Are you struggling with anxiety?
Epilepsy and anxiety often go together. This section of the Mental health and Wellbeing Space will help you understand why and give you some tips to help you.
Anxiety is when your body reacts as if it's in danger. You can get anxiety even when you feel safe. You might feel butterflies in your tummy or feel scared when nothing bad is happening.
Anxiety is a common feeling that most people will have at some point in their lives.
Seizures and anxiety often come together.
The fear of having a seizure, and of not knowing where or when it could happen can make you feel anxious. Being diagnosed with epilepsy can also cause anxiety, as can feeling left out from doing the things you enjoy because of your epilepsy. Anxiety can also be a side effect of some epilepsy medications. So, it’s no wonder that lots of people with epilepsy have anxiety.
Anxiety is a normal feeling that everyone gets sometimes, so be kind to yourself and remember you’re not alone. Around 1 in 3 people who don’t have epilepsy have high levels of anxiety.
Some symptoms of anxiety and panic attacks are similar to some types of seizures, which can make it confusing and worrying8. Knowing the symptoms of anxiety can help to reduce the effect of anxiety and reduce stress.
Signs that affect your body include:
Signs that affect your feelings and thoughts include:
Some people who have anxiety might also have panic attacks. A panic attack is intense and overwhelming anxiety.
Someone having a panic attack might feel intense anxiety, like something bad is about to happen. Someone who is having a panic attack might start shaking, sweating, have a racing heartbeat, feel unable to breathe or start breathing too fast, and feel sick. Panic attacks can be very frightening, and they can come on suddenly without any warning.
Everyone has mild anxiety sometimes, for example before an exam. In situations like this, anxiety is not a negative thing! Feeling nervous can motivate us to do well.
Anxiety also tells us about what is important to us. For example, if you feel anxious about having a difficult conversation with a friend, this is because the friendship is important to you. So, anxiety is not always a bad thing.
Anxiety can be a problem when it is has an impact on your mental health and wellbeing. More severe anxiety is intense, long-lasting, and might stop us from doing the things that we want to do.
Severe anxiety might look like constant worry, nervousness, or feeling on edge. It could be feelings of unease, panic, or a fear of losing control. Anxiety can also affect the body, for example a racing heart, shaking, feeling like it’s difficult to breathe, or sweating. Some people might experience anxious thoughts, like fixating on what might happen in the future, or what has happened in the past.
Anxiety affects everyone differently, so it’s important to understand what anxiety looks like for you, and what you can do to help you feel better.
Other young people with epilepsy describe the impact on their mental well being as:
I’m constantly anxious about when and how bad my next seizure will be.Young person with epilepsy
I was scared to go out by myself for a good year and a half… my epilepsy has caused so much anxiety.Young person with epilepsy
Young people with epilepsy who responded to our survey told us
99% of young people, who responded to our survey, told us living with epilepsy has had an impact on their mental health
66% of young people, who responded to our survey, told us living with epilepsy has had an impact on their physical health
I was diagnosed with absence epilepsy at eleven years old. Since then I have been on a journey with my anxiety.
There are lots of things you can try to manage anxiety. Different things work for different people, so it’s a good idea to try different things and see what works best for you.
Focus on your senses: 5 things you can see, 4 things you can hear, 3 things you can touch, 2 things you can smell, 1 thing you can taste.
The 10 second rule: Focus on getting through the next 10 seconds and breaking each hour into manageable chunks of time. If you start to feel anxious, give yourself 10 seconds to breathe before you do anything. Don’t worry about getting through the week, or the day, or even the next task. When things are difficult, just focus on getting through the next 10 seconds.
Practice square breathing: Breathe in for 4 seconds, hold for 4, out for 4, hold for 4 and repeat.
Have you heard of CBT (Cognitive Behaviour Therapy)? If you are struggling with severe anxiety, visit your GP and they may refer you for Cognitive Behaviour Therapy.
Practice mindfulness when you’re brushing your teeth, eating a meal, walking outside. Notice what you can see, hear, touch, taste, or smell in the moment. Using your senses in this way can help you to feel calm and grounded.
A guided meditation is a calm time where someone talks you through how to relax. Guided Meditations to support with breath work are available for free on Youtube.
There are lots of apps with free resources you can use at any time when you are feeling anxious.
Telling your friends and family when you are feeling anxious can help you to manage worries and feel less alone.
Some people find it helpful to write down their anxious thoughts, to get them out of their head and onto paper.
Some people understand things better by looking at them, rather than talking. So colouring or making art can help them to express their feelings and to feel calm. Some people find mindful colouring helpful.
Have you heard of CBT (Cognitive Behaviour Therapy)? Cognitive Behaviour Therapy, or CBT, is a way of helping people feel better by teaching them how to change unhelpful thoughts into more helpful ones. It also helps them learn new ways to handle tough feelings and situations.
If you are struggling with severe anxiety, visit your GP and they may refer you for Cognitive Behaviour Therapy.
You can also learn some CBT skills to help yourself online: Online self-help CBT techniques - Every Mind Matters - NHS
If you have anxiety, please contact your GP.
If you are struggling with anxiety, remember, you are not alone.
Try downloading one of these apps that young people recommend:
WorryTree - Helps you record, manage and problem solve your worries and anxiety based on CBT techniques. Built by worriers, for worriers. 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:
SANEline (for age 16 and over)
SHOUT - text PURPLE to 85258
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
Anxiety is normal and most people will feel anxious at some point. Anxiety and epilepsy can happen at the same time, so it’s important to understand how anxiety shows up for you. There are lots of things you can do to manage anxiety, and you don’t have to face it alone.
Explain to your friends how you are feeling and why. I think you will be surprised how understanding and supportive people can be . xxThroughout our #OnTopOfEpilepsy campaign, supporters shared messages of support
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