Many young people with epilepsy also experience anxiety. When you are friends with someone with epilepsy and anxiety, you may not know what you can say to help. If you are wondering what to say to a friend with epilepsy and anxiety, you are not alone.
You know your friend doesn’t deserve to feel this way, but sensitive subjects can be difficult to talk about. You don’t want to say the wrong thing that could make them feel worse.
The fact that you care is a great start. Just being there and listening are the two most important ways to support a friend with epilepsy and anxiety.
Saying the right things – and avoiding the wrong ones – can go even further.
How epilepsy and anxiety can affect you friend’s everyday life
Epilepsy is a condition where a person has seizures due to abnormal electrical activity in the brain. There are many different kinds of seizures and everybody’s epilepsy is different. Understanding how epilepsy and anxiety can affect your friend can help you support them in a way that feels kind and safe.
No matter the type, seizures can cause anxiety for many reasons. Having seizures in public can be embarrassing, not knowing when your next seizure will come can be frightening, and seizures in general are dangerous.
“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
On top of that, you may also have side-effects of medication or surgery, tiredness from lack of sleep, and problems with memory and brain-fog. You may be anxious about how your epilepsy affects your family or about stigma from others.
Anxiety is more than just worrying too much. It is a serious mental health condition where you regularly feel panicked or an extreme fear of losing control.
While not everyone with epilepsy has anxiety, those that do deserve support and understanding from their friends.
What to say to a friend with epilepsy and anxiety
When you know your friend has epilepsy and anxiety, you should keep an open mind and not presume you know about what they are going through. If you are nervous about talking to a friend with epilepsy, start small and let them set the pace.
You should:
- Let them lead the conversation: Even if you have researched epilepsy and anxiety to help your friend, listen to their experience to know how they want to be supported. Don’t push them if they don’t want to talk about their conditions, just say “I’m always here if you want to talk.”
- Ask what you can do: Questions like “Are there any triggers I should avoid?” or “What do you want me to do if you are having a seizure?” show you care and will help your friend feel safer. This can be one of the most practical ways of supporting a friend with epilepsy day to day.
- Reassure them: Let your friend know that you understand that they cannot help having epilepsy and anxiety and that you are there to listen and support them however they need it. Saying what you appreciate about them can also help them see more to themselves than their condition.
- Use their language: If you are unsure what words to use when talking about epilepsy and anxiety, listen closely to your friend when they are talking about it. For example, if they only describe themselves as having a ‘seizure’, they may dislike the terms ‘fit’ or ‘episode’, so follow their lead.
“When I have spoken to someone if I am feeling anxious, it definitely feels like a weight has been lifted off you”
-Youth Voice Network member
Sometimes, you may not know what to say, and that’s OK too. Respecting boundaries, checking in, planning inclusive events and showing patience if plans change are all great ways to show support without worrying about your word choices.
What not to say to a friend with epilepsy and anxiety
We can all say the wrong thing. Sometimes a comment may not bother one person but could upset another, and sometimes you can say the right thing, but at the wrong time.
If your intentions are good, you shouldn’t be afraid of slipping up. However, there are certain mistakes it’s easy to avoid.
If you are unsure what not to say to a friend with epilepsy and anxiety, these are common comments to avoid:
- Dismiss their feelings: Saying phrases like “You’ll feel better” or “You worry too much” can make anxieties worse. Epilepsy can also affect day-to-day life in many ways, so shouldn’t be played down.
- Make a big deal of it: Questions like “Are you sure you can do that with your epilepsy/anxiety?” and comments about how difficult their situation might be can make your friends feel put down, left out, and misunderstood.
- Compare them to others: Knowing other people with epilepsy and/or anxiety doesn’t mean that your friend experiences the same. Everyone's epilepsy and anxiety are different.
- Make assumptions: Common examples around epilepsy are that flashing lights trigger all seizures and that all seizures look the same. These comments can make your friend feel like you aren’t interested in their experience.
- Make jokes about epilepsy and anxiety: Some people who have epilepsy and anxiety may use humour to lighten their mood or to make people around them more comfortable. However, you can’t know what jokes may be insulting or poorly timed unless you are in their shoes, so it’s best to avoid.
- Use inappropriate language: There are obvious terms that are offensive about those living with mental health conditions and disabilities, but certain people may not appreciate other words. Even common terms like ‘illness’ and ‘disability’ can make feel uncomfortable to some. Follow your friend’s lead when they speak about epilepsy and anxiety and ask questions if you are unsure.
What to do if you mess up or say the wrong thing to a friend with epilepsy
If you say the wrong thing to someone with epilepsy and anxiety:
- Apologise simply: There is no need to make a huge deal out of an honest mistake, and doing so can make something small into something a lot bigger.
- Acknowledge what you have learned: Learning is part of being a good friend. Acknowledging the mistake and saying you’ll do better in the future shows your friend you want to support them.
- Move on: Bringing up an incident again and again can trigger your friend to feel upset about it multiple times. It’s always better to show that you have learned from your mistakes than to keep saying what you’ve learned.
Why words matter when supporting a friend with epilepsy and anxiety
There is no perfect script for talking to a friend with epilepsy and anxiety. By listening, asking how they want to be supported, and respecting their boundaries, however, you can make a space for your friend feels safe, valued and able to build their confidence. Knowing what to say to a friend with epilepsy can make a real difference to how supported they feel.
