Family and Friends

Research shows that parents are significantly more risk averse when deciding things for their child than for themselves

Top tips

• Your family will worry about epilepsy. Recognising this can help you to reassure them
• Your family need to know about your epilepsy so they can support you and help you be safe. If your wider family need to know seizure first aid, there’s some resources below that may help
• If your family are concerned about the safety of an activity, talk together about what can be done to make it safer. There’s a checklist on the safety page 
• Keep your phone charged, switched on and with you. Your family may feel happier about you being out and about if you keep in contact with them
• Consider carrying something that says you have epilepsy, like a card or medical ID jewellery
• If your friends are good at supporting you, get them to talk to your parents. They may also be able to offer them reassurance that they’re looking out for you and will help keep you safe
• The more you share, the less they’ll need to ask

Brothers and sisters

If you have brothers and sisters you might get more attention than them because of having epilepsy. This may affect your relationship with them. Siblings without epilepsy can feel left out and in some families this causes tension.

As you grow up your relationship with your siblings will naturally change. You might find they are living separately from you for the first time. If you have younger siblings they might be scared of seeing you have seizures.

To help your siblings understand epilepsy, you could show them this website.

If you have younger brother or sisters, we have information for brothers and information for sisters to help them understand epilepsy.

Tips for managing protective parents

• Pick a time to talk when they’re not distracted such as getting ready to go out to work or cooking the dinner
• Communicate with ‘I’ statements (See below about a way to do this). Focus on how you feel rather than what your parents are doing or saying
• Try to understand your parents perspective. They’re probably not being overprotective just to spoil your fun. They love you and want to keep you safe
• Ask for help or advice sometimes – It makes your parents feel needed and even though you’re growing up, they can still do things to help you
• Be patient – Your parents may take time to adjust to you growing up
• Show your parents they can trust you to be responsible and they don’t have to worry so much. The’re lots of ways you can do this: do your homework without being told to, offer to do the washing up, be back at the time you said you would be
• If you live away from home, tell your parents how well you’re looking after yourself. For example, what meals you’ve cooked this week, you picked up your prescription in good time, you went to your lectures on time. This shows them you are looking after yourself and they might not ask you about these things so much

Planning a conversation

If you want to talk to your family about any concerns this is a good way to structure a conversation.

I feel…

Say how you feel

For example: I feel like I’m not trusted

When…

Describe the situation and try to avoid using the word “you”

For example: when I’m constantly asked if I’ve taken my tablets

Because…

Describe the worry or concern

For example: I think I’m old enough to not need reminding to take my tablets.

Acknowledge…

Acknowledge the other persons feelings

For example: I know you do it because you’re worried that if I miss taking them I’ll have a seizure

What I’d like is…

Offer an alternative that meets your needs

For example: I have a pill box and a reminder on my phone. I think these things show I can take responsibility for taking my tablets.

Do something

Take a moment to imagine that you are your parents. What concerns might they have about your safety and wellbeing? Is there anything you could do to help reduce their concerns?

Seizure first aid resources

Your family can help you by knowing what to do if you have a seizure. Here’s some suggestions of first aid resources.

• What to do when someone has a seizure –  A free short online course that shows first aid for all seizure types
• Show them the first aid page 

Top tips

• Make sure your friends know how to recognise a seizure and what to do.
• Tell your friends what help or support you need
• Make sure your friends have your family’s contact details and in what circumstances you’d want them to contact your family
• Put your emergency contact details in your phone. Some phones allow people to dial emergency contacts while the phone is still locked
• Try not to be pressured into doing things that you know make it more difficult to manage your epilepsy. If staying out late or drinking alcohol makes your epilepsy worse, don’t be pressured into doing it. Real friends will understand
• Sometimes relationships we think of as friendships can actually be bad for our mental health and wellbeing. If you feel that one of your friends isn’t really a true friend, don’t be afraid to break it off
• Friendships are two-way – if your friends help you with your epilepsy, how can you help them?

Making friends

Some people with epilepsy can feel isolated and find it difficult to make friends. Here’s some ideas others have found helpful for making new friends:

• Join a group about something you enjoy. Common interests can bring people together
• Start a conversation at school, college or work. If you see someone sitting on their own at lunchtime, why not go and sit with them and start a conversation
• Give a compliment. Saying something nice can be a good way to get a conversation going
• Be a good listener and ask questions. It shows you’re interested in the other person and can kick-start friendships
• Volunteering is a good way to meet people. There are volunteering organisations such as Do-it. Many colleges, universities and larger employers have volunteering opportunities. You can also join our team of volunteers and make a real difference to people living with epilepsy.