1Your family can be a brilliant source of support
2Many young people with epilepsy feel their parents are over-protective
3Some parents struggle to adapt to their children growing into young adults
4Some parents worry more about epilepsy than their children do
Research shows that parents are significantly more risk averse when deciding things for their child than for themselves
- Your family will have worries 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.
Stories by you
Read about the support Adam got from his family
Read Brooke’s story about how epilepsy affected her relationship with family and friends
Tips for managing overprotective 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. They’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.
Say how you feel
For example: I feel like I’m not trusted
Describe the situation and try to avoid using the word “you”
For example: when I’m constantly asked if I’ve taken my tablets
Describe the worry or concern
For example: I think I’m old enough to not need reminding to take my tablets.
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.
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.
First aid videos on YouTube
You can show your family these videos on YouTube
Support for your family
Epilepsy can affect the whole family. If your family need support here are some things that may help:
- Your child and epilepsy is an online course for parents and carers of children with epilepsy. It’s aimed at parents of children and young people up to 18. It includes a section about growing up and independence
- The Epilepsy Action website has lots of information about all aspects of epilepsy
- forum4e is an online community of people with epilepsy and their carers
- The Epilepsy Action Helpline offers free confidential advice. The opening hours are on the website
– Freephone 0808 800 5050
– Email firstname.lastname@example.org
– Text 07479 638 071