Bruce Shiell, Wellbeing Worker at Epilepsy Scotland looks at how to deal with the impact a child’s epilepsy diagnosis can have on family life.
Depending on seizure control, a diagnosis of epilepsy can sometimes be life changing.
Hopes and aspirations for your child’s future may need to be adjusted, which can be difficult to accept.
Many parents talk about feeling as if their world had been turned upside down. It is normal to feel a complex set of emotions such as disbelief, sadness, anger or even guilt when your child is diagnosed with epilepsy.
Give yourself time to adjust, ask questions, and arm yourself with lots of information. Do not be afraid to get help for yourself from your own GP if you need it.
Your child’s epilepsy specialist nurse will also be able to provide support.
You can also call our freephone confidential helpline on 0808 800 2200 if you want to talk to someone about how you feel.
Dealing with other people’s reactions
Before you talk to other people about your child’s epilepsy, it is important you understand your own feelings.
Depending on who you talk to, only give them the information they need or you want to give.
Most people will want to be supportive. Some may, however be reluctant to talk about epilepsy because of their own personal experience or because of a perceived stigma still attached to the condition.
By talking to others in an open, honest and informative way, you are also helping to slowly change attitudes towards epilepsy.
Effect on siblings
Siblings may also feel confused, upset or angry. Especially, if a lot of their parents’ time and attention is initially taken up with going to medical appointments and looking after their brother or sister.
Make a point of spending time with each of your children on their own. This will give them an opportunity to talk about how they feel and ask questions they may be too frightened or embarrassed to ask in front of everyone else.
Children are very adaptable and can be a source of support as long as they feel they are part of the decisions that affect a family.
They will usually be keen to learn some basic first aid to be able to help their brother or sister.
Effect on your relationship with your partner
Looking after a child with epilepsy, particularly if the child also has other health conditions, can be time consuming, and physically and emotionally exhausting.
This kind of stress can sometimes impact on the relationship with a partner.
If you want to talk to someone in confidence for further help and support, contact Relationship Scotland on 0845 119 2020.
For more information and support, please read our impact on family life factsheet or call our freephone helpline on 0808 800 2200.