If you’ve just been told you have epilepsy, it’s completely normal to feel a mix of emotions.
Some people feel vulnerable, confused, and worried about their health and the future. Others feel sad, frustrated, or even angry – at themselves, at the situation, or at the people around them.
Everyone’s reaction is different, but every reaction is valid.
There’s no timeline for adjusting to having epilepsy. In fact, most people will find that emotions surface sometimes, depending on what’s happening in their life, especially when experiencing any setbacks or having a bad day. Even if your seizures are controlled, it’s still normal to feel stressed, anxious, or low sometimes.
Recognising these emotions as they surface can help you manage these feelings. Getting upset or sad about having epilepsy can sometimes make you feel worse as you may find that you put more energy into struggling with these feelings. This can distract you from doing things that you enjoy such as hobbies or spending time with your friends and family.
Keep doing things that give you joy, meaning or sense of purpose
Although you have epilepsy, this should not define who you are and what goals you would like to achieve. Everyone has interests, goals and dreams – and they still matter.
Lots of young people with health conditions find it helpful to connect with others online so they can talk to people dealing with the similar things. It can make you feel less alone and more understood.
Epilepsy Action has two Facebook support groups that may help:
Oz Youth Beyond Epilepsy – Facebook Group
For teenagers and young adults aged 16-24 living with epilepsy. A safe, inclusive space where you can engage with people who share your experience. Be kind, stay safe and support each other. This is a fun and safe space where you can be comfortable to ask anything.
Epilepsy Action & Friends Online Support Group
You may also be interested in Young Epilepsy
Click the play button to hear Eddie’s experience.
