Coping With Diagnosis

Home > E-QUIP: An Epilepsy Resource For Youth > Coping With Diagnosis

Firstly, if you have just been diagnosed with epilepsy, you might feel many things.

Some people feel vulnerable, confused, and worried about their health and the future. Others feel sad or disappointed. For some, the situation seems unfair, causing them to feel irritable or angry at themselves and those closest to them.

Everyone’s reaction is different, but they’re all completely normal.

There’s no time limit on 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 natural to feel sad or anxious from time to time.

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 then distract you from doing things that you enjoy doing including spending time with your friends and family.

Continuing to engage in activities that give you pleasure or 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, hobbies and goals.

Many people dealing with health conditions connect with others online so they can talk to people dealing with the similar things.

Epilepsy Action has two Facebook support groups that may help:

Oz Youth Beyond Epilepsy – Facebook Group

For teenagers and young adults aged 16-23 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

This group is designed to bring together an Australian community of people aged 24 and over who  have/had epilepsy or know someone with epilepsy. This is a place for you to share your own experiences, meet others with epilepsy and gain practical advice so you feel supported living with epilepsy.

You may also be interested in Young Epilepsy

Click the play button to hear Eddie’s experience.

1 3 001

“When I was sixteen, classes started going really fast. Not because the teachers were fascinating, but because I couldn’t seem to pay attention. I couldn’t make myself pay attention, the harder I tried, the worse it got. I would find myself at the front of the classroom and not know what I was doing there, somebody in the class would let me know that I was in the middle of a speech.”