Coming to Terms with a Diagnosis

Diagnosis. It’s a big thing! And like any major life change, it can take a bit of getting used to. Most people have all kinds of questions and worries when they’re first diagnosed with epilepsy. But even if it doesn’t feel like it right now, epilepsy is something you can live with. There’s support out there to help you. Although it can be a scary time, you’re not alone.

How should I feel now that I have epilepsy?

However you’re feeling – that’s OK. There’s no ‘should’ when feelings are concerned. People diagnosed with epilepsy can experience a range of emotions, often all at once! Some people feel bleak, like it’s the end of the world. Or angry that it’s happened to them. Others might feel relieved – there’s a name for what they’ve been going through. Whatever you’re feeling, it’s completely valid, and understandable.

Common feelings:

  • “Why me?”
  • Grief for your old life before epilepsy
  • Worry about the future
  • Anxiousness about having a seizure
  • Loneliness, feeling like the only one affected
  • Guilt – did I do something wrong to cause this?

Processing your feelings about your epilepsy diagnosis can take time. Your friends and family may also be affected by the news, and they’ll have feelings of their own. Reaching out to them can help you to cope.

What can I do to come to terms with my new diagnosis?

You’ll get there. Here are some things that can help:

  • Look after yourself. Simple things like making sure you eat well, exercise and get enough sleep can make a big difference to your mood. (They can also help prevent seizures).
  • Talk about it. Don’t bottle it up. Let your friends and family know how you feel.
  • Process your emotions. Notice your negative thoughts and keep a mood diary. Try making a list of the positive things in your life.
  • Get to know your triggers. Some people have seizures when they’re really tired, or after drinking alcohol. Keep a seizure diary to spot any patterns. It could put you back in control and help you manage your epilepsy.
  • Do fun stuff. You have a long-term condition, but it doesn’t have to stop you living your life. Get back to your favourite activities , if you can do them safely. Try new things and enjoy being with your friends.
  • Take time out. Relaxation and rest is important for everyone. But it’s essential if you have epilepsy. Meditation, mindfulness and yoga can all help. Or chilling out in a hot bubbly bath. Whatever works for you!
  • Arm yourself with facts. There’s a reason why they say “Knowledge is power”! Understanding epilepsy can empower you to live with your condition. Find out how to stay safe and keep living your life.
  • Reach out for support. We’ve said it before, and we’ll say it again. You’re not alone in this! There are loads of people in the same boat. And there are plenty of places where you can find support.
What support is available to me?

Support comes from lots of different sources.

First there’s your healthcare team. They’ll make sure you’re OK physically and mentally, and they’re the best place to get answers about your epilepsy. Get in touch whenever you need to.

Ever feel like nobody understands? Reaching out to other young people with epilepsy could really help. The Hub is an online community for young people with epilepsy.  Hospital support groups are another great way to connect with people in your shoes.

Want to know more about your condition? Charities like Young Epilepsy and websites like The Channel are a great place to find the facts you need. You (or your parents) can chat to the Young Epilepsy helpline if you need someone to talk to.

Here are some useful links:

Remember, you’ve got this. And if you are ever feeling wobbly or worried, there’s help out there to support you.

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