A diagnosis and mood
Any diagnosis can be a shock, even if you are expecting it. You may feel numb, angry, confused or frightened. Or you may feel relieved – what’s been happening to you has a name and a treatment. Everyone has their own way of reacting to a new situation.
People can react differently to a diagnosis. You might feel lots of different emotions. It may not be possible to think and feel positively, or you may feel fine one minute, and upset or angry the next. It may be helpful to know that this is a common way to feel.
Recognising the impact
Strong feelings such as anger, fear or distress can sometimes be overwhelming. These are normal emotions and there may be good reasons for feeling the way you do. You may also feel a sense of loss - that epilepsy is taking something away from you. Recognising what the diagnosis means to you may help you feel more in control of your situation from the start. It may help to talk to someone or to write down how you feel. If you want someone to talk to, our Epilepsy Helpline is confidential.
Adjusting to change
A diagnosis of epilepsy can be hard to accept. Some people find it difficult to come to terms with their epilepsy, or feel worried, down, or anxious. It may change some things in your life but not necessarily for ever. Losing your driving licence and taking medication are two of the big issues you may be facing. It can take time to adjust. It may help to remind yourself that you are still the same person you were before the diagnosis and that support is available if you want it.
Looking for answers
Epilepsy can happen to anyone, at any age. Doctors may be able to find a cause, but this is not always possible. Our brains are incredibly complex and also changes take place in the brain throughout our lives. Current research is looking into why seizures happen to some people and not to others.
You may feel that coming to terms with your diagnosis is difficult right now. Or you might have your own ideas about what might help you feel better. There is no right or wrong answer. What do you think would make you feel better? Is there anything you can think of that you would like to do right now? Who could you talk to? What feels achievable?
Your neurologist, GP, or nurse may be able to tell you more about your epilepsy. You can also get information about epilepsy from us when you are ready for it. Our 'Just Diagnosed' leaflet is free to download from our website.
Dealing with other people
The way family or friends react to your diagnosis may be just what you need or you may find some reactions hurtful or unhelpful. People around you may also feel shocked, frightened, worried, angry, or helpless about your diagnosis. They may not know very much about epilepsy. They may also need time to adjust and work out how they feel. What you need from them may also change over time. Family and friends can support you best if you can tell them clearly what you find helpful. You may find it useful to share sections of this website with them.
Talk to someone
It can be hard to imagine yourself asking for help especially in the early days of a diagnosis. You can talk to your GP, specialist, or nurse about sources of support and there may be support groups near you. Or you may have a friend or family member that you can share your feelings with.
You (and your friends and family) can also talk to someone by calling our confidential helpline on 01494 601 400.
Information update: September 2022