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epilepsy diagnosis and its impact on 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.

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 an anonymous person to talk to, our Epilepsy Helpline is confidential.

Dr Cherilyn McKay, a specialist clinical psychologist, was a guest speaker at our 2014 annual conference. Watch the presentation below of Dr McKay discussing epilepsy, anxiety and depression:

Epilepsy, anxiety and depression

Specialist clinical psychologist Dr Cherilyn McKay discusses epilepsy, anxiety and depression at Epilepsy Society’s annual conference 2014.

Adjusting to change

diagnosis of epilepsy can be hard to accept. 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.

Being diagnosed with epilepsy was the best thing that has happened to me in the last five years. I now feel “normal”. My first two months I was in denial, but once I accepted it I felt a sense of relief. My family also said I was the person they used to know.

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 changes take place in the brain throughout our lives. Research looks into why seizures happen to some people and not to others.

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’ pack is free – you can order it through our online shop.

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. There are many sources of support and care you can turn to. Getting treatment can make a big difference.

You (and your friends and family) can also talk to someone by calling our confidential helpline 

Taken from our booklet ‘The Bigger Picture – epilepsy and mood’ which was commended in the BMA Patient Information Awards 2010. The Bigger Picture booklet uses comics to show how people may feel about and deal with their epilepsy.

Order your free copy of The Bigger Picture from our online shop as part of our ‘first five free’ offer or by calling the Helpline on 01494 601 400.

A free, easy-read booklet is also available, called Epilepsy – how I feel.

Epilepsy Society is grateful to the many people with epilepsy who helped produce this information by generously sharing their experiences.