Epilepsy Action is the UK’s leading organisation that aims to improve the lives of everyone affected by epilepsy. They are a member-led association, led by and represent people with the condition, their friends and families and healthcare professionals.
Recently, the charity surveyed 700 people with epilepsy to ask how it feels talking to others about the condition, and these are the results:
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One in five people with epilepsy said they feel uncomfortable or very uncomfortable talking about their epilepsy with friends
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One in seven feel uncomfortable or very uncomfortable talking about their epilepsy even with their family
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One in four feel uncomfortable talking to work colleagues
The top three reasons people gave for feeling uncomfortable talking about their condition were:
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Fear of discrimination (or being treated differently)
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Concerns that people don’t understand epilepsy
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Feeling embarrassed
Vicky Smith’s story
Growing up, Vicky enjoyed the same activities most young people enjoy with their friends – drinking, travelling and partying all night. However, she kept the fact she had epilepsy a secret from many of her friends, until now.
33 year old Vicky is now lucky enough to be free from her medication, but as a teenager life looked very dark and lonely for her.
Afraid of people judging her, Vicky kept her condition quiet from loved ones. But now Vicky feels it’s time to open up about her epilepsy and raise awareness about this “complex” and “frustrating” condition – which is still often considered a taboo subject in society.
“I have always chosen to keep my condition quiet – mainly out of fear and embarrassment,” Vicky explained.
“I am very lucky to be able to have this choice due to having my condition under control, whereas a large proportion of sufferers have to deal with far more unpredictable forms of epilepsy which can restrict their everyday lives both physically and mentally.”
Low self-esteem, social isolation, learning difficulties, limited employment options, memory loss and side effects from daily medications are all factors which people with epilepsy have to deal with regularly.
As well as opening up about her epilepsy, Vicky will also be running the London Marathon this year for Epilepsy Action, to help offer vital support and advice to people with the condition, and their families.
She said: “I hope to raise greater awareness about the condition and to show young people in particular that they do not need to fear being different.
“That even though what they are going through is hard, scary and lonely at times, they can take control of their life and not put limitations on themselves.
“I realise now in my ageing wisdom that we need more people to ‘come out’ and raise awareness that many, many ‘normal’ people have to deal with this and that we’re not odd or rare!”
It’s hard to believe but yet totally understandable as to why she has found it so difficult to open up to others about her epilepsy.
If you want to donate to Vicky's fundraising page, click here.
For more information visit Epilepsy Action or call their freephone helpline on 0808 800 5050.
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