Epilepsy

Epilepsy - messages to others

Many people we interviewed gave messages of support and advice to people who were newly diagnosed with epilepsy. They often advised staying calm and not being afraid. Some also recommended asking questions and getting explanations from doctors, getting referred to a neurologist, and accepting support from others.

Recommends asking questions and getting explanations from doctors.

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Age at interview: 49

Sex: Female

Age at diagnosis: 14

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Well I think if you've just been diagnosed, depending upon your age of course, you might be a youngster but if you were someone who's around 15 years old , as I was, it's something you mustn't feel frightened of. And you certainly mustn't feel you're second best because you're not. We're all equal, it doesn't matter what disability you have, but I think what you should do is you should speak more on an even with the GP or with your doctor and you should say to him "Well explain that to me because I don't understand it. And why are you saying to me to take this tablet, you know I don't understand, and why are you saying to me to have this MRI, what will that explain to you?" And I think that they should try to be a little more open than I was because it helps them in the long run.

Advises getting referred to a neurologist and accepting support from others.

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Age at interview: 48

Sex: Female

Age at diagnosis: 10

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Well I would ask them [a newly diagnosed person] who diagnosed their epilepsy and I would say if it was their GP and their GP hasn't referred them to a specialist I would say go back to the GP and ask for a referral to a neurologist because I think that's of absolute importance. I know it's difficult with the NHS in dire straits financially but I think we need to fight for these things and I would encourage the person to do that. And I would encourage them that life can go on with epilepsy, that you can do most of the things you want to do providing you accept what epilepsy is. Read about it, find out about it, tell people about it, show them that you're not frightened of it. Or if you are frightened show them you are frightened, but talk to them about it, tell them what to do, give them leaflets to read about how to deal with it. And you know live, live life to the full, life's very short and very precious and I think it's very sad to just put your arms around yourself and say 'I've got epilepsy, I can't live.' You can. But I think you need to do it with the support of other people.

Some people who'd had surgery for epilepsy recommended finding out whether this was an option. Many advised taking medications as prescribed. One man emphasised the importance of discussing the social and emotional impacts of epilepsy, and the need for more neurologists specialising in the condition.

Highlights the need for more epilepsy specialists, and the importance of talking about the...

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Age at interview: 45

Sex: Male

Age at diagnosis: 26

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So really in the future, in the next five or ten years, there has got to be a push of not only more neurologists available but also help from people like nursing staff. And they must, I think we ought to go really towards having more talk about the psycho-social side of epilepsy, how it affects people on a day to day basis rather than just clinical diagnosis and talking about the stigma effects and things like that. I think more, I think more advice ought to be given on how to run your life with the condition as opposed to the outdated sort of perceptions that people have.

People also advised seeking information about epilepsy and learning more about the condition. Joining epilepsy organisations was another strong recommendation. Many people stressed the importance of being open about having epilepsy and discussing it with others. Some also advised carers and family members to be patient and supportive as accepting support can be difficult when someone does not completely understand how they feel. One man recommended accepting support and help, and that carers need to be reassuring and understanding.

Advises seeking information about epilepsy and learning more about the condition.

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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It's always useful for doctors to get to know what your sort of patterns are for your seizures. A way is to carry around a diary where you can write down if you're having a mixture of the seizures, say the complex partial or the grand mal you have, put into your diary, a pattern. When sort of say the time of the month or when they should be happening. And another good thing to carry around is an ID card where if you're out on your own and you have a seizure, you can sort of produce this card and people relax, they know who to contact then.

Is there anything else that you want to add at the moment? What advice or message would you give to someone who's been newly diagnosed, from your experiences?

If a person has been newly diagnosed I'd pick up information from the National Society or the British Society, whichever you feel at ease with, or both of them. And then when you're seeing your doctor you can sort of ask his advice on what to do next. But with the Societies you can get information about groups to help you understand the condition more.

Advises joining epilepsy organisations, being open and carers to be patient and supportive.

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Age at interview: 43

Sex: Male

Age at diagnosis: 27

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Contact the Epilepsy Association, number one definitely. Number two I would say once you've started to research and get advice on the various aspects of your type of epilepsy, is then just to sit back and you know consider your options. There's always a way out and I mean I lost my job through this, I lost my license through this, major impact in the early days, but it was just one of those things that with the support of my family and particularly, as I say, the Epilepsy Association I felt I was able to progress through by just accepting it really. And the third thing would probably to not be frightened of talking about it, so those would be the three main things that I would do.

It's very difficult in the early days to explain how you feel and how it affects you. And for somebody to, you know if somebody gets diagnosed as suffering from epilepsy, sometimes like in my case, apart from passing out, there was not a great lot of visual signs. It's not like you see a sort of deformity on a body or something like that, it's very, it's inside your brain, it's very hidden. But the effect it has on you as a person and how it makes you feel is awful. And I think really you [carers] just need to be sympathetic and understanding, which I got from my family and I would just say be patient because obviously the people have got to get time to adjust to what is now a very, well there's going to be a major change to the rest of their lives. I couldn't have done all this without the support I got.

Some people we interviewed urged others with epilepsy not to be ashamed of having the condition but to be proud and open. Some recommended joining support groups where they could talk to others with experience of the condition. Yet others recommended carrying identification cards for safety. One woman also advised being aware of triggers to seizures.

Recommends carrying an ID card and being open about having epilepsy.

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Age at interview: 18

Sex: Female

Age at diagnosis: 14

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So any advice you'd give to anyone who'd just been diagnosed, newly diagnosed?

Yeah, don't worry about it. Relax because if you stress about it, its just worse. The more stress the more fits you're likely to have. Don't hide it from people because that adds to stress and you can't get help if people don't know. I've got a medical alert bracelet because if I was to have a seizure when I'm out, some people would think I was drunk or on drugs. I find that a help as well, its just reassuring, I haven't had to use it but its there. And I always carry ID in my purse. Um, just don't try and do, especially to youngsters, don't do things to look cool if you know its gonna react, if its gonna cause more fits. I mean don't be afraid to say 'I can't do that,' you know. Or 'Why don't we go to a pub for a drink rather than out clubbing?' And also be strong and sort of walk out with your head held high. You're no different to anyone else, you're not epileptic, you've got epilepsy. But you're a person in your own right, so just carry on like normal.

That's brilliant. It sounds as if you've really become stronger and more confident from the advice that you're giving.

I think so. I think if I'd have listened to the doctors I would be mad by now! But um, I think a lot more has got to be done to make people aware of the different types of epilepsy. I mean paramedics that have come out to me don't know about complex partial seizures, to me that's scary! Because these are professional people and they just don't know it exists. It's not their fault but I think more should be done.

Several people discussed the importance of not letting their epilepsy become restricting. One man explained that, while he'd had to make some changes because of his epilepsy, it was important to remain focused and pursue different interests. Another stressed the importance of being positive. He also explained how he kept his epilepsy in perspective, and how this had inspired him to run in the London Marathon.

Discusses the need to make some changes but to remain focused and pursue new interests.

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Age at interview: 26

Sex: Male

Age at diagnosis: 18

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I think just to appreciate that it's not the end of the world, you know your life does go on. There will be changes to your life, there will be minor changes. I think that's dependent on your type of epilepsy but provided your friends and your family are understanding and you explain to people without keeping it bottled up, your side effects and your feelings, then there's no reason why you can't progress with your future, I live my life. I feel that I've progressed and succeeded academically, the epilepsy hasn't necessarily interfered with this. I lead a healthy life style and it doesn't interfere with your health in that sense. You can pursue other things. I'm continuing to pursue new interests, alternative interests. Just remain focused, just maintain your focus upon the objectives you had prior to your diagnosis. There will be changes physically, mentally, just continue to remain balanced and career focused.

Emphasises being positive and keeping one's epilepsy in perspective.

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Age at interview: 31

Sex: Male

Age at diagnosis: 12

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Don't let it beat you because if you, you know, if you just loaf about and be depressed about it then it really will be, you know. You really only have to take a look around you and see that there are people who are in far worse situations.

One of the reasons why I ran the London Marathon was I saw many years ago one of the earlier London Marathons in the early '80s was a guy who was in a wheelchair. And he had no arms and no legs. And he had sort of stumps to there, and he had special crutches that were sort of like fitted over the joint, socket. And he was sort of pushing himself along on crutches. And he went over the line, and I was like 13, 14 at that time and I thought, you know, God I thought I had problems. And you see people like that and I said 'If he can do a marathon, I'm damn sure I can.'

You know, so you've got to look and see that there are people like that. And you've got to look at people like the wheelchair athletes, like Tanni Grey and people like that. And they've made so much out of life, in such difficult circumstances.

Some of the carers of people with epilepsy, pointed out the benefits of talking to other carers. One woman also advised carers to accept help when needed and to be aware of over-protecting children.

Advises that carers accept help when needed and avoid over-protecting children.

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Age at interview: 22

Sex: Female

Age at diagnosis: 1

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Don't turn down help. [my son] first went to respite carers when he was 17. In Oxfordshire, it's not very good, the respite care, but insist on family and friends getting to know the child. Insist on that, accept any offers of help. Make sure that you get free time for yourself, for your other members of the family. It's becoming impossible to go on holiday now because [son] just won't co-operate. He just wants to go home, he plays up something awful. We did try to take him on holiday every year and we were spending hundreds of pounds on having a really miserable time.

So make sure your child knows as many people as he can possibly, or she can possibly meet, like a normal child really. Don't try and treat them like the like they're with kid gloves really, which I did. You know I treated him as he was this precious thing, which hasn't done him or me any good really in the end, because he won't go to anybody else.

Last reviewed May 2016.
Last updated March 2014.