Here young people talk about what had helped them with living with epilepsy;
- Support from friends and family
- Web forums
- Support groups
- Training
- Support and information from health and other professionals
- Counselling
They also pass on their key messages to other young people.
Friends and family
For many, friends and family were the most important source of practical and emotional support. Going to clinics together, getting lifts from people and being with people they trusted when going out, travelling and doing sport were things many people liked to do with friends or family. Emotional support was also invaluable to young people; having a shoulder to cry on, someone to cheer them up and someone who appreciated and supported them in what they were going through (see 'Friends' and 'Parents and family'.)
Webforums
Many young people actively used web forums and warmly recommended them to others (they also have pages on Facebook). People used the forums to share information, experiences of seizures, treatments and other aspects of living with epilepsy, but also to socialise, spend time with others and chat about things other than epilepsy. People said the webforums were great because almost everyone there has epilepsy themselves so can appreciate what others are going through. One woman said it was great not to have to always explain herself from the start because others on the forum already knew what she was talking about.
Kirsty asked a lot of questions on the web forum when she was diagnosed. Everyone there is really...
Kirsty asked a lot of questions on the web forum when she was diagnosed. Everyone there is really...
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I just wanted to know like if they could, like I knew obviously you could get on with life as normal, but I just wanted to know if there was like any cutbacks or anything holding them back and stuff, and they were like, "No, no, no, there's nothing." You know, you just get on with it like I do, I've learnt from them you just get on with it and deal with it and if you have a problem you just go on and say to them like oh I've got a problem, and they'll just say, "No, no, no, carry on" and stuff like that.
Were they all so sort of positive about it?
Yeah, this time, like obviously like you get some new members who've just got it and they're like you know, "I've just discovered the site and I've got epilepsy, I don't know what to do about it." And then everyone will leave a comment for them, a positive comment for them, and they're like, "Ah thanks, that's really actually made me feel better about it." And then they're okay then so they join a little positive group and you get another little one, and you say stuff to them.
That's really great.
Yeah they're like a big family.
How did you find about that group?
I think there was leaflets from the hospital it was, they give it to me to have a look. Like there was a few different things on there and then they said about this website and I then just had a look at it. And I didn't, I quickly signed up to it, and didn't go on it for a few months, and then when I got used to the idea I went on there and I started talking to people, and they are all actually really nice people.
One of the main benefits of forums was their availability - the forums are always there to be used when and where people wanted. They could join in the discussion threads relevant to them and ignore the others. Some said that people are honest and open on the forums. They felt that they could be honest because they were anonymous and that they could trust others to tell the truth about their experiences of living with epilepsy.
Helen says forums are great because they're always available. She can ask anything and not feel...
Helen says forums are great because they're always available. She can ask anything and not feel...
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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The epilepsy forum, the National Society for Epilepsy Forum, I could not recommend that enough, those people are fantastic. It's the most amazing support group because there are people from all over the UK, there are people with all sorts of different forms of epilepsy and I could ask them any question, they would answer it almost straight away. They would never, if you want to ask a question on there, it doesn't matter how silly it is, how basic it is, how trivial you think it is they will answer it and they will answer it in a sensible way and they will treat you like a human being because they have had the same problems themselves and they know what it is like to go through. So forums like that are absolutely amazing.
It's good for me because it's always there for a start. I don't need to travel. I don't need to go out of my way. I can just log on and there's a whole network of people and you become kind of friends with them and they have outings and things. I mean I don't think that my epilepsy is something that affects me on such a day to day basis I need to use it as much as I did when I first found out. But I think it's good because, as well you know, people don't always like to talk about their epilepsy but on the forum they feel they can. There's that anonymity behind it. They know that you know if people search, if people Google their name on the internet they wouldn't necessarily find them on the forum. And because I'm quite happy to talk about my epilepsy, I want everyone to know about it because it's better then no one knowing and it's better than rumours going round and me not being in control of what people know about my epilepsy. I'd rather lay it all out on the table, explain to people, be as open as I could and you know even if it went to the extreme of having maybe a little leaflet, "Hi I'm Helen. I have epilepsy." It actually would be much easier. But I know that not everyone is as happy as me to talk about their epilepsy and so things like the forum is fantastic and also if you've first got epilepsy or if you don't know if you've it, if you're in the mid-stages of diagnosis maybe you don't want to label yourself on one of the internets having epilepsy so you can just log on and you can have your own little name and it doesn't matter who you really are. It's great and people will just be nice to you. They won't judge you. It's great.
Rachael got a lot of support from other young people on an epilepsy message board. She also kept...
Rachael got a lot of support from other young people on an epilepsy message board. She also kept...
Age at interview: 25
Sex: Female
Age at diagnosis: 21
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When I was first diagnosed, even before I was diagnosed, I like went off, and I like most people do when they find out that they've got something, I'd completely researched it on the internet and there is some really really, there is one website that's got a very good messageboard, and they were very supportive. So it's like getting in touch with different people with epilepsy who were young as well, because going to support groups and sort of like trying to share your experiences and it was nice to sort of like see oh this person's had that problem and this person's had that problem. So I'm not alone. And so that was definitely a definite positive side of it.
You found the webforum, or the message board' supportive?
The message board, yes definitely. As well because you can you know you can pick what posts you want to look at so you can see something, if there's a title of a post and you feel it's relevant to you, you can go and have a look, whereas you can cut out all the rest, like all the rants that people go on about, so it's nice just to pick that little few. And also as well, you can post sort of like; I kept a seizure diary on there. And it was just, it was really weird actually, 'cos I had a look at it the other day, and it was just like, oh my God things have changed so much. But you know you post, you post a bit this has happened, this has happened now, oh this has happened. And they would like lift you up, and sort of say, don't worry, we've gone through it as well, oh you must be feeling rubbish, sending you big hugs and stuff like that. And it was just, it really really really helps. Definitely helps.
Yeah, so is that something that you would recommend to others?
Oh God yes, definitely, definitely, definitely.
In addition to the forums, many had used epilepsy charity websites to search for reliable information.
Alistair got a lot of information from epilepsy charities' websites and explains why he prefers...
Alistair got a lot of information from epilepsy charities' websites and explains why he prefers...
Age at interview: 18
Sex: Male
Age at diagnosis: 16
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I did actually look on the internet. I thought it's easy, instead of reading a book, if there's quick bullet points that could tell me straight away. Because I think sitting there reading a booklet everything might not sink in. Whereas if you go in there and find the top ten bullet points, websites can be good. And I did. I went on the Epilepsy Action, organisations that help with epilepsy were useful sites. I became a member of one of them and every so often information leaflets, new updates and stuff sent out to me. So and that can be a good source for information.
Do you feel now that you have enough information about epilepsy?
I don't think you'll ever have enough information. I think you can get more than one information weekly, daily, stuff like that. So every so often I tend to go on websites and read me books more. See if I find out any different. Information does get passed on to friends and so they find out what epilepsy is as well.
Support groups
A few people had been to support groups for people with epilepsy, either on a one off-visit or more regularly. We also spoke to a couple of people who were actively involved in running a support group or fundraising. They said support groups were good sources of information and, like the web forums, sources of emotional support from others who could appreciate their experiences.
Becky has been involved in fundraising, lobbying and awareness raising activities.
Becky has been involved in fundraising, lobbying and awareness raising activities.
Age at interview: 23
Sex: Female
Age at diagnosis: 15
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Every year we have, 'Out in the open' which is a sponsored walk, so we do that every year which is around a place called [place name], which is a big country house and we do a big sponsored walk around there, we also do, every year we set up like stalls and stuff around the city centre and [laughs] last year we had t-shirts made. The our epilepsy nurse had t-shirts made that said, 'Epileptics do it in a fit of passion.' I don't know, it's not everybody's cup of tea, but she thought it was hilarious. And she would stand in town and like you know, get out leaflets trying just to stop as many people as possible, you know, try and, cause we've got like, I think she has, just in her hospitals' catchment area, she's got about five thousand, five thousand people with epilepsy. And we have, I think fifteen people come to our meeting. If you think there are that many people, think of how many people we could help and there are only fifteen people coming to the meeting, and I'm like, 'That's crazy. There are so many people in our area that we could help.' So we do that and then we, lobby like our councillors to get all the acts put through in parliament, and, we go around to schools, sometimes, like with the education packs, and the doctors, we sent out all the better, the epilepsy packs out to the doctors because they should be doing so much more, you know cause they, the doctors actually get, they get money, they get special money given to them to, you know, designated to treat people with epilepsy and they're just not doing what they should be doing. So we made sure that we gave them the packs that tell them exactly what they should be doing and, we go to the panto every year as well, at Christmas, that's quite funny. Yeah, we're trying to organise a pub quiz as well just so I can get my mates roped in. Because, a lot of the group are like quite a bit older and they want to do like things that I'm not really interested in, like, tours of country houses and things, which doesn't really interest me, so I thought there's a social club up the road that me and my partner go to, and they've offered us, offered us their room, their function room for free, so we're gonna get all my mates round and have like a pub quiz and we've got loads of prizes from like, donated from the local businesses, like the cinema and the restaurants, and stuff, so we're gonna have like a raffle, and an auction, and stuff like that there so yeah. But we've got to try, and we're gonna try and do a bit more this year.
Going to a local support group completely changed how Rosie saw her epilepsy and she hasn't ...
Going to a local support group completely changed how Rosie saw her epilepsy and she hasn't ...
Age at interview: 22
Sex: Female
Age at diagnosis: 10
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For about 3 years during my teens I used to always feel sorry for myself and felt as though I was the only one with epilepsy. But one day all that changed when my mum showed me a newspaper article about a local epilepsy support group that met once a month, she suggested I go and meet others with the condition, to know that I'm not on my own, and make new friends. I went to my first meeting and found it such a relief to realise that there are people out there who know how you feel. I couldn't stop talking on the way home.
This was 6 years ago now, I've made some great friends and I've not looked back since. Going to these meetings has made me view my epilepsy in a different light; more positively and getting on with life as well as being happy with the epilepsy, no longer seeing it as a hindrance in my life or in achieving goals.
I only [go] when there's something interesting on as some of their activities aren't my thing because I am the only under 25 person there and feel kind of out of place. The group mainly has speakers in and they always have a BBQ in the summer which I go to, and the arrange outings to see how things are made or go for walks.
Some young people we spoke with had never met or spoken with anyone else who had epilepsy and said it would be interesting to meet others. People said they'd like to hear others' experiences of, for example, medication side effects, depression, and memory problems. Quite a few people would've liked to have gone to a support group but there wasn't one in their area or one particularly aimed at young people.
Many were not particularly interested in meeting others face to face but said that support groups are good for those who want to go. People said they'd only want to go if they were genuinely interested in the activities they organised and if others attending were of a similar age.
Becky says young people's support groups need to do things that actually interest young people...
Becky says young people's support groups need to do things that actually interest young people...
Age at interview: 23
Sex: Female
Age at diagnosis: 15
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The reason I didn't go to the young persons one is because, because the age was so vast, I think it was like from, excuse me, from like I think it was like from something stupid like 11 to 26 or something, now that's just madness, an eleven year old doesn't want to do the same thing as a 26 year old. And that's the problem, and then you've got the same problem with this group now, I'm 23 I don't wanna do the same thing as this you know particular woman who's like 65. We don't wanna do the same things; I don't want to go to Lady Nancy Astor's house. You know, I don't want to do that. So I think that's the problem, you need to have, you need to have something where you need to have maybe a kids' group, and then a young persons' group where we can, maybe a young persons' group where you can you know go bowling, or you know, rather than meet in a Church Hall, you wanna meet in like a pub or something, I mean, you can't necessarily drink, but you know, just it's not about drinking it's about being in a social environment, you know like a caf' or something, or you go bowling, or you can meet up in, I don't know, anywhere. Just go to a comedy club or something, you know. Go for a, have your meeting at a meal, and then do something sociable afterwards, that that's what it needs to be, 'cause sitting in a church hall, talking over each other and that's not to me what a support group is, a support group should be people who are friendly, people who are welcoming, you know what I mean. But that's what the problem was I think, is that they were trying to encompass too many people in one bracket, I think.
A couple of people had gone to a support group for a while but had stopped going because they were the only young people there or because seeing others who were more ill and severely affected by epilepsy made them feel bleak and uncomfortable.
Training
Some people also talked about the training they had received to get more information, learn about managing epilepsy and their lifestyles, and to meet others with long-term health conditions.
The Expert Patients Programme helped Donna learn more about managing chronic conditions and share...
The Expert Patients Programme helped Donna learn more about managing chronic conditions and share...
Age at interview: 28
Sex: Female
Age at diagnosis: 3
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It [Expert Patient Programme] was all about how to manage our health conditions better, it showed us different relaxation techniques, it was about meeting and talking to other people with chronic illnesses, I met again most of the people were older than me, but one of the tutors, she was only about twenty three I think and she'd had rheumatoid arthritis for about ten years. So I mean I, the only reason I sort of did the course was to go and really make myself feel better, and just to mix with other people that'd had health conditions and talk to them about my health condition, and them talk to me about their health condition so, it was a really good programme, I did get a lot out of it. I've got a manual upstairs that I can always revert back to, but again I didn't, I just feel like it's probably just a little bit too late for me now. But I went on it anyway just to see what it was, you know what people got out of it. And I've kept in contact with some of the people that I met and we met up again last week and then we're gonna meet up again in eight weeks from that so, we're gonna try and, there was eight of us I think, so we're gonna try and keep, keep in contact with each other. I mean there was one lady from, [town name] I think in Yorkshire, and I love Yorkshire people, they're great. And obviously she'd had, again various illnesses, she'd had a stroke and different things, but she's you know, she's really nice and we went to her house about eight weeks, sorry, about two, three weeks ago, and she was, then again she was talking about the, getting on a bus and that sort of thing and how people don't understand and getting on a train. I said, 'Well I do, I said, I do understand what it's like not to be able to do these sort of things and, and panic. You know she said, 'I just can't get on a train, I'm too frightened, in case I have, another stroke or something.' I said, 'That's it.' I said but I could put, sort of put my boot, put my boot on the other foot now, and say look I, you know, I know what it was like, but look I can do it now and it's great.' So I do know how she feels, and that's when she said, 'Oh well, yeah I suppose you do know.' I said, 'I do know, yeah.' I said, 'Just cos I can do it now, I can do it now, but you know all them years I couldn't do it,' so I do, so it is very good, it is a very good programme and it's nation, you know it's national, well I think I think, it's all, I think it started in America. It's all, it's worldwide now. So it's a very good programme for anyone with a chronic, a chronic condition.
The
Expert Patients Programme runs training courses for long term conditions Another young woman was doing a volunteering scheme with Epilepsy Action:
Clair is doing a volunteering scheme with Epilepsy Action and explains what it involves.
Clair is doing a volunteering scheme with Epilepsy Action and explains what it involves.
Age at interview: 22
Sex: Female
Age at diagnosis: 19
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It's a scheme and you apply for it and they sort of, they look for to try and get a range of people sort of covering all ages and all experiences. And you do a couple of actual training days on communication and presentation skills and that sort of thing, and then you do a distance learning course which is learning you've got different modules covering different areas of epilepsy so that you have a deeper knowledge of epilepsy and then once you've actually passed all the sections you go out and then working more on the presentation side, so going out and giving presentations to schools, employers, nursing homes that sort of thing, and then occasionally you'll go out and see someone, sort of you might go to a caf's somewhere and meet someone in a public place, it's always a one-off and you're not a counsellor you're just going to listen to them tell their stories and you give advice and contacts so you're going kinda, it's more giving them support rather than anything you're not doing any sort of, counseling and knowing your boundaries as well that's one big thing is knowing where you can stop and have to say, 'I can't help you with that you need to, but here's someone who can', and it's kind of not leaving them but they're kind of rollicking at the educational side I think because they've got such a large, they've got a lot of people trying to get in touch with them to do it so they're trying to sort of, like enlarge that area so yeah.
And why is this something you want to do?
I think because Epilepsy Action did give me a lot of, I found a lot support on their website, and I went to a, one of their local conferences and it was really interesting and the last person to speak was actually a volunteer and his story was really similar to mine and it kind of, and he had then sort of got to this stage that I was that and decided he wanted to give something back and he'd gone and done this scheme and so after that I kinda went home, read a bit about it and applied and, I got on the course so it was kind of that person who really sort of inspired me to do it.
Health and other professionals
Some young people had received a lot of help and support from health professionals and felt they didn't need extra support from organisations or peers. People especially praised their epilepsy nurses and many felt at ease talking about things like sex, contraception and alcohol with their nurses (see 'Experiences of health care services and professionals'). Most of those studying at university got a lot of practical help and support from the disability office (see 'College and university').
Counselling
Quite a few people had received counselling to talk about their thoughts and feelings about epilepsy. Anxiety and depression were common reasons for getting counselling. People's experiences were mixed. Some had found talking to a counsellor useful, others had learnt helpful relaxation techniques, for example, but many felt counselling hadn't helped them much. One woman hadn't been happy with the psychologists she'd been to see and pointed out how important it was to get on well with the counsellor (see 'Anxiety and depression').
Some people felt that they didn't need or want much support and said what had helped them get through difficult experiences were time and their own attitudes and personality.
Messages to others
Here are the key messages that the young people we spoke with wanted to pass on to other young people who have just been diagnosed with epilepsy or are living with it.
- Having epilepsy is not as bad as it can feel at first!
- Epilepsy doesn't need to stop you from doing anything you want. Try to focus on the positives in your life - you can still do all the things you'd always wanted and enjoyed, perhaps with a bit more care and planning.
- Give yourself time, things will get 'a hell of a lot easier' in time.
- Take every day as it comes.
- On a low day, get onto epilepsy forums to chat with others and cry on a friend's shoulder.
- Get information, information, information! The more information you have, the easier it is to cope and make decisions about lifestyle and treatments.
- Don't be afraid to ask doctors questions - it's your right to know about YOUR condition.
- Sharing your experiences with others on epilepsy web forums or in support groups can help.
- Epilepsy is a very individual condition and affects every person differently - you are unique!
Last reviewed May 2016.
Last updated March 2012.
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