Epilepsy in Young People
This helped me and messages to others about epilepsy
Here young people talk about what had helped them with living with epilepsy;
- Support from friends and family
- Web forums
- Support groups
- Support and information from health and other professionals
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'.)
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...
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...
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...
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...
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.
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.
Going to a local support group completely changed how Rosie saw her epilepsy and she hasn't ...
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...
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.
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...
Clair is doing a volunteering scheme with Epilepsy Action and explains what it involves.
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').
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.