Epilepsy

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
  • 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.

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.

In addition to the forums, many had used epilepsy charity websites to search for reliable information.

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.

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.

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 runs training courses for long term conditions Another young woman was doing a volunteering scheme with Epilepsy Action:

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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