Here young people talk about friends and if, or how, having epilepsy affected their friendships. They explain how their friends had been there for emotional and practical support, to share experiences and just to have fun with!
Sharing, support and having a laugh
For many young people we spoke with, friends were the most important source of support, sharing and encouragement, and many said they couldn't have got through their experiences without close friends. Friends were the ones with whom people wanted and were able to talk to about their feelings on living with epilepsy, seizures and difficult times.
A couple of people said that they didn't want to talk to their friends about epilepsy because they worried about being seen as a burden on others or looking for pity, or because they wanted to talk only about fun stuff.
People described how their friends had made them feel better about having epilepsy, taught them how to appreciate the positive aspects of life and not to feel embarrassed about discussing their epilepsy.
Friends were also those with whom people could tell jokes and have a laugh with about their epilepsy, which many felt was really important (see 'Humour and jokes about epilepsy').
Many people emphasised how important it was for friends to know what to do if they had a seizure and that their friends wouldn't panic or freak out. Many had been in situations where their friends had had to call help or an ambulance, when they had a seizure. Most people felt reassured knowing that their friends would be calm and responsible if anything did happen.
A few people mentioned that their friends had learnt basic first aid and how to put them in a recovery position after a seizure. Some said they felt safer and more confident to go out with their friends rather than on their own, knowing that 'friends will keep an eye on me'. One woman said it was funny how her friends were sometimes even overprotective, constantly making sure she was okay and looking after her.
For many, friends were also there for practical help, if needed. A few people took a friend with them to the epilepsy clinic appointments, both for emotional support but also to help them remember to ask questions and recall what had been discussed. Other practical help from friends included having lifts if they couldn't drive, though some people pointed out that they didn't want to depend on others for getting around.
Feeling isolated
For some young people, making friends had not been easy. Those who had been diagnosed or were struggling with severe seizures in their teenage years or in the first year of university, said it had been difficult to make friends. For a few, making friends had been really difficult because their lives were dominated by hospital appointments, treatments and seizures.
Some people talked about how their friends had disappeared after they had been diagnosed because they couldn't go out, drink and have the same lifestyle as before. Many said their friends had found it really stressful to see them have seizures and gradually stopped asking them out. These experiences were hurtful and made people feel isolated.
Some people were concerned about being a burden on their friends and one man felt his epilepsy put 'a strain' on them. A couple of people said they felt 'guilty' for 'ruining' a night out for others if they'd had a seizure.
One woman said that, after her diagnosis, she saw her friends in a different light because some of them became more distant towards her.
Another woman whose close friendship had broken down after her diagnosis felt that it was partly because her 'expectations were too high' of him. They were both quite young and her friend was also dealing with issues in his own life. Generally, people felt it was easier to make friends when they were a bit older and people a bit more 'mature'.
A couple of people had decided not to tell most of their friends about epilepsy, at least for a while after being diagnosed. One woman said she kept her epilepsy 'a secret' from most friends and had to make excuses why she couldn't drink alcohol.
Friends for life
On the whole, the young people we spoke with said that having epilepsy had really shown them who their real friends were. Many said they'd gained 'friends for life' - friends who they knew would always stick by them.
The Epilepsy Society has produced a free, handy credit sized card for people to carry in their purse or wallet giving specific instructions on what to do if they see someone having an epileptic seizure. To get a free first aid card, please send an SAE to EIS Society for Epilepsy, Chesham Lane, Chalfont St Peter, Bucks SL9 0RJ.
Last reviewed May 2010.
Last updated March 2011.