Coming to terms with a diagnosis of epilepsy can be difficult, whether the epilepsy is quickly controlled or not. Living with poorly-controlled epilepsy can also be hard, and support is very important. Many of the people we interviewed discussed getting support from various sources. Family and friends were often crucial to helping the person with epilepsy deal with their feelings. Some people explained how calm and understanding their partners were. Others had had support from their children and one woman recalled how her grandmother had been particularly understanding.
Discusses how family and friends support him.
Explains how calm and supportive her husband is.
Some of those interviewed discussed the support they’d had from outside the family. Sometimes they did not want to burden family members or wanted to talk to someone outside the family. Counselling was very helpful for some, and many people praised the help they’d had from counsellors. Others discussed talking to epilepsy nurses, both for emotional support and advice on medications.
Praises the support she received from counsellors.
Talks about the support she had from an epilepsy nurse.
Many people also mentioned epilepsy organisations and several people discussed the information they’d been given. Others explained how they had talked to people on telephone helplines about their concerns. Advice, information and support from epilepsy organisations were valued by many people. One man described how an epilepsy organisation had supported him in a case against his employers.
Explains how an epilepsy organisation supported him.
Support groups were a particularly important source of support for some. Many people said that talking to someone else with the condition helped them to learn more about it, as well as to understand their own feelings. Discussing their concerns with someone who had experienced something similar also benefitted people who felt isolated or depressed.
Is enthusiastic about joining a support group.
Having a religious or spiritual faith was a source of support and strength for some people. Many of these discussed how they’d had support from church members or strength through prayer. One man said that he’d had healing from his church pastor (laying on of hands). One woman, whose son had severe epilepsy, explained how her spirituality had helped her cope and understand.
Discusses the strength she received from her faith.
Explains how her spirituality has helped her cope and understand.
A few people found a pet to be a source of support when a person is having a seizure.
Describes how his dog helped when he was having a seizure.
For useful organisations please see our ‘Resources’ section.