Many people we interviewed discussed how epilepsy affected their daily lives. They explained that their own perceptions and attitudes as well as the reactions of others were important in terms of how they felt about themselves and their condition. Their feelings were also bound up with whether their epilepsy was controlled or not, the type and frequency of seizures, and their age.
Some people with well-controlled epilepsy explained that their condition did not affect their everyday lives in any major way, although they took medication daily. One man said that he discussed his epilepsy openly with other people. His epilepsy had made him more determined to prove himself and he stressed some of the positive impacts having epilepsy had had on his life. Others with well-controlled epilepsy discussed gaining control over seizures and being able to drive again. Some people explained that, although epilepsy no longer affected them, they were involved in promoting awareness of the condition.
Discusses being open about his epilepsy and the positive impact it has had on his life.
Discusses his interest in promoting public awareness of epilepsy.
People whose epilepsy was not controlled also discussed their feelings about living with epilepsy. Some explained how they kept themselves busy and occupied and did not ‘give in’ to the epilepsy. Many discussed the benefits of joining epilepsy support groups and organisations. They often noted that many other people were worse off than they. One man described how he had kept his epilepsy secret and the impacts that this had had on his life.
Explains how she has not given in to her epilepsy by keeping herself busy.
Feels that keeping his epilepsy a secret caused him a lot of damage.
Several of those interviewed discussed how people with poorly-controlled epilepsy can get depressed at times because of the condition, the lack of independence, and the unpredictability of seizures. One woman advised against letting depression and negativity become overwhelming. Another stressed that, while her epilepsy could get her down, she also tried to think positively.
Advises against blaming everything on the epilepsy and letting depression overwhelm you.
Explains her positive outlook despite periods of depression.
People also discussed feelings of isolation and not wanting to mix with others. The fear of having seizures sometimes led them to become house-bound and withdrawn.
Describes how the fear of having seizures made him withdrawn.
Several people with poorly-controlled epilepsy recalled feeling restricted when they were younger. Others discussed feeling restricted because they could not drive, do some sporting activities, and because of tiredness (see ‘Epilepsy – leisure, safety and risks’). Those who had been diagnosed with epilepsy later in life explained how the condition affected their independence and ability to take charge as they had once done.
Recalls the frustration of feeling restricted when she was younger.
Some people with poorly-controlled epilepsy discussed how they were gradually building up their confidence and becoming more independent. For many people, accepting that they had epilepsy was an important step to dealing and living positively with it. They also discussed issues of stigma and the lack of public awareness of epilepsy (see ‘How epilepsy affects others’). Many stressed the importance of having a positive attitude and social support. For some, a sense of humour was also helpful.
Discusses gradually building up her confidence and becoming more independent.
Realises that accepting he has epilepsy is an important step to dealing and living with it.
People, with both well- and poorly-controlled epilepsy, were also concerned about the effects of anti-epileptic drugs on memory.