The reactions of family members to a diagnosis of epilepsy vary enormously. Many of those interviewed noted that, after the initial worry and concern, family members were usually supportive (see ‘Sources of support for people with epilepsy’).
Some people explained that family members found it difficult to talk about their epilepsy, even if they were generally helpful. One man reported that, while his family gave him support, they did not tell their friends about his epilepsy because he himself wanted to keep it quiet. He also discussed the support he had from his wife.
Explains that his family were supportive, but they did not tell their friends about his epilepsy.
‘Why me?’ and ‘why this family?’ were questions that some people said they and their families initially asked. Others explained that, after early feelings of anxiety, family members were helpful and understanding. People often felt that, although their epilepsy was a subject that was not discussed very much, family members were concerned and eager to help.
One woman, newly diagnosed with epilepsy, explained how stressed and concerned both her family and her husband were. Another woman discussed her concerns about being a burden on her husband.
Explains how her condition affected both her family and her husband.
Discusses her concerns about being a burden on her husband.
Some people, who were diagnosed with epilepsy as children, recalled that their parents were often very protective towards them. Others reported that their parents did not treat them with extra concern. One woman discussed her parents’ interests in her well-being and independence.
Recalls that her parents tended to be very protective of her.
Explains her parents’ concerns about her independence and well-being.
Some of those interviewed explained that their diagnosis affected different family members in different ways. One man noted how upset his grandmother was. He also recalled how his parents did not openly discuss his epilepsy but were supportive.
Discusses the reactions of his grandmother and how his parents were supportive but quiet about…
One woman, whose husband had epilepsy, discussed her feelings of protectiveness towards him and her children. She also explained some of her own concerns as a carer of someone with poorly-controlled epilepsy.