People react to a diagnosis of epilepsy in different ways. For some, the news is shocking and distressing. For others, it is a relief to have a name for the symptoms they have been experiencing.
Many people we interviewed described the impact their diagnosis had on them. Feelings of anxiety, shock and disappointment were common. One woman, who was diagnosed at the age of ten, recalled her feelings of shock. She also explained how having epilepsy affected her confidence and led her to try to prove she was as good as everyone else.
Recalls feeling shocked and trying to prove herself.
Disbelief was another common reaction, as well as feelings of anger and bitterness. One woman explained her husband’s misery when he first saw his own seizures on video.
Describes her husband’s misery when he first saw his seizures on video.
Describes her disbelief at the news of her diagnosis.
Anxiety and depression at some point also affected those we interviewed, particularly if the epilepsy was poorly-controlled (see ‘Anxiety and depression with epilepsy’). Many of those we talked to discussed their feelings of depression and isolation over the years. They often advised seeing counsellors, joining epilepsy support groups, and having a positive outlook.
Peoples’ reactions to a diagnosis of epilepsy were often bound up with their concerns about the impact it would have on their lives. The impact of the diagnosis on driving was important for some. Other people discussed the impacts on work, social life, and independence. One woman explained that, although she was happy to have a label for her symptoms, she was concerned about the reactions of other people.
Discusses how her epilepsy affected her work and independence.
Explains that she was happy to have a label for her symptoms but was concerned about other…
Feelings of relief were also discussed. One woman described her feelings of excitement and relief at having a name for her condition. She wanted to tell other people about her epilepsy, though also discussed her feelings of depression and isolation.
Describes her feelings of relief as well as depression and isolation.
Some of those interviewed had not known anything about epilepsy when they were diagnosed. They explained how the diagnosis meant little to them. Others, who had had epilepsy as very young children, described how they had grown up with the condition.
Explains that the diagnosis of epilepsy meant little to her.
Explains that she was diagnosed as a child and has grown up with having epilepsy.
Several people said that they were calm when hearing the news of their diagnosis, often because they knew a bit about epilepsy already. One woman said that her mother had epilepsy and so she was not too anxious about her own diagnosis. One man explained that his brother had epilepsy. Another decided to ‘get on with life’ and not let the epilepsy affect him too much. One man described how he considered his feelings after leaving the hospital. He also explained how his supportive family and friends, and a sense of humour, had helped him.
Explains that his brother had epilepsy, and how he felt calm when he was later diagnosed…
Discusses his attitude of getting on with life even though he has epilepsy.
Discusses how he felt after leaving the hospital, support from others and having a sense of humour.
People also discussed their concerns about telling other people and the reactions of others (see ‘How epilepsy affects others’).