Feelings about an epilepsy diagnosis

Getting an epilepsy diagnosis, sometimes after a lot of uncertainty and time spent having tests, affects everyone differently. Here young people describe how they felt when they got the diagnosis. Their feelings ranged from shock, anger and upset to relief that they'd got a 'name' for the problems they had been experiencing and could now deal with them.

Expecting the diagnosis
A few young people said they weren't surprised when they got the diagnosis. They were expecting it because they'd read about the symptoms and the doctors had already discussed the possibility of it being epilepsy. When the diagnosis was actually confirmed, it just reinforced what they or their doctor had already suspected.

Feeling shocked and upset
Several young people said the diagnosis came as a 'shock'. One man who'd been told he might outgrow his epilepsy, in fact developed a new type of seizure. A definite diagnosis of epilepsy felt like 'a kick in the teeth' for him. Many people described feeling very upset and sad about the diagnosis. They said they were 'devastated' and a few described 'grieving' over the life they felt they'd now lost.

Several people said that the upset and shock was bound up with not understanding what epilepsy was and not getting enough information about the diagnosis. A few said they didn't know anything about the type of epilepsy they were diagnosed with because they'd only heard about tonic-clonic ('Grand Mal') epilepsy before. The most upsetting thing about the diagnosis for a couple of people was losing their driving licence and so their freedom to come and go as they wanted.

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For many, coming to terms with the diagnosis was a gradual process that took a long time. Some said that, with time, they'd been able to accept that they had epilepsy. Others were still coming to terms with it.

Some people felt that, at least at first, the diagnosis had affected their confidence and they'd become more introverted. A few had also experienced depression, either because of their epilepsy or otherwise (see 'Anxiety and depression').

'Why me?' and feeling angry
A couple of young people said the hardest thing for them was feeling that the diagnosis made them different from their friends, and they kept asking themselves 'Why me?'. One young woman felt that trying to 'live a different life' to all her friends because of her epilepsy was especially hard when she was a teenager. 

A few people described feeling angry when they got the diagnosis. One woman had felt angry at the doctor and at her friends, some of whom had lost interest in her after she was diagnosed.

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Feelings of denial
Quite a few people said that when they were first diagnosed they 'denied' it completely, didn't want to 'deal with it' or 'admit the truth' to themselves. For some of these young people being 'in denial' also meant not starting their medication (see 'Medication'). A couple of people said they couldn't accept they had epilepsy because they saw it as something that only other people had.

Feeling relieved
For many young people the epilepsy diagnosis was a huge relief because they'd finally got a 'name' and explanation for the problems and weird experiences they'd been having. One woman said the diagnosis 'changed her life' because now she had answers to all the niggling uncertainties and questions she'd had for years. Another said getting the diagnosis had been 'a jigsaw puzzle finally coming together'. The diagnosis brought a sense of certainty and security. 

The main reason for people feeling relieved about the diagnosis was that the problems could now be dealt with. For most, this meant starting their medication. A couple of people said they felt relieved that it was a medical condition and not something they'd 'done wrong' or 'made up'.

A few people also talked about positive psychological effects of getting the diagnosis. One young woman said she felt happier with herself after the diagnosis because she now knew she wasn't a 'freak'. A couple of people said that the diagnosis boosted their confidence.

Even though the diagnosis brought certainty with it, it also raised many new questions' what will happen next, what about school or university, can I work, can I drive, will friends understand? A few people felt the appointment with the consultant, when they were given the diagnosis, was too short for them to voice questions and feel reassured.

A couple of people said they were 'not bothered' by the epilepsy diagnosis or felt it was just 'inconvenient' because they only had seizures so rarely. These young people felt that having epilepsy didn't in any way change anything about their lives. 

A few people said they were very practical, accepted the diagnosis quickly and just decided to 'get on with it'.

Last reviewed May 2016.

Last updated May 2010.


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