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.
Ashlea didn't feel emotional about the diagnosis because she was expecting it. Her seizures didn...
Ashlea didn't feel emotional about the diagnosis because she was expecting it. Her seizures didn...
Age at interview: 21
Sex: Female
Age at diagnosis: 18
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It wasn't a surprise because I'd already figured it out that they were gonna say, 'You're epileptic.' They were gonna start treatment, so it wasn't a surprise. When I realised myself that, 'Oh I must be epileptic.' It wasn't really that much of an emotional thing because I kind of already knew really I just hadn't like put much thought into it. But I already really knew so it wasn't like it was out of the blue kind of thing. And you know, it wasn't that much of a you know it wasn't like. 'Oh God, it's sad everything,' it was more just, 'Oh it's a bit inconvenient.' Because it doesn't affect me that much, you know I'm not having seizures every day, I'm not in much danger, and it's not really that emotional for me. I was upset but not that much, I just got on with it, like that's pretty much all you can do you can't do much else. I think my mum was more upset than I was.
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.
Maria was 'devastated' when she got the diagnosis and cried for weeks.
Maria was 'devastated' when she got the diagnosis and cried for weeks.
Age at interview: 19
Sex: Female
Age at diagnosis: 18
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To begin with yeah, just cried lots and found it really difficult to explain why I was sad, because it is so difficult to understand from the outside. Just became quite introverted, and felt just devastated really. I felt like I was grieving, in a way, because it felt as though, well in a way I sort of catastrophising to begin with. I was like, “Well I'm never gonna get a job. I'm never gonna get my driver's licence and who's gonna employ someone whose disabled, who might have to miss days off work, and how am I ever gonna pass my exams, because my medications gonna make me, it's gonna affect my memory, and what if I have to leave university, what if all my friends abandon me?” I was thinking all these things and they're not very nice things to think. To begin with it was just spending a lot of time on my own, crying lots, and sort of doing small things which, just to try and make myself feel better, really trying to sort of make the best of it just buying my favourite chocolate bar and watching a good film and hoping that would make me feel better. And sometimes it did, but then sometimes it was like, “Well, why can't I go out and drink my sorrows away?” [laughs]. Yeah, so that's probably most of what I was doing for a long time was sitting on my own and crying.
Holly was really scared at first but her boyfriend's sense of humour helped her.
Holly was really scared at first but her boyfriend's sense of humour helped her.
Age at interview: 26
Sex: Female
Age at diagnosis: 18
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But luckily I had a rock, my then boyfriend. He was just incredibly good. He was always there and it was difficult as well because I was really scared, like the first few months, I was just scared because I was just having seizures all the time. I didn't want to be left by myself, I didn't want to be on my own, yeah I was scared and a lot of that kind of fell on him. He was awesome and really accepting and he made things quite funny you know. You can have a really dark sense of humour sometimes in really bad moments and that was really important. Like we'd be in hospital and he'd nick the, you know the thing that monitors your pulse that goes on the tips on your finger, he'd take it off, and when you put it on your finger it kind of glows red, so he was pretending he was E.T. and generally he was just a bit of a child. But, I really needed that kind of, that kind of side of things.
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.
Kirsty was 'distraught' that she couldn't drive her moped anymore.
Kirsty was 'distraught' that she couldn't drive her moped anymore.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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Okay, when I first had my first seizure I was on holiday in Tenerife. But I had had quite a bit to drink, so they kind of put it down to the too much alcohol at first. They said, "Ah if you have anymore come back." And then I was out again and I hadn't been drinking and I had another one. So they sent me to the hospital and that's when they diagnosed me with it, at the beginning. And when they told me I just blanked them, I just didn't really, I was just like didn't listen to basically what they said, like I started crying, because they said I couldn't drive anymore. I didn't really care about the epilepsy I just wanted to drive my bike, and then I spoke to the nurse and she said about it all the medication and I just didn't listen and when I actually came home and sat on my own, I kind of like realised that like I had something wrong.
When they told me I had epilepsy, I blanked that and I started crying because I couldn't drive. I drive, I drove a moped, I love mopeds. I've been brought up with bikes all my life and I've had one since I was 16, and when they said that I'd just bought a brand new bike two weeks before I was diagnosed, and they said oh you know you'll have to stop driving. If you don't tell the DVLA, we will. So I had to stop that day, I couldn't even get one last ride out of it and I was absolutely distraught, I didn't care about the epilepsy, I just wanted to drive my bike. Because that was my way of like getting away from things 'cos I can't drive a car, I could just go anywhere on my bike and get away from everything, but now if I want to go out somewhere, I can't really go that many places. I can't get away, not as quickly as I could on my bike and just go.
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.
Alistair said his diagnosis was 'a shock to the system' but processing it over time with family...
Alistair said his diagnosis was 'a shock to the system' but processing it over time with family...
Age at interview: 18
Sex: Male
Age at diagnosis: 16
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But the GP did say it could be epilepsy, but he didn't actually specialise in that until I went to see the consultant and I was told that it was epilepsy. It was a shock to me system but I was expecting it. It wasn't as if I went in one day and he said you are epileptic. You know it was over a gradual period. Family had been able to support me as well. Family has helped me through it so far.
Do you remember more about those feelings at that time when you got diagnosed. You said it was a shock to the system?
Yes. When I was first found out. I didn't know what to do. I thought if I go out with me friends, what happens if I've one. So I thought straight away what do I do. So I told friends. Friends were informed straight away. I sat down and had a talk with them, the same with school. They were informed straight away. And it were, like I say it was shock to my system, but over a period of time it did come out of my mind. Some days I would forget that I had got epilepsy and then some days, like now, time is getting on because of being able to drive and I sit there thinking sometimes in work just thinking what happens, just making sure that me tablets are taken on time.
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.
Being diagnosed with epilepsy at 13 was very hard for Bex because she felt it made her different...
Being diagnosed with epilepsy at 13 was very hard for Bex because she felt it made her different...
Age at interview: 20
Sex: Female
Age at diagnosis: 13
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I was diagnosed with photosensitive epilepsy and was put on a medication, I can't think what it was called. But I was put on medication and then was told obviously that it would take about six months but for it to work. But I was given loads of leaflets type thing and given a long list of different organisations that could help, different nurses and things. To be honest I didn't find it that helpful because at the time I was, you know I was very young, and I was just going into my teens [laugh], you know hitting puberty and really just wanted to be a normal teenager type thing. And they wanted me to make decisions I didn't really want to make you know, which medication I was going to go on, which was not the sort of thing I really wanted to be thinking about. I found it very difficult, you know, thirteen to be trying to live a different life to my friends, a lot of friends didn't react well to it. They supported me, but they were 'it was like they went through a grieving process in a way because they weren't quite sure what to do, and they didn't really know anything about epilepsy, so I think it has changed in ten years, but you know, I lost a lot of friends through that. So that was very hard.
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.
Holly felt angry about the way people behaved after the diagnosis.
Holly felt angry about the way people behaved after the diagnosis.
Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Like the first few months of after diagnosis and then, I started getting a bit angry, yeah, I got a bit angry. I got a bit angry about the way my friends had treated me, I felt a bit angry that, this isn't how it was, but it was how it felt at the time, that my parents were making it about them, that made me angry. I felt angry that my doctors kept telling me that I was just depressed and seemed to be discounting this completely awful way that I was feeling, that made me angry.
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.
When first diagnosed, Charli said she didn't take the diagnosis seriously. She wouldn't start her...
When first diagnosed, Charli said she didn't take the diagnosis seriously. She wouldn't start her...
Age at interview: 23
Sex: Female
Age at diagnosis: 18
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It did worry me when I first found out I had epilepsy. I just didn't really know too much about it but now I'm better and I'm coping, I know more about it and stuff, well you learn to live with it, and people around me are more understanding, and they understand what to do if I have a fit, so it's just confidence really, and getting your confidence back because it is quite a bit of a knock. But to be honest, in the beginning when I was first diagnosed, like I said, I didn't really care. I didn't really care that I'd been, that I'd been diagnosed with epilepsy like, I was just so ignorant, and it wasn't until like I had a couple of quite severe fits that I realised that I've got to start taking my medication. My self-esteem I think took a drop then, do you know what I mean? When I realised, "Look Charli this is serious now, you've got to start taking your medication", and that's when my confidence dropped and I thought, "Oh like it's gonna be difficult". That's when I started getting anxious and worried about things so it all sort of started from there. A couple of years ago really my anxiousness, at the beginning, I didn't care.
Do you think you just wanted to deny the whole thing?
I think so yeah, yeah, probably, I didn't wanna admit the truth. I was kind of embarrassed I suppose.
Nick says he 'coped with it by not coping with it' and detached himself from it because worrying...
Nick says he 'coped with it by not coping with it' and detached himself from it because worrying...
Age at interview: 21
Sex: Male
Age at diagnosis: 15
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I suppose to coin the phrase; I coped with it by not coping with it. Its not the best way you might look at it psychologically, but from my point of view if I don't think about a problem, if worrying about it and thinking about it all the time isn't gonna solve that problem, which isn't true for all problems, but for some it is, like this, then the best thing to do is not think about it. Is to say right, that's gonna go over there, that's to be dealt with and worried about when I have to deal and worry with it. So that's what I did really. I just didn't think about it, I did my GCSEs, I got on with my life, I did my A-levels, I had enjoyed myself a bit you know, that was just it really. I just got on with my school life, got on with my education, got on with my friends, just lived, live the life you're supposed to live I suppose. But obviously not to the full extent and I was always conscious that I shouldn't drink, I shouldn't you know do drugs, I shouldn't do anything like that, anything that might interfere with my medication. I suppose that was slightly limiting in that respect but you know, I suppose from an adult's point of view that's probably a good thing, but from a kid's point of view, not such a good thing [laughs].
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.
Anna says it took her a while to realise that giving her problem a name had made things better...
Anna says it took her a while to realise that giving her problem a name had made things better...
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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I think it's difficult to kind of go back to it, because it was being eleven, I just remember being, I was kind of disappointed and frustrated that I desperately didn't want epilepsy because I think it was more, it was the word it's quite sort of it carried it's a heavy word. And then actually when I realised that it was just a word for what I was doing anyway, at least if I had diagnosis then you could be treated for it, and it gets better rather than getting worse. But I just didn't want to go to the neurologist and didn't want to be different I think was the thing, 'cos typically kind of being eleven and just not wanting to stand out or be different. And then it was fine, it made me fit in more because I could at least then be treated as kind of to engage more with other people and not be as affected by the seizures, which was better but for a short time it felt like things were a lot worse.
I think it's important to, that I was more frightened of the diagnosis when actually the diagnosis was very helpful and made things a lot better. I was worried that sort of giving it a name would make things worse, when giving it a name sort of meant that I could get treatment, medication, and it was a positive thing rather than a negative thing. Being sort of less reluctant about that and it didn't matter what it was called, what was important was sort of working out what was wrong and then how to make it better and sort of being able to live with it. That was much better than leaving it undiagnosed.
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'.
Carole says the diagnosis proved she wasn't 'making it up' and explained why she had a poor memory.
Carole says the diagnosis proved she wasn't 'making it up' and explained why she had a poor memory.
Age at interview: 20
Sex: Female
Age at diagnosis: 18
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When I'd got it and it was all this secondary generalised right central focus temporal I was like well what on earth is all that about? I did have to go and ask a few questions on what on earth some of the stuff meant but it was a relief that at last they had confirmed it. I wasn't some sort of weirdo that was making it up. They had actually found something at last and where the scar was and why that was causing my memory loss. It was just the jigsaw puzzle kind of came together when it came through and it made a lot more sense for the neurologist. So I think that's also helped with the consultations as well when you can go and they can say, 'Yes, I know why now you're having memory problems because it's that part of the brain.' And they can tell you a lot more information now they know, so it's not so much up in the air, sitting down, 'Right I'm still having this problem, what shall we talk about this time?' Now it's more, 'Let's get down it, and sort it out.'
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.
Rania's confidence improved a lot after she got the diagnosis and it helped her to stop being...
Rania's confidence improved a lot after she got the diagnosis and it helped her to stop being...
Age at interview: 16
Sex: Female
Age at diagnosis: 15
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Well, it changed my life a lot once I got the diagnosis because you know I knew that there was something wrong. I'd get the medicine, it improved my confidence a lot more as well. Before I used to, all this going through all them doctors and them telling me all that stuff. I didn't really do much or socialise with people that much in case they all saw me as, you know that kind of person. After I'd got the diagnosis I was more confident I just went out and spoke to people and did things.
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'.
Becky got the diagnosis when she was 15 and she was happy she was not photosensitive and could...
Becky got the diagnosis when she was 15 and she was happy she was not photosensitive and could...
Age at interview: 23
Sex: Female
Age at diagnosis: 15
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Then obviously because it was private the doctor came around to my house to give us the results, and he had said that I had epilepsy. I remember actually not being too bothered really, because he said to me you haven't got photosensitive epilepsy, and I remember at that time thinking, 'Oh fabulous, I can still go out clubbing.' I suppose at the age of 15 that was a pretty immature thing to say, or to think, but at that point that was what my life, that was what my life revolved around, you know. I was 15 and all I wanted to do was go out and have a good time with my friends. So at the age of 15 when they told me that I just thought ah that's fine, as long as I can still go out to the clubs and stuff I don't really mind. But they said that I didn't have photosensitive epilepsy and that my epilepsy was triggered by stress, and over tiredness excessive amounts of alcohol, things like that.
Last reviewed May 2016.
Last updated May 2010.
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