Annette - Interview 31
Annettte was diagnosed with epilepsy when she was 15 years old. Before her diagnosis she was going through what she described as a 'very rebellious phase' and both drinking a great deal and taking illegal drugs. After her diagnosis she stopped taking illegal drugs and nowadays she hardly drinks alcohol at all. Family and friends have been very supportive.
Annette studies full time and lives at home with her parents and two siblings. Ethnic background/nationality' European.
More about me...
Annette was diagnosed with epilepsy when she was 15 years old. She said that before her diagnosis she was going through what she described as 'a very rebellious phase' and both drinking a great deal of alcohol and taking illegal drugs.
When she went to her first hospital appointment Annette told the consultant about her drug taking but then felt judged by her and her consultant's initial disapproving attitude became an obstacle in their relationship. Annette did not trust her. She stopped taking the illegal drugs after her diagnosis - except for one occasion - but then was too frightened to do it again.
She thinks the NHS did not know how to deal with her. She became depressed and lost her confidence after diagnosis but she was never offered any counselling. Over the years she has seen a number of consultants but said that the most supportive and encouraging person that has looked after her, has been her nurse.
Soon after diagnosis she went travelling with a friend and during this time did not take care of herself very well. She was drinking, not eating and had two seizures while abroad. In retrospect she knows that she was 'in denial' of her epilepsy and pretending to be just like everyone else i.e. to be completely 'normal'.
Annette says that drinking alcohol is a big part of youth culture in the UK and that as a teenager she found that she very much wanted to fit in with what her friends were doing. As a teenager and after her diagnosis she found it particularly difficult to drink in moderation but nowadays she hardly drinks alcohol at all. She said that lack of sleep and too much alcohol made her twitch a lot in her sleep and she tended to have more 'jerks'.
Her friendship group was much based around her drug taking and she was worried that she would be excluded from the group when she stopped taking the drugs that they were 'into', but her friends have been very supportive and after her diagnosis they provided a great deal of encouragement for her to stop taking drugs.
She says that it has taken her a few years to come to terms with her condition and to understand that having epilepsy doesn't stop her from living a normal life and doing the things she wants do to.
She felt isolated when she was not talking to anyone about her epilepsy.
She felt isolated when she was not talking to anyone about her epilepsy.
Can you tell me more about it?
Well, I think it was, it was sort of like partly to do with feeling isolated and not having anyone being able to actually really understand how it felt. Like I didn't feel like anyone could understand me. I felt really quite alone. And I didn't talk about it with many people at the time, like I have done since. But at the time it really, it really isolated me and I felt like a bit of a freak. And I didn't want to talk to people about it because I didn't want people to know. And, yes, I was just, it just made me really unhappy and I felt like I couldn't do what I wanted and that I was going to miss out on all, on this big part of life. I don't really know what I thought I was going to miss out on at the time to be honest, but I, that's how it, it made me feel like I was going to miss out on life. And like again with the drug taking, like because I wasn't going to be able to do that, I was like, 'Oh, you know, all my friends are going to go off without me and do what they want. And I'm not going to be able to do anything'. And in a way it was a bit pathetic actually. And I look back and I'm like, 'God, how stupid was I to think that'. Like really, you know, I just needed someone to give me a good slap and tell me to pull myself together. But, you know, at that age I don't think it would have helped. No one could have said anything to make it any better. Because it was, I had to come to terms with it myself. I had to accept it. And I didn't accept it for, you know, a good year I think. And even after that it was still a bit, like a bit hit and miss. Sometimes, some days I'd feel okay about it, and other days I'd feel like shit. And angry as well. Like I felt quite, I think it, the depression was like a mixture of feeling alone, unhappy and, and also really angry that I had, that I had this. It was like, 'Why? Why, what have I done to deserve this fucking annoying illness that is going to like plague me and ruin my life?' Because that's sort of how I looked at it is, I really thought it was going to ruin my life.
And, yes, not talking about it was definitely not helping. And I wasn't, I think they, I think the doctors gave me a leaflet for Epilepsy in Action, I think it was. And they were like, 'Oh, there are support groups. There's this, there's that'. And that was it. But I don't remember anyone sort of saying, 'Right, I think we'll make you an appointment'. You know, because at that age you don't, you're not going to seek help. You're not going to go, go, 'Oh, yes, I'm going to go and join the support group'. Because a) it makes you feel even more like a freak and, you know, 'I don't need a support group. I'm fine. I'm an adult' you know. Hell, no, you're not. You're a child at that age. But you think you're an adult and you think you can cope with everything and you think everything is going to be fine. And it's only, it's, it's only like after it's happened and after I'd been through all that, that I could look back on it and think, 'Shit. Why did I not go to any of these things? Why didn't I go and see a counsellor about it? Why didn't I go to the support group?' Because probably if I'd have done those things I would have understood it better and probably not felt so unhappy about it. Because you do get a bit of a, 'Poor me' like, 'Oh, my God, my life is so bad' you know.
In her teens it was difficult for her to accept that for medical reasons she couldn't go out and...
In her teens it was difficult for her to accept that for medical reasons she couldn't go out and...
Like I have jerks. It's like, they're myoclonic jerks, like my arm will just sort of flip out and like hit someone or something.
So it's an involuntary movement?
Yes, yes. And that's part of my epilepsy. The sort of epilepsy that I have is that I do have jerks. And they're controlled by my, by my medication now. But again if I drink or don't get enough sleep then I have more jerks and I twitch more in my sleep. Like my boyfriend noticed it loads. Like I, I used to be a lot worse, but I, my, I increased my, my doctor increased my dose of my medication and that seems to have controlled it. But if I drink alcohol, if I drink too much, I, I twitch more like.
Have you reduced the amount of alcohol you drink?
Yes, yes, I don't drink very much any more really. Like, and actually it's quite good, because I'm quite a cheap date now. I get drunk quite easily, so I don't have to drink very much to get drunk. Which is excellent, because it's cheap. But that was quite annoying initially.
Yes, I suppose because I mean alcohol is very much part of youth culture.
Big, particularly in this country, particularly in this country. Yes, I mean, yes, all, you know, everyone, all my friends go out and get pissed and, you know, quite a lot. And I can't, I can't do it very often. Like I've sort of, you know, I can have like a glass of wine in the evenings and stuff. And, you know, if I know that I'm going to be going out at the weekend, I don't drink during the week. Which actually doesn't make any difference really, because if I drink a lot of alcohol I twitch. But I sort of justify it with myself by saving up my alcohol for like a night out, if you know what I mean. But, yes, I mean it does definitely affect me a lot more so than it ever, ever used to and it, than it affects like people without epilepsy. Like they can sort of drink and not have to worry about that. But it worries me. So I don't do it.
Does it make you feel different, the fact that if you go out with friends you know that you can't drink that much alcohol? Or, or it's not that relevant now?
Now, it's not relevant really. I don't, I don't let it bother me.
But before?
Before it did, yes. Because I, it would be, it was quite annoying. Because I'd want to go out and, you know, get just as drunk as my friends and be just as stupid as they were. But, yes, you just, it's, you just have to deal with it really and like just get on with it. There's no point in, in, like, like now it doesn't upset me at all. And I actually think, well, you know, I've seen the damage that alcohol does to your body. So it's actually quite a good thing that I don't drink too much.
Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is...
Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is...
Well, I was, I think I'd just turned 17 when I got officially diagnosed. But I'd had one seizure prior to being diagnosed, but they weren't sure if it was a seizure or not. So, it was like, more like a faint. And, and then the f-, like the first major seizure I had, which was, because I've got, juvenile myoclonic epilepsy is what it's called, although they sort of said I might grow out of it when I was 20. But I haven't, because I've had a few seizures since then. But yes, I was 17 and going through quite a rebellious phase in my life. And I was going out partying a lot and sort of I was quite into taking drugs at the time. And I was, you know, sort of my friendship group was based around that and going out raving a lot and going to listen to drum and bass. And sort of I was quite wild at the time. And when, when I had to go after my first seizure to see the neurologist and stuff, I was quite nervous to sort of be honest with them about my life, because, you know, I didn't really tell my parents what I was doing. And it was quite, it was quite scary like to sort of trust, you know, trust the doctors enough to sort of be open with them about what I was doing, so they could have a real picture of my life. And I remember when I did tell the specialist that I went and saw that I'd taken Ecstasy, she looked really, like sort of really quite frowned on me, and I felt really judged by her. Which was really unhelpful at the time because it made me sort of not want to talk to the doctors really about what I was feeling and stuff.
And I feel that in the, in the NHS, like I don't think they were very good at sort of knowing how to deal with me. Like I wasn't ever offered any counselling or anything like that. And looking, it's quite easy now, because I can look back on it sort of with more mature eyes I suppose and see where I was going wrong. But it definitely sent me into a massive depression and I lost loads of confidence and was, I was really unhappy and felt like my whole life had sort of been taken away from me and everything I'd known was not going to be the same again because I couldn't do what I wanted. I felt quite restricted by it. And I was quite scared that I'd have a fit when I was sort of walking down the street or something and people would just, you know, point and stare and stuff. And like you can, when you have fits you can like, you can wet yourself and stuff like that. And that really sort of really panicked me. I felt like, you know, I was sort of, been regressed to being a little kid again. Which was really, really scary.
And I think about three months after I was diagnosed I went to Nepal with a friend of mine for two months and went completely off the rails out there and was drink, like I was just, with my medication you have to start off on a really low dose and then each week, I think it was every week, I had to go up, it was 25 grams or something, I can't remember, or milligrams. And, yes, I was doing that when I was out there, but I was drinking a lot and not eating anything and just really not looking after myself at all. And just, yes, I sort of, I think I was trying to sort of deny the fact that I had it when I was out there.
Discusses friend's attitudes, learning from own experience, giving up illegal drugs and the lack...
Discusses friend's attitudes, learning from own experience, giving up illegal drugs and the lack...
So you remained with the same group of friends?
Yes, although I was more wary of going out with them. And I know that they were more wary of me coming out with them like just like when we'd all go out clubbing and stuff. And they, because they all carried on taking drugs. So, you know, they were a bit, they sometimes, I know one of my friends felt guilty like taking drugs in front of me, because I couldn't. She felt a bit bad. But I was always like, 'No, it's fine. You guys go ahead. It's quite amusing to watch you actually. People on drugs look awful'. And it's, yes, one way to put people off taking drugs is to see people who take drugs. And when you're sober and you see people on Ecstasy and things they look completely nutty and actually quite horrible. And I'm quite, I sort of see it in as a blessing in disguise. Like when I got diagnosed I was getting so into taking drugs that I think I could have, if I hadn't have been diagnosed with epilepsy, gone down a bit more of a dark route, in that with my drug taking it could have got a lot worse. And it sort of hit the nail on the head really. It stopped me in many ways.
So you stopped completely taking drugs after that?
Yes, apart from smoking cannabis. I carried on smoking weed and I smoked weed for quite a long time. I gave up a few months ago. But that, I mean the doctors never said anything about that to me. And it's something that they didn't talk about at all like was the fact that, you know, other than, 'You can't take drugs' and, 'It's really bad for your epilepsy to take drugs'. That was sort of it.
Did you want to ask the doctors?
Yes.
But you didn't.
No, because of the reaction I got when I, when she asked me if I'd, you know, when she said, you know, 'Had you taken anything before you had that fit?' And I said, 'Yes, I'd, I'd taken Ecstasy the night before and had smoked weed'. And the, the way she looked at me. It was just like, I felt like I was at school again, like I was a little kid and I was being like told off sort of thing. And so I was like, 'Oh my God. Right, definitely not going to, definitely not going to disclose anything else about that'. Because it just, I felt like I was a little kid again and I was being told off for being naughty, you know, and just being judged like and being looked at as though I was a complete, you know, fuck-up rather than, you know, actually most teenagers nowadays do take drugs at some point in their life. And it's something that I think, like particularly if you're dealing with teenagers who are being diagnosed with illnesses, like that you have to be honest about and you have to talk to them about it. And you have to sort of say, 'This is what you can do. This is what you can't do. You know, if you do do this, this is the safe way of taking drugs if you're going to do it'. I mean with epilepsy, Ecstasy and cocaine and stuff are just a big no-no really. I think they do sort of cause you to have seizures if you take them. I don't know, because I've stopped taking them. I think, actually I tell a lie, I did take coke once after I was diagnosed and I was really scared. I did it with two, with my two girlfriend's, and I was like, 'Oh'. Like everyone was getting, everyone was getting really fucked. It was, I think it was at New Year and I was like, 'Oh, fuck it, I'm just going to have a little bit and, and see what happens'. And, and they were like, 'No, don't. We don't want you to have a fit on New Year's. That would be shit. You'll ruin our New Year's'. And I was like, 'I don't care. I want to have a good New Year's'. So I think I did take a little line of coke and it did make me feel ve
Her biggest criticism is that consultants are ill prepared to advice young people about illegal...
Her biggest criticism is that consultants are ill prepared to advice young people about illegal...
Yes, apart from smoking cannabis. I carried on smoking weed and I smoked weed for quite a long time. I gave up a few months ago. But that, I mean the doctors never said anything about that to me. And it's something that they didn't talk about at all like was the fact that, you know, other than, 'You can't take drugs' and, 'It's really bad for your epilepsy to take drugs'. That was sort of it.
Did you want to ask the doctors?
Yes.
But you didn't.
No, because of the reaction I got when I, when she asked me if I'd, you know, when she said, you know, 'Had you taken anything before you had that fit?' And I said, 'Yes, I'd, I'd taken Ecstasy the night before and had smoked weed'. And the, the way she looked at me. It was just like, I felt like I was at school again, like I was a little kid and I was being like told off sort of thing. And so I was like, 'Oh my God. Right, definitely not going to, definitely not going to disclose anything else about that'. Because it just, I felt like I was a little kid again and I was being told off for being naughty, you know, and just re-, being judged like and being looked at as though I was a complete, you know, fuck-up rather than, you know, actually most teenagers nowadays do take drugs at some point in their life. And it's something that I think, like particularly if you're dealing with teenagers who are being, diagnosed with illnesses, like that you have to be honest about and you have to talk to them about it. And you have to sort of say, 'This is what you can do. This is what you can't do. You know, if you do do this, this is the safe way of taking drugs if you're going to do it'. I mean with epilepsy, Ecstasy and cocaine and stuff are just a big no-no really. I think they do sort of cause you to have seizures if you take them. I don't know, because I've stopped taking them.
But it would have been good and very useful to you to know, to have had this open discussion with your doctor?
Definitely. But I mean, that for me, that's my biggest criticism of the doctors, is that I don't think they're very open to talk about those sorts of things. Or they weren't, they weren't with me.
Her doctor said that strobe lights could cause a seizure. When she goes to clubs she tells them...
Her doctor said that strobe lights could cause a seizure. When she goes to clubs she tells them...
And like I don't, it's quite difficult because none of them have, like my female friends, those three, have never, they've never been like, like, to, to me anyway, like I don't know if perhaps in their, you know, with, within each other they've been a bit like, 'Shit, you know, should we take, should we go out with her clubbing again?' you know. And one of the things that the doctor said was that strobe lights could affect me having a fit. But they never have. I mean I've been into lots of clubs and there have been strobe lights. Usually I tell, go up to the DJ, because they have the control of the strobe lights, and I'm like, 'Excuse me, I've got epilepsy. Can you not put it on for too long, because it makes my eyes go weird?' And they're like, 'Okay, right'. And they don't usually do it after that. Because the club owners don't want things like that happening in their, in their places, because it's not good, not good PR for them really, is it? But, yes, I think those four were quite, quite supportive. And they didn't sort of stop me from coming out with them and stuff. And they were just a bit more wary I think.