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Long term health conditions (young people)

Alcohol, smoking and recreational drugs with a long-term condition

According to the young people who took part in this project, alcohol is very much part of British youth culture. They talked about alcohol far more than smoking or illegal drugs. Young people talked about their attitude to alcohol, their concerns about medication and drinking alcohol, the advice they got from their doctors and their own experiences.

Alcohol

Many young people found that the 'culture of drinking' was hard to handle when they were teenagers because they wanted to do what their friends were doing. Although as teenagers they hadn't understood the seriousness of their condition many said that they were still worried about drinking alcohol. One young woman said that, in her teenage years, she'd found it difficult to ask for advice about alcohol from her medical team because she used to go and see them with her parents. Several said they have learned from experience how much they can drink and now they either drink in moderation or not at all. In a few cases excessive drinking resulted in serious medical problems and they'd had to go to hospital. 

 

She thought that alcohol didn't affect her but one time she drank a lot and ended up in hospital...

She thought that alcohol didn't affect her but one time she drank a lot and ended up in hospital...

Age at interview: 19
Sex: Female
Age at diagnosis: 8
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What does it mean for a person with CF to drink alcohol? I mean can you do it? What do the doctors advise you? How do you feel?

Yeah. Well I first got drunk or not drunk, I was first sick of alcohol, whether I was drunk or not I don't know, when I was quite young. When I was like, with some family friends at like a weekend away and we like snuck some bottles of Bacardi Breezers and I ended up being sick off a top bunk. And that was enough to put me off alcohol until I was about 16 like. And I started to drink socially at parties out with friends and then when I started going out round pubs when I was like 16, 17. I'd drink at the weekends. Like I wasn't drinking an excess amount of alcohol. I was just drinking about the same as all my friends and just getting tipsy and having good fun. And it was, it was, it was absolutely fine. Like it was fine having CF for me and drinking alcohol. It was. It wasn't a problem. It didn't really affect, it didn't affect me any more than it affected my friends. 

And everything was fine. And then when I was 17 it was one occasion when I had more than I'd ever had before. And that was when I ended up in hospital 'cause I'd been at a party for about twelve hours. It was a party that started. It was like started at like 4 in the afternoon and went on 'til like 4 in the morning. And I drunk an excess amount that I've not, I'd never drunk that much before. And that was when my body really reacted to it. And that's when I ended up in hospital. And that's, I've never drunk since then. And I'm not sure if anyone else has ever had that sort of experience but I don't really know 'cause I can't drink anymore.

I have had the odd drink since and I've always got the same sort of pain that I had when I had acute pancreatitis. And I just thought well it's not worth it because acute pancreatitis is such a serious condition and is so painful it just wouldn't be worth drinking for the risk of that happening again. So now I don't drink.

I luckily, I manage to have a good time without it and it doesn't really affect me too much. The only time it affects me is when everyone else is really, really drunk and I'm not really hyper. 'Cause I get quite hyper and quite full of life when I go out anyway. But if I'm tired or not, not really with it and everyone else is really drunk then I get a bit fed up. But that doesn't really happen very often. So I have a. I always manage to have a really good time without it.

 

She drank a lot of vodka which triggered a sickle cell crisis. She still remembers the pain and...

She drank a lot of vodka which triggered a sickle cell crisis. She still remembers the pain and...

Age at interview: 17
Sex: Female
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And then when I was at school and in school I was restricted from a lot of things. Going out with my friends and stuff and that I, I couldn't drink even though I don't want to drink but you know, I've tried like a drink or so but it has, it did have, it gave me a sickle-cell attack in the chest and it was very, very bad. I had it for like. I had the attack for, or the pain for about two weeks, two, three weeks with the pain.

And this was after you drank alcohol?

Yeah after I drank alcohol so I've never drank since. I don't really like it anyway. My... In high school a lot of my friends really liked sports either if it was gymnastics or to football or trampolining or something. I like sports as well but I had to, you know, restrain myself from a lot of it. Yeah so. Yeah I liked football as well because I was a tomboy in the high school and I liked football and everything. And I wanted to be in the boy's side but I wasn't allowed to because of the sickle cell. And it was very scared about if I had an attack or something. Yeah so.

And tell me about that episode when you drank alcohol?

Yeah. Well it was my friend's birthday and we went out to go see a brother, friend. We gathered together. Put our money together and we knew we were going to have a good time. So we bought some vodka like, more about ok. About a bottle this big for ourselves each. So we had a bottle and we were having a good time and everyone was just like, 'Ok I dare you to drink the whole bottle in 10 seconds' or something like that or in a certain amount of time. I was thinking alright then I've got to do this. So I was like 'Ready'. And then I drank it, drank it, drank it and I felt sick after. I just threw the bottle into the, the railway of the train and stuff. And thinking, 'Right then I did it. Like yeah, well done, well done.' 

And after a while it was just, it was outside as well, I was on the street. So I had the vodka and then I had the, I was outside as well to make it even worse. And then after about an hour and a half we were just, you know sitting down, just talking about an hour and a half. I had this big, deep, sharp pain in my chest and all around my stomach. I was thinking, 'What is this? What is?' I thought I was going to die. And we was outside, it was just like at the train station and I, I seriously thought I was going to die and I just fell on the floor and I was like, I was screaming and screaming and my friends were like, 'Oh Misha what's, what's going on? What's wrong?' And I was like, 'It's a sickle cell attack, it's a sickle cell attack.' 

And because they'd never been there when I've had an attack they were so scared. They were going to ring the ambulance and everything. And so it was like, 'What, what shall we do?' I said, 'Let me just go home, let me just go home.' So we had to travel on a train and on a bus and while I was on the bus I was still screaming and I was praying that, 'Oh god just take this pain off of me right now'. People on the bus just thought I was crazy. They thought I was possibly going through labour or something. And we got to the girl's house and I just went to the, we went to sleep. You know she told me to eat something first because it's like well you don't really eat something then you haven't got the strength to, you know, encourage yourself and say, 'Hey this pain can go, this pain can go.' And we had all. And then she made me a hot drink as well. 

But during the night I was tossing and turning. You like, it takes you hours upon hours to get to sleep because the pain is just so much that you, you just can't, you can't sleep. So I went to sleep about, like we got

Many young people pointed out that it's difficult to know what will happen if you drink alcohol because everybody reacts differently to it. There can be differences between two people with the same condition there are often variations and the medications and treatments could be different too. For instance one young woman with epilepsy said that alcohol doesn't seem to affect her while another girl with epilepsy says she needs to be careful about the amount of alcohol she drinks because otherwise she will get myoclonic jerks (quick, involuntary, twitching of muscles). These symptoms are controlled by medication but doctors told her not to drink too much alcohol because it stopped the medication from working. Nowadays, she drinks very little.

 

She does drink alcohol and it doesn't affect her but she was worried about her epilepsy and...

She does drink alcohol and it doesn't affect her but she was worried about her epilepsy and...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Because I was 15, it's the time during the teenage years where you're experimenting with, you know, maybe drinking or you're staying out late, and I was worried about that as well. You know, 'What was going to happen if I had a few beers, you know, like the rest of my friends? Was something going to happen? Was my epilepsy going to get worse?' That kind of thing. So, so, yes, I had worries about that.

Did anybody explain to you about  drinking and, and epilepsy. What it would happen?

No, no. I mean I guess with, with a lot of conditions, it's difficult, because it's so different for everybody. And often it's a case of kind of finding your own way and finding what affects you. So in my case, you know, having some alcohol, I don't know if I am able to say this, having some alcohol doesn't present a problem. For another person it might present a problem. But for me personally it doesn't make my condition any worse. So...

For me, you know, alcohol doesn't, doesn't present a problem. Which, which is good. But certainly it was a concern, you know, when I was first diagnosed.

 

In her teens it was difficult for her to accept that for medical reasons she couldn't go out and...

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In her teens it was difficult for her to accept that for medical reasons she couldn't go out and...

Age at interview: 19
Sex: Female
Age at diagnosis: 16
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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. 

Many of the young people we talked to said they drink very little alcohol or none at all. Some said their consultants have warned them against excessive drinking because alcohol in combination with certain medication can heighten liver damage. One young woman with rheumatoid arthritis has an extreme view on drinking alcohol and smoking and says that those who smoke or drink are 'unworthy of treatment'. One young man, also with arthritis, thinks that the message should be to make young people aware that if they are on medication they need to be very careful with alcohol. He usually has only one or two drinks.

 

Argues that people who smoke and drink do not deserve their free treatment. Says that people who...

Argues that people who smoke and drink do not deserve their free treatment. Says that people who...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Like I say I don't tend to change my diet too much but at the same time I, I don't drink alcohol and I don't smoke and I think that's very important to keep yourself healthy because if I did those things as well then I don't think I would deserve the new drug that I'm on. I don't think I would deserve most of the drugs that I take. 'Cos if you're not putting in the effort in yourself then sometimes I don't think that you deserve, you know, some of the ground breaking drugs that are on offer unless you're prepared to put in the hard work as well with it.

And I would also advise I know it's, it's difficult if you're used to smoking or drinking but I've, I've spoken to people about it and they've cut out alcohol completely and the effects have been mind blowing. They've felt the arthritis completely ease up and likewise with smoking as well.

 

Says that young people on medication ought to be very careful when drinking alcohol. He is not...

Says that young people on medication ought to be very careful when drinking alcohol. He is not...

Age at interview: 23
Sex: Male
Age at diagnosis: 2
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I can't remember. I mean it has always been said that you shouldn't drink or you should drink in extreme moderation. Because you know you are on the medications and that you shouldn't really drink. Or if you do you have to be extremely careful. I mean I have always known that anyway, and I didn't really drink up until I went to university and you now was when I was 20 and I mean it is only in moderation now. Now I am always extremely careful but there is probably some people that shouldn't drink at all. Because of their illness etc. So be extremely careful.

Yes and does alcohol interfere with your medication in your case?

Well I think it' I don't know of any effects from it. I mean I am never, I mean I am on drugs that you can't drink or you shouldn't drink or only have a little bit but I have never been affected by it. You know I don't get any reaction you know so I can still have a good time, if you like. And no there are some people that it probably would affect. Everyone is different and they can take certain things.

Young people felt that they were also affected by the attitude of the friends they went out with. Several said that they feel comfortable going out with friends that don't put them under pressure to drink. Those who don't drink any alcohol when they go out with their friends said they could relax and enjoy themselves without drinking. But sometimes they found it difficult to explain why they don't drink any alcohol to people they don't know very well. Another girl said that for her the problem was that her friends would end up drunk and she will be the only one sober. Of course, it can be funny to see friends drunk. 

 

She is generally open about her cystic fibrosis and thinks that is it better to tell others the...

She is generally open about her cystic fibrosis and thinks that is it better to tell others the...

Age at interview: 19
Sex: Female
Age at diagnosis: 8
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I'm always very open about my CF. And I just told if anyone asked like for example the reason, obviously I don't drink alcohol. If anyone ever said to me, 'Oh, oh why don't you drink?' Sometimes I would just say, 'Oh because I don't want to.' But then other times I would actually explain it to them 'cause I think it's good for more people to be aware of CF. And if I feel like I don't know, explaining it to them if I've got the time and energy then I will, I will explain it to them. And I think it's good that more people are aware of it.  

What do you, what do you say?

What do I say?

Yeah.

Well say for example last night I was out with all my housemates' and all my friends and then there was another group of people there. One of the, one of the people we knew and they kind of came over and we all introduced them and then said 'Hi'. And then someone was like, 'Oh I, I'll get the drinks, like what do you want to drink?' And if I just said, 'A coke' they'd be like, 'What a coke and vodka?' And I'd be like, 'Oh no no, no just a coke'. And they were like, 'Why?' And I'd be like  'Because I don't drink.' And sometimes they'll go, 'What?' Like 'Why don't you drink? That's just weird.' Like that. It depends like different people have different responses. Some people are like, 'Alright, ok you don't drink.' And they kind of like, 'Oh like why don't you drink if you mind me asking?' And I kind of say, 'Well do you want the short story or the long story?' [laugh].

And then if they say, 'Well how does that affect your pancreas?' I'll say, 'Well when I was 17 I had got acute pancreatitis  and it's, well it's left my pancreas quite delicate and I'm worried that if I drink again then it could. If I drink alcohol then it could set it off because alcohol is, obviously affects the pancreas.  And then people always go, 'Oh right.' [laugh]. Sometimes they ask more questions and sometimes they don't but usually it shuts them up when I say I've got CF.

Last, not last week, a couple of weeks ago I was in I was in Leeds staying with one of my friends and we were at a Halloween Ball. And he was helping to organise it so I said to him, I said, 'Oh well I'll serve out like. I don't really know many people here so I'll like help you if you want'. So I said, 'Well I'll serve out the punch'. And he's like left me to it and a group of guys walked past and I gave them the punch and they were like, 'Oh do you want some?' And I was like, 'Oh no I'm ok thanks.' And they were like, 'Oh have some, have some.' I was like, 'No' and like 'I'm, I'm alright'. Thanks like I'm fine I've got another drink. And they were like trying to make me drink this punch. It sounds daft but it was, it was kind of like they were just joking around. I was like, 'No, no, no.' And, and one of them went, 'Why, why don't you want it?' I was like, 'Oh well I can't drink alcohol'. And another one went, 'What?' And I, so I didn't say I can't, I said, 'I don't drink alcohol.' 

And on of them was like, 'What you don't drink alcohol? Are you a weirdo? Are you a freak? Is there something wrong with you?' And I was kind of like, 'Well actually [laugh] yes there is something wrong with me.' But my friend that, that was with me he knows that I'm really open about it. So he was like, 'Oh she's got CF.' And it was just, everyone kind of went quiet and kind of looked at me. And I just felt really, it was the first time in a long time that I've felt really kind of I don't know, like almost a bit like touchy about it like I didn't really want everyone to know. And like I just felt that everyone kind of looked at me and was like, 'Oh right'. And

One young woman with type 1 diabetes is grateful to her nurse for giving her information and advice about drinking, early on. She says that this has influenced her attitude because it has made her aware of the short and long term consequences of drinking alcohol.

 

She says that the advice and information given to her by the diabetes nurse have been most useful...

She says that the advice and information given to her by the diabetes nurse have been most useful...

Age at interview: 17
Sex: Female
Age at diagnosis: 6
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Okay so you were telling me about, that the nurses told you about drinking alcohol.

Yeah they explain to you when you're quite young, they kind of, I guess they want to filter into your brain before you get to eighteen and think 'oh let's go out and get drunk with all our friends' because I think once you go out and you get really drunk I think, I've been told you're more likely to become very drunk, very quickly if you've got diabetes and, also because you're drinking diet drinks, you go into' this new study said that if you drink diet drinks you're likely to get, drunk quicker, so, also  if you are drunk and you have a hypo you get, you're not gonna be as aware of your bodily functions and you, it can cause you to go into a fit, even a coma so it is important that you know what, that you know the effects of what alcohol's gonna do before you get there, so they kind of tell you every [laughs].

Has that information been useful to you? Have you applied what they have told you?

I've kept in mind what they said, I went to Barcelona with my school last year, or this year, and most of my friends got very, very drunk and because I told my friends I wasn't allowed to drink anything I'd have one alcoholic drink a night and that be it. They were all very, even when they were totally drunk they actually said, 'You have to only have one drink'. And they ordered me Diet Coke all night which was very nice of them, that I think if I had've, if I hadn't of known that alcohol would really affected me I may have drunk more than one glass and then probably got very drunk and not been able to get very drunk friends back to our hotel and they wouldn't have got me back to the hotel so, in a way it's done me good [laughs].

So that's information given to you early on was quite, is quite'

Yeah.

'useful?

I think it's very useful if you, you don't know what you're gonna be like until you're older ands, at the moment everybody around me is, well a lot of people around me are having a lot to drink, alcoholic-wise and, when you're offered a lot of alcohol you're very tempted to say yes but you know there's something inside you and you know that it's really awful to feel as if you're low and you've seen what drunkenness can do, make other people feel like, you don't wanna combine the com, you don't wanna combine the two so you do you stay away or you do choose to stay away [laughs] from the alcohol because that.

Okay and what about smoking, do you smoke?

I didn't smoke, I've always been told it's really nasty habit and we shouldn't do it, and I think that's kept me away but also the diabetes nurses, I can't remember the reason why they told me not to smoke but when I was younger they said, 'You shouldn't smoke and it's not gonna be best for your diabetes, it's gonna be beneficial to you if you don't smoke'. And I've kind of taken that on board and said, 'Right I don't wanna smoke, I'm not going to smoke, I'm gonna stay away from people who smoke'.

Do you think that having diabetes might have a kind of consequence for your social life or not?

I'm less inclined to drink because of my diabetes and I, my friends they kinda know that I'm, if I go to the party with them I'm gonna be the one who comes home sober which is a good thing for them because they've got someone who's gonna help them when they're throwing up everywhere but in a way, don't wanna go to all the parties because you know you're gonna be the one helping everybody else get home when they'

Smoking

Most of the young people we talked to didn't smoke and didn't approve of smoking - just a few have experimented with cigarettes. Those who experimented with smoking did so in their teens. A young woman with sickle cell disease said that the problem when you are a teenager is that you want to do things like smoking or drinking alcohol because your friends are doing it. One young woman with epilepsy said that she still smokes on a regular basis.

Many of the young people we talked to commented on the difficulties of avoiding smoky places when going out with friends to pubs or clubs or, when working in restaurants or bars -which some of the young people were doing during their A levels and university years - this has improved since the change in the law on smoking in enclosed public spaces in 2007. One young woman with cystic fibrosis says that when working in a restaurant she was affected by the smoke and had quite a few IV treatments during that time. A young man with mild asthma said that he is not too affected by smoky atmospheres. 

 

He says that his asthma would of course get worse if he were to start smoking and stop doing...

He says that his asthma would of course get worse if he were to start smoking and stop doing...

Age at interview: 18
Sex: Male
Age at diagnosis: 5
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Yeah I imagine if I, if I started smoking or I don't know, if I started taking drugs or if I stopped playing sport maybe. That, I think, I think that probably would make it worse, yeah definitely. But I hopefully won't have to come to that situation [laugh] so.

Talking about smoke if you are in a smoky place does it, does your chest get tight or?

No it doesn't seem to affect it but I don't usually hang around places that are smoky that much. Say if I've gone out to the pub or a night club if there's someone smoking I try and like move away, move to a place where they're not 'cause it's certainly the minority of people actually smoke at clubs and pubs so. And I think there's a new law coming in actually banning smoking in public places which would I think really help. So it's a really good idea. But I just move away from them if someone's smoking.

I avoid, avoid smoking yeah definitely.

What about alcohol? Do you drink alcohol?

Not on a regular basis no. I have a, one drink sometimes when I go out but not, I don't drink that much. So and it doesn't seem to affect it. So I'm not a heavy drinker so I don't know.

 

Says that she has wised up and advises other young people to understand that if they smoke or...

Says that she has wised up and advises other young people to understand that if they smoke or...

Age at interview: 17
Sex: Female
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Based on the experience of you and other young people that you have, that you know with sickle cell what do you think are the main problems or difficulties for young people?

With sickle cell?

Yeah.

The main problems? Just doing things that, that you would like to do. Like you just sometimes you just want to do what you want to do. Just I feel like doing this today so I want to do it. As a teenager that's what you feel sometimes. You think you know, I just want to do this so why can't I do it. But you can't [laugh] do that when you have sickle cell you don't, you need to be wise and you just need to. Yeah it's that's one of the main problems like if my, if my friend's doing this then why can't I do it. I'm the same as them but I just have something else and thus I think that's the problem sometimes.

Yeah because for some teenagers it must be difficult to, to grab that and to understand. 

Yeah. At some time, sometimes it's not, for some reason like teenagers they just want to smoke. They just want to smoke. Like I'm bad 'cause I'm smoking, yeah can you understand. So some sickle cell people always want to, some people with sickle cell they just want to smoke because they're friends are smoking and. I haven't really smoked like you know I've had a cigarette but I have tried it one time and it's not nice [laugh]. But there's. 

When I was in Year 9 or Year 10 or something I had like an Older. And like the Older is like a friend and they will help you in times of need and troubles and maybe if you have a, if you had a fight with your friend then he will come and help you and you know, be a person for you and give a quick view of certain tools and stuff. And at that age I was getting quite bad and I wasn't really focusing on anything. Like I wasn't going to school sometimes and this Older he used to smoke and he would like, I would smoke with him sometimes but after a while it just gets to the chest. So smoking and drinking is like, them two things they're not on my side. I hate them. Yeah. Even when like if someone's smoking and I'll walk past them it just gets to me. I just want to get, 'Oh gosh' It's just like. But them two things I've had experiences with them and it's not good don't think. I hate them. So sometimes when you're a teenager you just want to do what you want to do. If you can try and do what you want to do but you'll see that the more, the more you do what you want to do the more sickle cell attacks will come. You have to be wise and know I can't do this and I can't do that. So I'll do this instead.

Illegal drugs

One young woman talked to us about her experience of taking illegal drugs before she was diagnosed with epilepsy in her teens. She said that when she was diagnosed she was going through what she describes as a 'very rebellious' phase, staying out at parties and taking drugs. After her diagnosis she found out that having epilepsy meant that she could not take illegal drugs such as cocaine, ecstasy and heroin. She still wanted to take drugs so she compensated by drinking a lot of alcohol. She found it difficult to talk to health professionals about her drug taking because her parents didn't know about it. 

Her first consultant was someone she didn't get on with and she felt judged when she told her that she'd taken ecstasy the day she had her first seizure. But the poor communication with health professionals meant that she didn't have anyone to go to for advice and information about drinking alcohol or smoking cannabis. Looking back, she thinks she was angry and in denial about her epilepsy because it prevented her taking drugs. Now she says that her condition was like a 'blessing in disguise' because it prevented her from becoming a drug addict. 

 

Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is...

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Talks about her initial reactions after she was diagnosed with epilepsy and says that the NHS is...

Age at interview: 19
Sex: Female
Age at diagnosis: 16
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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...

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Discusses friend's attitudes, learning from own experience, giving up illegal drugs and the lack...

Age at interview: 19
Sex: Female
Age at diagnosis: 16
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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

For more on alcohol, smoking and illegal drugs see our sections on Drugs & AlcoholEpilepsy, Diabetes Type 1 and Depression and low mood.

Last reviewed July 2017.

Last updated May 2014.

 
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