Long term health conditions (young people)

When I was a teenager I'd sort of. I had quite a, you know I had one or two boyfriends. But it was nothing serious. And I never really told them about my CF because it was gross and you know, things about mucus and things. I just sort of kept that side hidden. And I would actually go to the extreme where sometimes if  we went out on a date for a meal I would not take my tablets or I would sneakily take them so that they couldn't see that I had CF. And it was just the whole rigmarole of explaining it to people when you've only just met them. It's not necessarily the first thing you want to tell somebody when you meet them. 'Oh I've got CF'. And you want to get to know them. And I just felt because I was dating and obviously it was, it was nothing serious. I was in my teenage years. I just thought there's not much point and so it wasn't that I kept it hidden from them. It was more that I was just telling a white lie. I was maybe not giving them information and I was not offering that information to them.

But I also once I started to get into more long-term relationships I started to put up a bit of a barrier. I always used to say that I wasn't going to get married and things like that. And it was a barrier because I felt not that nobody deserved me but not. I felt that nobody deserved to be put through falling in love with somebody, marrying them and then for them to die. I just felt that it was, you know, really horrible. And I suppose it was protection for myself because I felt that nobody would want somebody who had a life-threatening condition and that was going to die young. You know, and with all this treatment and things you know I'd go out and I'd be all done up and have all my makeup on. But when I'm ill I [laugh], I look very worse for wear. I'm not particularly anything special if I don't have my slap-on. I look very pale, pasty and coughing and spluttering and there's mucus everywhere and if my bowels are playing up there's all sorts of the things everywhere. And it's really. It's not very sexy. You know you don't want to see, people to see you in a vulnerable state. And so I put this barrier. I said, 'I'm not going to marry anybody' [laugh].

And lo and behold last, well in May time this year I got married at the age of 23 to my boyfriend who I'd been with for six years. He's now my husband. And when I first met him it's quite strange because his niece actually had CF and she'd just been born and had just been diagnosed. And as soon as I told him he said, 'Oh gosh that's, that's wonderful. And I thought, 'Good grief you know, he's a complete nutter,' you know [laugh]. And it turned out that he felt that it was so wonderful because he could take me to his sister and show her that I was happy, I was healthy, I was normal. And that there was no need for her to fret and to be so upset that her newborn baby had CF. He was like saying, 'Look you know she's fine. She's this brilliant person. You know we, we go and do all these things together. She's really fit and healthy. And you know, there's no reason why your child can't be exactly the same.' 

And I think from that moment onwards we had this, this bond where he, he wasn't protective but he helped me out. He understood. It wasn't an issue with my CF and he was great about it. He'd help me with my physio. He'd remind me to take my tablets. We'd make a joke out of my CF. So if I was really, if I'd just suddenly cough at him and there'd be, you know, mucus on his face because I'd not covered my mouth. He would actually think it was completely hilarious. And I think when you feel, when you find that somebody special you feel so comfortable with them that it doesn't matter what you look like or, you know, if you've got a snotty nose or you're coughing all over or you've got no make-up on. It doesn't matter be

There'll be some, you know, there were some people that knew about my CF some boyfriends that were maybe a bit negative. I mean they didn't reject me because of my CF but you know they didn't take an interest. They weren't really bothered. But as soon as I met my husband I knew that he was the one because he, he really had an interest in my CF and he accepted that it was a part of me. And he wasn't going to ignore it. And that was great in a way because he wasn't making a big deal out of it. He wasn't patronising. He wasn't like, 'Are you ok?' every five minutes but at the same time he was there when I needed him. And when I was in hospital and moping around and feeling sorry for myself he'd say, 'Oi you know, cheer up. You know stop moping around it's not the end of the world'. And it's really great to be able to find somebody like that that understands you.

I don't know whether or not having a niece with CF helped. I think that I was very open and honest with him right from the beginning. I mean I was so worried about his reaction. We'd only been dating a few months when I told him but it turned out to be the best decision I'd ever made. But I think it's down to each individual and you've got to judge whether or not the time is right. There might be some boyfriends or girlfriend's that you know that the relationship isn't going anywhere. And that it's not really worth, you know, giving them your life story. You don't have to feel obliged to tell anybody about your CF. But I do think that if you are in a relationship for the long run it's best to be as open and honest as possible if you can see potential in that relationship. You know, and base that relationship on trust and being able to share things that you wouldn't share with anyone else with that person.

No one ever discussed that with me. No doctors ever spoke about sex and whether I could, and I have actually had a fit whilst I was having sex with my boyfriend. And that was horrible. I mean that, that totally freaked him out. After that he was like, 'I don't want to have sex with you any more'. Because I mean I can't imagine how that would be. Like for me it was quite horrible, but for him I think it was worse. Because, you know, sex is something that's meant to be enjoyable and, you know, it is enjoyable most of the time. But it did definitely, like I wasn't so freaked out by it because it, you know, I'd already had, how old was I, how old was I? I think it was about two years after, a year, two and a half years after I was diagnosed that that happened. And it was with a boyfriend, I'd been going out with him for about two months maybe. And after that he was, yes, he was so freaked out like he didn't want to, he just didn't want to have sex with me at all. And that was quite, that was really horrible actually. Because it's like, 'But there's nothing, you know, wasn't that bad, you know, You didn't have to have the fit. I did'. And like, but it did definitely affect our, our sexual relationship majorly. Like after that I think it took him about a month or so. And for a guy I think that's quite controlled. And even after that I think he was really quite nervous having sex with me. Like I think it was quite scary for him. And I don't, it doesn't worry me any more actually. It did.

And it's happened once since then, with my boyfriend now, who I've been going out with for three and a half years. It happened I think eight months into our relationship. And that was, that was actually worse than the boyfriend before, because I think I was more in love with this one, well, I am more in love with him. But also we were at his halls of residence in London, because he was at university in London and I used to go up and stay with him all the time. And, yes, we were, we were having sex and I started to have a fit. And like I don't think, he'd never seen me have a fit before and like, poor guy, it must be so horrible. I can't imagine what it would be like really. But, yes, it was quite weird, because he was quite freaked out and went to go and get one of his housemates. And afterwards I was quite angry with him actually because I was, you know, naked on, like on the floor. Because I think he'd rolled me onto the floor on his duvet because I was hitting my head on the wall when I was having the fit. And, yes, three of his housemates came in and one of them was a guy and I was like, 'You fucking bastard. Like I, you're, you can see my naked. That's fine. But I don't really want people I don't actually know to see me naked. It's quite, you know, not very nice'. And they, he called an ambulance. And they came up into the halls and like the ambulance men came in and I was just lying on the floor and like, 'What the fuck?' I couldn't work out what was going on. It was really, it was just like, 'What's happened? Why are all these people in here? Like I don't understand at all'. And he put, he put me in a T-shirt and a pair of his jeans. And they put me in one of those stupid wheelchairs. And I hate, hated being put in a wheelchair. I was like, 'I can walk, thank you. I'm not disabled. Like I may have had a fit but I'm not completely...'. Although actually to be fair I probably couldn't have walked down all those flights of stairs. But it's sort of like, being put in a wheelchair is quite stigmatised in a way. And people, you know, like having to go through his entire halls of residence and like be wheeled out the front door with  the security in his halls and all the secretaries all like looking, like, 'Oh, what's happened there?' you know.

And it was re-, I was like, 'Oh, fuck, this is so embarrassing. I really don't want this to happen”.  Like I was really embarrassed more than anything else.  I didn’t, like I wasn’t upset about having a fit, because it didn’t, that doesn’t really upset me, having fits any more.

And tell me more about your relationship with your boyfriend, with your current boyfriend.  Was he freaked out'

Yes.

'in a similar way that your other boyfriend was?

Yes, definitely.

Was he put off sex?

Yes, he was. But I, I sort of explained to him a bit more. And I think I looked up on the Internet. And there is, it, like with having sex it's something about like with brain stimulation that can trigger having a seizure. I don't, I can't remember, I, it was, you know, a few years ago that I looked, looked it up now. And I sort of explained to him, you know, that the chances of that happening every time we have sex are pretty slim. And it's not happened since then. It's only happened that once.

So once in three and a half years?

Yes. So, you know, really that's nothing. And...

He has seen you having fits?

Only that time.

Only that time?

Yes. So it might, you know, even more, like I think if he'd have seen me have a fit before, it probably wouldn't have been so scary for him. But because it was the first time he'd seen me have a fit, I think it was probably more scary. Because I don't think he's ever seen anyone have fits before that. Like I, when I was at college I had a friend who had epilepsy. And so I've seen people have fits and I know how horrible they look when, I know how horrible I look when I have a fit. And that, that freaked me out quite a lot, that he'd seen me look so weird, you know. Because, you know, sort of dribbling and foaming at the mouth and stuff, and like your body going in tonic-clonic seizure, it's not, it's not very attractive. And you don't really want your boyfriend to see you when you don't look attractive.

Did you talk to him?

Yes, yes, because I think, because I was more stable about my epilepsy, because I felt more, like because I understood it better and I'd lived with it for a few years and I hadn't, you know, I'd got over all of my anxieties about it so much. And I think that made it easier for me to explain to him that it was okay, like and, 'It's not, it's not, nothing to be scared of. And, you know, I'm not, it's not, you know, it shouldn't stop us from doing anything'. And that's like my biggest thing with epilepsy, is that I don't want to let it stop me from doing anything that I want to do in my life. And it hasn't so far. Other than the job that I initially applied for, it hasn't stopped me doing anything.