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 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.
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.
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.
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 Young people who we talked to who'd had a serious relationship said they've been honest about their condition and that their boyfriend or girlfriend had accepted their illness and been understanding. Some said that if someone couldn't accept them as they were, they probably weren't worth going out with anyway. It can be difficult to know when to tell someone new about the condition. Some told us that they do it at the very beginning of any relationship, while others preferred to wait until they knew the person a bit better.
In some cases people had known each other before they started going out together so hadn't needed to explain about their medical condition. A young man who is living with HIV explained that he feels that he absolutely must tell others at an early stage. Audio only Text only.