Boyfriend, girlfriend and sex

Living with a long-term condition doesn’t have to be a problem when it comes to sex and relationships. Many of the people we talked to said that they had formed long lasting and intimate relationships. Some people’s condition made it hard to meet new people and difficult to know when (or if) to tell them about their condition. One man said that his confidence has been affected by his arthritis and that he prefers the company of those that he already knows rather than having to meet new people. Some young people also faced practical issues about getting tired, lacking confidence, being uncomfortable sitting still for a long time or wanting, and having to avoid alcohol or smoky atmospheres (also see ‘Going out‘).

ME affected his confidence particularly when he was a teenager. Says that when he is well he…

Age at interview 23

Gender Male

Age at diagnosis 15

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Does ME affect relationships?

Well I mean. Yes it does. It is a difficult one because I am not really sure whether it was ME or whether it was just me but I have had, I think it was an ME, it was just an extraordinary time. Having ME during your teenage years is unbelievably complicated. I mean being a teenager is a complicated thing with all these funny juices pumping around your body and you know you first discover girls and you are thinking well and all that sort of stuff and then being very tired and thus being quite depressed and not that confident in yourself or really not confident in yourself at all because you are depressed and tired. It just compounds the issue and I had some crazy times. ‘ME indirectly I suppose has affected my confidence like that, because as I say, you know it brings you down and it makes you more depressed. It makes you less able to do stuff that other people can do and stuff and if you go to a party you spend a bit of time sitting down when everybody else is dancing and all this sort of stuff. It comes to 12 oclock and I am ready to go to bed you know and there is all this sort of stuff. It does, it affects the person that you think you are, I think.

But also I would say that it affects the person you think you are but it doesn’t affect the person. You just have to, that doesn’t really make sense, what I mean is it affects who you think you are but it doesn’t change who you are, it just changes who you think you are. So when you are feeling ill then it is just not a good time to start looking for a relationship but having said that it doesn’t really work like that. When you start feeling ill you start to think well why didn’t I have a girlfriend, why didn’t I have this or you know but then when you are not feeling quite so well, well this is for me personally, when I am feeling so well I am more positive and I think it will come around and it does and stuff. And now I have to a situation where I am very happy with the situation I am in and I am sort of and waiting and hoping that I will get a girlfriend but now I am not that fussed about it. I am a bit more, I am more confident with the person I am. But let’s say if I had a relapse, a major relapse and felt really ill then I am sure it would become an issue again [laughs]. Because I kept a diary for quite a long time over the time that I was ill and it was all about you know problems with relationships. Well problems with girls that I liked and not being able to tell them and I am sure that is the same for every teenaged boy but I sometimes just felt it was more for me, because I used to get very emotional and most blokes I think would sort of shrug it off a lot better than I could and I think that has got something to do with being ill. I think that does definitely have something to do with being ill yes.

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Many teenagers are self-conscious about their appearance as well as reluctant to tell others about their condition. One girl told us that when she was 17 she “wouldn’t have dared tell someone I had scoliosis. I wouldn’t have dared go out if I had a spot!”

Many went through a phase of being very critical of their bodies and self-conscious about how they were different from other young people. This was particularly true when they were feeling ill or having medical procedures that altered their bodies. One young woman who had a hip replacement in her late teens told us that she felt different from other women of her own age. But she soon realised that her experience of her condition had made her stronger and more confident in herself.

Physical pain can place a lot of strain on a relationship. She felt guilty about affecting the…

Age at interview 28

Gender Female

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I think the most, obviously the most significant thing that I’ve missed out on is my partner, is my relationship with my partner. We’ve been together ten years. ‘Yeah, we’ve been together ten years and I finished, well, we finished, we split up because of the effects after four or five years, I say the effects I didn’t want my health to affect him, he was young, he wasn’t, you know I wasn’t able to have sex regularly with him, I was moody, I was in pain, I was on lots of medication. He was young, healthy, he didn’t need it, so, you know, we just, we needed, I, for me personally, I needed for him to go and get a life for me to be able to cope, for me to not feel guilty about how I was affecting his life. But we got back together, two year, a year, two years later. We got, we were engaged, been engaged for four and half years, and we are now having our second child. So we are still together, but it’s been hard and it is hard for him, very hard. Every, so much relies on what he does, he’s in a job that he absolutely hates but he can’t afford to work anywhere else, because he’s got to support me because I can’t work. But we love each other and get through it I suppose. We don’t have sex regularly, we’re don’t, not intimate, or we’re not lovey dovey physically as much as we’d like to be, we can’t have play fights for our children or even tickle each other to death because it hurts me too much and we can’t go for long walks and we can’t go for meals and sit and talk for hours, ‘cos I can’t sit in a chair and I can’t eat very well, but we get by. So that’s it really.

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She thinks that things are easier because she has become less conscious about the way she looks…

Age at interview 22

Gender Female

Age at diagnosis 11

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I’d say not in the long term. But I think initially I just feel self conscious and it’s just you ‘ it’s obviously it’s not a difficult ‘ eczema’s not really a difficult thing to explain because it’s you know, it’s a common condition and people kind of understand about it. But it just ‘ it ‘ I don’t know it can just, it just can make you feel self conscious about how you look and how you appear to other people. But I think I haven’t any difficulty with that in the long term. People have been very understanding ‘ so.

Does it get easier as you grow older?

I think so yes, yes. I think, I think you just learn well I do to accept it and that maybe one day it’ll, it’ll go away which should be nice. But it might not do. And all I can do is keep doing the things, the positive things I’m doing now to, to just keep at a certain level that makes it bearable. Yes, I think it does easier because you get a ‘ you know, every year that you’ve got it you learn more about yourself. You learn about it as a condition and you just learn ways to, to deal with it.

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Some young people with life-limiting conditions deliberately avoided serious relationships. A young woman with cystic fibrosis said that she had been partly protecting herself when she said she didn’t want a serious relationship. She hadn’t believed that anyone would want to be involved with her.

When she was younger she felt that nobody would want to marry someone who could die young. She…

Age at interview 23

Gender Female

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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

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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. Several suggested that you shouldn’t feel you have to blurt it out to everyone you meet but you should probably tell if the relationship starts getting serious. 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.

His HIV makes it difficult to find a partner. He’s open about his condition from the start.

Age at interview 26

Gender Male

Age at diagnosis 17

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Being young at 17 and then going through this huge experience, does impact as you get older your views of relationships and how do you go about it. You know like recently I’ve wanted to do things perhaps other young people have done and go out and have fun and party. Meet someone, not worry about HIV but’ reality is I just can’t, you know I can’t live a normal life. That’s why I say it’s not a manageable illness. Because it does place restricting, you know restrictions on the way in which you live or go about. You know you can’t, you can’t be like your friends. But part of me wouldn’t want to be either. But it is extremely difficult and lonely. You know trying to be honest and find someone that’s going to be honest with you. Because if I’m going to sleep with somebody then they need to know I have HIV, and that leaves you automatically open and vulnerable and all of that stuff. But, you know it’s, it’s worth just being yourself, I can’t be anything more. But it doesn’t always go into my favour and, you know, that can be quite difficult dealing with some people’s reactions.

Yeah. I, I’m, I mean I’ve been, you know I’ve’ I’ve dated guys and it’s just, you know I, you want, your priorities in life when you’re positive they do change, you know. And I want more and I’m not willing to settle. And then I stand back and I look at myself and I go well what do I have to offer in a relationship when I’ve got HIV, I’ve got my charity work and I, I’m so focused around this issue that, you know it would probably take someone extremely special to be able to kind of take me on board, with all the baggage that kind of comes with me. Because it can’t be easy for any guy, but you know, we all get lonely. I’m only 26, I want to be able to live a normal life and have fun and go out with my friends and then I do that and I find myself in a situation going I don’t want to be dealing with this too much. I think that it’s part of me growing up now really. You know, because I went through a period when I first got diagnosed where I didn’t want anything to do with you know dating and relationship. And then I went to San Francisco and I met other young kids and they were like, you know it was normal that I had HIV. So, and that re-adjusted my outlook and you know changed the way I approached relationships and then came back to England and then, you know I really have given relationships a good go but it is too much hard work.

But I’m, and I’m also on the mind frame that there are’ I would want to know if went to bed with someone if they had HIV, and the fact is that I’ve got it because somebody didn’t tell me, so why should I keep going’ You know passing it on when, you know, I’m, yeah I’m trying to get the words out but it’s not coming.

It’s fine, it’s very clear.

Yeah I just don’t want to I just don’t want to be like the person who infected me at the end of the day. And I think if you’re just honest and say look this is who I am you know like it or lump it, it can be good’

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She has been in a relationship for the last four years. They were introduced by a common friend…

Age at interview 21

Gender Female

Age at diagnosis 4

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It’s always been pretty early on, I mean like, my first boyfriend was around the time, because, I was nominated to go down to London as part of the Cystic Fibrosis awards, that was in 2002, so that was all happening when I met my first boyfriend, so he sort of, he knew about it, because obviously I went to school with him, and I was, I was always like really good friends with him, so he’s always known about it so it wasn’t really an issue, at all, with him. Then with my current boyfriend, I was really good friends with a lot of his friends before I even met him, so when I did start going out with him, he did actually, you know he didn’t, he didn’t sort of talk about it at all, and then I never mentioned it just through just not, not thinking about it, and then we got talking through friends and everything like that, and one of my friends who I was really close with, who was his friend, sort of told him that I had cystic fibrosis, and he sort of got his words mixed up, and ended up thinking that I had Multiple Sclerosis, so we were sitting there and he was like waiting to see if, I was like, you know, sort of having trouble moving and everything, and he was like, ‘Oh can I ask you’ and he just asked us outright, like, you know ‘What’s, what’s this thing you’ve got?’ And I told him, and he was like laughing, and he said, ‘Oh, I thought you had Multiple Sclerosis, I thought it was like muscle or nerve. And I said, ‘Ah no. So I had like a laugh about it, and, but, he knew early on, like, like we’re all in the same school, and all our friends were sort of connected so, it wasn’t really a case of us not having, not having to sit down and sit and tell somebody, because its never really happened to us, I’ve been with him four years now so.

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Felt that previous boyfriends were a bit negative about her CF but her husband – who has a niece…

Age at interview 23

Gender Female

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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.

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Some of those who were diagnosed when they were older were in a relationship at the time. This could put a strain on the relationship. If the couple had only recently started dating, they may not know each other well enough to support and rely on one another. A young woman recently diagnosed with type 1 diabetes said that she preferred to talk about her reactions to the diagnosis with her ex boyfriends because they knew her better than the boyfriend she was presently seeing.

Sometimes people might feel so ill, or be in such pain, that the very idea of sex is unappealing. This can obviously cause a strain on some relationships. A young woman described the difficulty she and her partner had after her hip operation.

Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise…

Age at interview 21

Gender Female

Age at diagnosis 12

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Obviously when I had my hip replaced I had to lay off of the physical side of the relationship for at least 6 weeks which [Laughs] I think maybe for my boyfriend was a bit annoying but for me I, I wasn’t too bothered. I wasn’t really feeling like it at the time. But apart from that it’s, it’s not really been a problem. Obviously some things I can do, some things I can’t. We’re not all gymnasts so but like I say, that’s, I don’t think that necessarily just applies to people with arthritis. And I do feel that sometimes you’re just not in the mood for anything like that. But again I think that’s normal anyway. And I think I’m lucky that my boyfriend’s so understanding about those things. He understands that I’m very sensitive and I, I can’t be roughed around too much and he understands that if I’m in a lot of pain then I’m in a lot of pain and all I want to do really is just sort of lay around and watch TV and that kind of thing. So it’s not been a problem at all, I wouldn’t say.

Maybe you’d have to ask him about it as well. But no he’s never complained of anything and neither have I so I would say that’s all fine. Yeah, like I said before, the only thing was just before my hip was done again that was just like, it was quite similar to just after. It was very difficult to do anything like that because it was quite painful but on a normal day everything’s fine. So I wouldn’t complain about it at all.

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People with epilepsy often worry that they might have a seizure (or fit) while they are having sex. Doctors and nurses were often reassuring that it was unlikely to happen. Sometimes it does happen and young people’s reactions to it happening seem to be related to how much information they have about their condition, how serious the relationship is and how prepared they are to explain things to their partner. One young woman said that it has happened to her twice. The first time when she was a teenager and had been unsure about how to deal with such a situation. The second time was with her current boyfriend when she felt more in control of her condition.

She had a seizure when she was in bed with her boyfriend at his college halls of residence. Was…

Age at interview 24

Gender Female

Age at diagnosis 17

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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

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After she had a seizure while having sex with her boyfriend she talked and reassured him that…

Age at interview 24

Gender Female

Age at diagnosis 17

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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.

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A young man with HIV pointed out that people often need sexual health services outside of the 9-5 clinic hours. He also thinks they often seem impersonal and unfriendly to young people.

Sexual health clinics don’t tend to be open when young people need them and are not welcoming…

Age at interview 26

Gender Male

Age at diagnosis 17

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OK, I mean, the problem with health’ well sexual health services at the moment is they’re not accessible to young people, they’re Monday to Friday, 9 to 5. That doesn’t fit’ excuse me it’s repeating on me, the coffee, we will get this, this will be a good bit. Yeah the problem with sexual health services you know and, you know GUMs, Genital Urinary Medicine is that they’re just not accessible. Monday to Friday, 9 to 5, most of us are at school or working. As an environment they’re really overrun, there’s delays to be seen by the doctor. Reports have come out in the House of Commons saying it can take up to 14 days to get seen by a doctor. Yeah and I think that young people have unique specific needs that need to be met in order for them to feel comfortable and want to go and get tested. Because it is a huge life changing experience to go through. And that, you know if you’re not prepared and ready or the services and not geared up in a way which is supporting you, then it, it can do more damage than good.

So for a young person sort of arriving in a GUM clinic attached to a hospital what does that look like?

Just very clinical and medical like you’d expect in any hospital.

So what should it look like?

Impersonal, you know not friendly, it’s not welcoming. It’s not accessible and’ You know the programmes in the US where the, you know funding’s more available, you know we’re very much more geared up about encouraging people who, who are already living with HIV to have an active role in the community. To raise awareness, to run educational workshops, to encourage clinics to to adapt services on the evenings or on the weekends. Where kids can come in, get tested, talk to their own peers and get information on a one to one basis that perhaps they wouldn’t feel as comfortable discussing with a doctor.

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Young people with health problems have the same need for sexual health services as other young people. (see our Sexual Health section.)

Dealing with the family

The diagnosis of a long-term (chronic) condition in a child or teenager usually affects the whole family. It can take time for parents, brothers, sisters...