Arthritis and relationships, dating, sex and pregnancy

The people we spoke to had wide-ranging experiences of relationships, sex and pregnancy. Some were in long-lasting and intimate relationships, whilst others found it difficult meeting the right person, or wanted to stay single. Sometimes people looked forward to having children but not everyone wanted a family of their own.
In this section young people share their thoughts and experiences on these topics.

Relationships and dating

The people we spoke to who were in a relationship described what made their girlfriend or boyfriend special. People who were single told us what they would want out of a relationship. They all said it was important to have a partner who accepted you for who you are, and stayed with you no matter what.

Chantelle met her fianc√© when she was in a wheelchair. The wheelchair doesn’t affect their…

Age at interview 16

Gender Female

Age at diagnosis 11

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Well I’m sort of lucky with my fianc√©e cos he’ll push me round in my wheelchair. It don’t really affect us at all because he met me when I was in my wheelchair and it never affects us because we can always go out, whenever we go to parties, if I’m in a wheelchair he’ll still take me. And he just rings up and tells em to get, make sure there’s disabled access. And he still makes sure, we go out for meals and stuff and we always do the normal stuff a teenage couple would do, it’s just, we just don’t get to actually, oh I don’t know how to explain, cos we, sometimes I’m in a wheelchair so sometimes we can’t go to funfairs like my other friends do go to cos sometimes it hurts my joints.

Cos I find that when sometimes I go on fair rides it hurts my back, but sometimes I go on them and I’m not meant to.

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People talked about the many ways their partners supported them. If people felt “moody”, tired, in pain or frustrated with arthritis then their partners were understanding and didn’t take it personally. They provided emotional support by listening, hugging, and providing reassurance. They also went out of their way to cheer people up when they were down. Sometimes a partner’s sense of humour helped people through difficult times.
Practical and physical help was also important, for example, getting around, attending hospital appointments and generally helping take care of the person with arthritis.
Partners tried to understand what it was like to live with the condition. They sometimes found it hard because they couldn’t “cure” the arthritis.

Rebecca’s boyfriend has been with her since she got arthritis. He supports her emotionally and…

Age at interview 20

Gender Female

Age at diagnosis 18

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So is he protective, can I use that word?

Yeah. Well, yeah he is quite but most of the time he’s not very protective of me, like he doesn’t do the whole like clingy boyfriend thing, it’s just, I think he things I’m a danger to myself, which is probably true in some ways I am a bit like that. So when I try, when I start doing something like, well I’ve got a Wii, so I’ll be doing the Wii fit or something, messing around with my sister, and he’ll come up and be like, Stop it I’ll be like, Leave me alone Like Stop it Like Right

But I think it’s because he’s been there through every time that I’ve collapsed and it hurts so much when it goes, when it pops. And through the surgery, and things like that. He was there when I woke up, so he was there when the surgeon came along and I was in complete distress.

And of course he’s one of the points of contact when I have one of these, when I have one of my breakdowns or I crack, he’s one of the people that I’ll be like, just go to and I think cos, obviously it’s so much worse for the people that don’t know what, can’t really relate to it, because they don’t know about it. they’re there with you but they can’t go, Oh I understand Because it’s not happening to them and he’s like that so he’s like, I wanna make you better but I don’t know how And things like that.

So I have these moments where it gets all too much and I break, but then I’m over it and I go back to normal. it’s like it’s all out now, so I start again. And I’m fine. it’s just it gets to a point where you have to let it out so but then go back to normal, but then that stays with him because he’s seen it and done it and stuff so he’ll say he’s not, he’s, I suppose he’s in the same boat as my parents really cos he wants to help, he wants to make it better and change it but doesn’t have a way to and doesn’t know what to say to me to make it better. So it’s a bit like that really.

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Telling somebody you like that you have arthritis can be difficult. Sometimes people worried what others would think of them and feared that arthritis would get in the way of a relationship. Because of this, some of the people we spoke to didn’t reveal that they had arthritis until they got to know someone better and trusted them. Others always kept their arthritis a secret.
Deni once trusted somebody enough to tell him about her arthritis. They eventually split up and since then she has had difficulties trusting people again. Rebecca told her boyfriend when she first met him and they have been together ever since.
Zoe’s boyfriend found out that she had arthritis from somebody else. She was nervous about admitting it but her boyfriend was OK when she told him. Even after being with her boyfriend for 18 months Sarah was nervous that he would leave her because of her arthritis.

Because Caitriona didn’t tell her boyfriends about her arthritis they struggled to understand why…

Age at interview 19

Gender Female

Age at diagnosis 13

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Mm well I’ve had positive experiences when it comes to relationships with boys and I’ve had very negative relationships with boys. I’ve found when I was diagnosed I mean, I started dating from an early age I’m embarrassed to say. But when it comes to boys I found it easier to be able to not tell them and that was awful because I mean the ramifications – they’d ask you, "Do you want to go to the cinema?" I’d be like, "No I’m too tired," and they’re like, "Why are you too tired to go out?" and you know, you know, stupid things like, "Are you going with someone else?" because you can’t make the time for them. And with school, because I’m ill I find school to be a challenge or I found school to be a challenge and that had a huge impact because I wouldn’t go out during the week and then I would only go out with, you know, my boyfriend on the Friday, on the Friday night and then on the Saturday I would go out with my friends and then on the Sunday I would stay in to rest and people would find this, you know, "Why, why can’t you go out with me on Saturday and go out with your friends on the Friday?" which you’re having to pick so I mean that’s just.

I mean it didn’t work to be honest, I mean I kind of have to step aside and say, "You know it’s not working, it’s not working out." As I gotten older I told people that I’ve arthritis. Some people, you know, stand back and won’t have anything to do with it. Other people are accepting but again don’t know what they’re accepting because one minute I can be fine and another minute I can be very bad and it’s when I’m very bad that it gets overwhelming. I mean I at the moment I’m single and I don’t want to be in a relationship until I’ve kind of understood. I mean as I’ve grown I have dealt with all the different kind of sides but relationships have been tricky because we haven’t been told about relationships and about how we’re going to deal with relationships. The older you get the more mature a relationship becomes and you think about different things. You know you think of sex, you think of going out, you know, maybe living together, it’s like you know, stupid things like, stupid things like that and it’s just, it’s too much at the moment for me to deal with. I have had relationships but we’ve kind of thought of it and we’ve been quite mature in that sense but at the same time because they’re not aware and because I’m not fully aware of that side and that aspect of, you know, of myself it becomes tough and I mean.

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People could be afraid of getting into a relationship because of their arthritis. Some said that it was hard finding somebody to be with. Dan was lonely and felt that his wheelchair got in the way of relationships. His previous girlfriends found it difficult when Dan wasn’t able to leave the house during a flare-up.
Cat dated a guy who said it was “weird” to have a girlfriend with arthritis. He didn’t like her talking about it or taking medications in front of him.
Charlotte Z knew someone who said they could never be with somebody with arthritis. She thought this was “crazy” and said arthritis is “just like having an accessory” and that “you’re still the same person”.

Lu is scared of getting into a relationship but says it would be nice if somebody could look…

Age at interview 26

Gender Female

Age at diagnosis 13

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I’d say that I’m more scared of getting into a relationship.

Okay.

And trusting because, oh I don’t know. I think you’ve got to always think, not am I am a burden but is, you know it shouldn’t be a lot to take on but maybe it is because you can be really well for a couple of weeks and then you might just have a flare-up, no matter how well controlled it is and then you don’t want to go out at the weekend, you just want to sleep. And you kind of want someone to look after you a little bit, even though you know you might not need that. That’s why even now at sort of 26 if I’m really feeling rubbish I’ll go home to my parents. And I’ve got no qualms in doing that, and I’ll just go and lie on the sofa for like two days to get better.

But I think maybe we perceive that to be weird and people that have it perceive that to be something way more than it really is. Like I think maybe you make, may make more through insecurities, you know having your sort of drugs out there all by the bed, like I don’t really like people seeing that, or you know having to go off into another room to inject myself. That is a lot for someone to understand. So to be honest I’m quite lucky like the relationships I’ve had have been with people I’ve previously known, but I think introducing that to someone new that’s something I hold off from for a while until I can really trust them. So yeah.

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People sometimes felt they were “a burden” to a partner and didn’t want to put a partner “through the strain” of their arthritis. David Z once ended a relationship because he was worried of the impact of his arthritis on his girlfriend.

David Z said there’s a part of him that doesn’t want to have a girlfriend because of the…

Age at interview 21

Gender Male

Age at diagnosis 21

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Yeah, I think you, you know, really I have thought about that a lot actually. There are a lot of aspects to it. In terms of relationships, you know, a relationship means, you know, close proximity to an individual for long amounts at a time, you know, doing things together and part of me doesn’t want to put someone else through the strain that I have with this illness. Although they don’t have the pain, they have the emotional, you know, ramifications of being with someone and I’m not keen on putting someone else through that when they don’t have to be. Of course, people like family are automatically included because they’re your family and friends and so on but a kind of aspect, until it can be, until I’m given an efficient medication that confirms with me that, you know, that wouldn’t be a problem, it does put me off slightly. And in terms of children, I think it’s the same kind of reasoning but also AS has a strong genetic factor and the idea that I could, you know, bring a child into the world but it would have to suffer the same thing, I would I couldn’t live with myself with that because I know how difficult it’s been and to have put someone else through that unnecessarily, no I couldn’t I just couldn’t live with that, no.

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Even though Caitriona was single she was positive about finding somebody to share her life with. She said that lots of people with arthritis have long-term relationships and get married, so it does work.

Sex

Some of the people we spoke to didn’t feel that arthritis affected their sex life on a day-day basis. During a flare-up they found certain positions too uncomfortable, so they tried different positions or just decided to have sex despite the pain.

Sometimes people weren’t in the mood for sex during a flare-up or if they felt down and depressed. Sarah said that during a flare she’d rather watch TV. For Rebecca, the pain in her knee went away after sex, but a few hours later or the next day she would be in more pain than usual.

After her hip replacement, Sarah had to wait for 6 weeks to have sex again.

People described their partners as being understanding if they didn’t want to or weren’t able to have sex. Some said their ex-partners didn’t understand and got pushy. Rebecca never told her former boyfriend about her arthritis so when it came to sex he didn’t understand why she sometimes couldn’t do it and got offended.

Dan’s ex-girlfriend didn’t like the fact that he found certain positions difficult.

Sometimes partners were worried about hurting people during sex and Sarah said a partner needed to be gentle with her if she was in pain. One woman finds it off-putting when her partner keeps asking if she is OK during sex.

Caitriona explained that it’s important that partners understand why people with arthritis can…

Age at interview 19

Gender Female

Age at diagnosis 13

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Yes well it depends because if you’re bad then of course it’s going to affect it. But if you have a swollen joint the pains were it is. So if you have a swollen joint then I mean you can still go through but if you, I mean I stress this when I speak to people who have the same condition and who speak to me about it; if you have you know, if you’re not in the mood to do something and someone is trying to kind of well you know, you were OK yesterda being quite nasty I mean, just leave them because although yes you’re ending a relationship or you’re coming out of it, with arthritis you need to find someone who is accepting, who will be patient, who will, you know, help you and although one person might be OK to do one thing, another person may not so , and that’s, that is a down side. When you have arthritis, I mean not everything can be fixed. There are going to be times when you’re bad, there’s going to be different side effects but it’s just trying to find, again it’s trying to find a person who is understanding, who is accepting and it may take a while. But I mean I have friends who have arthritis and who have got married now. I mean they’re quite a bit older than me. They’ve got married now, you know, they’re with long term boyfriends and things like that but it’s again trying to find that kind of person, trying to find that kind of; I mean you’ve to be confident within yourself to believe. I mean some people with arthritis have such low self confidence that they’ll, you know, they’ll push themselves to do things that they wouldn’t normally do. I mean that’s, I mean it’s sad in a sense but you just really to kind of think of yourself. Yes you have arthritis but you’re still the same person you are, you’re still a great catch so you really need to kind of think about things like that.

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The people we spoke to sometimes lacked confidence in their appearance and this could affect relationships and physical intimacy. Some were worried what people would think if they saw how arthritis had affected the appearance of certain joints. Others had surgical scars which they didn’t like to show people.
People also talked about being unhappy with weight gain after taking steroid tablets. Sarah had a hip replacement and felt “less feminine” than before. People who lacked body confidence said they wouldn’t have one night stands or sleep with people they didn’t trust.

Because Caitriona isn’t comfortable with herself she finds it difficult to be intimate with other…

Age at interview 19

Gender Female

Age at diagnosis 13

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No I’m not comfortable with myself so I can’t be intimate with anybody else and I find that’s something that happens to everybody. You need to be confident and comfortable within yourself to be able to, you know, to do something with someone else and it’s something that really does stick with me. Because, you know, I would love to get into a relationship and be intimate with someone but at the same time at the moment, you know, with the steroids and with the effects that all these drugs and my condition has had on my body, I’m not comfortable with myself and I mean, I mean I know that there are loads of people who have the same feeling it’s just trying, once you’re confident within yourself, you know, that will kind of show and it is, it is something that, that does stop me but at the same time, I mean I’ll overcome it at some stage and people do overcome it, it’s just one of those things that you’ve to try and deal with and manage so yeah.

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Some people struggled to find information about sex and intimacy for young people with arthritis. Caitriona said the topic was still “taboo”. People wanted more information to come from young people themselves rather than health professionals.

Pregnancy and contraception

Because arthritis conditions are so variable it’s important to get advice from your doctor or rheumatology nurse specialists before you try for a baby. In particular, some of the drugs you’re likely to be taking for your arthritis may need to be stopped before conception. Always speak to your doctor or nurse before coming off any prescribed medication.

The people we spoke to who looked forward to having children in the future had lots of questions and concerns about how their arthritis or treatment would affect pregnancy. For example, many were worried about getting pregnant whilst taking medication. They were told by health professionals that certain medications, like methotrexate, caused serious harm to unborn babies. Some worried about medication causing a miscarriage. People had to start planning a pregnancy well in advance, sometimes even years before. They were told they had to be off certain medications for a long time before trying to conceive. Some worried how they would cope without the medication when trying for a baby.
Health professionals had informed young people and their parents about the risks of certain medications in pregnancy and talked about the need for contraception. Sometimes young people found it embarrassing when they were asked about sex, especially if they didn’t know the doctor or if a parent was in the room. Zoe thought it was funny when the doctor asked about her sex life in front of her dad.

Jenna was on a clinical trial for tocilizumab. Each time she went to the hospital for her…

Age at interview 14

Gender Female

Age at diagnosis 10

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I’m just interested in whether or not she’s on birth control tablets at the moment?

No they do as part of the trial; they do a pregnancy test every time you go. Once you’ve become pubescent, they’ve told me that they will do pregnancy tests because they have to make sure that they’re not pregnant before they give the medicine. But other than that they don’t make them take birth control or anything but obviously they’d make the parents aware that it’s very serious; you know if she was to get pregnant. Presumably she would have to have a termination I would imagine and that’s just something that you don’t want to go down that road really.

And would, it’s difficult because we’ll try to put it in the future but do you think she’d be comfortable coming to you asking for advice with sex and birth control?

I think she would ask advice but I don’t, she’s very, keeps, plays her cards close to her chest about boyfriends and so on, so I don’t think she likes to discuss relationships with me but I think she’s quite sensible and she will find out information if she needs it. She’ll come and ask me for information.

Are you aware of information about sex and arthritis that’s available?

No not really. I know that one of the drugs that I’ve just started taking, it said that you can have a special wash out if you want to have a family otherwise you’ve got to wait two years after stopping the drug before you can conceive. So it’s quite, obviously it must stay in your body for quite a long time.

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People’s parents sometimes made sure that their children understood the importance of not getting pregnant when taking medications like methotrexate. Jenna’s mum wanted to educate her daughter about the risks when she was young. Zoe’s mum wanted her to use two different types of contraception, just to be safe.
Some of the people we spoke to went out of their way to ask doctors questions about pregnancy and contraception. They wanted to know what contraception they could take and whether their medications interfered with contraception or fertility. Lu said she would be embarrassed telling her doctor that she was pregnant whilst taking medication.
People also wanted to know whether the contraceptive pill would interact with arthritis and make the pain worse.

Rebecca isn’t sure how she will cope being pregnant. She worries about the extra weight of…

Age at interview 20

Gender Female

Age at diagnosis 18

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What about thoughts about pregnancy, motherhood?

Someday.

Yeah.

Hopefully not right now. But no in few years, but I don’t know being pregnant does worry me, especially as one of my friends is due to have a baby and she is huge, she’s massive, bless her. She’s absolutely massive. And it does worry me cos it, it bothers me with all the other things that I know goes on with pregnancy and stuff like that, so your back ache, your feet swell or whatever, I know about all of that.

It worries me that I’m not going to be able to walk around and carry the weight as well, because of that knee, cos my knee, the only thing with it is, is randomly it will pop, which is really odd. It will pop and I will collapse, and then it swells even more and hurts even more. And I can’t walk on it at all. it’s like when you sprain your ankle but me knee is basic, it feels like the top and the bottom have done that and gone in different directions. And that’s happened a couple of times, but again for no apparent reason. I could just be literally about to take a step as I normally would and it’ll just decide that it’s going to do it.

And that worries me with the whole pregnancy thing cos if I can’t, obviously with everything else, with, cos literally obviously some people get out to about here, and the strain that puts on your body anyway, with the knee as well, yeah it is a worry cos it also means as well that I’d have to come off the medication. So I wouldn’t have anything there trying to buffer it at all.

And of course with the methotrexate and the sulfasalazine I’d have to leave it at least 15 months before getting pregnant. Which then means that if I ever plan, if I do ever decide to have kids that I’ve got to plan 2 years in advance for when I’m gonna have the baby. Which is, I hadn’t really thought of that before until then.

But you know stuff like that, that and also if my knee went whilst I was heavily pregnant and I fell, which way am I gonna fall? And what’s that gonna do to me, to the baby? Well it’s just; yeah it’s a lot of hassle. I don’t want to think about it. No. I suppose that’s the only thing really.

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Charlotte Y came off her medication and is trying to get pregnant. She got conflicting…

Age at interview 25

Gender Female

Age at diagnosis 17

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Contradictory information I’d say more than anything. The contradictory information from different GP’s and the rheumatologist about what pain killers are safe to take throughout pregnancy. One said you could can take Ibuprofen, one of them said you can’t and it’s just, you’re like asking them for advice because they’re supposed to be the ones with the information and you’re getting information which is contradictory so that’s been quite difficult and obviously the whole issue over leflunomide having to actually be off it two years rather than one year, that was obviously quite annoying. I appreciate the fact that it might have been new developments within that year that but made them suddenly change their mind but then I had to have like two blood tests fourteen days apart after the wash-out treatment to find out what levels were in my bloodstream and no-one knew where this test could be done or how it had to be done which was quite scary thinking, ‘Well there must be lots of people which have been on this medication which then want to have a baby.

You must have had to do this before?’ And I think it took about a week for my rheumatologist to find out how the bloods had to be done and then it had to be ordered in and we ended up waiting so much longer than what we’d planned before we could start trying because of these blood tests which had to suddenly had to happen and they took longer than we were expecting so that was quite frustrating. It was quite nice because my GP surgery gave me the telephone number for our midwife so I phoned and spoke to her about my other medications and things she was, I was on and she said really I need to just speak to my GP but make sure to start taking folic acid every day. So I went to the GP and talked about all my other medications. I actually ended up having two appointments with different GP’s. The first one kind of like said, "Oh you’re alright on everything," and the other one said, "Well really you want to be off as much as you can," and he’s the one I see more often so I went with him. But he’s been really supportive, like I’ve been quite poorly since I had my flare up in September because I’ve had a cold and chest pain and stuff as well and every time I’ve been to him he’s been like, "Well we’ve got to be careful because obviously you’re trying to have a baby," so he’s took that into consideration when like he’s given me antibiotics and things like that.

So yeah the support from my GP’s been fabulous. The contradictory information which you get from different services is a bit dodgy. I find it quite strange that knowing that I want to have a baby that the rheumatologist or the GP hasn’t said about speaking to like an occupational therapist to speak about things like that. And also I don’t know to speak someone about like the whole pregnancy and birth and things like that because surely that’s something I’ve got to consider. I get pain like in my hips and stuff so giving birth might be an issue but haven’t really gone down that road yet and I know at one point someone said I’d have to have a consultant led pregnancy and then at my last appointment she said, "Oh I’ll see you in six months-time." I go, "Would you need to know if I’m pregnant before then because does it not need to be consultant led?" and she’s like, "No I don’t think so." So yeah the contradictory information is the worst part of it but yeah.

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People wondered if pregnancy could have a positive impact on their arthritis as they had heard of symptoms improving during pregnancy.
Charlotte Z had heard that arthritis pain was similar to labour pain. She said if she can handle the arthritis she should be OK going into labour. Emma wondered if symptoms got worse after labour with the sudden hormonal changes.
People also talked about the practical and emotional challenges of being a parent with arthritis. They worried that they wouldn’t be able to carry their baby, or be able to chase their child if he or she ran off down the street. They also wondered if breastfeeding was an option when taking medication.

Kerrie is close to her family and always wanted children. She can’t start trying for a baby until…

Age at interview 25

Gender Female

Age at diagnosis 22

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I think I’ve always wanted to have a family and have children. I come from a very close family myself. I’m very close to my mum. I have a very close relationship with my sister and my grandparents, aunt, you know. So there’s never been anything else in my mind that was ever going to happen and I suppose, when I was first diagnosed, I didn’t think anything was different in that aspect, you know. But as time has gone on I’ve heard things and I’ve done my research into how my condition might affect my chances of getting pregnant, what might happen, you know, in terms of everything around motherhood I suppose and how difficult life can be to raise a child anyway but with a condition that leaves you sometimes not mobile, you know, how would that work. And but again, I think it’s is gaining other people’s knowledge, you know. I I’ve talked to a lot of people that have got my condition and have had children and gone on to have big families and they struggle but they do it, you know, because that’s what they want to do and I wouldn’t ever want to be held back from, you know, having a family just because of fear, I suppose, of what could happen or what might happen.

So you’re hoping for a family sometime in the future?

Yeah.

it’s always a weird one to ask this, but do you have a particular date, period in mind, age?

No, that’s one thing I think that really is not concerning, but is the difficult thing because the treatments that I’m on I have to not be on when I conceive. So all of my treatments because of research that’s been done on how they affect a foetus. So basically, I have to stop medication for a whole year before I can even try and conceive. So that’s why I guess I’m thinking about it now because I know that there’s quite an actual long period of time between when I say, I’m ready to have children To actually physically having a child because, you know, you don’t know how long it’s going to actually take for conception. You know you’ve got, obviously, nine months for the birth, then you’ve got that period of a year when you have to be clean of medication.

So there’s a lot of things to think about and I guess that’s why, even though I’m twenty five, I think I’m relatively quite young, for me it’s like even if I decided today, Right. I want to have a baby it’s still going to be realistically another two years before that happened. So, you know, it’s a lot to think about really and I suppose I am thinking about the next sort of couple of years ahead now and what might happen there. So…

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Charlotte Y was off her mediations and was trying to have a baby. She planned to speak to an occupational therapist for practical advice when she got pregnant.
People were concerned about the risk of passing arthritis on to their children. Some had decided not to have children because they didn’t want to risk having a child with arthritis. Emma said she would rather adopt a child. Jenna said she wouldn’t want her child to have arthritis but at the same time she could pass on advice about how to cope with the condition.
You can find more information about experiences of pregnancy and childcare from people who have rheumatoid arthritis on this website.