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.
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.
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.
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”.
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.
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.
Some of the people we spoke to didn’t feel that arthritis affected their sex life on a day-to-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.
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.
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.
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.
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.
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
from people who have rheumatoid arthritis on this website.