What is in this booklet?
Arthritis can have major effects on all aspects of a person’s life and may cause problems with relationships and affect sexual functioning. This booklet discusses common problems and gives advice on how they might be dealt with. It is aimed at people with arthritis and their partners. It does not discuss contraception, AIDS or other sexually transmitted infections.
A short booklet like this cannot deal with all aspects of such a complicated subject, but we hope it will encourage communication and mutual understanding. Although the pictures at the back of this booklet show heterosexual couples, gay people with arthritis will face similar problems, and we hope that the general advice on managing relationships will be helpful for all couples.
At the end of the booklet we list other groups and organisations you can approach for further information and support.
What is a ‘normal’ sex life?
Modern papers and magazines often give the impression that everyone else has a perfect sex life. It is important to realise that this is not the case and that many people experience difficulties with relationships or with sex. Arthritis can certainly present additional problems but the arthritis is not necessarily responsible for any difficulties you may have with your relationships or sex life.
People with arthritis are just like everyone else in that they have different preferences about sexual behaviour or orientation. Our sexual needs and attitudes change with time and experience. For example, you may find that sex is not as exciting or as satisfying as it was. Remember that most couples go through phases like this. In any relationship the two partners need to consider each other’s feelings and talk through any difficulties in order to maintain their relationship.
Will our relationship change because of the arthritis?
Just like any other health problem, arthritis can affect a relationship. It may affect your ability to hold down a job or to work within the home. This may cause financial difficulties and place extra demands on one partner. If you have prided yourself on your ability to work, earn money or do whatever you want independently, then your arthritis can lead to loss of self-esteem and be difficult to cope with. You may experience some degree of depression – this is quite common.
In some relationships one person plays a dominant role and tends to organise the other. A balance which has been established can be upset by arthritis. You both need to discuss the changing situation and decide how to adapt to it.
If one partner becomes financially or physically dependent on the other there is a risk that the relationship could be manipulated so that one person is pressured by the other to do things they would rather not do. The arthritis should not be used as an excuse to change your personal or sexual relationship in a way you are unhappy with. If this is happening then discuss the situation with a friend, your doctor or a counsellor (see ‘Who else can I discuss things with?’).
Most people with arthritis prefer to retain as much independence as possible. If one partner is taking on the role of carer, s/he will need to find the right balance between providing help and support and not overprotecting their partner. The arc booklet ‘Caring for a Person with Arthritis‘ gives more advice on this, but the important thing is to discuss the situation with your partner.
With time every couple can adapt to the challenge of arthritis, although some couples do so more easily than others. Many couples find that their relationship becomes stronger as a result of the increased sharing of activities and the discussion this entails.
How will I manage if I am not in a relationship?
Most of us have doubts about our ‘image’ and attractiveness. Your self-confidence can be badly affected if you have swollen joints or other visible reminders of arthritis, such as scars from operations. If you are restricted by your arthritis and find it difficult to go out to pubs, clubs or dances, then you may feel unable to form new friendships, let alone a new sexual relationship. But although sexual chemistry is important, most relationships evolve grad-ually and depend upon shared interests rather than simply the physical side of the relationship. People tend to meet through work, common friends, family, clubs or a church, so keep up your social contacts, even if you feel tired or in pain, and try to find new activities to replace those that you no longer feel able to take part in. If you are under 46, meetings of Young Arthritis Care may help.
You may meet people who find it difficult to relate to someone with arthritis, but this is their problem, and it need not be yours! And remember that many people find it difficult to find a suitable partner, or sometimes feel unsure of themselves when meeting new people.
What should my partner know?
It is sometimes difficult to discuss sexual matters, even when you have shared a long-standing sexual relationship. Severe arthritis can seriously affect one partner’s appetite for and enjoyment of sex, and this will often have an impact on the relationship. It will be difficult to work through this unless you discuss it together – you both need to know something about the arthritis and what effects it can have.
To start with you may feel you need to hide your arthritis from your partner or from yourself. This can be possible if the arthritis is not severe, but it will not work if the arthritis is affecting your physical and sexual function. You do need to try to tell your partner about any concerns you have and discuss how you can work together to overcome any difficulties which the arthritis poses.
Will having sex affect my arthritis?
Anyone with arthritis knows that moving an affected joint can be painful. Sex can be physically demanding and may cause discomfort, particularly when the hips or back are involved. However, sex itself is not going to worsen your arthritis. If sex is a regular part of your relationship then you should try to keep it so.
Reactive arthritis (previously called Reiter’s disease) can be triggered by sexually transmitted infections such as chlamydia (see arc booklet ‘Reactive Arthritis’). If you have had an episode of this type of arthritis you should take special care (such as using a condom) to avoid getting such an infection, as it could cause the reactive arthritis to come back.
Will arthritis affect my sex life?
Anything which affects your mood or feeling of well-being can influence your desire for or enjoyment of sex. Like many other illnesses arthritis may adversely affect your moods and how you feel generally. Swollen joints can make you feel less attractive physically, and this can lead to lack of self-esteem and loss of self-confidence in sexual matters. In physical terms, discomfort during sex may reduce your desire for sex or your ability to enjoy it. It may be uncomfortable to move joints into a position which you have been in the habit of using during sex. Possible practical solutions are discussed below. Remember that arthritis can bring a couple closer together if you can discuss the problems which it poses, and this may actually improve your sex life.
Sex is not equally important to all couples. Our sexual behaviour varies widely. For some couples it is usual to have sex on a daily basis; for others it may be weekly, monthly or less frequently. Younger people tend to have sex more often than older ones, and those in a new relationship tend to do so more often than those in a long-standing relationship, but again there are many exceptions. Some couples have a fulfilling and happy relationship without sexual relations – they are quite content to hold hands, have a cuddle or exchange kisses without going on to full sexual intercourse. Your aim should be to continue whatever sexual relationship meets your needs and your partner’s.
Will my joint replacement affect my sex life?
If a hip or knee joint replacement operation is planned for you, the pain from the affected joint is probably interfering with your sex life already. The operation may well improve your sex life as well as your walking capacity. Remember it takes some time to recover from the effects of an operation and for the wound to heal. You should be able to resume sexual activity as soon as you feel able – generally after 6 weeks.
However, with a hip replacement you need to take care with certain movements because there are some with which there is a risk of dislocating the new joint. These are, in particular, bending the leg up (flexion) and moving one leg towards the other (adduction). When you have the operation your nurses, physiotherapists and occupational therapists should tell you which movements to avoid. If they don’t discuss this or give you information on positions for sex, then make sure you ask them. They will have been asked the same question many times before. See also the arc booklets ‘A New Hip Joint‘ and ‘A New Knee Joint‘.
How can we overcome difficulties with sex?
Difficulties can be physical or psychological or both. Problems in one area often lead to difficulties in the other. Your appetite for and enjoyment of sex is generally greater if you feel physically fit and active. Obviously, arthritis makes physical activities more difficult, but it is very important to maintain some form of exercise. This will help to maintain your muscle strength and tone and also the range of movement in your joints. It will also help you to remain sexually active.
Some psychological problems are common. You may have low self-esteem and feel unattractive or undesirable because of your arthritis. Fear of pain may make you apprehensive about sex. Your partner may be scared of causing you pain. Sometimes worries like this lead couples to withdraw from any physical contact so that even kissing and cuddling stop. It is difficult to work through difficulties like this unless you are prepared to discuss them frankly with your partner.
When having sex you should let your partner know if something is uncomfortable, but should also make clear what is particularly pleasurable and at the same time explore ways of returning pleasure. If you cannot resolve things yourselves, then involve someone from a professional organisation. Your general practitioner (GP) can refer you. (See ‘Who else can I discuss things with?’.)
There are different types of physical problems. You are not likely to have successful sex if your arthritis is in an active phase and your joints are particularly painful. So make the most of any opportunities on your better days. When pain is a problem, taking painkillers about an hour before having sex may help. This may not be very spontaneous but it is worthwhile if it makes sex more satisfying. Your joints may feel more comfortable after a hot bath or shower – why not share one with your partner?
Massage can help to relax joints and muscles and this can form part of foreplay. In women arthritis sometimes leads to a dry vagina, which may make penetrative sex uncomfortable. This can often be relieved by water-based lubricating gels such as KY Jelly or Aquagel, which are available from any pharmacy and many health shops. Oil-based lubricants such as Vaseline or baby oil may irritate your skin or damage condoms. Age may cause drying, which can be helped with oestrogen creams.
In Western society the ‘missionary’ position (man on top, woman below, face to face) has been the most usual position for sex. For people with arthritis this may be uncomfortable or difficult. You may need to try different positions for intercourse, and some variations are illustrated below (see ‘Positions’). There are numerous positions in which sex is possible and enjoyable. Intercourse is possible with one or both partners standing, kneeling or sitting. You should be able to find at least one position which is both comfortable and rewarding.
It is widely accepted that there are no ‘right’ and ‘wrong’ ways to perform sex: if both partners are happy with their behaviour it is appropriate for them. If you need to try different positions then this may bring some welcome variation to a long-standing relationship, so don’t lose the opportunity to experiment! At the same time you should not, of course, allow yourself to be pressured into doing something you do not want to do.
Penetrative sex is not the only way to achieve sexual satisfaction. Many couples find kissing, caressing and mutual masturbation rewarding and this may be particularly appropriate if vaginal sex is difficult or uncomfortable. Oral sex is also widely practised, although a painful jaw joint can cause discomfort.
You can also use sex aids. Erotic magazines, novels and films can heighten desire or aid foreplay. Vibrators are readily available from mail-order catalogues or in shops in larger towns or cities. These are used much more widely than many people realise, and they can be particularly helpful to relax painful joints and muscles as well as for genital stimulation. They are especially useful when vaginal and oral sex are not possible.
Men now live much longer than they used to and impotence is a common problem in older men. Since the advent of Viagra many men are now more willing than before to discuss such problems with their doctor. Sometimes a tablet may be the answer but in other cases an injection may be useful. You can buy a variety of tension rings and suction devices from mail-order catalogues or sex shops. These can be placed around the penis before sex to help to achieve and sustain an erection. Remember that such items are only available because many other men also have to face the same problem.
Who else can I discuss things with?
Most couples go through phases when their personal or sexual relationship is less than perfect. Having arthritis may create extra problems. If you can’t sort out your problems together, seek further help.
Many people are reluctant to discuss their sex life with others, but there is now much more openness than there was 10 or 20 years ago. Try to discuss any difficulties with the person with whom you feel most comfortable. This may be a friend or someone else with arthritis, but remember that their advice is likely to be personal rather than professional and it may not be reliable. Your GP may be able to help. If you attend hospital you may feel comfortable speaking to your doctor, nurse, physiotherapist or occupational therapist.
Counselling may be available through your general practice or hospital. Other organisations, including Relate and Brook, have trained counsellors who should be able to help.
Should I have a baby?
Most women with arthritis can conceive, and have a successful pregnancy, although there are risks associated with certain forms of lupus (see arc booklets ‘Antiphospholipid Syndrome’, ‘Lupus’). If you have lupus you should discuss the risks with your doctor.
Many people with arthritis will need to take medicines which can temporarily reduce the ability to conceive a child. For example, sulphasalazine can reduce the sperm count in men, and methotrexate and leflunomide can be dangerous to the unborn child (for more information see the arc leaflets on these drugs and the arc booklet ‘Pregnancy and Arthritis’). Some recent studies suggest that non-steroidal anti-inflammatory drugs (NSAIDs) taken around the time of conception may increase the risk of miscarriage. Paracetamol does not have this effect.
Some drugs can make the contraceptive pill less effective – ask your doctor about this. Some drugs, notably those used to treat high blood pressure or depression, can reduce sexual desire (libido) and lead to temporary impotence, but apart from steroids this is rarely a problem with drugs used by people with arthritis. If you are thinking about having a baby it is important to discuss your arthritis and its treatment with your doctor.
During pregnancy women with arthritis often have more discomfort in the back, hips or knees because of their increasing weight. The effects will depend on the type of arthritis you have. Women with rheumatoid arthritis often find that their arthritis improves during pregnancy. In contrast, women with lupus sometimes experience a flare-up while pregnant.
There is rarely any reason to give up sexual intercourse during pregnancy, but in the later stages of pregnancy you may find it more comfortable to use a different position from usual.
Childbirth itself involves moving the back and particularly the hips. This movement may aggravate joint pain in women with arthritis of these joints. However, different positions can be used and the vast majority of women with arthritis of the hips can give birth naturally. When you are pregnant you can discuss this with your midwife or obstetrician.
Breastfeeding should not present any particular problems, but some drugs can pass into breast milk (see arc booklet ‘ Pregnancy and Arthritis’). So it is important that you discuss with your doctor the possible adverse effects of any drugs you take.
Looking after a young child is very demanding physically. It involves lifting and carrying and also bending to pick the child up. These actions can be painful or difficult if you have arthritis of the arms, back, hips or knees. Your occupational therapist can advise on special gadgets or equipment which can make life easier for you – such as raised cots and bath stands.
If you have stiff joints in the morning this may reduce your ability to respond to a child’s needs quickly. This can be very frustrating for young mothers, so it is a good idea to think about this when you are contemplating pregnancy. A partner, relative or friend may be able and willing to help with these activities at times when they are difficult for you. Planning beforehand how you will manage to look after a young child can save a lot of worry after the birth.
Is my baby at risk of arthritis?
Couples who are contemplating pregnancy often worry that their baby may develop arthritis in later life. Most forms of arthritis do run in families to some extent. But this risk is generally small and most people with arthritis have perfectly healthy children, so arthritis should very rarely affect the decision to have children. In the case of rheumatoid arthritis (RA) slightly fewer than 1 in 100 adults in the UK have the condition. The likelihood of a first-degree relative (parent, sibling or child) of someone with RA having the disease is increased about three-fold compared with the population at large. This makes the risk of a child of someone with RA developing the disease around 1 in 30 (that is, they are much more likely not to get it than to get it). The risk for psoriatic arthritis is probably similar to the risk for RA, but the risk for psoriasis is higher. Although ankylosing spondylitis (AS) affects far fewer people in the population than RA, the risk of a first-degree relative of someone with AS getting the condition is higher than in the case of RA, at around 1 in 10. Research is continuing into all these disorders, so that by the time a child born now might develop arthritis, much more effective treatment will probably be available. This applies particularly to osteoarthritis and osteoporosis, which typically occur in later life. You should discuss the risks in your particular type of arthritis with your doctor. Lupus is a special case, since some women with particular antibodies in their blood may give birth to babies who have heart rhythm problems (see arc booklets ‘Lupus‘, ‘Pregnancy and Arthritis‘).
What should I eat?
A healthy diet will improve your chances of conceiving a baby and having a successful pregnancy. Fruit and vegetables contain nutrients, vitamins and minerals, and everyone should aim to have five items of fruit or vegetables every day. Taking folic acid will reduce the risk of having a child with spina bifida, and this is given routinely to pregnant women. If you are planning to have a child then it is wise to start taking folic acid before conceiving the baby. Both smoking and alcohol have adverse effects on the unborn child, and both should be avoided. For general information on diet and arthritis see the arc booklet ‘Diet and Arthritis‘.
Arthritis can upset not only a couple’s personal but also their sexual relationship. You can use the practical suggestions in this booklet to help resolve these problems. Resolving sexual difficulties depends on a mutually supportive relationship and your willingness to co-operate with one another to overcome problems. Many couples find that challenging arthritis together in this way improves all aspects of their relationship. If you are not currently in a relationship, communication is still an essential part of finding a partner and forming new relationships.