Sex & Rheumatoid Arthritis:
"How was it for you?"
Margaret Byron, Consultant Rheumatologist, Bristol
Original article: 01/10/2001
Reviewed: N/A
Next review due: 01/10/2004
How's your sex-life? It's not a question you'd expect to hear from your rheumatologist and in general you'd be right if a straw poll I carried out recently is anything to go by. We cannot get away from sex. It's 'in your face', if you'll pardon the expression. From the fumbling under the blanket in the Big Brother household, through articles in magazines on how to 'wow ' your partner, to increasingly explicit sex on television and in films, there is certainly a fascination with the subject. Advertisers frequently exploit sex, using it to sell anything from ice cream to kitchen cleaners. Yet when it comes to our own sex life we suddenly become coy and tight-lipped, exhibiting a 'No sex please, we're British' expression.
Reproduction is important for ensuring the survival of humankind. It sounds pretty obvious and boring, and it certainly isn't the sole purpose of sex. As Anna Freud (daughter of the famous Sigmund Freud) said 'sex is what we do and sexuality is what we are' (well she would, wouldn't she). She has a point though; our sexuality is bound up with our attitudes, beliefs, traditions, body image, self-esteem and probably a few other things. Add in personal relationships and the issues become really complex.
Rheumatology teams pride themselves on taking a person-centred approach to the services they offer their patients. So does that include sexual issues? A survey of some of my medical and nursing colleagues (about 20 in all) suggests not. This is hardly a scientific study but my experience at a number of different rheumatology units suggests that these results are fairly typical (apologies to those who practise differently). Only one doctor routinely enquired about sex when seeing patients with rheumatoid arthritis (RA) and this was limited to teenagers. The nurses said they would raise the issue once they got to know the patient. Most relied on the fact that some leaflets were available in clinic though several doctors did not know of such material and six doctors could not name any sources of information. A pretty poor show, but are patients any more forthcoming? It seems not. Although studies reveal that as many as two-thirds of patients admit to sexual problems directly related to their arthritis very few seem to mention these in clinic and items relating to sex in questionnaires are often left blank, even when done anonymously!
There seems to be a conspiracy of silence. Anyone would think that the Sexual Revolution had never occurred and that we still lived in a time when women were expected to 'Lie back and think of England'. Maybe the problem is that we're all a little uncertain about our own sexuality. After all the media and entertainment industry give us the impression that everyone else has a perfect sex-life. Well we can bust that myth ... There's no such thing! Everyone's sex-life has its ups and downs, but the addition of a long-term, painful condition can have major effects and these need to be discussed and addressed.
The good news is that although patients admit to problems related to sex, they are not permanent and many are relatively mild with simple solutions. Getting down to basics, the sexual apparatus generally works normally in women and men with RA. Fertility is normal as well as age at menopause. Some women experience dryness of the vagina, sometimes related to RA or perhaps to the normal dryness as the menopause approaches. Simple water-based lubricants such as KY jelly, available at chemists will usually relieve this. Not surprisingly patients find sexual drive and satisfaction with sex lowest when their disease flares, pain levels are increased and fatigue is prominent. There are several ways around these problems, such as taking extra pain killers before having sex, or planning to have sex at a time when energy levels are at their best. This will vary for different people but generally the middle of the day is best for people with RA. What is lost in spontaneity is made up for in anticipation that could be heightened by a warm scented bath or a massage, perhaps shared with a partner. If a flare persists it's important to seek professional advice to get the best possible control of the arthritis.
Although hip and knee problems can cause difficulties with certain positions for intercourse, surveys show that most couples find ways around these, sometimes using mutual masturbation to express their sexual love. There is plenty of advice available on this, sex-aids, contraception, pregnancy etc (see 'Useful Organisations'). Men with RA sometimes experience difficulty with erection but this seems to be more related to effects on the man's sexuality and hence his sex-drive. The effect of RA on sexuality is probably the key to many of the problems for men and women.
Body image is an important factor in our sexuality and unfortunately society frequently determines what is the 'body ideal' the image we aspire to. Nature however gives us the 'body reality' and how we combine these two gives us our 'body representation', in other words, how we choose to present our body and express our individuality in society. Body image is a vulnerable part of our make-up and an illness that alters the body may interfere with our self-image and eventually our self-esteem; that is how we value ourselves and how we interpret the way others see and value us. Rheumatoid arthritis not only brings painful symptoms but changed roles within the partnership or family (who does the DIY, the cooking, shopping etc), threat to employment (who is the main 'bread-winner', financial difficulties), and anxiety about the future. It's not surprising that sexual desire is diminished. Partners without RA may also find their roles have changed and they may be fearful of hurting their loved one during intercourse. Both might be unsure how to view each other sexually. If this is not communicated a vicious circle is set up with the loss of intimate, emotional, loving contact leading to greater reluctance on the part of either partner to initiate sex.
Communication is vital. For some it will be easy to discuss their desires with their partner because that is what they are used to. Others might find it more difficult because they are from families where sex is not discussed or there are cultural taboos. Talking to someone is important. Choose a close friend or someone independent from the healthcare team or get advice from the organisations listed. Bringing the issues out into the open might help diminish the emotional impact of them and indicate the way forward more clearly. Growth of sexual awareness is a lifelong process and there are no rights or wrongs when it comes to experience. I remember a fascinating talk about sexuality given by a nun! She had chosen to give up sex but still saw her sexuality as a vital part of her being. Rheumatoid arthritis often increases the need for love, reassurance and physical closeness for the patient and partner. Help is out there for any of us who need it.
Use it. Don't lose it!
Useful Organisations
- Arthritis Care and Young Arthritis Care 18, Stephenson Way, London NW1 2HD Helpline: 0808 800 4050 (10am-4pm, Mon-Fri) info@arthritiscare.org.uk
- Arthritis Research UK Copeman House, St Mary’s Gate, Chesterfield, Derbyshire. S41 7TD. Phone: 0300 790 0400 enquiries@arthritisresearchuk.org
- British Association for Sexual and Relationship therapy PO Box 13686, London SW20 9ZH. Phone: 020 8543 2707 info@cosrt.org.uk
- Brook Advisory Centres 421 Highgate Studios, 53– 79 Highgate Road, London, NW5 1TL. Phone: 0808 802 1234 (free confidential advice for under 25s)
- fpa (formerly Family Planning Association) 50 Featherstone Street, London, EC1Y 8QU. Phone: 0845 122 8690
- Regard BM Regard, London WC1N 3XX. Phone: 08444 431277 (Specifically for gay men and lesbians) secretary@regard.org.uk
- Relate - Marriage Guidance Premier House, Carolina Court, Lakeside, Doncaster, DN4 5RA. Phone: 0300 100 1234