Chapter twenty-seven
SEX AND ARTHRITIS
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Chapter twenty-sevenSEX AND ARTHRITIS |
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Note: This is the original text of the chapter in the 1992 book and it has not been updated. Page numbers refer to pages in the book.
What sort of problems might arthritis cause?
Seeking outside help
Some self-help ideas
Contraception
Helpful organisations and publications
Write to ARC for the booklet Arthritis: Sexual Aspects and Parenthood (enclose SAE). It's worth reading, even though it deals with pregnancy before looking at contraception! I'll tell you about other relevant publications later.
So many books, especially those 'for disabled people' launch straight into the doom and gloom of problem sex. So let's start, instead, with the joys of sex. By 'sex' I mean 'making love', high quality sex, where the coupling of the genitals is only a part (not necessarily always an essential part) of a whole mass of psychological, emotional and sensual interactions between two lovers.
OK, so arthritis may mean you need to rethink and reorganise your sex life, just like other aspects of your life. Pain and stiffness and fatigue may sometimes cause difficulties, especially in a flare-up, so too may your psychological reactions to the arthritis, but if you can get your sex life right, even just occasionally, what a tonic. Marvellous medicine:
"It is not only the physical pleasure of orgasm that's so important. Equally valuable is the pleasure that comes from giving pleasure, the psychic boost of being acknowledged as a lover and experiencing the satisfied response of a loved partner. This is a real basis of femininity and masculinity… Sex is not just a physical act, it is a means of telling your partner your feelings, your love, and your joys; of sharing a deep unconscious pool of real individuality." (Dr Wendy Greengross in Entitled to Love, J M Dent)
Even if you have to cut down on the quantity, there could well be an improvement in its quality! As psychiatrist Sandy Burnfield says, in the book about his own chronic illness:
"Sexual experimentation can lead to new ways of giving one another pleasure and there is some evidence that people who are disabled often enjoy a sex life with their partners that is more variable and imaginative than that of many able-bodied people. Those who are disabled may have to make adjustments and to experiment!" (In Multiple Sclerosis: A Personal Exploration, Souvenir Press. Multiple sclerosis is medically very different from RA and its cousins, but there can be similarities in impact on lifestyle.)
Incredible though it may seem to the ablebods of this world, the very fact that certain problems need to be overcome may well lead you and your partner to discover more about yourselves and about lovemaking than you did before. Normally, it's easy to lose sight of all the things other than basic sexual mechanics which go towards making a warm, caring and satisfying relationship.
Reading what some 'sex therapists' write makes me wonder how they'd cope if their sex lives were suddenly complicated by chronic arthritis. Having trained themselves to be aroused only by the most exotic methods, can they ever really know the intensity of arousal that can come from the simplest of things – the sensuality of the hair on a man's chest, the sensitivity of an ear lobe, the softness of a woman's skin? If pain and fatigue ruled out full intercourse for them, could they fully appreciate how much pleasure two people could still bring to each other?
Being fit and healthy doesn't guarantee a wonderful love life. Look at all the well-publicised messes some 'healthy' people make of their love lives. Outwardly healthy people may well be emotionally disabled inside. Vice versa, too: outwardly disabled people may be wonderfully healthy inside… In both cases, the disabilities, inner or outer, can be dealt with. Maybe not always completely eliminated, but certainly understood, and reduced to realistic proportions.
Yes, there may be problems, made worse if you find them difficult to talk about and share. In a perceptive chapter called 'The Image of Rheumatic Disease', in Altered Body Image – The Nurse's Role, edited by Mave Salter (John Wiley and Sons, 1980), Rheumatology Nurse Practitioner Jan Maycock reminded her colleagues that sexual drive can be reduced by chronic pain, feelings of lethargy, changes in self-esteem and body image, and, sometimes, depression; some medicaments used in treatment may also reduce sexual drive. She pointed out that although a patient with a rheumatic disorder may be worried about sexual adjustment, it's something that's not often discussed openly by health professionals.
Please don't be depressed by this. It's just to show you that you're not alone if you are having difficulties. Problems can be overcome, not least through simply letting any worries come to the surface. With time and patience, understanding and adjustment, and outside help if necessary, the joy and tonic of sex can replace sex-and-arthritis worries.
As you'll know from other parts of this book, there are few instant solutions, so do be patient. The early days, when it's all a new and unwelcome experience, may be the worst, for you and your partner. Be caring and comforting to each other. Keep touching and being affectionate even if anything more energetic seems, for the time being, out of the question.
In Towards Intimacy (Eurospan Group, 1978) a woman with RA says:
"We don't do much 'hard-core sex', but find our greatest fulfilment in slow, deep touching and holding. We can't seem to get enough cuddling. It's different I guess… cause we can't do much moving, but that doesn't seem to detract from our pleasure."
Take heart from the assurances of old-handers, that you can put the jigsaw pieces together again, maybe not in the same pattern as before, but in a good pattern even so.
Thoughts follow on self-help, but do seek outside help, if necessary, however difficult taking the first step might be. Many problems can be solved quite simply by talking them over with an unbiased and independent 'third party'. The underlying causes of some problems may well be the same as those which cause problems for anyone, arthritis or no arthritis, due perhaps to a lack of communication and unsatisfactory relationship with one's partner, or sexual inexperience or inhibitions, or maybe a poor self-image and poor self-esteem.
You could seek help (counselling) either alone, or together, from your doctor, from a Relate counsellor, from a family planning organisation, or from SPOD, which is specially for people with a disability: SPOD's full name is the 'Association to Aid the Sexual and Personal Relationships of People with a Disability'), and there's a phone helpline (see page 225). Some GPs are specially trained to help people with sexual problems, or may refer you to an NHS sex therapy clinic or some other counsellor. Look back at page 110, the section on 'talking therapy'. Some OTs and rheumatology nurses may also be able to help. There are books and leaflets you can read, too. Details on page 225.
1. Dealing with emotional and psychological problems.
"Psychological and emotional responses are an integral part of lovemaking. They awaken desire and influence performance, and it is these that need to be looked at if a couple are experiencing sex problems. Impotence and frigidity are nearly always caused by unacknowledged emotions. Jealousy, resentment, anger, insecurity and feelings of inferiority, both conscious and unconscious, can prevent and block the communication that should take place during intercourse…" (Dr Wendy Greengross, Entitled to Love, J M Dent)
Talk together about your feelings, listen to each other, and show that you care about the other's feelings. Avoid blame and criticism. Substitute praise, cooperation and understanding. Work on the other ideas in chapter 26. The Relate book, too (page 217), gives lots of really helpful practical advice. If you can't overcome communication blocks through self-help, seek outside help.
A common worry, of both partners, may be of causing hurt. The fit partner may avoid touching or caressing for fear of hurting the other, and pain and stiffness may make it difficult for the YPA to be loving in turn. The YPA needs to be able to say 'come over here and give me a cuddle', or 'I like you touching me this way' (rather than another). The partner shouldn't hold back from finding out what gives pleasure rather than pain.
Ideas can also be too rigid in the opposite direction! If you consider yourself very sexy and expect great athletic performances and great orgasms every time, it'll be difficult to come to terms with any failures or problems.
Both sorts of people need to open their minds and bodies to things like non-coital pleasuring in all its many forms, to the pleasures of mutual or solo masturbation and stimulation, and to the pleasures of 'simple' bodily senses and feelings, as well as to alternative positions for full sexual intercourse. So widen your ideas and information on sex! The idea isn't to make you miserable about all the antics you can't accomplish, but instead to loosen any inhibitions, any preconceptions about what is and isn't possible and pleasurable, and to contribute to your fantasies!
Read, for instance, books like The New Joy of Sex, Men and Sex, and others mentioned in this chapter (by post from Healthwise/FPA is a nicely unembarrassing way to get them). The books don't concentrate exclusively on weird and wonderful Kama Sutra positions, but do emphasise emotional and psychological aspects, as well as sensuality generally, for instance erogenous zones and the pleasures of touching and using other senses. Books like these may be reassuring too in showing you that much of what you feel applies equally to people without arthritis.
With arthritis, washing, making-up, doing your hair, dressing attractively, may become difficult or just too much bother, and if you feel like a doddery and ancient so-and-so inside anyway, it's hard to believe anyone might find you attractive or lovable. Similarly, a man who equates masculinity with a strong, active, virile body may wonder how his weakened body could ever be attractive to a lover. How the arthritis affects other areas of your life can undermine your self-image too, for instance if as a man your career or role as breadwinner is threatened, or if as a woman at home your homemaking and child care roles suffer.
Feeling unlovable may even lead to the partner with arthritis consciously or unconsciously making him or herself unlovable or unapproachable, and rebuffing approaches by the other partner. Sadly, if the latter doesn't understand, s/he in turn may draw back and become aloof, leading to a 'vicious circle' of misunderstanding and apartness, at the very time when you both could gain so much comfort from each other. Instead, with patience and understanding, the fit partner could do much to boost self-confidence and self-esteem, to show the partner with arthritis that s/he really is loved 'warts and all'. In Towards Intimacy, someone with RA explains her feelings:
"My knees are the ugliest part of me cause the arthritis has really deformed them – I want my partner to acknowledge them in a tender, loving way, rather than to avoid them." (Eurospan Group)
The book doesn't say if her partner knew what she wanted. Quite possibly he might have been too embarrassed or worried about hurting her, or simply at a loss to know what to do… Or he might not even have noticed her knees! But if she could get the message across, he would at once know how to respond, and how to give her pleasure. Her knees would become a positive asset to their love-making.
However difficult the arthritis makes it, try to take a pride in being 'nice to know' and avoid neglecting your personal care and appearance. Looking good, and feeling good, are an important part of a good self-image and sex life.
If you're a man with arthritis, with doubts about your attractiveness to women, read something like Bernard Zilbergeld's Men and Sex (Souvenir Press Ltd), especially the chapter 'Some Things You Should Know About Women'. Non-disabled women talk about what they want in men – none excluded by arthritis:
"We want men, not supermen; lovers, not beasts; and intelligent, warm companions, not Hollywood handsomes stroking their egos at our expense.
"I like a man who feels free to be vulnerable, to give up his masculine stereotype, who can be gentle and sensitive and passive, as well as aggressive. A man who allows me to do the same. A man who can relinquish control of the lovemaking and allow it to be a shared experience. A man who can tolerate imperfections in himself; his penis, and me… A man who appreciates and enjoys women's bodies – even the not-so-perfect ones.
"Actually, the things I respond to most in men are qualities which are traditionally considered feminine: tenderness, gentleness, caring, touching, and sensitivity to emotions."
2. Overcoming physical problems caused by arthritis
"It is because physical closeness and the caring touch can bring so much comfort and reassurance to a marriage that it is most important to sleep in a double bed. I am against single beds for almost any married couple, because I believe that the psychological as well as physical gulf between two singles is so great that it can eventually result in a couple drifting apart themselves. Even for the able-bodied who sleep separately, getting out of one bed and into another, especially in winter in a cold bedroom, takes such an effort of willpower that many people think twice before bothering. And that is how the physical expression of love can begin to disappear completely. How much more likely that the disabled will abandon the initiative, if the effort to move from one side of the room to the other is hazardous and even painful. If you are already in bed together, even if sexual intercourse is rare, you are still close and can communicate feelings of love and tenderness just by touching an arm or stroking a limb. It keeps a couple in touch with each other. And touching with no clothes on, even without sexual intercourse can be extremely comforting and pleasurable. Sex can disappear only too easily out of the life of a married couple if they turn their backs on each other too often.
"If a disabled partner finds there are times when he or she suffers particularly from pain or discomfort, and is likely to disturb the other by a restless night, then obviously a move to a single bed is sensible. In that event it might be advisable to have two singles that zip together, or a double with a spare single somewhere else." (Dr Wendy Greengross, in Entitled to Love, J M Dent)
Don't mope about what you can't do together. No one has to copy the Kama Sutra in every detail! Enjoy what you can do. And remember love-making isn't only about taking pleasure, it's also about giving pleasure. If you, the partner with arthritis, are in too much discomfort to want full intercourse, maybe you can sometimes still muster enough energy to bring your partner to a climax? You can both get a lot of pleasure, even orgasm, from giving each other pleasure without full intercourse.
Try too books like Delta of Venus or Little Birds, erotica by Anais Nin (Star books, W H Allen), or love poems, for instance in The Penguin Book of Love Poetry edited by Jon Stallworthy, eg John Donne's To His Mistress on Going to Bed. Maybe you prefer raunchy Jackie Collins, Jilly Cooper or Judith Krantz novels, or Mills and Boon type books? Many books are in paperback, and available by post, eg from J Barnicoat (page 115) or Healthwise (page 114).
"The man lies on his back while the woman sits or lies on top of him, either facing him or with her back to him. This could make a positive difference if the man cannot move without pain, or finds it difficult to support his weight on his arms, shoulders or knees.
"There are also a whole series of positions involving the husband sitting on a chair or on the edge of a bed while his wife gently lowers herself on to him. Alternatively, there is the position called 'spoons' where the woman lies on her side and the man lies behind her.
"There are now many respectable books available which explore this area more fully – many with photographs or drawings that greatly help the explanation."
For a woman, support under the legs with one or more firm cushions or pillows may help. Or penetration from the rear, with the woman lying on her front, may overcome some hip difficulties. After a hip operation you should wait several weeks before trying intercourse; check with your surgeon how long. Once you start again you might still for a while want to avoid having weight placed on the new hip: Professor Hardinge suggests a position which could also be tried for a non-operated stiff hip:
"the female lies on her back and her partner lies alongside on the opposite side to the operated leg. The operated leg is moved out to the side and the non-operated leg is lifted upwards so that the partner, lying on his side can make a satisfactory entry. If for reasons of bodily dimensions, entry cannot be made from this position, it would be wise to wait a few weeks until the female can tolerate bearing her partner's weight on top of her." (In Hip Replacement: The Facts, Oxford University Press)
SPOD produces various leaflets that may help you work out other positions, eg Useful Diagrams for Positions for Sex for either Men or Women Suffering from Arthritis.
You can get (by post) leaflets and books explaining different methods from the Family Planning Association (FPA), for instance the BMA's Contraception: Choice not Chance by Dr Barbara Law, John Guillebaud's excellent The Pill (Oxford University Press), and Robert Snowden's IUD: The Woman's Guide. SPOD have an advisory leaflet on contraception for people with disabilities, and a phone counsellor (see page 225). The FPA also have a phone counsellor; a family planning nurse and information who can talk you through your options. One of the College of Health's phone tapes (page 119) is on contraception.
You could go to your doctor for contraceptive advice, or you might prefer a family planning clinic. For the address of the nearest look under 'Family Planning' in the phone book. The FPA can supply some contraceptives by post, eg condoms, diaphragms and spermicides for people who find frequent visits to a clinic for supplies difficult. Details from Family Planning Sales Limited.
Some methods, eg the cap, may be difficult if your hands are bad; don't be shy about saying so. If you choose 'the Pill' make sure your GP and any other doctor who treats you knows you're on it. Interaction with other drugs will need to be thought about, eg some antibiotics, barbiturates and anti-convulsant drugs may reduce its effectiveness. You should be aware too that its effectiveness may be reduced if you have a 'stomach' upset, eg vomiting or diarrhoea. And if you're due to have surgery you'll probably have to stop the pill beforehand; ask your surgeon's advice. For contraception in lupus patients the oestrogen-containing pill isn't recommended, as it may cause greater disease activity.
Masturbation's the stimulation of the sex organs to produce pleasure, even orgasm, by means other than sexual intercourse. It can be enjoyed by anyone, whether in a relationship or not. If arthritis causes problems with masturbating, perhaps because of uncooperative hands, you might wonder about using sex aids, eg vibrators and electric masturbators. SPOD comments helpfully:
"Using sex aids is an idea that some people find hard to accept, but they can provide a lot of pleasure; part of the problem with aids is the lurid nature of most brochures. Work is in progress on producing a more sober version, of aids suitable for those with physical handicaps: SPOD will be able to advise on its availability."
One of the College of Health's phone tapes (page 119) is on masturbation.
Relate See page 217, and send an SAE for their Sex and Sexual Problems list of books available by post.
SPOD SPOD's full name is the 'Association to Aid the Sexual and Personal Relationships of People with a Disability'. It's a charity, founded in 1972 by a group of professional carers. It provides an information service on sexual aspects of disability, and an advice and counselling service for disabled people in sexual difficulty. Write, with SAE, for SPOD's publications list. A telephone counselling line for people with sexual or relationship problems is open on Monday and Wednesday mornings, and Tuesday and Thursday afternoons (071 607 8851, ask for the counsellor).
Family Planning Association For general information on relationships, sexuality, birth control, etc, send an SAE asking for their Healthwise mail order catalogue.
Brook Advisory Centres Brook Centres offer free birth control advice and supplies to young people, and also help with emotional and sexual problems. Centres open on weekdays, and some open in the evenings and on Saturdays too.
Other publications:
There are masses of other 'non-disabled' sex books on the Relate and FPA/Healthwise booklists, which can be bought by post from them, including these: