Chapter twenty-six MARRIAGE AND PARTNERSHIPS

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.

When arthritis is on the scene before a partnership starts
To get hitched – or not?
What about when arthritis invades existing partnerships?
What can you do about any relationship problems?
Essential skills for both of you
More ideas for you, the partner with arthritis
More ideas for you, the partner without arthritis
Further reading and helpful organisations

"Being an arthritic… is not romantic… What man is there, who would want to plight his troth to a woman who sits with her feet in a bowl of Epsom-salted water four times a day? Or to one who can't get her right arm high enough to wind it lovingly around his neck?…" (Marie Joseph, in One Step at a Time, Arrow Books)

Plenty of men, fortunately, do plight their troth. Including, despite the Epsom salts and RA, 'Mr Marie Joseph'. Most of us know what Marie means, though. Married or unmarried, we worry about the effects arthritis might have on a partner.

Any setbacks due to the arthritis will test the strengths and weaknesses in a partnership. Male or female, if the arthritis has laid you low, your spirits may be low, and your love life/marriage/partnership all too easily laid low too. You may worry about becoming a burden, about your body's ability to make love, worry your partner may walk out, etc. Added to which, alas, it is often our nearest and dearest who take the brunt of frustration and anger due, not to them, but to the arthritis. More setbacks…

It's true that any problems will test the love and strength of a relationship, but, as the experts on relationships, Relate Counsellors, point out:

"Meeting problems together and in the right way deepens love, and couples who learn to tackle differences positively can survive even serious crises." (The Relate Guide to Better Relationships by Sarah Litvinoff, Ebury Press, 1991, a really excellent book.)

How do partnerships that already exist cope, survive, even flourish when arthritis appears on the scene? And if the arthritis arrives beforehand, how does a successful partnership ever start?

When arthritis is on the scene before a partnership starts

The good news is that many of us who are unattached (except unwillingly to the arthritis) do find someone special to share our lives with. I was flabbergasted when my Special Person turned up, in my early 30s, and flabbergasted too that he actually had the patience to put up with the arthritis quirks which had long ago exhausted my patience. Even more amazed that he actually fancied me and my far from perfect body. Oh yes, and that I fancied him!

I know plenty of other YPAs too who've forged great relationships. How reassuring it would have been for spotty and doddery adolescent me to know all this was possible. Maybe you will meet that Special Person, and form a married or unmarried partnership. Maybe it'll take longer than you imagined. Or maybe you won't. Maybe, instead, you'll live a solo life, which need be no less happy and satisfying.

The important thing, whatever happens, is to value yourself and to keep the arthritis in its place, as only one of the very many things that make up the unique and special 'you'. When you feel comfortable with yourself, other people will feel comfortable with you, and you'll be well-prepared either for a successful relationship with that Special Person when s/he comes along, or for a successful solo life if Fate, or you, choose otherwise.

To get hitched – or not?
What happens when you do meet that Special Person, and a long-term partnership is in the air? You may have some misgivings:

"My deep love for Evan heightened my depression, for I felt I could be of no possible use to him in the future and I ought therefore to end our engagement. However, despite the many traumas, Evan stood by me as a tower of strength and I came out of hospital some 13 months after admission… Within four months of leaving hospital I was married and I must be the only person who has gone on honeymoon with a large bag of extra arms and legs [ie splints] for luggage…" (Carol J, with RA)

"When I was 26 I was going to get engaged but felt through my condition it was not fair to burden myself on a girl several years younger, because if I was ever to become really ill, by the time I was 30 she would still be a young woman and I don't think it would be fair on her." (YPA, with RA)

Doubts and worries like these are understandable. But it's appalling that other people should sometimes add yet more. When I was in hospital I was horrified to meet a girl who told me her fiancé's parents had stopped him marrying her when she'd developed RA. How dare they? (On second thoughts, maybe it was for the best: if he couldn't sort out his parent-problem what hopes were there for other black spots, inevitable in any marriage?).

Don't, for goodness sake, be put off by people like his parents. We've just the same right to love and be loved as anyone else. Even the right to be emotionally hurt at times, too. Plenty of people come to mind, physically fit, but totally disabled in their emotional relationship with each other. That's one way in which we don't have to be disabled!

True, other people, especially parents, may worry. That's understandable. Encourage them to air their worries, and to help you think through any problems and work out solutions together, rather than to create more by any antagonism. Don't though be dictated to about what you should or shouldn't do. You and your Special Person need to work out what's uniquely right for you two. Would living together be better than marrying, or vice versa, for instance? Here are some thoughts to mull over, when the two of you are thinking about a married or unmarried long-term relationship:

• Marriage is a mighty big step, arthritis or no arthritis. Just as you need to sort out your thoughts and expectations on money, for instance, or on children, so too sort out your thoughts on the arthritis. Make sure you both understand what you can about your type of arthritis, and that you both express and discuss any doubts and fears. Read, for instance, any relevant ARC booklets, and talk to your rheumatologist.
• Accept and admit to each other that there may be problems to be overcome. Try jotting down separately what worries you, then talk them through. By bringing fears into the open they can be dealt with and kept in perspective. Find out where you could get help if necessary.
• Though some worries are understandable, try not to be too negative. To my mind, some YPAs actually make the same mistake as many ignorant Jill and Joe Publics. They see themselves only as 'disabled', as 'burdens', as arthritis and nothing else, forgetting all the 'disabilities' and quirks, odd ways and habits, so-called non-disabled people bring to relationships, and forgetting completely their 1,001 other qualities and abilities. Write at least some of these down, to remind yourself and your partner!
• Coping with other people's misgivings. You could ignore them; or remind them that 'the able-bodied of today may be the disabled of tomorrow', which could include them, one day. Perhaps the best option is first to give them examples of successful 'arthritic partnerships'. Get them to express any worries; but make sure they know the true facts about your type of arthritis. They may think everyone with RA/its cousins will end up wheelchair-bound - very far from the truth. Or they may be unaware of all the help available to overcome problems. Don't be modest about your talents and abilities - make sure they hear all about those, too, not just about the arthritis. Remember that in the end what really matters is what you and your Special Person think and feel.
• Don't be so obsessed by the arthritis that you forget everything else! Look at some of the books and leaflets written for anyone contemplating marriage (eg on page 217, especially the Relate book). Think about what they say. Agony Aunt advice on 'giving and taking', on the importance of 'communicating' with each other, even tips on how to put up with his smelly socks/her chatting all through his favourite TV programme will all help to keep your partnership on a happy, even keel.
• Your sex life. Read chapter 27. Sex-plus-arthritis can go well or badly, just as it can for anyone. When it goes well it can be wonderful, and go a long way to making up for arthritis-induced difficulties in other areas of your life.
• Pregnancy and children. Get facts straight. Read chapter 28. Work out your thoughts on the subject together. For me, before I'd commit myself to a long-term relationship, it was essential my partner knew I'd decided long ago not to have children, and essential to hear his thoughts on the subject, and to be sure they were genuine.
• Might advice or counselling from a 'third party' help you both? For instance, a rheumatologist, an enlightened OT, a nurse specialising in rheumatology, or a Relate (relationships) counsellor? Or a Young Arthritis Care Contact? Besides giving you practical tips, it's sometimes easier to bounce ideas and worries off a third person than face-to-face in a twosome.
• Don't be so obsessed by any problems you might be bringing to the relationship that you forget to think about whether your partner might have any that need thinking about!

Some inspiring thoughts from Dr Wendy Greengross:

"No one is perfect, and the happiest marriages are between people who realise this, recognise each other's limitations and can express and accept their mutual feelings of inadequacy and their particular needs and anxieties. Communication is the key word in any discussion on relationships, sex and marriage; because the ability to put those very personal feelings into words and deeds not only helps a couple to understand and appreciate each other, but also helps them to grow as individuals, and the marriage to develop into something worthwhile and lasting.

"Where many marriages go wrong – particularly among the young – is in ignoring the fact that communication is not only communicating one's strong points. It is showing that there are weaknesses and vulnerable spots too. For the disabled contemplating marriage, the fear of being unlovable is reinforced by the fear that if they reveal their weaknesses they seem even less attractive. If they go into marriage concealing their real emotional needs and bottling up frustrations and depressions and putting a brave face on it, they will be heading for trouble. It is knowing that you will be loved warts and all that makes marriage a rewarding experience. No marriage can survive on false pretences…" (In Entitled to Love, J M Dent)

What about when arthritis invades existing partnerships?

Yes, partnerships do weather the storms, and they do thrive. Take, for example, a lovely lady I met in hospital. She's in her 50s now. She'd led a full and active life, working hard as a hospital sister, and enjoyed lots of sports too. RA struck in her early 20s, when she'd been married just a few months. The doctor told her she'd be in a wheelchair in no time and shouldn't even think about becoming pregnant. Soon afterwards she was. She produced two lovely daughters, now grown up, and, some 30 years and several operations later, she is still gallantly weathering ups and downs in the same happy marriage.

A good partnership has to be worked at, and will always have its ups and downs, but the ups are wonderful, and better than any medicine. Sadly, for some of us, there's the other side of the story too. The walkouts, even divorces, when the going gets too tough for some partners:

"My husband could not deal with the problems of my disability at the end of the day and so opted out. That I could have understood to a certain extent if he hadn't chosen to opt out with my best friend. It must be difficult being on the other side of the coin, coming home from work… and to more problems and sometimes despair. I'm sure he felt unable to help any more; for that I don't blame him… The person who has helped the most is my mother-in-law. She should be nominated as a saint! Her support and my father-in-law's have been wonderful."

Maybe, alas, a break-up would have happened anyway. All sorts of things conspire to cause difficulties in any marriage, not just the villainous Arthur Itis. Hardly surprising if his uninvited appearance is more than some relationships can take. Some. By no means all. It's crucial to remember there's lots that can be done along the way to weather any storms, to avoid break-up, and to encourage calmer, happier days to appear.

Some outsiders find it surprising that so many marriages do survive and flourish, but they do:

"I must give credit to my husband who has shown infinite patience with me during the trying times. Now of course we can laugh at a lot of problems but it hasn't always been like that." (Jacqueline S, now in her mid 50s, developed RA in her early 20s)

"My husband really is so helpful now. At the beginning I don't think he understood how bad I was. Since then he has been attending the hospital with me and seems to be a lot more understanding. We both get on really well, and somehow we both have to work just that little bit harder at our home, children, marriage, etc. Maybe that is what keeps the marriage sparkling!" (Bernadette Sparks, 28, with RA, married nine years, two children)

In this chapter I'm looking particularly at the emotional strains on a relationship, but interwoven with those there may be others, too: social and financial strains, for instance, and sex. Sex I'll deal with later, in chapter 27, for:

"sex is only part of the marriage relationship, and… if a couple are not satisfying each other's emotional needs then a wild sex life is not going to make up for it." (Dr Wendy Greengross, Entitled to Love, J M Dent)

Although the partner with arthritis is the one suffering the pain and stiffness and exhaustion firsthand, others in the family may suffer and need to readjust their lives too. Like us they have to learn to understand what's happening and to work through their feelings. Think of your own reactions to the arthritis. Fear, anxiety, depression, frustration, anger, guilt? Your partner may have similar feelings, and worry about you and the illness and the future, wondering what to do for the best, how to help you, and so on. Other family members, too, in varying degrees. Or they may feel totally unable to handle the situation, and shut themselves off from you.

In the early days, when there's so little to see, they may even disbelieve that there's anything wrong with you. Who's to say you're not just being lazy or making it all up, being wilfully slow and clumsy or just bloodyminded, apparently deciding you can do the ironing and cooking one day and next to nothing the next? The pain and stiffness of something like RA may be bad enough, but its invisibility, variability, and unpredictability are particularly nasty extras, seemingly almost guaranteed to produce misunderstandings and communication problems in the best of marriages. It may seem to threaten everything those idyllic Mills and Boon or TV soap opera marriages would have you believe are essential (they aren't, of course) – an attractive body, expressive 'body language', spontaneity, energy, self-confidence, and the wonderful, wonderful glow of health.

OK, yes, alas, there may be problems, especially in the early days. But do, please, hang on in there, both of you. Be patient. Remember what Jacqueline and Bernadette said above? They did have ups and downs, but things got better. Take heart from knowing that others have been through it before. It'll get easier to handle, and any struggle will be worth it in the long run. A happy relationship that you work at together will help put all other problems in perspective.

To understand something of the mixed feelings of you both, read again Sandy Burnfield's comparison of the onset of chronic illness with a bereavement, on page 90. Read too, both of you, the rest of this chapter, and chapters 25 and 27. As Sandy Burnfield explained, both partners (and other family members) need to 'mourn their loss', and adjust to changes in their relationship. Sandy's own illness is multiple sclerosis (MS), medically totally different from rheumatic disorders, but emotional reactions can be similar.

Both partners in the relationship need support, though may find it difficult to give it to each other, as Sandy (in Multiple Sclerosis, Souvenir Press Ltd) explains:

"…if they become depressed at the same time, it will not be easy for them to help each other. Instead they may feel unsupported and resentful towards one another. Wives and husbands may feel uncertain about how far to push the partner who has the MS, and may not be able to distinguish between difficult behaviour which is really due to the MS, and behaviour which is due to normal selfishness or bloody mindedness!"

"…A caring partner may feel overwhelmed and exhausted by the constant demands made on her… and may feel trapped in the relationship. She may find it impossible to cope with her partner's depression, irritability and self-pity and may desperately need someone to care for her, too, sometimes, and to understand her needs."

What can you do about any relationship problems?
What really does make a happy marriage? How much of it really does depend on glowing physical good health? All marriages are different, but most people would probably agree that the recipe for a perfect marriage should include give-and-take, tolerance, good humour and a sense of humour, the ability to communicate with each other, the ability to accept differences and clear up misunderstandings, the willingness to share feelings about the ups and the downs, and shared friendship, too, over and above the original 'zing' of love and attraction. You don't have to be physically fit to have any of these qualities!

True, having arthritis in the list of ingredients can mess up the recipe. But cooks can learn skills to avert disasters, or lessen them, at least. There are skills you can use together to handle problems, and others you can work on individually. First, some you can look at together.

Essential skills for both of you

• Learn about the arthritis, together Tackle the medical problems first and you're well on the way to sorting out emotional difficulties. With the help of your doctor, try to understand what the arthritis is doing to you physically, and how best to deal with the symptoms. Encourage your partner to join in the finding out process. Remind yourselves that various treatments are available to help keep the symptoms manageable, though it may take a while to work out what best suits your particular body.
• Sort out practical problems, even the tiniest Molehills can so easily grow into mountains. Depending on the severity of the lurgy, you may need to deal with bigger changes to your lifestyle. Tackle changes, together. You would, wouldn't you, if you were moving house, changing jobs, or planning a family? A chronic illness in a partnership needs to be dealt with the same way. You both need to take stock and work out where changes are needed; rethink your use of time, money, physical strength, energy, social life, hobbies, etc. Look back at chapter 22 for starters. Put your heads together and work out how you can each/all best contribute to running the home. Think separately about it beforehand, before pooling your different ideas. Make sure everyone has their fair share of suggesting and being listened to!
  You, the YPA, can still be an important part of the family by taking charge of the non-physical side of household management, eg planning meals and the shopping list. Some physical tasks may still be possible, like preparing the meal, with careful forward planning, or if others put everything ready in the right place first.
• Understand the peculiarities of chronic arthritis, together Try looking back at chapter 25. Discuss it together, and discuss what bits do or don't apply in your partnership. Tackle misunderstandings before they get out of hand. Get outside help, if necessary, eg from your doctor, OT and social worker, supportive family and friends, and from other people who've been through similar experiences, especially old-hander YPAs. Don't hesitate to try Relate (the former National Marriage Guidance Council), perhaps, CARE, or the Catholic Marriage Advisory Council, even the Samaritans, or any counsellor or support service your doctor can recommend. Look back at page llO, 'talking therapy'. An outsider can often help defuse an otherwise explosive situation. Take heart from knowing that others have been through it before, and there is light at the end of the tunnel.
• Communication - keyword to success It means each of you saying what you think, at an appropriate time, and each of you in turn listening, really listening, to what's said, not mind-reading it, and acknowledging and respecting the other's opinions and feelings even if they're different from your own. Listening means allowing the other person to say what s/he really wants to say, without feeling under attack. The Relate Guide to Better Relationships is the best written source I've come across of practical, really excellent advice on understanding and dealing with communication difficulties.
  Many arguments start because one partner misunderstands what the other says and takes offence, unreasonably. Think before you speak. Misunderstandings can happen all too easily between two people tired of coping with a chronic illness.
  Be wary of misreading 'hidden messages'. For instance, the fit partner may misinterpret an angry or critical comment by the YPA to mean 'I'm not a bit grateful for what you do' or 'I hate you', when it really means 'Can't you see how miserable I am? - I desperately need your help and support' or 'I'm really afraid of losing you, so I'll make sure I don't like you then I won't miss you when you've gone'. You'll both need to handle misunderstandings with all the skills of a diplomat, and like a diplomat you may need at times to negotiate through a third party. Do, as I said before, make use of outsiders like doctor/counsellor/Relate/Samaritans/priest/special friends, etc, to defuse potentially explosive situations.
• Anger in the partnership Again, The Relate Guide to Better Relationships has lots of really helpful practical tips. Look too at page 86. Psychiatrist Sandy Burnfield also has helpful thoughts on handling what can be a very destructive emotion in a relationship under stress from chronic illness. His own illness is multiple sclerosis (MS), medically totally different from rheumatic disorders, but emotional reactions can be similar:

"Sometimes it is difficult for the caring relative to be angry with a partner who has multiple sclerosis. This can be because she feels guilty, and because she does not want to hurt someone who is already vulnerable and dependent, through no fault of his own. On the other hand, the person who has MS may also feel angry, he may have lost his role as 'the bread winner' in a family and may resent being dependent and having to rely on his partner. He, too, may feel unable to express his anger, in case he is rejected by the person who has control over him. This anger can gradually build up until it either explodes or turns into severe depression…

"The very thing that people hope to avoid – violence – can become more likely to happen when they are unable or unwilling to admit their angry feelings towards one another. The opposite is also true. Once we can openly say to someone, 'I am angry with you', this can lead to deeper honesty and love in a relationship. But saying that we are angry is not the same as saying 'You make me angry', or 'It is your fault that I am angry'. These responses are destructive and are made by a person who is not taking responsibility for himself. He is trying to force another person to feel responsible or guilty for his own feelings.

"We all need to realise that anger is not necessarily bad or destructive. It is a natural reaction to frustration or misunderstanding, and admitting this to ourselves is often the best way of putting things right. By doing this we can help other people to take responsibility for their feelings and behaviour, and some sort of adult solution will be found to the problems. Usually there are misunderstandings and mistakes on both sides, and each person needs to give as well as take in a relationship.

"By treating anger in this way we are behaving as adults. I am not suggesting that we go to extremes and shout and scream as soon as we feel under strain! This would be a childish response; we have to be mature enough to choose the right time and the right way to express our anger, not any old place at any time. Self-control is just as important as freedom of expression, and they must go together if we are to get the balance right. Perhaps I can compare it to fire. Fire and anger are similar; they are not in themselves good or bad, it all depends on what we do with them."

• Blame Arthur ltis, the intruder, not each other Giving the arthritis a name and personality can be helpful. It means you can blame 'him', the real villain, and not each other. You can talk about him angrily, or with a touch of humour. Unite against him as your common enemy. Agree to support each other against him/it, not to blame each other for problems that he causes.
• Turn towards each other, not away When we're unhappy we may turn inwards, in a way that may put other people off trying to get close physically and emotionally. Both of you need to understand this and make a conscious effort to turn towards each other rather than away.
  Work out how and when to give and take help, when to give each other space and freedom, and when to give each other extra love and attention. Give each other encouragement too, and respect and courtesy. Avoid taking each other for granted. Above all keep alive your sense of humour!
  Talk together; laugh together. Just take things day by day, step by step, tackling problems as they arise. Talk about them. Better still, laugh about them, together and with other people: it all helps reduce the tension and keep things in perspective. Remind yourselves of what you've got, don't get over-obsessed with the losses. Remember you're not 'just an arthritic', not just an illness; there's so much more to you than that.
• Make time for fun and enjoyment, together Shared laughter, especially, is so important. Arthritis doesn't mean life stops still. Though you may have to change what you do and share together, make sure you substitute other activities, which you can share and enjoy and laugh about together. Otherwise it's all too easy to fall into the trap of sharing only arthritis-related activities, such as helping the YPA to wash and dress or make a meal. Even if it's only setting aside an evening a week to eat a take-away together, while you watch an eagerly anticipated TV programme or video, do it, share it, enjoy it, together!
• Try Ogden Nash's advice!
  

  "To keep your marriage brimming
  With love in the loving cup,
  Whenever you're wrong, admit it.
  Whenever you're right, shut up."

  (From 'A Word to Husbands', in I Wouldn't Have Missed It, André Deutsch)

More ideas for you, the partner with arthritis

• Think 'self-help' as much as possible Avoid leaning on your partner for everything, emotionally as well as physically. That happens in the most able-bodied of partnerships, with sometimes dire consequences. Don't expect your partner to solve all your problems for you; solve as many as possible yourself. OK, you won't always be able to handle the changes on your own, but keep working on your self-help programme. Doing almost anything is better than nothing.
• Keep your independence of mind and interests Help your partner do the same. Give your partner 'space' and freedom to keep up interests and recharge inner batteries. For instance if s/he enjoys a regular night out playing darts, or squash, encourage him/her to continue, without feeling guilty at leaving you.
  Try not to waste the time your partner's out feeling sorry for yourself on your own. Make the most of it, if only just to rest and to recharge your inner batteries, or maybe to read a new book, or to listen to a funny radio programme. Share the jokes later with your partner, and take an interest in their outing too. If the arthritis is giving you a really bad time you might find it helpful sometimes just to be by yourself for a while. Encourage your partner to understand your need, without worrying about it, or resenting it.
• How's the voice? It's going to have to work harder in asking for help, in getting things done for you. But it's so horribly easy to sound like a nagger! Work on the voice, so it's softer, so it doesn't whine or nag.
  Cut down on requests for help, by (1) doing more of what you can do, even with difficulty, (2) by writing some, at least, down on paper; then discard or postpone the non-essentials, (3) by producing checklists for your partner for things which crop up regularly so s/he has doesn't have to listen to you repeating the same old things! (eg do a 'How to make the tea list', 'Having a bath list').
  For irregular requests, for instance shopping, or essential cleaning, why not use 'stick-up' notices. That way you can write them when convenient to you, and he'll read and do them when convenient to him. Timing's important! Amazing how long it took me to realise if I waited till the TV adverts were on I'd get a much less grumpy response than when I interrupted his TV viewing (not so easy if it's BBC).
• Too self-critical? Throw out self-doubts. Not easy, but worth trying. Do you worry about what you can't do, about what your partner's having to do instead, worry about becoming a burden on the relationship? Are you perhaps losing your self-confidence? Well, be reassured there is still a lot you can do, once you start using the various sanity-saving gadgets and tricks available, and brain-power rather than body-power wherever possible. (See chapters 20 and 25 for tips).
• Or not self-critical enough? The arthritis can, alas, sometimes make us seem very unwelcoming. Be wary! Keep your partnership a welcoming one, to which your partner looks forward to returning when away. Think back to what attracted you to each other in the first place. Are there things you've now let slide, like laughing together, taking a real interest in each other? Re-awaken them!
  Step outside yourself from time to time and ask yourself if you'd be happy to live with You? Do you moan? Do you always seem miserable? Have you let yourself go? Given up making an effort? Would you want to come home after a hard day at the office to You? Do you say please, and thank you? Or do you take your partner too much for granted? Are you taking life too seriously? How fit is your sense of humour? Or, on the other hand, are you too self-critical? Sorry if I seem to be going on. It's probably all totally unjustified. Stick pins into a wax model of me instead if you want!
  If you do seem to moan too much, to your partner, try to find an 'escape valve' for at least some of the moans (see page 102).
• Too critical of your partner? Minimise the criticism, maximise the encouragement and praise. Use the carrot not the stick approach. Not always easy, but always worth trying. Stop being a perfectionist and believing the only way to do something is your way. – Live dangerously and see what other ways your partner can come up with!
  If you feel you do need to criticise, choose the right time and way. Try not to moan about the mess in the kitchen, when he's just spent hours concocting a shepherd's pie for you. Never bring problems up the moment s/he gets home from work. Plenty of time later, after a relaxing interval and on a full stomach. Make a habit of saying only nice things when s/he steps in through the door. Above all, remember to give your partner your good side as well as your bad. Don't save it for outsiders only!
• Is s/he the one who's a real old misery? When your partner's irritable and grumpy, and you're feeling low and full of self-doubt, it's easy to assume you and the arthritis are the cause. Remind yourself there are 1,001 other possible causes. Maybe s/he's just tired? Maybe there are problems at work, or some bureaucratic idiocy in a bill just received, maybe s/he's hungry or has a painful corn? You aren't the only one with invisible problems! Be ready with a shoulder to lean on, when necessary.
• Remind yourself of all the non-physical ingredients of a successful relationship Look back at those I listed on page 211. You can still give plenty, as well as taking. However bad the arthritis, you can still give love and care and time and support to your partner.
• 'Thinking of opposites' is an exercise I sometimes find helpful in dealing with difficulties, especially in relationships. For instance:
  
  • Do you always seem to be on the receiving end, and hate it? Think, instead, about what you can give. However bad you feel you can still give warmth, moral support, understanding, inner strength, and share smiles as well as tears.
  • Think 'independent' instead of 'dependent'. For instance if you're going through a bad patch and need masses of help and attention, bully your partner now and again into taking a break and going out for a change of scene.
  • If the 'can't dos' are obsessing you, force yourself to spend at least half an hour, regularly, thinking only of 'can dos'.
  • Mad at what you can't achieve physically? Think of your mental skills and voice, eyes, etc. Can they achieve what you want instead?
  • Maybe you're used to solving emotional crises physically? For instance by stamping your foot and rushing upstairs to get it out of your system? Practise non-physical alternatives (eg look at chapter 14).

More ideas for you, the partner without arthritis

• Find out what you can about Arthur Itis's wily ways Then you're halfway towards stopping him/it upsetting your relationship. Your first difficulty might well be believing there really is anything wrong with your partner, when s/he's fit as a fiddle one minute, and miserably stiff as a board the next. That's Arthur for you – invisible and unpredictable, and not easy to understand, almost guaranteeing to create misunderstandings. Find out too about things like joint care and rest and exercise and energy conservation. Don't, please, make the mistake of thinking your partner's simply being lazy, or 'giving in', when resting. Dealing with the arthritis means so much more than just 'taking the tablets'. Why not try going along with your partner to the doctor's sometime? You'll both benefit if you look on the arthritis as something you deal with together.
• Be patient It'll take both of you time and effort to work out how best to cope, but agree to tackle any difficulties together, united against a common enemy. Some or most of the jigsaw pieces in your life may have to come apart and be put together again in a different way. You need to give each other unselfish love and support and patience while you sort things out together.
• How do you feel? Do you wonder how to cope? Does your partner grumpily rebuff you one moment and accuse you of being unfeeling or helpful the next? Do you try to ignore what's happening, hoping any problems will just go away? Do you want to shout angrily at your partner one moment and feel guilty the next? Do you feel sorry for yourself? Ignored or overburdened? Do you fear the future?
  All perfectly understandable feelings. Try explaining some of them to your partner; s/he can't mind-read and may not realise you have problems that need to be worked through too. Avoid implying that your partner's to blame; say 'I feel…' not 'You make me feel…' Remember the cause of your problems isn't your partner; it's an enemy intruder some people call Arthur Itis. Talk too to other people who will understand and may also be able to suggest sources of practical help, eg doctor, Samaritans, Young Arthritis Care members/and their partners.
• How best can you help your partner? Just 'being there', just constantly reminding him/her of your love and loyalty and support is the best possible thing you can do. Someone with arthritis may instinctively turn inwards and through sheer misery or self - doubt appear outwardly unwelcoming and unloving. Arthritis can make us feel unlovely and horribly unlovable inside. Please don't be put off, but reassure us of your love, in words and in touching. A loving smile or touch or gentle hug is wonderful medicine. If you're worried about causing pain, why not explain 'I'd like to give you a cuddle, but don't want to hurt you' and see what happens?
  Please, too, help bolster our self-confidence and self-esteem, so easily bruised by the arthritis. If we can no longer do everything we used to, please value what we can do. Encourage us not to feel useless. See pages 190 and 196 for some more guidelines.
  In practical terms, how can you best help? Some partners may do too much, and end up making the YPA much more of a helpless invalid than necessary. It can be hard watching someone you love struggle to do something rather than doing it for them. Others may take the opposite, 'snap out of it approach' - unkindly or unthinkingly offering little or no help to someone whose body simply won't allow him/her to snap out of it.
  There's really no easy answer – you'll both need to keep readjusting to fit in with the arthritis ups and downs. In general, when it's not at its worst, I do believe it's best for the YPA to try to do as much as possible for him/herself, while making use of every sanity-saving gadget or trick your combined efforts can unearth. But you must gently encourage your partner, not bully! And accept that with some things and at some times your help most definitely will be needed. Agree between you that when help is really needed the YPA will ask for it and the help will be there. Corbet Woodall described his wife Ingrid's attitude to him and his RA as

  "hard to put into words but, roughly interpreted, meant that she was saying to me: 'Sink, and you'll sink alone; try to help yourself and I'll be the first to back you'. This, with amazing consistency, she has done." (In A Disjointed Life, Heinemann)

  Please don't be reluctant to seek outside help. If, for instance, your partner needs lots of help with washing and dressing," why not see if any help's available through your doctor/OT/social worker, or through organisations like the Crossroads Care Attendant Scheme? Outside help can ease practical and emotional burdens on both of you.
  Remember too, you can give so much help simply by not hindering, by not creating more work or more obstacles. Do for instance always clear up after yourself! And don't move things without checking first that you're not thus complicating life for your YPA. Make a point, now and again, of simply saying, 'is there anything you'd like me to do?'
• Don't let the arthritis dominate your lives completely Do make sure you share plenty of other things besides, including laughter and love, and shared interests and activities. Make sure too you allow each other 'space', space for being alone and recharging your batteries and keeping up with individual interests and relaxations.

Marie Joseph told a psychiatrist what had helped most in her fight against RA was her husband – he'd actually helped

"by not helping me… He has never allowed me to feel that I am anything but a normal woman. He knows that if he stretches out a hand to help me, I am more than likely to knock it away. He boosts my morale by telling me I look good when I am tired and he praises me when I complete a task that other normal women would take for granted… He doesn't rush forward to help me out of chairs, because he knows I would hate it. And he swears that my hands aren't noticeable, so that just occasionally, if someone does mention them, and wonder aloud how I cope, I get a shock because quite honestly I never think about their shape." (In One Step at a Time, Arrow Books)

Further reading and helpful organisations

Look back at the list on page 206. Send for booklists from Relate (ask for their Marriage and Relationships booklist), Healthwise, and the British Holistic Medical Association. Though few if any of the books listed talk specifically about arthritis or chronic illness you'll often find helpful tips on coping with general stresses in relationships, in, for instance:

• The Relate Guide to Better Relationships, by Sarah Litvinoff (Ebury Press, 1991), subtitled 'Practical ways to make your love last from the experts in marriage guidance'. Barely mentions chronic illness, but is really excellent, sensitive yet realistic, and full of tips to help you understand and tackle emotional and relationship problems, whatever their cause, and whether you're in a married or an unmarried relationship. Particularly good on dealing with anger, and communication difficulties. Many tips may be helpful even if you're not in a relationship.
• Dr Paul Hauck's How to Love and Be Loved (Sheldon Press)
• Dr Tony Gough's Couples Arguing (DLT)
• Laurie Graham's A Marriage Survival Guide (Chatto and Windus) is amusing but thought-provoking too
• The British Medical Association's low-cost booklet Marriage – Making or Breaking? by J Dominian (from BMA House)

Reading books by other people with arthritis or other chronic illness may help (see chapter 29). And I've mentioned before psychiatrist Sandy Bumfield's book Multiple Sclerosis, A Personal Exploration (Souvenir Press): he includes the impact on his marriage of his own chronic illness, MS, very different from chronic arthritis in its physical effects, of course.

• Dr Wendy Greengross's Entitled to Love (J M Dent) deals with the sexual and emotional needs of handicapped people.

Several books focus on 'the carer', the 'non-disabled' partner in a relationship. You might find helpful ideas in something like Taking a Break – a guide for people caring at home (details from Taking a Break), or Keeping Fit While Caring which includes information on moving and bathing someone with disabilities, basic muscle exercises for the carer, etc by Christine Darby, (published Dy the Family Welfare Association). There's also a self-help group, the National Association of Carers.

Organisations
Relate (formerly the National Marriage Guidance Council) Whether you're married or unmarried, counsellors can help you work through relationship difficulties. Some have made a special study of physical disability and relationships. Don't delay contacting them, as there may be a waiting list for an appointment. Look too at Sarah Litvinoff's Relate book mentioned above. In Hilary Edwards' Psychological Problems. Who Can Help? (Methuen and British Psychological Society), a Relate counsellor explains:

"Our service is free. Clients are asked to make a voluntary contribution, but there is no obligation to do so. About half our clients refer themselves directly, and half are recommended to come by a professional worker or by the Citizen's Advice Bureau. We have a waiting list for counselling, but we do see people for an early first appointment within a week of them contacting us. This is to get an idea of the problem, to give an idea of what counselling involves, and to make sure we are the right service for them. We meet clients in our offices, or in their local health centre, surgery or CAB. If the person is severely disabled we may see them at home…"

There are some special religious counselling groups, too, for instance the Christian Action Research and Education (CARE Trust), the Catholic Marriage Advisory Council (CMAC) and the Jewish Marriage Council.

The Institute of Family Therapy offers counselling to couples and family groups (no referral necessary). Fees are based on what the client can afford.

The Advice Unit at MIND can put you in touch with projects, groups or organisations offering psychotherapy, counselling, or se1f-help groups in your area who might be helpful. See too 'Talking therapy' on page 110.

Gemma is a national organisation of lesbians of all ages, with/without disabilities.

If the worst comes to the worst…
I hope it doesn't. But if it does… Some organisations who can help:

Relate and the other organisations mentioned above. Also Citizens' Advice Bureau (see page 118), for advice on financial and legal aspects, legal aid information, etc.

Solicitors Family Law Association provides a list of solicitors who take a conciliatory rather than confrontational view of divorce. National Family Conciliation Council too can help when a couple (married or unmarried, separated or divorced – or plan to be) disagree over important issues, especially those concerning their children. Trained counsellors help both partners work together, cooperatively rather than competitively, to sort out an agreement for themselves, the future, and the children, rather than just communicating through a solicitor. They have a helpful publications list, some available by post, some to help parents, some for children.

Organisations offering advice and support to single parents include Gingerbread (over 300 groups nationwide) and the National Council for One Parent Families and Scottish Council for Single Parents. Families Need Fathers advises on access and custodial matters for both parents. See also page 236.

Get Relate's booklist on Divorce and Remarriage, which lists several books available by post, including some of these:

• On your Own, by Jean Shapiro (Pandora Press). How to deal with living on your own again. (Available from Relate).
• Going it Alone by Anne McNicholas and A Woman's Place by Sue Witherspoon. (By post from SHAC, the London Housing Aid Centre)
• Divorce: Legal Procedures and Financial Facts, Consumers Association, (Hodder and Stoughton, available from Relate)
• How to Split Up – And Survive Financially , by Tony Hetherington (Unwin)

There are some books written specially to help children of divorcing parents, many available from Relate, and The National Family Conciliation Council has a list. Examples:

• How It Feels When Parents Divorce by Jill Krementz (Gollancz), for over tens.
• Mike's Lonely Summer by Carolyn Nystrom (Lion), for five to ten year olds.
• When Parents Split Up by Ann Mitchell (Chambers), for teenagers.
• Voices in the Dark by Gillian McCreadie and Alan Horrox (Unwin), for seven year olds to teens.
• The Children's Society publishes helpful, very cheap leaflets Divorce and Your Children and Divorce and You (written for children and young people).

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Page last updated on 17 January 2010.
© Copyright Jill Holroyd, 1992, 2009. All rights reserved.