Interacting with Those Around You - Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin

Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin (2012)

Chapter 16. Interacting with Those Around You

Most people who develop persisting pain find that having to manage pain can affect their close relationships with family and friends. Relationships with others, such as people at work or people serving you in a shop, can also be affected when you are trying to live with persisting pain. At times, others may find you more irritable than normal, or more withdrawn or reserved. In many cases people with chronic pain find their close relationships are put under great strain, but some report that working with those close to them to find ways around the problems caused by the pain can actually improve the relationships. In these cases, it is like bringing those involved closer together in their battle against a common foe.

We have seen many of the ways people feel that pain has affected their relationships. A few examples may give you a glimpse of what some people go through.

Sally was convinced that her marriage was over because she felt her husband did not understand her pain problem. She felt he demanded her support, but didn’t give her any in return. She wanted to get her life in order and to manage life with pain on her own terms. She separatedfrom her husband, but he continued to keep in touch. For a while she thought about seeking counselling but without her husband’s involvement. However, as she learnt to manage her pain more effectively, she realised that her lack of acceptance of her pain had contributed to their relationship difficulties. She also came to recognise how her approach to dealing with her pain had had an adverse effect on their relationship.

In particular, while Sally had always tried to stay as independent as possible, doing as much as she could around the house and in other daily activities, at times she reached her limit and really needed her husband’s help. But when she thought about how she had asked for help, she realised that often it was as though she had been expecting her husband to be able to ‘read her mind’. There has since been a reconciliation between Sally and her husband. By learning to express herself more directly and clearly the misunderstandings have become much less common, and they both report they now feel more supported by each other.

Mary appeared to be the hub of her family’s existence. Her ex-husband, teenage children, ageing parents, and an invalid relative were all a part of her busy day. Mary also continued to maintain her work but found it very difficult to cope without medication. Medication gave her some pain relief, but she used this to overdo activities and so she repeatedly aggravated her pain. She had difficulty asking others in the family to do what she had always seen as ‘her duties’, and she felt that no one else could ever do them as well as she could. Nevertheless, she felt resentful that she had to do everything. Unfortunately, while she could see how this approach was self-defeating, she felt she could not change it.

Larry lived with his fiancee. As his pain persisted they started to argue more. The arguments usually concerned things like his lying around and often sleeping through the day, his high medication use, and his unwillingness to socialise with their friends. His irregular attendance at work was also an increasing problem. Larry was reluctant to stop medication use and expected his fiancee to do everything in the home. Eventually, Larry learnt to manage his pain more effectively. He reduced, then ceased his reliance on medication and started to feel more in control of his pain. Despite his improvement his fiancee had had enough, and the relationship was broken off. But Larry stuck at it, and he also worked on improving his ability to discuss issues without getting into a rage. Gradually, their relationship was rekindled. The couple found they both needed to make adjustments and have more realistic goals if their relationship was to survive.

Fifteen-year-old Robyn was in a wheelchair due to a back injury incurred playing sport. She was taking excessive amounts of morphine. Her mother, a nurse, was very involved in seeking treatment for Robyn. Her father worked long hours and so didn’t see much of her. He said that he felt shut out and unable to help his daughter, and this contributed to his spending more time at work. In part, he put this down to the way her pain was being managed. He felt his wife and their doctor had largely taken over as appointments were during the day when he was at work, and he had little or no role to play. By the time they attended our clinic the whole family said they felt quite stuck and unsure of where to go.

When Robyn attended our ADAPT program her father was involved in driving her, a half-hour journey or more each way for three weeks. She was able to tell her father about the program as they travelled. Their relationship improved as he learnt more and she was able to show she was managing the problem independently. Their relationship is now much closer.

Whether or not these examples are familiar to you, they show how pain can become a major source of stress in a relationship. Recognising this and trying to do something about it will help not only yourself but also your family and friends.

In this chapter we will examine a number of common issues, including typical changes in relationships because of chronic pain, types of unhelpful communication, effective (assertive) communication styles, resolving conflict, the spouse or partner relationship, as well as parent-child relationship issues, and sexuality. In some situations it can be helpful to talk to a psychologist, social worker or counsellor about these issues.

When pain can be a problem in relationships

As your pain persists, anger, frustration and withdrawal may become a common feature of your behaviour towards those who love you. You may find you are unable to speak confidently or in a civil way at home or in social settings. You may have trouble saying no to invitations or requests, resulting in your feeling both resentment of others and a sense that you could be letting them down if you are unable to keep commitments. Others may feel rejected and unsure of you because of your behaviour and start avoiding you. With each failed interaction with the people around you the difficulties can increase. Your relationships may start to fall apart.

What are your options?

1 Ignore the problems and hope they will just go away—but what if they don’t?

2 Leave—that might solve some of these problems in the short-term but what about your family? Is this really how you’d like to live?

3 Sit down with your family or someone you can confide in and try to work out why you are getting into these situations and the possible ways out of them.
If you took option 3, where might you start?

Goal setting

Before you make plans about changing your behaviour or other aspects of your daily life, it helps to work out where you want to end up—your goals. Dealing with relationship issues is no different. As you did in your original goal setting exercise, why not write down some of the goals that you would like to achieve in your close relationships?

As you do this, consider not just identifying problems but the way to actually say how you would like the improvements to look. It usually helps if you can describe your goals as specifically as possible, such as what you would like to do, when or in what situation. For example:

· ‘I don’t want to shout at the kids so much’ may be better phrased as, ‘I want to speak more calmly to the kids, especially when the pain is bad’.

· ‘I really want Mum to stop giving me advice about what treatments to have for my pain’ may be better phrased as, ‘I want to tell Mum I have learnt how to manage my pain problem and I would like her to encourage me with my efforts’.

· ‘I want to talk to my partner about our sex life’ may be better phrased as ‘I would like to tell my partner how much I care about him or her and talk about the best ways to have sex, now I know how to cope better with pain’.

Other common interactions with others which you might want to improve include those you have at work, at home, with friends and with children.

1 At work. You may no longer be working or you may be working reduced hours, or be on light duties. This may have had an effect on the attitude of your co-workers, reflecting their scepticism or bias against someone who doesn’t ‘pull their weight’. Your employer may be frustrated with your reduction in productivity and increasing absences. How could you deal with these situations? It is possible that you will never convince some people that you have chronic pain and, as a result, have limitations to what you can do. With those people this may be a battle that isn’t worth fighting. On the other hand, there are many people, including employers, who can be responsive to hearing your side of the story and will be prepared to help or to make allowances for you if they are given an idea of what it would involve and for how long. So, working out ways of telling others about your pain and how you have learnt to manage it could be worthwhile.

2 At home. You may experience a loss of self-esteem as you are no longer fulfilling your role as breadwinner or equal contributor. Other changes may include reduction in your standard of living, and recreational and social interests. If your spouse or partner was not working, he or she may be forced to return to work to make up for your lost income. Equally, if he or she was already working they may need to work longer hours to earn more for the family. At the same time, you may not be able to take over all of their old duties around the house because of your pain. The effect on you may be one of guilt, loss of confidence and self-esteem, anger and frustration. How might you address these issues with your spouse or partner in a constructive way?

3 With friends. Decreased socialising may occur because of financial constraints, physical inability to participate in social and recreational pursuits, unwillingness to commit to or ‘stay the distance’ when socialising due to pain. You may have lost interest in socialising with people. Yet, you might appreciate some consideration from your friends and you might want to maintain your links with them. How might you discuss these concerns with your friends?

4 Children. You may no longer be able to actively play with your children. Because of your mood the children may become unsure of your responses and so begin to avoid you in preference to dealing with your spouse. They may begin imitating your behaviour, reflecting anger, withdrawing and exhibiting pain behaviour. They may become protective of you. They may have fear because of hospitalisations and doctors ‘doing things to you’.
Older children may become angry at doing your tasks and at your lack of involvement in their lives. Participation in family events such as cycling, picnics and holidays can suffer and the family may become accustomed to doing things without you. How could you deal with these concerns and re-establish your previously good relationships with your children?

Why might these problems be happening?

Before you try to come up with solutions to these problems, perhaps it would be worth your spending a little time working out why the problems are happening.

For example, is it likely they are all due to the others involved? While the problem could be caused by the other people, it is also possible that your responses are also contributing to the difficulties you are having with them. It is often difficult to be objective about ourselves (and our behaviour), but resolving interpersonal problems is usually helped by objective and honest assessment of ourselves.

Most interpersonal conflicts involve at least two people. It is likely that in your case your behaviour is at least part of the problem. That doesn’t mean it will be all your fault, but rather, if you could change your approach in some way it might help the others involved to change as well. You may not be able to control the behaviour of other people but you should be able do something about your own.

Have a look at this list of behaviours you may engage in when other people are about. Regardless of how the behaviour started, do you ever do any of the things mentioned here when your pain is troubling you?

· Withdrawing verbally—not talking, not making conversation, ignoring others, not explaining what is happening, almost expecting others to read your mind, not indicating how they might help.

· Withdrawing physically without explanation—leaving the room, going to the bedroom, to the shed, or ‘out’.

· Exhibiting pain behaviours—such as grimacing, holding, groaning, complaining about your pain.

· Talking about your pain—and how terrible it is.

· Loss of interest in others—not responding to others, lack of awareness of others and their concerns.

· Mood changes—irritability, anger, frustration, despondency, sadness.

· Provocative statements—such as ‘You don’t know how bad this is’, ‘I can’t … because I’m in pain’, and ‘If you had pain like this you would understand’.

Faced with such behaviour from you, others may feel unsure how to help. If you often behave in these ways with others despite their attempts to help, they may start to feel rejected by you and even helpless. Over time, they may start to withdraw from you.

Of course, from your point of view you may feel that as they don’t have pain like yours they really don’t understand. You may also feel that you have no choice, almost as if the pain is making you behave like that, or that if you didn’t behave in these ways you might do or say something you’d regret. But are these responses your only option? Let’s examine these views.

If they did have pain like yours, how much difference would it really make to how they behaved towards you? At our clinic we have seen many pain patients who did not get on with each other. Once they’d got to know each other, the fact that they all had pain didn’t seem to make them more sympathetic to each other. A number of patients have even commented to our staff that they are getting fed up with the antics of some other patients.

It is possible, then, that the reason your family or friends are starting to withdraw from you is not that they don’t understand what it is like to have pain, but rather they don’t know how to help you. Especially if you won’t tell them or discuss it with them. Like all of us, your family and friends can’t read your mind. You too may not know how they could help, but it might be a start to at least tell them that. Then you might be able to start discussing your options with them.

It might help to know about some recent research on pain patients and their spouses, which has shown that good supportive relationships are often those where the person in pain is encouraged to do as much as they can manage but the spouse helps out on certain tasks, especially those that are usually difficult, like taking out the bin or vacuuming. In addition, the spouse in these relationships will often help when the spouse in pain specifically asks for assistance. This avoids the spouse in pain expecting their spouse to either read their mind or to just take over everything. Providing practical help when it is needed rather than taking over everything enables the spouse in pain to still feel useful. It also means their limitations are being acknowledged.

Relationships where conflict and tensions can run high are often those where either the spouse of the pain patient takes over everything, but resents it, or the spouse withdraws and does very little to help. So what options do you have when your pain is troubling you and you want to avoid the sorts of behaviours listed earlier, especially when the people around you are important to you?

· Instead of withdrawing verbally, try telling those you are with that your pain is troubling you and you don’t mean to be rude but you might be quieter than usual for a period. Still, you do want to hear what is going on. You might even ask if they could help by sitting down to talk rather than standing up, as you find that difficult.

· Instead of withdrawing physically and without explanation, try explaining that your pain is troubling you. Ask them to excuse you for a short period while you go and do your stretch or relaxation exercises. Tell them you will be back shortly.

· Instead of exhibiting pain behaviours, try minimising such behaviours or building them into more ‘non-pain’ behaviours, such as changing position, getting up or stretching.

· Instead of talking about your pain and how terrible it is, try to avoid talking about your pain as much as possible. You may agree in advance with those close to you that you will let them know when it is bad and you need help with something, but apart from that you would prefer to be treated normally.

· Instead of losing interest in others, try making an effort to listen to what others are talking about and to ask them questions about themselves. After all, you may find it helps to get your attention off your pain.

· Instead of accepting mood swings, try using the methods outlined in this book. In particular, you could challenge any unhelpful thoughts you may be having, replacing them with more helpful alternatives. You could also be practising your relaxation technique and trying to calm yourself.

· Instead of making provocative statements, try checking such statements before they are out of your mouth, or apologising for them if they have already slipped past your guard. Challenging such thoughts before they are spoken could also help to modify such unhelpful views. Put yourself in the position of the other person in these situations—how would you respond to such statements? If you really feel that others don’t understand, why don’t you ask them about it? It may help to resolve an unnecessary problem you are having with them. For example, you might say something like ‘When I say my pain is bad, I often get the feeling that you want to withdraw from me. Is that how you see it?’ This sort of question doesn’t accuse the other person of anything, so they shouldn’t feel defensive and clam up. Rather, you are simply stating how you feel or how you see things and you would like to discuss it with them. Such a method often makes it possible to discuss even quite sensitive subjects without too much heat being generated.

These suggestions are only that—suggestions and not statements carved in stone. But they do show that there are many ways you can behave towards others when your pain is troubling you. The alternatives can avoid creating tensions and misunderstandings with those close to you.

Good communication with others is not, of course, confined to pain issues. Good or effective communication with others is important to the maintenance and development of all aspects of our relationships. If you have never really given much thought to how you communicate with others it might be useful to think about some basic aspects of good communication skills. You might also like to read more comprehensive books about the topic. Again, see your local library or bookshop for suitable books.

Basic principles for assertive communication

Assertive communication does not mean being aggressive. Instead, it means saying what you want to say in a way that is clear but respectful of others. Shouting orders at someone may be clear but it probably isn’t respectful of others and it could alienate them from you. Equally, assertive communication doesn’t mean manipulating other people to get what you want. You may have expressed yourself very clearly and you may have done it in a respectful way, but the other person may still disagree with you or not want to do what you have asked—that is their right.

Communication skills are learnt, we are not born with these skills. So if you feel you are not a good communicator you can still improve—with practice. Practice of these skills is essential. Simply reading about them and thinking they make sense is not enough for you to be able to use them. Try to practise these skills alone to begin with (like an actor rehearsing lines), and later with those you are close to (explaining what you are doing first and seeking feedback from them to help you improve). In general, good communication requires:

· Knowing what you want to say—that is, the main points you are trying to make

· Getting your message across in a form that is understandable—that is, clear, audible, and appropriate to the situation. This may be helped by making eye contact and using facial expression, such as a smile or frown

· Listening to the other’s responses (to ensure they heard you correctly and you have heard their response clearly). It may help to repeat back to the other person what you thought they said, just to make sure you understood their response correctly

Of course, there is much more to good communication, depending on the situation. For example, one area many people have particular trouble with is trying to resolve a dispute with their spouse, partner or family member. In situations like these, some additional points can be helpful.

1 Try to stick to the subject and avoid being distracted by other issues, or dragging in other issues yourself. In most relationships there will always be some unfinished business from the past and you will never run out of things to drag into an argument, but then you will probably take a lot longer to resolve the present one.

2 Try to remain as calm as possible. Getting heated or upset is likely to affect your reasoning. Use your relaxation technique. If you feel you are having trouble remaining calm then maybe you should consider asking for a short break and returning to it when you feel more composed.

3 Watch your body language while you are talking or listening. If you look away when the other person is talking it can look as if you aren’t listening. Equally, banging the table with your fist may be your way of emphasising a point, but it can be frightening to the other person. Keeping a calm voice, looking the other person in the eyes at the right time and not getting too physically close are all useful ways to complement your words.

4 Try to show that you respect the other person—for example, if you treat him or her as unimportant, they are unlikely to pay much attention to you. If you are having an argument, staying courteous with them and showing you are trying to listen to their point of view will often prove much more helpful than disregarding or rubbishing their statements. You can show you are listening by checking with the other person that you have understood what they have said. For example, you could say something like, ‘So it sounds as though you feel that I am not doing as much as you would like around the house. Is that what you are saying?’ Remember, other people don’t have to do what you want—unless you are giving an order, like a policeman—it is up to them to decide how they will respond.

5 Take care how you phrase expressions of strong negative feelings such as anger or irritation. At these times it is often easy to slip into blaming the other person for how you are feeling. For example, saying things like ‘You make me really mad’, as if they have caused that feeling in you. If you think about it for a moment it is easy to see that no one really has the power to make us feel what they want us to feel.

The truth is that we may feel angry or irritated when someone does or says something we don’t like or don’t agree with. They may or may not be doing it to make us feel like that, but it is always up to us how we react. If you recall the discussion in Chapter 11, our feelings are usually strongly influenced by our perceptions—the way we see things or think about them. So other people really don’t ‘make us’ feel anything. We may get upset or angry when another person does or says something we don’t like or don’t agree with, but how we react is up to us. Try not to accuse the other person of anything, because that risks putting them on the defensive and they may then focus on being affronted by your accusation rather than dealing with your concerns.
Instead, it can be more productive to try this sort of approach:

· Clarify what you thought they said, to make sure you have understood them clearly. It is possible you misheard or that they didn’t realise how what they said came across to you. For example, you might say ‘When you say that, it sounds like … Is that what you meant to say?’ This gives the other person a chance to correct your impression.

· Respond to them bearing in mind the five points mentioned above. In general, it is more effective in these situations to state clearly when you feel upset or angry, what your perception of their behaviour or words is, and how that affects you and how you feel as a consequence. The words in italics should act as a guide to how you can deal with these situations with other people. We would recommend that you run a few of these sorts of conversations through your mind before you try them out on other people. Even try saying it to yourself in front of the mirror.

6 Suggest ways of resolving conflict once you are more confident about expressing your concerns more productively.

7 Be aware of the timing of dealing with conflict—just because you want to talk about it doesn’t mean it is necessarily going to be acceptable to the other person. The consequences of attempting to deal with conflict may result in a resolution, further work to be done or no resolution. If the latter is the case, at least you will know you have done your best for the time being.

Possible solutions for different family members

It is not possible to outline the types of problems everyone may face, let alone the best solutions. However, we have found that many pain patients have gained a great deal from listening to how other people in pain have dealt with common problems. The following pages outline some of the problems and the solutions which our patients have reported.

Spouse/partner relationship and the sexual relationship

Your partner may have experienced a number of significant changes in his or her role as a result of your injury and loss of function. These changes might include having to take on increased responsibility with family and tasks at home or having to increase their paid work to compensate for your reduction in earning capacity. They may have had to adjust to reduced socialising and recreational pursuits. They may also be experiencing a sense of loneliness within the relationship as a result of your focus on pain.

Common signs of ‘wear and tear’ in a relationship in these situations include spending less time together, a sense of having lost sight of your goals, resentment at the increased load, jealousy of partner who is working and socialising, and withdrawal leading to reduced conversation, reduced hugs and touching. There may also be more arguments about responsibilities, children’s discipline, finances, as well as doubts about one’s attractiveness to the partner and even concerns about their fidelity.

At the same time the sexual side of your relationship may have become more of a problem, resulting in your feeling more distant from your spouse or partner. Common difficulties people in chronic pain have reported in this area include fear of causing pain or increasing pain (on the part of either partner), avoidance at bedtime or withdrawing from each other, reduced libido and frequency of intercourse, or failure to get an erection/reach climax. You may find you are both talking less about your sexual needs, or even when you do try to have sex there may be difficulties finding comfortable positions. You may also have found that the medications you have been taking affect your mood and sexual interest. Of course, trying to cope with pain all day can also leave you feeling you have little energy for engaging in sex. Finally, trying to explain these issues to your partner or spouse is often difficult and can easily be misunderstood as a form of rejection.

Most sexual difficulties in relationships are not due to issues of performance or technique. Most are actually due to relationship issues. These often need to be worked on before a good sex life can be resumed. For that reason we have included a discussion of sexual difficulties in this section on relationship problems. Of course, most people with chronic pain will say that relationship problems can still occur even if you don’t have a sexual partner or you are not concerned about sexual issues. Thus, the issues raised here should still be relevant to anyone with chronic pain who is in a relationship, whether it be with friends or family.

Broadly, the following points can be helpful, at least as a base for starting to address these sorts of problems.

1 Try to include your spouse or partner when you are trying to problem solve or plan something—don’t expect them to read your mind. Solving a problem together can help to bring you closer to each other.

2 Try not to talk about pain all the time—if in pain or having a flare up tell those who matter but don’t dwell on it.

3 Check and challenge your thoughts when you are feeling irritable or angry.

4 Acknowledge your partner’s support and his or her feelings—no one likes feeling ignored or being taken for granted (even if that’s not your intention).

5 Be prepared for difficulties that your spouse or partner may have in adjusting to the changes you are making in improving how you manage your pain (such as when you start taking back some of your old roles in the relationship and family). Try to discuss these issues with him or her.

6 Encourage your partner to allow you to try things again, even if it will take longer or not be done as well (initially) than if they continued to do them.

7 Set goals—recreational and social—to do things together and with others. By doing this together rather than all by yourself the relationship can benefit as it is a simple way of bringing you together again.

8 Manage your pain with the strategies outlined in this book and tell your partner what you are doing about it. Ask him or her if they would like to read the book and discuss it with you). Discuss ways in which they could help you to implement your strategies.

9 Talk as openly as possible about any developing sexual problems. Try to avoid any sense of blame. Rather, try to work out possible solutions or things you might try together. This can be awkward to start with, but it usually gets easier as you work on it. Some people find that using humour—learning to laugh again, especially at yourself—can be a good ‘ice-breaker’ and reduce tensions. However, we recognise that this is not always appropriate and many people find it difficult due to the sensitivities involved. So don’t feel that you have to make jokes about it. In fact, some people use jokes to hide their real feelings. In this case continuing to make jokes without really addressing the problems or concerns seriously can end up with your feeling you are not getting anywhere.

10 Take the initiative in planning time together, having fun, having sex. Don’t always wait for your spouse or partner to bring up the issues. If you start getting apprehensive before having sex (or during) try to use your relaxation technique and challenge any unhelpful thoughts you may have. Sometimes using fantasy (including erotic ones) images in your mind can also help to distract your attention from pain and possible problems. It can help to make sex more fun if you try new positions and even see it as a type of experiment. This can help to make you less self-conscious. If it works, great; if not, well there’s nothing really lost, it was still fun trying. Talk as openly as possible (probably no one is ever completely open about these issues) about what you like or don’t like. Honest feedback can mean that you don’t waste time (and possibly, avoid resentment) on things you don’t really like. Books on sex may help, but we do suggest that you make this fun and not take it too seriously. Alternatives to intercourse (intercourse isn’t the only way to have enjoyable sex)—oral sex, masturbation, aids, even just stroking each other in non-genital areas, can all add to the sense of fun, but shouldn’t be forced on your spouse or partner.

11 Pace yourselves in building tolerance to touching, stroking, and intercourse itself. Rushing in with expectations unrealistically high, especially if you have had a long period without sex, can set you up for disappointment. This can be discouraging for the next time.

12 Romance—show that you care, give compliments, make uninterrupted time for each other, special dinners, arrange a weekend away or on your own at home, give flowers, start getting to know each other again. Remember how much time you gave each other early in your relationship (and how enjoyable that was).

Relationships are usually salvageable but it does require both parties to want to work on it. Sometimes one or other partner will feel that things have gone too far to turn back. It may well be that separation could be the healthiest option to take—for both of you. However, this can be a very big step and shouldn’t be rushed into. Talking things over with a counsellor or psychologist (or really just someone who is independent and to whom you feel you can talk) is usually a good idea at these times.

Singles with pain

You may have found that your circle of friends has diminished as you no longer participate in things like sports, work or other groups. You may also have lost touch with friends because you have withdrawn from them or because they are confused about your pain. They may not know how to relate to you and so have stopped including you. Equally, you may feel that they might get bored hearing about your pain or you may stop making arrangements with others because you have trouble keeping commitments. As a result they may feel that you have lost interest in them.

In situations like these, which are surprisingly common, you might decide not to do anything and just accept that there’s nothing you can do about it. In that case it is unlikely that these situations would change. On the other hand you might decide to find new friends, perhaps with people who would be more understanding of your problems or not expect you to be the way you used to be. That might be easier said than done, as you would still be faced with working out ways of seeing the new friends despite your pain and the same issues that were a problem in your previous relationships could surface again. Alternatively, you might decide to re-establish your old relationships.

Whichever way you decide to go it can help to think about how you could achieve your goals. Some of the key points to consider here could be:

1 Try to use the assertive skills referred to earlier to acknowledge your part in the difficulties experienced in the relationship. If you decide to re-establish your friendships this would obviously involve telling your friends that you want to renew the friendships. Rather than say you are totally fine as a means of avoiding placing attention on your pain, it is usually helpful to explain that you have a pain problem, but you now know how to manage it.

2 Be direct in letting friends or potential partners know what you enjoy and are capable of. Do it in a way that does not put responsibility onto the other person to ‘do something for you’ or to work out what you want.

3 Take the initiative if you want to be more sociable. Decide to do things that will bring you into contact with others. Joining a course or group that shares one of your interests is often a good place to start.

4 Initiate fun and encourage others to join you, rather than others needing to ‘look after’ you. Make and keep commitments like dates or evenings out, even if you have to modify plans as you go along.

5 Be prepared to explain your limitations in terms of sexual activity in a matter of fact way, pointing out what you can do to still have fun. Although this can be daunting in a new relationship, most people find that taking the initiative and explaining your situation to your partner as the relationship develops is usually better than waiting for them to ask you about it. If you leave it up to the other person to ask you why you are behaving in certain ways it is possible that they might be misinterpreting your behaviour. You can be honest without going into a lot of detail. Mostly, other people will want reassurance that you are okay and that they are not causing you any harm.

Of course, you may have to accept that you cannot win them all. Not all our relationships work out as we may wish. By taking the sorts of approaches outlined here at least you will have given yourself a good chance of establishing or re-establishing a relationship. If it doesn’t work out you will probably have learnt something from it. However, if it’s not working despite your best efforts it may well be better to conserve your energy for those who are interested in you (and whom you like as well).

Something for the spouse or partner of someone with chronic pain

As described in the previous chapter, it is quite likely that you also have been affected by your partner’s pain problem and all that goes with it. You may have begun to feel resentful for the extra load at home and, possibly, increased care of children or other duties. You may have had to work longer hours or take on more work to help make up financial loss if your spouse or partner is no longer working. Reduced income can affect your quality of life and can become a cause of tension and arguments.

Your social life may have been eroded because your partner is unwilling or unable to commit to arrangements made. You have less time to ‘do your own thing’. You may feel that no one ever seems to care about how you are, only about your partner. You may have trouble understanding what is actually wrong with your partner, his or her moodiness and depression, and why no one has been able to fix him or her.

You may feel that your partner is always talking about pain, or needing to be taken to doctors’ appointments, treatment sessions and it may seem never-ending. You may begin to feel that your partner is ‘out of it’ mentally because of medication, and you may start to become concerned about the amount he or she is taking.

Your spouse or partner may start to withdraw from activities at home and shut themselves away in the bedroom. Conversations at home may become very limited.

You may start to feel quite resentful and even angry about your partner’s ongoing condition. Over time, you might start to withdraw from him or her. You may also start to feel as though you can’t talk about your own needs or how you are feeling or coping.

You may feel that you have to bear the brunt of your spouse’s or partner’s anger regarding pain, loss of work, loss of self-esteem, and so on. You might also start to feel that it is almost as though you can’t have a normal lifestyle with your partner or spouse.

In situations like these your options may appear limited, especially if you don’t really understand your partner’s or spouse’s pain and the best ways to manage it. Nevertheless, there may be more options available to improve matters than you realise. A good place to start would be to read this book and to discuss it with your spouse or partner.

Spouses and partners of our patients have told us of the ways in which they have tried to deal with these types of issues. You may find some applicable to you or they may give you some ideas about the sorts of things you could try.

1 Encourage your spouse or partner. Allow your partner to try doing things he or she hasn’t been doing because of pain—it may be quicker and easier for you to do it but he or she needs to start doing these things again. Encourage your partner in this. Try to find opportunities to allow your partner to take the initiative in doing things for him- or herself, for the family and socially. Encourage your partner to practise the methods described in this book to manage the pain more effectively. Remember, a good way to encourage someone to do something is to praise them for their achievements (or their progress towards the agreed goals).

2 Get involved with his or her program. The exercises he or she will be doing are suitable for all people regardless of whether or not they have pain. Exercise together—exercising can be fun. Learn to use the relaxation technique as well—we all get stressed at times so it is a very useful tool for everyone. Have a look at the way you think—unhelpful thinking affects all of us at different times, The skills taught in this book for managing pain are life skills that apply to all people with or without pain.

3 Deal with any issues of dependency—in you or your spouse or partner. As your partner tries to practise the approach outlined in this book you may find him or her becoming less dependent on you. You may experience a loss of role to start with but it is important that you both talk about your feelings as this occurs. Take the opportunity to develop your own interests and increase independence yourself. Set goals as a couple or a family to increase socialising, family activities and holidays.

4 Try to make time to talk together about your partner or spouse’s pain and how it has affected both of you and your relationship. You may have had to endure a lot to support your partner or spouse through some quite difficult times. It would be surprising if it hadn’t affected you or your relationship. When you feel the time is right it can help to talk with your spouse or partner about how you have felt and your impressions of the changes in your relationship through the period of his or her pain problem. Do it in a way that is not blaming or accusing but learn to express your feelings again (rather than feeling as if you have to bite your tongue all the time). You may even have felt guilty that because you weren’t the one with the problem, you really shouldn’t be complaining. On the other hand, you may have grown increasingly resentful of the amount of time and effort you have had to put into helping your spouse. You don’t have to be a martyr, and it may not be good for your relationship for you to feel that you have to be a martyr. At some point it will be helpful to discuss how it has been for you.

5 Try to deal with any issues that concern you over your sexual relationship. Talk about sexual difficulties. Encourage each other to try different techniques and positions. Say what you do and don’t find enjoyable and express your needs also. You are working on this as a couple. Be prepared to make mistakes but also be prepared to have fun and laugh together as you work things out. Be adventurous. Address issues as they arise—don’t wait for resentment to build up to an argument. Investigate the many resources available in bookshops on relationship and sexual communication issues. Some of these texts are recommended at the end of this book.

6 Work on re-establishing good communication skills if there are long-standing difficulties in your relationship. This is an issue often raised by our patients when talking about such matters. If needing help, either attend some classes in the community or seek some professional assistance. You can do a lot by just starting to talk about things again. Try working it out together first but if necessary, your GP may advise you on professional assistance available.

For the children of people in chronic pain

For older children

By reading this book we hope you will have a better understanding of your parent’s pain and the options for managing it. Equally, you may have seen how you and your parent can work together to minimise the impact their pain has on you and your relationship.

There are some general points that can be made:

1 Try not to worry about your parent or feel that you need to protect him or her. Remember, in most cases they will still be quite well.

2 Try to recognise patterns of unpredictable behaviour, which may have made you avoid your parent. Discuss the problem of pain and mood swings, and discuss possible ways of dealing with these times.

3 Encourage your parent to keep using the strategies learnt from this book. Most people in persisting pain find it hard to keep practising these strategies. Support and encouragement from their family can be very helpful in this aspect. You might even find it fun (and good for your health) to join in with their exercise program.

4 Do things together, especially things you both enjoy. This can also help them to feel normal and accepted. Naturally, the activities chosen should be achievable for them. This should be negotiated, but try to start well-within their capacity rather than going for the maximum. Success with a small goal is usually better than another failure at something too ambitious.

5 Try to pay more attention to their successes, as these will have been achieved despite pain. Try to play down attention to failures, other than to see what both of you can learn from these.

6 Look for ways that you can be helpful around the home. To avoid doing too much for him or her (which they can find demeaning), try to negotiate which tasks you could do and which tasks they could manage.

For younger children

Younger children should be repeatedly reminded that their mother/father is well. They should be helped to understand that their parent is not dying and can still do most things around the home. It should be emphasised that many adults have these sorts of problems. However, they should be told that it is very unlikely that they will get the same problem when they are older. They can also be told that the problem can go away at times. In some cases it may be necessary to reassure the children that their parent’s pain is not their fault—even when they aggravate their pain after a session of play or an argument with the children.

It should also be mentioned (as calmly and reassuringly as possible) that their parent does have some limits, and these should be pointed out only when necessary rather than drawing too much attention to them. Keep more emphasis on the things that are possible. As much as possible you should try to do as many normal things with your child as you can manage, even if you have to modify how you do it. For example, you could try playing board games sitting at a table instead of on the floor.

To help to normalise these situations it can also help if the children are encouraged to join in with the exercises and relaxation sessions with their parent. This should be done as something that might be fun rather than as a type of treatment. Try to show affection with physical play, but work out how you can do that without getting too rough. Cuddles don’t have to end up as a wrestle. In some activities you may need to warn them that at times you may have to stop earlier than they might want, but at least you will have had some fun together.

For parents of children with pain

Whether your child is eight or fifteen, there are things you can do to be supportive.

One thing that most of us seem to agree on with this group (as with all age groups) is to avoid the quick remedies—that latest idea in a recently published magazine or the newest ‘cure’ on television may sound good to you but your child needs encouragement to follow the strategies in this book. You can play a major role here.

Perhaps a natural response for most parents will be to take over your child’s responsibilities around the home. However, this requires careful handling as it is important that they retain a sense of achievement and independence despite their pain. They may not be able to do all the things you would like to see them doing, but it is often helpful to at least allow them a chance to try tasks and to learn to manage them, even if they don’t do them perfectly. You have probably employed this strategy already in relation to many activities when they were younger.

Talk about the pain problem and explore with them possible ways of managing it—as outlined in the book, but try to avoid simply telling them what to do as that can often rile them, and undermine their own sense of competence. Be prepared to move on to other topics of conversation. Find shared interests and grow closer without focusing on pain.

If your child is younger you may have felt helpless and frustrated by the problem. You may have felt shut out because your partner has been more involved in treatment seeking for your child. Again, get involved with your child in normal activities.

Take the example we mentioned earlier of Robyn. Robyn was 15 years old, and confined to a wheel chair due to a back injury caused by playing sport. She was taking excessive amounts of morphine. Her mother, a nurse, was very involved in seeking treatment for her daughter. Her father worked long hours. With Robyn’s pain problem, he felt shut out and helpless to do anything. Tension escalated between father and daughter.

When Robyn attended a pain management program her father was involved in driving her, a half-hour journey or more each way for three weeks. She was able to tell her father about the program as they travelled. Their relationship improved as he learnt more and she was able to show she was managing the problem independently. Their relationship is now much closer.

The teenage years are typically a difficult time, for both the teenagers and their parents, even without chronic pain. Having chronic pain can certainly add to the many stressors faced by children in this period.

Take the case of Jenny. Jenny had taken regular school holidays in an area of Australia where the mosquito borne Ross River Fever was prevalent. Over a period of time when she was about 15 years old she developed generalised aching in her muscles and stiff, sore joints. Of course, this coincided with a time when she was working and studying hard at school, and had episodes when she became quite tense and suffered headaches.

Nevertheless, she was able to continue playing netball and attending school. She just had pain in her arms when writing for long periods. Blood tests revealed that she had been exposed to the Ross River Fever. Knowing that this could be the cause of her symptoms was helpful, but there was no treatment to stop the symptoms. To some extent Jenny still felt that her condition had not been taken seriously, and that the doctor was uncaring and had virtually told her to go away and live with the symptoms.

In reality, the advice that Jenny received was similar to the advice you have read about in this book on accepting that despite all the advances in medical science many illnesses are still not curable. In these cases, how much the patient succeeds in accomplishing their goals in life will depend largely on how well they put the types of strategies described in this book into practice.

Fortunately, Jenny’s mother encouraged her to follow this advice and did not keep pursuing more medical advice, even though there were some difficult times when Jenny felt she was not being taken seriously. Eventually Jenny’s symptoms settled, although she did describe increases in her pain when she had additional demands on her time. Jenny is now 27 years old, she has successfully completed a university degree, in the midst of which she married and had two children. She now runs her own business as well as sharing the care of her home and children with her husband. Jenny still has periods when she has muscle and joint pains, but she is confident that she is able to cope with them.

Interacting with others when you are in pain is often an added stress. That is especially true when your pain is there most or all of the time. Still, it is an issue which can’t be avoided. If you can interact with those around you effectively, they can provide an extremely valuable source of support. This can really help to lift some of the load off your shoulders and improve your quality of life—as well as their’s. On the other hand, if your interactions with others are often a problem then it is likely to make your pain that much harder to manage. While no two people in pain will have identical problems in their relationships with others, you can still learn from the experiences of others. The material presented in this chapter could help to give you some fresh ideas about your own relationships. Of course, ideas may not be enough to help you deal with these issues, but they might get you started. For many people, it would also be worthwhile to seek the help of a trained counsellor, psychologist, or social worker.