Talking about your condition

Introduction

After being diagnosed with a serious illness, you may find it very difficult to talk about what’s happening to you and how you feel. Many people can find it awkward and embarrassing (or uncomfortable and even painful) to talk about their illness with their family and friends. Talking to the nurses, doctors and other professionals can also be difficult.

This section offers some simple advice that will make you feel more comfortable about asking what you want and need to know. It will help you to talk about what you are feeling, if you want to.

It can also help you to understand why your friends, family and even your doctors and nurses may find talking awkward. It gives tips on how you can help them – even though you may feel that they should be helping you! This section aims to help you:

  • understand the most common reactions to being told you have a serious illness
  • understand what your friends and family may be feeling
  • find a sensible and practical approach that will help you to talk about your illness more freely and easily

In this way you can get the emotional support that you need.

Difficulties in talking

Many serious illnesses can now be cured, and treatments have become easier to cope with. However, the moment you are told you have a serious illness is almost always a time of deep emotional crisis and distress. In fact, most people say that they have never faced a bigger and more frightening challenge in their life.

It is very important to realise that there is no single ‘correct’ way to cope with a serious illness. This section can give you some general guidelines that you may find helpful. But how you talk to people about your illness will depend very much on your own personality and how you usually talk to the people around you.

Talking about your illness can help you to feel closer to the people who matter to you and can help you to cope with the difficulties that an illness can cause.

Don’t be worried if the examples or illustrations used do not fit in with your own style – you can adapt them to suit yourself.

Talking about what is important to you

It’s important to talk to the people who are important to you about what you would like to happen if you become ill in the future. This gives them guidance, confidence and strength in case they have to speak or make decisions for you. If healthcare professionals know your wishes, you’re more likely to get the care you want.

You can talk about anything that’s important to you. You may want to discuss matters such as:

  • how you might want any religious or spiritual beliefs you hold to be reflected in your care
  • the name of a person/people you wish to act on your behalf at a later time
  • your choice about where you would like to be cared for, for example at home, in a hospital, nursing home or a hospice
  • how you like to do things, for example preferring a shower instead of a bath or sleeping with the light on
  • concerns or solutions about practical issues, for example who will look after your dog if you become ill
  • your understanding of your illness and how you think it might progress over time
  • the aspects of your life that matter most to you, and where your own personal health sits in relation to this. For example, would you like to attend your grandson’s wedding even if it might be detrimental to your long-term health? Would you like doctors to prolong your life for as long as possible even if this causes you some discomfort, or might there come a time when you want to be made comfortable and let nature take its course?
  • any preferences you have for the type of care or treatment that might be beneficial in the future, and whether these preferences are likely to be available
  • your thoughts on different treatments or types of care that you might be offered
  • your thoughts on future care planning, organ donation, advanced directives and cardio-pulmonary resuscitation

If you become unable to make a decision yourself, this information will help those caring for you to make decisions on your behalf. Being involved in writing this information down is a good idea and may help you to structure your thoughts and give you some ideas about the kind of things you’d like to talk about.

The links below provide information which may help inform these discussions:

Your feelings

‘When my doctor told me the news my mind went completely blank. I don’t think I heard a single word he said after that.’

When you first hear that you have a serious illness, however good the outlook may be, you can have very strong feelings of shock and disbelief. Most people feel this. You may feel numb and unable to take in what is said, or feel as though it is all happening to someone else.

Shock

Most people are not at all prepared for being told that they have a life-threatening illness, even if they already thought that they may have it. The moment of being told is still very traumatic.

There are many reasons for this feeling of shock. Some of the following may apply to you:

  • the fear that you may die
  • not knowing what to expect
  • the possibility of unpleasant treatment
  • the fear of being in pain
  • feeling useless (physically or emotionally)
  • the fear of losing control of some parts of your life
  • fear of being a burden to your family
  • the possibility of losing the ability to work and earn money
  • the worry about what other people will think of you

Each person’s reaction will be very individual, but being diagnosed with a serious illness can cause feelings of concern and fear that are shocking and deeply distressing.

Avoidance (denial)

In many people there is a feeling of disbelief and also a wish to shut out and deny the news and pretend that it is not happening. This feeling is known as avoidance or denial and is a normal reaction to distressing or difficult situations. It helps people to deal with very threatening or overwhelming news when they first hear it. For many people it will help them to cope with their situation.

Sometimes, however, avoiding the reality of a situation can stop people from doing things that they need to do, like going for treatment or sorting out money problems. It can cause problems if relatives need to discuss particular issues and the person doesn’t accept that they have a serious illness.

Denial can be a very useful way of handling distressing news. It only becomes harmful if it goes on for many weeks or months or makes it impossible for the person who is ill and the people around them to talk. If you feel that you are using denial (or if someone close to you points it out to you), don’t blame yourself or feel that you must hurry to overcome it.

You may find that the shock, disbelief and denial make it difficult for you to talk about your situation. All these are natural reactions to a diagnosis of a serious illness. These, and other emotions, are discussed in our emotional effects section.

Natural shyness

Some people are not used to talking about very personal and intimate issues. If that has been your way in the past, then you may find it difficult to talk about your feelings at a time of crisis.

Most people don’t like talking about their own needs. They don’t want to seem ‘pushy’ or demanding. However, there will often be friends and relatives who really want to help. So if you can start a conversation with them and say what you need or want, you may be surprised at how many people are willing to support you.

If you find it difficult to talk about your feelings with the people close to you, you may find it helpful to contact a support organisation who can talk things through in confidence.

Losing control of your feelings

Other feelings may make you want to be alone and not talk. You may be unsure about how you will react when you talk to other people – you may be afraid that you will cry and not be able to stop. You may feel that you want to stay strong when you talk to people and that it is not good to cry.

However, when you are dealing with something as difficult as a serious illness, it is natural to need to cry and it is fine if you do. Sometimes the other person may also get upset and cry with you. This can be very supportive, as though you are facing the situation together. Often, it is because the other person cares so much about you that they have become upset. Crying together can feel like a real release of feelings and can bring you closer together. It may be a relief to both of you.

Telling other people you have a serious illness

You may be worried about how your friends or family will react – will they withdraw from you? Will they blame you? Or you may be worried that talking about your illness might make things worse.

Many people feel guilty and think that they have brought the illness on themselves in some way. However, this is not true.

Although some of your friends and family will find it difficult to talk about your illness, the best way to overcome their fears is by talking. This is not always easy. One of the most difficult things about being ill is the need to tell friends and family about the illness. Most people who are ill feel that they don’t know where to start.

It is usually possible to have your partner or a close friend with you when you see your doctor, so that you both know what is going on.

The following tips can help you to talk about difficult issues:

Try to get the setting right

Make sure the television is turned off, the door is closed, you are both sitting comfortably and you can both see each other’s face easily.

It’s always worth introducing the subject gradually

Rather than just saying you are ill straightaway you could say something like: ‘This is going to be difficult, but I need to tell you something.’ If your situation is worrying but sounds as though it will be all right in the long term you can say that. For example: ‘I have had some bad news, but there is a good chance that everything will be OK after I have had treatment.’

There is no easy way to tell other people that you are seriously ill

You can only tell them in the way that feels best for you. Sometimes it is easier to give the news over the telephone or by letter, rather than being face to face.

Ask what they already know

If you think your relative or friend knows some of what has been happening, then it can be quite useful to ask about that, before you repeat what they already know: ‘You probably know some of this already, so if you tell me what you know then I can add to it.’

Give the information in small chunks, a few sentences at a time

Ask your relative or friend if they understand what you are saying before you carry on. You can say things like: ‘Does that make sense?’ or ‘Is that clear?’

There will often be silences – don’t be put off by them

You or your relative or friend may sometimes find that you don’t know what to say. Just holding hands or sitting together in the same room can say more than any words. If you find that a silence makes you feel uncomfortable, the easiest way to break it is with simple questions such as ‘What are you thinking about?’

Say what you need to say

When you tell someone close to you that you have a serious illness, they may feel very upset and depressed. Because of that you may feel that you have to put on a positive and cheerful face to make them feel better. This is fine if your situation looks OK. But if you are really worried about the future, you don’t need to hide that from your relative or friend, to protect their feelings.

Try to stay as close to the real situation as you can

It may be painful for your relative or friend at that moment, but if you are too positive, they may be much more hurt to find out the seriousness of the situation later on.

These tips can make a difficult conversation a bit easier. It may not feel fair that you should have to do so much, especially when you probably need support yourself. But talking about your situation can help your friends to support you in the future.

Other people’s attitude

When it comes to talking to people about your illness, you may be worried that they’ll feel uncomfortable. You may be right – people often do find it difficult to talk about something so serious.

Your family and friends may also have no idea what to say, but may feel that they ought to know what to say. They may feel that they want to help you and may think that there is a ‘magic formula’ they can use which will make you feel better, but they don’t know what it is!

Avoidance

If other people don’t know what to say, they may avoid you altogether. This can be very hurtful.

Denial

You may also find that some family members go into denial. This means that they cope with the situation by pretending that it is not happening. Again, this can be very upsetting when you need their support. Sometimes, after a while, their feelings will change and they will be able to talk to you. However, if they can’t, you may have to accept that this is their way of dealing with things. In this situation you may need to rely on other people for the support that you need.

Lack of experience

Some people may have no experience to guide them in supporting you. They may not have had a serious illness themselves or may not have known anyone else with one. They may be unsure of what you want and need, and may not know how to ask you.

It is not your friends’ or family’s fault if they feel uncomfortable or unable to talk to you. It may just be that they find the subject very difficult and they are afraid of making things harder for you.

Fear of your reaction

Your friends or family may also be worried about how you will react if they bring up the subject of your illness. They may think that they won’t know what to do if you cry or get upset.

It can be difficult to talk about your illness for all the reasons given above. But if you are open and talk about your situation and feelings, you can let people know what support you may need.

You can learn to judge reactions, and see who is willing to talk to you and able to be supportive. You can focus on these people and perhaps just talk about social or everyday issues with people who do not feel able to discuss your illness or who react in a way that you do not find helpful.

Benefits of talking about your illness

It can be so difficult to talk about illness that you may think ‘Why should I bother?’ Why is it worth talking about what’s going on if it makes you and your friends feel uncomfortable? But talking can help you cope with any uncertainties or difficulties that may lie ahead. It can give you support, and can help you have some control over your situation.

  • Generally, people seem to get comfort from talking to each other. Discussing fears or concerns can put them into perspective.
  • Sometimes, you may think you have unanswered questions and you may find it difficult to make up your mind about some issues. You may only realise the answer when you ask someone else the question. In other words, talking about something can often help you to know how you feel about it.
  • If the person you are talking to hears your fears or concerns and then simply stays with you, it can help you to feel that your feelings are completely normal. This may reassure you.
  • Talking about a fear or a worry often stops it from growing in our minds. Often when we are thinking about something all the time, we worry about it more and more. Once the fear is out in the open and is being discussed, this process often stops.
  • Finally, talking about something important or personal creates a bond between people. This is valuable in itself and can make you feel appreciated and supported.

Taking control of your situation

We would all like to have control over our health, and our future. Being told that you have a serious illness can make you feel fear, panic, uncertainty and despair, and you might feel that you have lost control of your life. A serious illness can take away our certainty that we know what is going to happen to us. This loss of control can feel very threatening and frightening.

Getting information

Finding out about your illness and treatment for it can help to give you back some feeling of control and can help you to feel more confident about the future. You can ask your doctor or nurse to tell you about your illness and its treatment.

Some people want to know everything possible about their illness. This can help them to explain things to their family and friends. This understanding increases their confidence and can also help them during talks with their doctor. Sometimes there may be a choice of treatments. In that situation it is helpful to get your doctor to explain all the benefits and disadvantages of each treatment so that you can make the choice that is right for you. With more information, some people feel more involved in their care and more in control generally.

Some people prefer not to know all the details of their illness and want to leave all treatment decisions to their doctors. If this is how you feel, you can just explain this to your healthcare team.

If you talk about what you really think and feel with your healthcare team, this can help them to focus on the issues that are important to you. Then you will really benefit from conversations with your medical team.

Reliable sources of information

You may find it difficult to get all the information that you need from your doctor or the nurses looking after you. Your own healthcare team is in the best position to help you and answer your questions, because they have the most information about your situation, your illness and your general health. However, whilst there are other sources of support and information it’s important to get information from a reliable source. Some well-meaning people may want to tell you about awful experiences of your illness that are not relevant to your situation at all. If this happens to you, let the person know that you feel uncomfortable hearing about other people’s bad experiences and you’d rather get the information you need from healthcare professionals.

Who can you talk to?

Some people are lucky. They have a close circle of friends and family who can give them a lot of support. Other people don’t have many people to support them.

However, even with a supportive family and a wide circle of friends it can at times be difficult to talk about a serious illness. There can be a deep feeling of inner isolation and a sense that only people who have experienced the same illness as you, can understand your thoughts and feelings.

So, if you want to talk, who is the best person to talk to?

The most likely person is whoever you usually talk to about important issues. They know you best and can hopefully give you the support that you need.

If it is difficult to find such a person, maybe there is someone else you might feel comfortable talking to about difficult problems? It might be anyone – your partner, your closest friend, your mother, sister, brother or a religious leader. It may even be somebody you quite like but haven’t, until now, been friends with. Often, people who are seriously ill find it difficult to talk to close family or friends, and find it easier to speak to someone they don’t know so well.

Organisations and counselling

If you can’t find anyone to talk to, ask your doctor or nurse or someone else on your medical team to tell you about any counselling services available.

Support groups

Most areas of Scotland also have support groups for a wide range of illnesses. Support groups usually consist of people with a particular illness and are sometimes led by a healthcare professional. Other members of the group may be in a similar position to you, or they may not. It is quite usual for a group to include people who are at different stages of an illness. You may find this wider experience helps you to see your own problems from a different perspective.

Some people find groups very helpful, and they form bonds with other members that are deeper and more significant than almost anything in their past. However, other people get embarrassed or uncomfortable when talking about personal issues with strangers. If groups aren’t your style, don’t worry.

Internet support groups

If there is no group near to you, or you have problems getting to one, you can join internet support groups or chat rooms. There are a number of internet groups for various illnesses. These are easy to join and enable you to share your experience with other people. If you want, you can stay anonymous and just read the emails of other people on the list.

This can be very supportive, as you can find out that other people have similar thoughts, emotions and experiences. It can make you feel less alone and can help you learn how to cope with the treatment and live with your illness. Internet groups are easy to join and also easy to leave, without any need for personal contact or explanations.

Someone involved in your care may be able to get you advice on the most relevant and reliable internet support groups or contact a voluntary organisation specific to your illness, for further advice.

If you don’t want to talk

Some people find that they don’t want to talk about their thoughts or feelings or about their illness and its treatment. They would rather just get on with life, and find that doing normal everyday things and not discussing being ill is the best way for them to cope with it

If this is how you feel, then don’t feel that you have to talk about your illness. If other people want to talk and you are a person who does not wish to discuss thoughts or feelings, then you don’t have to. It is fine to say that actually you find that the best way for you to deal with your situation is to just get on with life and if you want to discuss it you will bring up the issue.

Asking for support

When you have identified the people who can help and support you, you can take the following steps:

  • talk about day to day things if you want to, and when you want to. Having a serious illness doesn’t mean you’re not allowed to talk about anything else! Most people find it quite normal to talk about the minor aspects of everyday life as well as the major issues that they face – so you don’t need to feel limited.
  • if possible, try to decide which issues are most important to you, and are the things that you really want to talk about. Quite often you’ll find that it’s only two or three things that you really want to discuss – and that’s fine.
  • to introduce the topics that matter to you, it is helpful to signal to the person that you want to discuss issues related to your illness. You could say something like: ‘I want to talk about things that are quite difficult.’ This lets your listener know that what follows is something that really matters to you.
  • as you talk about the things that worry you, try to be specific. You may find it easier to take things in stages. You can start off talking about awkward subjects by saying something general, such as ‘I’m worried about how things are at the moment’ and then it is easier to go into particular areas – for example: ‘I’m not sure how long I’m going to be in hospital this time.’
  • if you have been worrying about something a lot, it is good to say so. ‘For the last few days, I’ve really been worrying about…’ etc. This lets the person listening to you know how important the issue is to you and they can focus on that.
  • when you are talking, it’s a good idea to check every now and then that the other person understands what you are saying. You can use any phrase you like to do that: ‘Do you see what I mean?’ or ‘Does that make sense to you?’ or ‘Do you understand?’
  • towards the end of the conversation try to make sure that what you’ve said has been heard. If you have asked for some things to be done, it is worth summarising – for example: ‘So you’ll come with me to the appointment on Tuesday to discuss the treatment, and you’ll ask Dorothy to collect the children then.’
  • after you’ve covered the main topics, don’t feel embarrassed to go back to small talk. You don’t have to discuss serious issues all the time and just chatting about everyday things can also help you to feel that normal life still goes on.

Humour

A lot of people ask if it’s a good thing to use humour when talking about difficult subjects. Humour can be a way of coping – it can help to make situations less frightening. If joking about things has been part of the way you have coped with frightening things in the past, it might help you now. If, on the other hand, you have not used humour in this way it may not be a good time to start.

Humour can be helpful in some situations, but it has to be used carefully, so that it doesn’t seem as though you don’t understand the seriousness of the situation.

Dealing with feelings about your illness

Talking about your feelings

Some people don’t have difficulty talking about their feelings. However, most people aren’t used to doing this and can feel awkward. Normally, this isn’t a problem. But when something serious happens, most people find that they do want to talk about how they feel, but because they’re not used to it, they feel uncomfortable. This is normal!

If you (or your listeners) have strong emotions and you don’t talk about them and keep them hidden, it can make it hard to talk about any subject easily. Keeping emotions hidden has an effect on all conversation. So if you, or your listener, are feeling angry or embarrassed or very sad, your conversation will feel very difficult until one of you talks about the feeling and brings it into the open.

If you ignore the feeling, you won’t be able to concentrate on the conversation and it will be hard to listen. The moment one of you mentions the emotion: ‘I’m sorry I seem in such a bad mood today, but I’ve just been told that…’ you will suddenly find that the communication gets much easier.

Useful guidelines

  • always try to acknowledge and accept any strong emotion. Whether it’s your own or your listener’s
  • always try to describe your feelings and not simply act on them. Think of the difference here: If you say, ‘I’m feeling really angry today because…’ this can start a conversation. But, if you show your anger by being sharp and irritable, it can stop the conversation instead
  • you are entitled to feel any way you like! The way you feel is the way you feel – emotions are not right or wrong. It is only if you try to cover up any strong feeling that problems can become more difficult to solve
  • don’t be afraid to tell the other person how much they mean to you. In our daily lives we don’t often do this. But when there is a crisis, it’s really worthwhile to tell the other person how you feel about them
  • don’t be afraid to say you’re unsure. If you don’t know how you feel, or if you don’t know what is going to happen or how you’re going to cope, it’s fine to say so
  • words are not always needed. Holding someone’s hand, hugging them or simply sitting together in silence can often mean as much, or more, than words
  • everybody has some regrets in their life. Don’t feel that you are not allowed to talk about any regrets you feel. More than any other emotion, regret can be reduced when it is shared. This may even strengthen the bond between you and the people close to you

Complementary therapies

Complementary therapies include things like relaxation, visualisation or meditation. They can help some people to cope with their illness and can help to give a feeling of being in control. Some hospitals, hospices and drop-in centres offer complementary therapies as part of their services for certain illnesses. Someone involved in your care will be able to find out what is available in your area.

Our section on emotional effects gives information about the different types of complementary therapies and has advice on how to find a reputable therapist.

Keeping a diary

Some people find it helpful to keep a diary, where they can write down all their thoughts, feelings and frustrations. Some people also write down their feelings about any good or positive things that happen to them. Keeping a diary can help you to work through various problems. Some people find that it can give them back a sense of control and perspective and can help them to deal with emotions and difficult situations.

Responding to other people

It can be very difficult to acknowledge that you have a serious illness. It is natural for anyone who has recently been told this news to feel overwhelmed by their emotional reactions. It can also be very difficult to deal with other people’s emotions and reactions to your situation.

Some people can’t cope with their own emotions and may tend to avoid the difficult situation altogether. So your friends might prefer to stay away from you, rather than accept that they have strong emotions that they cannot deal with. Here are some tips for dealing with this situation:

  • always try to respond to your relative or friend’s feelings. If you are good at guessing how people feel, it can be helpful to identify your friend’s emotion and what caused it. This can be quite simple, such as ‘When I talk about my illness you look really upset’ or ‘It looks as though you get very scared when you come here.’
  • don’t be afraid to say how you feel at the same time: ‘I think both of us are finding this awful.’ Or ‘I know you’re worried about what could happen and so am I.’ The more aware you both are of each other’s feelings, the better the communication will be.
  • if you get into some type of argument (which is not unusual) see the section ‘Hints for resolving conflict

Effects on sex and relationships

If the person you are talking to is your spouse or sexual partner, don’t ignore the subject of sex. If you had an active sex life before the illness, it will probably be affected by the diagnosis. Many factors affect this, including:

  • fear of the illness
  • fear of the treatment
  • resentment about the illness
  • changes in physical appearance
  • embarrassment

If you feel your partner is distant from you, try telling them as gently as you can. You may need to focus more on sensuality than sexuality at this time. Using touch can be an important way of telling someone how you feel and help you communicate emotions that are not easily expressed in words. Try to explain your needs and discuss what can be done by either or both of you. A simple discussion can make a big difference and will help both of you to understand how the other is feeling.

If your relationship itself is affected by your illness, it can be helpful to discuss this with those involved in your care. Our section on sexuality may also be helpful.

Talking to healthcare staff

Most conversations between you and your doctors or nurses will probably go smoothly. However, it isn’t unusual for people to sometimes feel that they’re not getting the information or support that they need. Here are some tips to help you:

  • ask doctors or nurses to use simple language and explain any medical terms. If your healthcare team use words that you don’t understand, you can ask them to explain them. Sometimes they forget that you’re not as familiar with medical jargon as they are
  • use your own language. Although your doctors or nurses may use medical jargon, you do not have to. There is nothing wrong with using your own words to describe the problem. In fact, using jargon that you only partly understand might cause problems by making the health professionals think that you know more than you do
  • when you’re embarrassed, don’t hesitate to say so! We all find certain kinds of medical symptoms and problems embarrassing – they’re very often the kind of personal matter we don’t talk about to someone else. So when you start talking about something that is embarrassing, you can just say something like ‘I’m sorry … this is embarrassing to talk about, but…’

Talking about your symptoms

You will often have to describe your symptoms – pain or nausea or breathlessness or some other medical problem. It is very important to also talk about any feelings and symptoms of depression or anxiety that you have. It is actually quite difficult to do this well but it is important to let people know how you feel.

Try to be as factual and open as you can when you are describing your problem. Sometimes it is tempting to exaggerate the pain or nausea to convince the doctor and get better or more urgent therapy. Alternatively there may be a temptation to play down the symptoms to appear strong or brave. If possible, ignore both of these temptations and try to describe the problems in an honest, factual and neutral way. It may not be easy, but if you do that, your doctor or nurse will have a better understanding of your situation.

If you try to overplay or underplay your problems, there is a risk that your health professionals will be less able to help you. So as far as possible, be very honest.

Assisted suicide and voluntary euthanasia

Under UK law, any action to intentionally hasten a person’s death is illegal, even if that person has asked for help to die.

Many people facing death retain meaning and purpose in their life, even when death is very close. However, some people do experience or anticipate psychological distress and feelings of hopelessness. People’s feelings often change over time.

Palliative and end of life care is about finding ways to lessen suffering, whether the source of that suffering is physical, emotional, social, spiritual or practical.  Talking to a doctor, nurse, psychologist or chaplain can help your healthcare team to identify ways they can ease your suffering, for example through better pain relief, or by working to resolve other circumstances that may be causing you distress.  Healthcare professionals such as these can also provide information about and access to ‘talking therapies’ which aim to help you work out how to deal with negative thoughts and feelings.

More information about some of these issues is available here:

There are also practical steps you can take yourself to exercise an element of control over your end of life care, and you may wish to consider making plans for the future, including: 

Asking for information

Your own feelings and fears may make it difficult for you to ask your medical team the right questions and to remember the answers. It can be useful to:

  • try and think of the most important questions before the discussion with your doctor
  • write down the important points on a piece of paper that you can take with you. Every healthcare professional knows how difficult it is to understand and remember information, particularly when it is serious and when it is about you. Nobody will mind you writing things down or making a list of questions that you want to ask
  • take a friend or relative with you to your appointments. They can help you remember things that the doctor says, and questions you want to ask but might forget
  • ask for simpler explanations. If you don’t understand what you’re told, it’s fine to ask the person to explain again more simply

  • remember, you will have other chances to ask questions. You can always make another appointment to ask your questions if you don’t cover everything in the first discussion, or if you are given surprising news that changes the questions that you wanted to ask

Once your doctor or nurse has answered your questions, it’s a good idea for you to summarise their answers and say something like ‘So you’re saying that’ or ‘If I’ve got that right, you mean that…’ These words make it clear what you have understood, and can encourage your doctor or nurse to explain things more clearly if necessary.

Dealing with uncertainty

Often, definite answers are not possible so you may have to accept that uncertainties are common – particularly with questions about the future. When the conversation is about very serious things that threaten your health or your view of the future, you might think that your doctor or nurse knows what is going to happen but will not tell you. Usually, that is not the case.

With treatment for some illnesses, there is very often a lot of uncertainty. The doctors and nurses will not always be able to tell you exactly what will happen to you. For example, if a treatment has a 40% chance of success (and therefore a 60% chance of not working) there is often no way of knowing if you will be in the lucky 40% group or not. It may help you to cope with the situation if you can understand how your progress will be measured. You can say ‘So you’ll decide from the x-rays if the treatment is working.’

If you are unhappy with the care that you receive from your healthcare team, try and talk about your worries as politely as you can. If you can say what you are unhappy with and how this affects you directly, people can hopefully change the situation so that it becomes better for you.

Hints for resolving conflict

When dealing with a serious illness, people are often worried and nervous, and conflict is common. You may find yourself in conflict with your friends or family or with a member of your healthcare team. Of course, some of your complaints about your treatment or care may turn out to be justified, and many can be resolved with time.

However, many people find themselves getting almost uncontrollably angry with friends or the healthcare team. Some of this feeling is caused by the basic human reaction of anger at having a serious illness. It can be difficult to control the anger and so it may be focused on the people close to you, or the people who are dealing with your treatment.

Sometimes, there is also a feeling of resentment that you are seriously ill and the other person is healthy. You may also feel very out of control and vulnerable and this can make you feel very angry.

For the above reasons, it is possible that you will disagree with some people at some stage. Here are some guidelines to help you to resolve some of the areas of conflict:

  • whenever possible, try to describe your feelings rather than just acting on them
  • try to acknowledge all emotions – whether they are yours or the other person’s
  • if you can’t agree on a particular issue, you can ‘agree to disagree’
  • talk the dispute over with someone else. You may see a way out of the argument by seeing it from a different point of view
  • try to see the other person’s side of the argument. They may be feeling very bad about the conflict. Seeing their difficulty may help you feel less angry
  • write down some of your feelings. This can help to put things in perspective
  • contact your health board. If your conflict is about your health care you can contact your local health board, who can help you to resolve any problems
  • contact a counselling service. If your conflict is about personal issues or home life, you may find it helpful to arrange some counselling sessions

Last updated:
19 October 2023

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