Telling people about your diagnosis

There is no one you have to tell. Who you tell, what you choose to tell them and when is entirely up to you. The only people who need to know are the health professionals involved in different aspects of your care. This is so that your care can be properly co-ordinated and you get the right care for you.

Your lead health professional will ask your permission to share information about your health with appropriate health professionals.

We are all unique, and our relationships and the people who matter to us are unique. Only you know who is important to you and what you want them to know.

The first person most people think about telling is their partner, or the person who is most significant in their life. This is the person who will provide emotional and often practical support to you through all the stages of your illness.

After that, people often think about telling their children, if they have them. When to tell them, or whether to tell them at all, might depend on their age, their understanding, and what you feel they can cope with.

If you need to tell a child about a terminal diagnosis and that a loved one is dying, we have advice and information to help you.

After telling the people closest to them, people tend to share information about what is happening to them as much or as little as they usually share news in their everyday life. For example, some people tell everyone straight away, because that is what they normally do when things happen in their life. Other people prefer to only share it with close family and friends.

It is worth remembering that people will want to support you, but they can only do so if they know what is happening. Think about who it is important to have around you as things begin to change.

Those are the people that you need to tell, so they can be there for you when you need them. Be aware that as you become less well, people will probably start to notice changes in you – these may be physical changes or they may be changes in your habits, such as stopping work or frequent health appointments. When this happens they are likely to make some assumptions or ask questions about what is going on in your life. You may want to think through what you might say to people as this starts to happen.

There is no right or wrong time to tell people – you need to tell people when you are ready and at a time that feels right for you. For some people the right time is straight away, but for other people it is as their illness progresses and they become more unwell.

Not everyone needs to know at the same time, and you can choose to tell different people at different times. For example, you might choose to tell the people you are closest to straight away, but only tell people at work when they ask you questions.

It is entirely up to you what you choose to tell people - not everyone needs to know everything. For example, you may want to share lots of information with close friends and family, but only tell your next-door-neighbour the basics when he or she starts to notice a change in you. Whatever information you decide to share, try to think about how the person you are telling would like to be told.

Some people like things to be kept straightforward and to the point, whereas other people might prefer a softer approach. In general it is best to use clear language, so people are not confused about what is happening to you. For example, you might say something like "I have lung cancer and the doctors say it is incurable."

You will have a different relationship with each person you want to tell, as well as perhaps wanting to tell them different levels of detail and at different times. Depending on who you are telling and how much you want to share with them, there may be different ways of telling people which feel right to you.

Just as each of the people you tell and your relationship to them is different, so their reaction to your news is likely to be different.

Many people will be shocked. Often people will cry. Some may be angry, or refuse to accept it, whilst others will be practical and try to talk about ways they can help. Many people will simply not know how to respond, or may say things that seem inappropriate. All of these reactions are normal and there is no right or wrong way for you to deal with them.

Often people worry about telling the people they are closest to because they know that they will get upset and that will upset the person they’re telling. It is completely understandable to worry about feeling emotional and how you can handle it. Just remember that it is ok to be upset and that often you don’t need to find words, but can hold hands or hug to comfort each other.

People also worry that friends and family members will treat them differently once they know. It is normal for people to worry about you and to want to look after you, even if you do not need it or feel that you want them to. The best way to handle this is to be honest with them about the level of help you need or want.

People also tell us that they are worried that telling people they are dying will change the life of the person they are telling. Although you may not want to do that, finding out too late can have a much bigger negative impact on people’s lives. There might be things they want to do with you or say, or time that they would like to spend with you. By not knowing, they will lose that opportunity.