Being told that you have a brain tumour is a huge shock. Sharing this news with others is an important part of coming to terms with your diagnosis, getting support and moving forwards. But it can be incredibly difficult, especially if you’re worried about the impact your diagnosis will have on your loved ones or how they’ll react.
Here, Chartered Clinical Psychologist, Dr Nick Mooney, offers his advice on finding the right way and the right words to start those difficult, but very important conversations.
Take time to process the news yourself
Receiving a brain tumour diagnosis is likely to bring waves of difficult emotions. It can be really helpful to tell those closest to you, so that they can offer support. But don’t feel rushed.
It’s okay to take some time for yourself to process the news before telling others. This can help you to work through your own questions and emotions before addressing anyone else’s.
Coming to terms with your diagnosis may also help you to explain your news when you feel the time is right to share it.
Remember that it’s normal to feel nervous
It’s natural to want to try and protect your loved ones from knowing about your brain tumour and to feel anxious about delivering the news. You might feel guilty about worrying them or scared of what they might say.
Telling people about your diagnosis is understandably difficult, and it requires courage. Remember to show compassion to both yourself and those you tell.
Telling the truth and being honest might be hard, but in the long run this will create less stress as you won’t have the additional worry of people finding out. It can also help you to feel less alone.
Consider who you want to tell
Disclosing your diagnosis can be a really beneficial way of increasing the support around you for the days ahead. However, you might find it helpful to limit the number of people you speak with initially, especially if telling people face-to-face, so that you don’t feel too overwhelmed by the reactions of a larger group.
You could start with first telling the people closest to you. After that it might be helpful to sit down and make a list of everyone else you wish to know. You might even ask a close friend or loved one to help you tell people.
Of course, there may be people or situations whereby you feel that it’s not helpful to talk about your tumour. Many people will have concerns, for example, about telling their employer about their brain tumour diagnosis.
There are resources that can offer you more information on this. Ultimately who you decide to tell and what you decide to share about your diagnosis should always be your choice.
Working while living with a brain tumour
After a diagnosis it can be difficult to know whether to tell your employer and how to do it.
Our employment resources can help you make that decision.
Think about what you want to say
Before sharing information about your diagnosis, it can be useful to set some time aside to think about what you want to say and then to break this down into three or four main points.
Knowing the name of your tumour, details of your treatment plan and the possible outcome can help you and your loved ones feel more at ease because it reduces uncertainty. It’s possible that you may not have all the information you need to answer the questions you may receive.
If someone asks you something that you can’t answer, it’s okay to say “I don’t know”. You can always find out the answer together at a later date. Remember that it’s also okay for you to stop the conversation at any point if you’re feeling overwhelmed.
Consider how you want to deliver your news
How you choose to share news about your brain tumour diagnosis is a very individual decision. Many people find talking face-to-face beneficial.
This can help you answer any questions and set the scene for the type of support you might want from those closest to you. These conversations are often easiest in quiet and familiar locations, when you have time to talk and won’t be interrupted.
You might even like to have someone with you when you talk to people. This could be a partner or a close friend who may have been with you when you were diagnosed, and can offer support.
Of course, telling everyone in person may not feel right or be possible in every circumstance. In some cases, you might prefer to share your information over the phone or via email, WhatsApp or some other form of social media. It’s important you’re aware of the limits of confidentiality to these platforms. Sites such as Caring Bridge offer more secure ways of inviting people to communicate about your diagnosis and treatment progression.
If you’re telling your employer, for example, you might choose to initially send an email and then meet face-to-face to discuss plans and adjustments you may need in your employment during treatment.
Once your work knows, you can then decide whether or not you would like to share your diagnosis with other colleagues. You can also decide whether you or someone else in the organisation shares your news with wider team members.
The power of sharing your story
Nigel French talks about the effects of talking about living with a brain tumour.
Introduce the subject in a way that works for you
Starting a difficult conversation can be tough. Expressing how hard it might feel for you to say what you are about to say can remove some of the struggle. For example, you could start the conversation by saying: “This is really hard, but I need to tell you something,” or “I’ve got some difficult news that I’d like to share.”
One method of discussing your diagnosis for the first time is to keep the information short and to the point by ‘funnelling’ it. For example, “I was having X symptoms for Y amount of time. My GP sent me to a specialist, who performed a series of tests and scans. The results are that I now have a diagnosis of Z.”
Try and deliver information in small chunks
Talking slowly, providing information in short chunks and taking breaks can be helpful when delivering difficult information.
A useful metaphor for how to disclose information about your diagnosis is that of a swimming pool. Typically we don’t just jump straight in. More often we slowly dip our toes in first to test out the water. We then gently and gradually ease ourselves into the water. Talking about your diagnosis and treatment is a process, so feel free to take your time and go at your own pace.
Only disclose as much as feels comfortable
It’s important to remember that you can choose not to share information about your diagnosis. When it comes to making this decision, there is no ‘right or wrong’, only ‘helpful or unhelpful’. There might be certain people who you find it really helpful to share everything with and others that you choose to limit information on a ‘need to know’ basis.
This is particularly helpful when speaking with children and teenagers where they might suspect something is wrong, but aren’t able to comprehend some of the more specific issues.
Be honest about what you need
It’s important to remember that you can’t always control how someone who cares for you will react, when hearing about your diagnosis. Some people fear that they’ll be pitied by others. Others might be concerned that friends or family will be overwhelmed and either smother them or distance themselves.
By continuing to be honest with what you expect from your loved ones, you’ll have some reassurance that you’ll get the right level of support at the right time.
Reminding loved ones that they don’t have to talk about the tumour all of the time, or that you don’t want to be treated any differently (unless you request this), will help you to feel yourself and put them at ease as to how to behave.
How can your loved ones support you?
It isn’t always easy to communicate any support you might need after a brain tumour diagnosis.
Our resources explore some of the ways your friends and family can support you.