When you learn you have a serious illness or condition, there is no right or wrong way to feel or behave.
When you feel ready, it may help to:
- recognise your feelings
- talk about your condition and needs
- find ways to cope with uncertainty
- find ways to continue to live well
- get support when you need it
It's OK if you do not feel ready to do these things. Focus on what is most important to you at a time. If you are finding it hard to cope, you can get support.
Recognising your thoughts and feelings
You may have lots of thoughts and emotions that come and go.
For example, you may feel:
- frightened
- angry
- helpless
- sad
- relieved
- lonely
- calm
Difficult thoughts and feelings may not go away. But they can get less intense over time.
It can help to:
- notice the thoughts and feelings and let them happen
- write down how you feel
- tell someone how you feel - someone you know, a healthcare professional or a listening service
Talking about your condition
Talking to your healthcare team and other people can help you to get the support you need.
Telling your healthcare team what matters to you
You may find it difficult to concentrate or remember information for a while.
After you get a diagnosis, you may need time to think about what you need. At your next appointment, you can ask any questions you have about your condition and care plan.
It can help to prepare questions, take notes or bring someone with you to appointments.
You can explain:
- what matters to you - such as improving symptoms or spending more time with your family
- how the condition affects you and your body
- things that are not clear to you
- any worries you have about your situation
- what kind of support could help - such as having someone to talk to or getting help at home
- things you want to do - such as continuing a hobby or going on a trip
Your GP or hospital doctor can tell you about supports in your area. You can make a plan together that includes your other needs as well as medical treatment.
Telling other people about a diagnosis
You do not need to talk about your diagnosis until you feel ready.
You decide:
- who to tell
- when to tell people
- what to tell people - you do not need to share everything at once
You can talk to someone who does not know you first if that helps. For example, a counsellor or support group.
When you tell people you know, it can help to:
- decide if you want to tell people in person or in writing
- plan what you are going to say
- use clear language so others do not misunderstand something
- find a place and time where you will not be interrupted if you tell someone in person
- think about questions people may ask - but you do not have to answer everything
- share how you feel - you do not need to be strong for other people
- prepare yourself for different reactions
- ask your healthcare team for support - they can tell people with you or to explain things to someone for you
- ask someone you trust to tell other people for you
Sometimes it helps to be doing something when you tell someone. For example, going for a walk.
Examples of things you could say to adults
To start a conversation
- I would like to talk to you about my test results if that's OK.
- This is difficult for me but I need to talk to you about my health.
- I have been unwell for while and I've found out what's wrong.
- I have some bad news about my health.
If you do not want to answer a question
- I would prefer not to go into details.
- I'm not ready to talk about that yet.
- That's all I can say at the moment.
If you want to change the subject
- This is difficult for me. Can we talk about something else?
- I want to focus on something else now.
- We can talk more when I'm ready.
Talking to children about a diagnosis
Children hear things and sense things. They may understand that something is wrong before you tell them. Talking to them can help them feel less afraid.
When you tell children, it can help to:
- give information for their age - older children and young people can understand more
- share things gradually
- let them know it's OK to ask questions
- explain any changes to their routine that may happen
- tell them they did nothing wrong
- name the condition and how symptoms may affect you
- ask another adult they trust to tell them if you cannot
- tell someone at their school who could support them
Examples of things you could say to children
To start a conversation
- You know I've been tired a lot. I've found out what's wrong and want to tell you about it.
- I have something sad to tell you.
To talk about the condition
- I have a condition that means I need to get treatment in hospital.
- I have a problem with my tummy. It makes me very sick.
- We don't know if I might die. I'm going to have more tests and try different medicines.
- The doctors have told me that they think I will die.
- I can take medicines so it does not hurt but the medicines will not make it better.
To explain dying, you could say that dying is when your body stops working.
To explain changes or feelings
- It's OK if you're very sad and want to cry. I am very sad too.
- When I feel sad, it helps me to talk to someone.
- You cannot catch the condition. We can still have lots of hugs.
- We can still do fun things together but I might need to rest more.
- It's OK to get angry because we can't do some things we used to do.
Something Has Changed is a book for children when someone they love is seriously ill and dying. The book is for children age 6 to 12. But it may help children of other ages too.
It comes with a booklet to help you:
- talk about serious illness and death in a way children can understand
- encourage children to talk about how they feel
Coping with uncertainty
There may be lots of things about your situation that you cannot be certain about. It can help to focus on the present and things you can know or can control.
Learn more about your condition and care options
Some people find that knowing more about their condition helps them to prepare.
You could ask your doctor about:
- who to contact if you have questions or concerns
- your treatment options
- ways to control your symptoms or side effects of medicines
- how your condition will affect your body
- what to expect if your condition is likely to get worse over time
- when to get help - for example, if your symptoms get worse
- reliable sources of information
They may not be able to tell you exactly how your condition will progress. But they can give you information to help you make decisions about your care.
Focus on things you can control
To focus on things you can control, it can help to:
- identify what you can control in your everyday life
- create a daily routine that works for you - plan for rest and activities you enjoy as well as things you need to do
- set realistic goals for things that are important to you
- think of things that have helped you through difficult times before
- try exercises to manage stress in moments where you feel a lot of stress, anxiety or worry
Continuing everyday life
It can help to continue everyday life as much as possible. You may need to change some things and try different support options to find what works for you.
Getting support
Getting support early can help you keep doing the things you enjoy for longer. Support is also available for your family.
Support can include:
- our programmes and courses
- palliative care
- our partner organisations
- financial support
Our programmes and courses
We have many programmes and courses that help people to live well with a health condition. For example, courses for COPD, dementia or cancer.
Ask your GP or hospital doctor if there are programmes for your condition.
Living Well programme
Living Well is a free programme for people with a long-term health condition. It provides workshops and resources to help you manage your condition better.
Balancing stress
Everyone experiences stress at times. Our free programme of 6 videos can help you understand and manage stress.
You will learn practical ways to deal with stress, worry, anxiety, low mood and relationship difficulties.
Palliative care
Palliative care is for any stage of a serious illness. It can help improve your quality of life and support you and your family while you are getting treatment.
Palliative care for serious illness
Our partner organisations
We fund many organisations that provide health and social services. Ask your GP or hospital doctor about organisations that support people with your health condition.
Organisations that provide mental health supports and services
Financial support
We have schemes and allowances that can help with healthcare costs.
You can also get information from: