Living with your illness

Although living with life-limiting illness can affect many aspects of your life, support, information and advice are available from a variety of sources to help you cope with some of the physical, emotional and practical issues you may face:

• Managing physical symptoms of your illness 
• Emotional support for you and your family 
• Assistance with the practical issues, such as school, college, work and finances
• Some of the healthcare options available
• Coping with sudden changes in your condition

Here are some sources of help:

• Your GP
• Your hospital specialist team  – doctors and nurses
• Macmillan Cancer Support
• NHS choices
• Marie Curie Cancer Care
• Your faith leaders (priest, vicar, imam etc)
• Social services
• Friends and family 

Children and Young People

It’s hard for anyone living with a life limiting condition but it is particularly difficult for children and young people. Somehow it’s harder for their voices to be heard and they can feel that they have no say in what happens to them. There seems to be more pressure to pursue treatments and avoid discussions about end of life care because it’s so hard for everyone, including doctors and nurses, to accept that this child or young person is going to die.

ACT – the Association for Children’s Palliative Care – has some helpful information for children, young people, their families and health care professionals. Visit  www.act.org.uk  or telephone their helpline on

For young adults diagnosed over the age of 18 years, living with life limiting illness can be especially stressful both for them and their families. Lots of factors can affect how young adults cope. Concerns around dependency on parents, pursuing higher education and career goals, keeping up with friends, trying to be normal and forming new relationships are just some of the issues. You can probably think of more. Try not to be frightened of talking to your family and friends about your concerns as they can be a huge source of support and comfort.

As your health deteriorates it is important to start thinking about your future care because: 

• Dying well is more likely to be achieved by talking about it early on. 
• It is vital that you talk about your need to plan your dying with those around you. 
• Talking about death doesn’t bring it nearer. It’s about planning for life – because it allows you to make the most of the time that you have. 
• There are 101 ways people find to talk about dying; there is no right or wrong way. 
• Not talking about wishes towards the end of life with friends, family and loved ones can mean that people may not get what they want, or die where they want. They might not have expressed their wishes about their care or funeral, or have made a will. They may simply not have said what they wanted to say. 
• Talking about dying makes it more likely that you, or your loved one, will die as you might have wished. 

Now look at the section on planning for your future care.