Living With a Terminal Illness

Being told your illness cannot be cured can make time feel like it has stopped. You may feel shock, anger, fear, numbness or even calm, sometimes all in one day. Whatever you feel is valid. You are still you, and there is still living to do and support to be had.

What is happening

A terminal illness is one that is expected to shorten life and cannot be cured. For some people this means weeks or months; for others it means years of living with a condition that is managed but not cured. Doctors can often give only a rough idea of time, and people sometimes live longer, or shorter, than expected.

Palliative care is care that focuses on comfort, dignity and quality of life. It treats pain, breathlessness, nausea and anxiety, and it supports your family too. It is not only for the last days, and it can be given alongside other treatment. In South Africa, palliative care is offered by hospices, some public hospitals and some private teams, and many hospices can care for you at home.

Living with a terminal illness also brings practical questions. You may want to review your will, your funeral policy, your medical aid, any life or disability cover, and your retirement fund. You may want to decide who can speak for you if you become too ill, and write down your wishes about care. These steps can bring peace of mind to you and your family. Our Legal and Money hubs have guides that can help, and this hub's article on preparing for the end of life lists what to think about.

Signs to notice

• Fear or dread that comes in waves
• Anger at the illness, doctors, God or yourself
• Worry about being a burden or about family finances
• Sadness about plans and milestones you may miss
• Wanting to talk about dying, while family avoids the subject
• Pain, tiredness or other symptoms that affect your mood

30-second self-check

Answer yes or no. Go with your first honest answer.

• Is pain or another symptom not well controlled?
• Are you feeling low, hopeless or anxious most days?
• Do you worry that your family will struggle financially?
• Are there people you want to reconcile with or say something important to?
• Have you not yet written down your wishes about care or your will?
• Do you feel no one lets you talk honestly about what is happening?

0-1 yes: You seem to have some support in place. Keep talking about what matters to you.
2-3 yes: Some needs are not being met. Ask your care team about palliative support and counselling.
4 or more yes: Please ask for more help now. You deserve good symptom control and emotional support.

What you can do next

• Today: Tell your doctor or nurse about any pain or symptom that is not controlled. You do not have to put up with it.
• This week: Ask for a referral to a hospice or palliative care team, even if you still feel fairly well.
• This month: Review your will, policies and wishes, and choose who will speak for you if you cannot.
• Do some of the things that bring you joy or meaning: time with family, faith, music, nature or a special trip.

Your tool

Memory and Ritual Journal - prompts to help you record stories, messages, values and wishes you want to leave for the people you love.

When to get professional help

Get help for pain or symptoms that are not controlled, for low mood or anxiety that fills most days, or if you feel you are a burden and want to talk about it. Counsellors who work in palliative care are used to hard conversations.
Who can help: doctor, palliative care nurse, counsellor, psychologist, social worker, estates attorney

Getting help in South Africa

The Hospice Palliative Care Association of South Africa can help you find a hospice near you. CANSA (cansa.org.za) supports people living with cancer. Hospital social workers can help with grants, home care and planning. The Cleared Mind 24-hour Careline on 0800 212 146 can connect you or your family to a counsellor. Your faith community can also offer prayer, visits and comfort.