Receiving a diagnosis of an incurable illness is something that will affect us all differently. If you have been told that you are living with an incurable illness, you may react with fear, anger, sadness, depression, or something else completely.

There is no right or wrong way to feel about what you are experiencing. Below are some of the ways you might manage the uncertainty that you are feeling and some suggested sources of support. 

How you might feel after receiving an incurable illness diagnosis

• Fear: many people feel scared on hearing they have a limited time left to live. If you are experiencing fear, it can be confronting as you face your mortality in a way you have no control over.
• Anger: it is common to feel angry when receiving the diagnosis of a life-limiting illness. This might be a frustration with the external limits that are now placed on you and your life’s plans. There may be a resentment or rage at the unfairness of life and you might wonder ‘Why me?’ or ‘Why this illness?’
• Sadness: you may feel a deep sadness or grief for the impending loss of life. There are many things you may lose when faced with an incurable illness, and sadness is a natural response.
• Loneliness: receiving a life-limiting diagnosis might make you feel cut off from the rest of the world or that it is not possible to connect with others in the way you used to. You might wonder how others can relate to what you are going through, or that you don’t want to burden others by sharing your experience.
• Depression: the loss of all feeling, with intermittent bursts of sadness and anger, is also something you may experience. There is no shame in feeling depressed and it is very normal, but it is important to seek support to help manage it, including trying to share your feelings with loved ones. They won't be mind readers. You may find some helpful resources at the end of this article.

Living with uncertainty

If you have been diagnosed with an incurable illness, you may be facing a lot of uncertainty and unanswered questions. You might ask yourself things like, ‘How long?’, ‘How will it look?’, ‘What will happen to my loved ones?’

It is only natural to fear death. You might be fearing a long, debilitating illness that is painful or cause a loss of dignity; perhaps you fear leaving your loved ones behind, or you may fear the unknown and the lack of control death brings.

Coming to terms with an incurable illness is the ultimate challenge to a natural desire for certainty and predictability. You may want to make plans and know what the future holds to give you control over your life. But rather than soothing or providing a sense of reassurance, all chronic worry does is drain energy and any enjoyment of the present moment.

Ways to cope with uncertainty

Take action where you can

When receiving a diagnosis of an incurable illness, you may feel that you have no control over the facts of the prognosis, but you do have control over your reactions. You can take action to manage your symptoms, reduce your stress levels and reach out to loved ones for support.

By focusing on the areas of your life that you can control, you may help manage ineffective worry and rumination. This might be as simple as sitting with and facing your emotions - a courageous act that can help build your resilience, acceptance and sense of peace.

You may also take action to manage your stress and anxiety. Ways you might achieve this include the following ideas.

• Choose foods that support your immune system and maintain energy levels. A palliative care diet focuses on eating little and often, with a low volume but high calorie intake, including foods high in fats and dairy.
• Make time for exercise, if you are physically able to. This might be a simple walk in the park, some gentle stretches or dance. Moving your body releases hormones that can contribute to a positive overall mood and sense of wellbeing.
• Use focused relaxation to help restore a sense of control and balance. Try taking time out for meditation, yoga, deep breathing exercises or any other technique you may choose.
• Get plenty of sleep. The stress and worry that may come with uncertainty can cause disturbed sleep, so it’s especially important to create good sleep habits, such as taking the time to relax and unwind before bed.

Challenge your need for certainty

You may like to feel an element of certainty and control over your life, but to what degree is it always needed? Uncertainty and change are an inescapable part of life, and many of us adopt very natural coping behaviours to help manage the discomfort they can bring. These may include procrastination, seeking reassurance, repeatedly checking or micromanaging. 

You may choose to challenge these behaviours by asking yourself what it is you are seeking with certainty.

• What are the benefits that come from it?
• What are the disadvantages?
• What is your experience of uncertainty?
• Have you experienced negative events in the past, and are expecting a recurrence?

It might be helpful to discuss some of this with another person, whether this is a family member, friend or a professional (see support resources, below).

Work on accepting uncertainty

It is impossible to eliminate uncertainty completely, but to help come to terms with uncertainty, it can be useful to be mindful of which situations can trigger your fears. For example, does reading certain news articles, ruminating on your own, talking with certain people or running through mental lists contribute to your fears around uncertainty? Is there something you can do to limit your exposure to this?

If you are caught in the grips of uncertainty, such as worrying about what-ifs and feeling especially anxious, it might help to consider turning inwards and exploring what sensations, thoughts and emotions are present.

• What are the physical symptoms of uncertainty?
• Is there a feeling of tension, perhaps in your neck or shoulders, a shortness of breath, discomfort in your chest or stomach?

See if you can take a minute to notice what these sensations are urging you to do (take an action, pursue a train of thought), and, if possible, pause and see if you can stay in this mindset.

Try a breathing exercise or meditation (more details in the support section, below) to help. Over time, you will build resilience to stay with the sensations that come with uncertainty, and, with practice, begin to develop some level of acceptance.

Focus on the present

Anxiety and fear that come with uncertainty are often related to thoughts about what might happen in the future and ways in which you might be able to manage or mitigate this. A way you can help yourself is by bringing your attention back to the present, a place from which you can take action, if you choose.

When you feel fear-inducing thoughts or worries begin to overwhelm you, try switching your focus to the present instead. Where are you? What can you see? What can you feel? It might be helpful to try a mindfulness practice by following an audio meditation or incorporate it into an exercise programme, such as walking. This can help break negative thought patterns and catastrophic thinking, and, with practice, help change your preoccupation with future worries and ground you in the present. 

Find out more

Further reading

• Mind: Mindfulness tips and exercises 
• Mindful: Five simple mindful practices for daily life 
• UK Therapy Guide: Overcoming fear of death 
• The Art of Dying Well: Accepting your mortality 
• Marie Curie: Coping with a terminal diagnosis 

Talking therapy and support

• The UK Council for Psychotherapy
• has a searchable directory to help put you in touch with a psychotherapist close to where you live.
• If you are finding it difficult to cope with change and uncertainty following an incurable illness diagnosis and would like to speak to a trained volunteer, visit the Samaritans website  or call 116 123 for free.

Related pages

• Death and dying - what to expect: understand what might happen when you or someone important to you is nearing the end of life.
• Talking about dying: death is one of the most difficult subjects to discuss with family and friends; here we give some ideas on how to start the conversation.
• Planning ahead: a collection of articles that look at planning and decisions for the end of life, including planning care in advance, making a will and Lasting Power of Attorney.

The EPiC Resource Centre is kindly sponsored by Cleenol: working for a cleaner, safer, kinder world.