Emotional and spiritual pain
Lots of people tell us they feel emotional pain, or spiritual pain, even if they’re not religious. This is because living with a terminal illness makes them question their beliefs and personality, leaving them feeling unsure about who they are or what they want from the time they have left.
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In palliative care, understanding and managing emotional or spiritual pain is as important as managing physical pain. We know from speaking to people living with a terminal illness, and their families and friends, that emotional or spiritual pain is common regardless of religion, beliefs or culture.
It’s difficult to define emotional or spiritual pain, but it can be recognised from the distress or anxiety you may feel, even when you’re not in physical pain. Trying to answer some of the difficult questions you might have about life and its meaning, or resolving issues from your past, can often help you find a new sense of purpose, accept what is happening and find an inner peace.
Spiritual and emotional care aims to help people feel able to cope with whatever lies ahead.
Emotional or spiritual pain happens when people lose a sense of meaning or purpose in life and have unmet emotional or spiritual needs. These can include the need to address a loss of meaning or purpose in life, or a loss of identity, worth and esteem, to dealing with regrets and unresolved issues from the past. This pain is usually caused by a major event which challenges their core values and beliefs about how things are supposed to be. Those values and beliefs don’t have to be religious, although they can be.
Emotional and spiritual pain is not the same as depression, which is a recognised mental illness, although the two can happen together. Doctors recognise that it can also make physical pain worse. This means that reducing emotional and spiritual pain may also help to reduce physical pain.
One of the most powerful things that can help people in emotional or spiritual pain is finding things they enjoy doing. People in emotional or spiritual pain sometimes worry about being a burden to others, and focus on other people’s feelings. It can be difficult, but try to look after yourself and your feelings. Finding ways to cope with your illness and feelings, with the help of others if necessary, can make a big difference to your sense of control and purpose.
Here are some common needs that can help people cope with emotional pain:
- Having time to think.
- Finding a sense of hope.
- Being able to deal with unresolved issues.
- Having the time and space to prepare for death.
- Talking about their feelings without being judged.
- Speaking about important relationships.
Another way is to introduce a ritual which makes life feel meaningful and brings focus and structure into the day. It doesn’t matter how simple it is, as long as it means something to you. For a religious person, this might be a prayer or a religious service. But for someone who isn’t religious, it could be:
- making a list of values and beliefs that are important to you and why, and thinking of times when you’ve lived by these
- making a list of things you enjoy doing – even if you don’t feel up to them now, just writing them down and remembering happy times might help
- writing in a diary about what you’re thinking or feeling (you don’t have to share this with anyone)
- making a memory box
- trying a recognised relaxation technique, like meditation, can help you to focus on what’s happening now, and worry a bit less about the future
- doing something for someone else, if you feel up to it – some people find that doing good improves their self-esteem and gives them a sense of purpose
If you’re struggling to make sense of things, there are people who can help you better understand what you’re feeling.
Chaplains are based in hospitals or hospices. They’re trained faith leaders and come from various religious backgrounds. They’ll help regardless of your own religion, or if you follow no faith at all. If you want to see a chaplain at any time, ask a member of your healthcare team.
The Humanist Association has a pastoral support service that trains non-religious chaplains to support people in the same way that a faith leader might. Email them to find out if there’s someone nearby you can talk to.
Psychologist or counsellor
It can help to share your thoughts with someone who isn’t emotionally involved. It might be possible to get free counselling on the NHS or through your local health and social care trust in Northern Ireland. Speak to your GP about what’s available in your area.
The British Association for Counselling and Psychotherapy also has a UK-wide searchable directory to help you find a (private) counsellor near you. There are different types of therapy available, but the most important thing is to like and feel comfortable with your counsellor.
Many people find it reassuring to talk to others who are going through the same thing as them. Whether you’d prefer to talk to someone face to face or online, there are people out there who will understand what you’re feeling.
If you’d like to attend regular meetings with people in your area, you can search online for a local support group. Marie Curie also has a directory of support which may be useful. You can also call the Marie Curie Support Line on 0800 090 2309 for information and support. Our trained advisers can also help you find a support group in your local area.
Lots of charities, including Marie Curie, have online communities where you can share your experiences in a safe, confidential environment with people who understand. Macmillan Cancer Support’s community also has a discussion forum for atheists, agnostics and non-religious people affected by cancer.
Spirituality means different things to different people. In most traditional religions, spirituality is closely linked to and rooted in a set of shared beliefs, rituals and practices. This means that people without traditional religious beliefs can become particularly isolated if they don’t have a community of people with similar views and experiences to talk to. Even those with traditional religious views might be too shocked by their illness to know how to talk to anyone about their distress and what is happening to them.
It can be difficult to identify and help people in emotional or spiritual distress, especially as beliefs and attitudes can change throughout the illness. This means it’s worth regularly asking the person you’re caring for how they are and letting them know they can talk to you if they want to.
Even though no two experiences will be exactly the same, there are some things that might mean someone’s in emotional or spiritual pain. If you’re caring for a relative or friend and notice any of these things, you might like to encourage them to talk about it. They may:
- talk about feeling alone or abandoned
- say they don’t know who they are or have lost their sense of self
- fixate on past events and worry that they’ve caused others pain or upset
- not want to, or feel frightened of doing anything on their own
- talk about miracle cures or foods
- refuse help or won’t take medication
- worry about being a burden
They might also refuse to eat, although this is fairly common at the end of life so check with a doctor or nurse whether this is OK. Try to listen without interrupting or judging what they have to say, even if it sounds strange or you don’t always understand it. For people living with a terminal illness, feeling listened to can be a real source of comfort.
If you feel uncomfortable talking to the person about these issues, seek the help of someone who is more at ease with them.
This page is for general information only. It's not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.
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