By: Glen R. Horst MDiv, DMin, BA
If a life-limiting illness has intruded into your life, you are probably experiencing tremendous upheaval. Most of us spend much of our lives trying to avoid thinking too much about the end of life. Now, you may begin to evaluate your life and think seriously about death and dying, perhaps for the first time. You must learn how to live with your illness and the possibility of death.
Even if you hold no particular religious beliefs, you may find yourself dealing with issues of a spiritual nature, such as identity, suffering and hope. What makes such issues spiritual is that they raise questions about the meaning of life – life in general and your life in particular. Your spirituality is shaped by the answers you give these questions.
You express your spirituality through your relationship with yourself, with others, with your environment and with a higher entity.
A life-limiting illness can raise questions of meaning and purpose in fresh and urgent ways and cause spiritual distress. If you need palliative care, spiritual care may be as important to your sense of well-being as physical care. Research has shown that people with life-limiting illnesses:
- consider their quality of life improved when their spiritual needs are addressed;
- value and frequently use spiritual beliefs and practices as a way to help cope with their situation;
- often want to talk about spiritual issues.
Many people explore spiritual questions near the end of life, searching for meaning and strength in relationships. Not only patients, but also family members and friends may look for new ways to understand the fragility of life or express the depth of their caring when it seems to matter most.
Common spiritual questions
Questions about your relationships
Serious illness and dying invite you to take a fresh look at your relationships. No one is going to be able to understand fully the many thoughts and feelings that come up as you face the end of life. No one can stand in for you. You may at times feel lonely and want to connect with people who care about what you are experiencing. You can make choices about whom you will let into the spiritual and emotional struggles of your dying journey. Sometimes you may be surprised by who is ready and capable of being your companion.
Questions about the meaning of your life
Serious illness and dying raise deep questions about the meaning of your life and invite you to take stock:
"Who will remember me?"
"What will they remember me for?"
"What memories can I still create?"
"Who am I really?"
Typically, we measure our worth by what we do and what we own. Illness can create a kind of identity crisis, especially when it is no longer possible to carry on with work or family life in the usual ways. If you link your identity to personal possessions, you may feel that something is missing when you are unable to enjoy them as you once did. You may begin to recognize that there is a lot more to you than roles, image and possessions. You may feel a deep desire to express this deeper self you are beginning to experience.
See also: Finding Meaning and Purpose during a Health Crisis
Questions about your place in the universe
You may find yourself considering how your life fits into the larger life process that has been unfolding since the beginning of the universe. If you are religious, you may have fresh questions about how your life is connected to the life of a higher entity. However, you do not need to be religious to wonder whether your life has some lasting meaning and impact in the life of the world. This hope for transcendence beyond the daily details of our lives lies deep within the human heart.
Common spiritual struggles
People receiving palliative care often have spiritual struggles as they face questions that have no easy answers. The struggles can be exhausting and discouraging. While some people may make spiritual discoveries, others may begin to question beliefs that they have held throughout their lives. Spiritual struggles may be particularly disturbing for a religious person who sees them as signs of spiritual weakness or a lack of faith.
You might want to ignore your spiritual struggles, hoping they will go away. However, usually they will only ease when you face them and work through them. This spiritual work is not easy, but it can lead to greater spiritual depth and a greater sense of well-being. Opening yourself to your spiritual struggles and allowing others to explore them with you can help you to accept the reality of your situation and to find meaning in it.
You cannot predict what your spiritual struggles will be, but the following often arise as people navigate the landscape of palliative care.
Feelings of isolation or abandonment
You may be experiencing a loss of community as your illness makes it impossible for you to go where you want to go and to do what you want to do. You may also experience a loss of give and take in your relationships as you become increasingly dependent on the care of others. If you have been referred to a palliative care program, you may feel abandoned by the doctors and nurses who were in charge of your active treatment. Sometimes such experiences can make you feel forgotten and uncared for. You may also feel that a higher entity has forgotten you and does not care either. Even if you have previously found comfort in prayer, you may find that these feelings of abandonment make it difficult to pray.
Feelings of isolation and abandonment can blind you to those who do care about what you are going through. Even as you struggle with these feelings, watch for signs of caring directed your way. Watch, too, for signs that the universe really is friendly and on your side after all. There are no guarantees you will find them . . . but, then again. . .
Anger and rage
You may feel angry as you struggle with why you have been singled out for your illness or why it has come at this point in your life. You may be outraged by the injustice of it all. You might direct your anger at a higher entity as you question why this entity did not protect you from your illness or remove it from your life.
Perhaps you have learned that it is wrong to be angry and so do not dare to express you anger at family, health care providers or a higher entity. However, when you swallow your anger rather than express it, you may end up feeling isolated and depressed. Not everyone will want to hear your anger, but it is important to find at least one person who is willing to let you give voice to your anger.
See also: Finding a Spiritual Companion
Guilt
Perhaps you feel responsible for your illness in some way or feel that you are being punished for something. As you reflect on your life, you may also feel guilty about particular relationships or events and wish you could make them right.
Even if you can think of things you did that increased your risk of getting ill, you are not to blame for your illness. Your illness is not a punishment; it is the result of natural causes. At the same time, you may find spiritual significance in your illness. It may be a turning point for dealing with regrets in your life. For example, you may want to repair broken or strained relationships with words like "I’m sorry, forgive me" or "I forgive you." Perhaps you also seek assurance that a higher entity forgives you for wrongs in your life.
Sadness and letting go
As you face the losses that have already occurred during your illness, you may feel deeply sad. As you think of the losses yet to be faced, you may feel overwhelmed. The loss of your roles and of your body image may be eroding your sense of self-worth. Your loss of control over your body, your daily life, and your future may bring with it a sense of helplessness and hopelessness. At the same time, you may find that you are not able to let go of your life.
Letting go is not the same as giving up. Letting go is a way of accepting that you are not in control of your illness or many other aspects of your life. Deep connections with others who understand you and allow you to express your emotions may help you feel ready to let go.
Suffering
All spiritual struggles involve suffering. Suffering is the mental, emotional, and spiritual pain you experience as you struggle with fears aroused by your illness and search for a meaningful place for the illness in your life story.
See also: Sharing Your Story
You might suffer from worries about physical pain or about the indignities of the dying process. You may also suffer from wondering about what good will come out of your living and dying or about what will happen to loved ones after your death.
Sometimes suffering can be eased as specific questions are dealt with – for example, questions regarding the progress of your illness, the care you can expect, family needs, and economic concerns. At other times your suffering will only be eased as you are able to discuss questions like these:
"Why me?"
"Why now?"
"What is the meaning of my illness?"
"What is there in the future?"
Hope and trust
In the course of your illness you may need to refocus your hopes many times. Finding realistic hope may seem like a difficult and endless task. Gradually, you may become aware that hope has more to do with trust in others and in the friendliness of the universe than in specific answers or outcomes.
See also: Hope and Denial
Questions about life after death
Whether you have a firm belief in life after death or not, you may struggle with the unknowns of what happens when you die. Many find it hard spiritual work to develop the courage and trust needed to embrace death and whatever lies beyond. You may be trying to reconcile what you believe about life and death and how you feel about your own life coming to an end.
Your biggest struggle of the spirit may not appear here. Yet, whatever your struggle, you can be assured that others have experienced it too. Spiritual struggles are almost always a part of navigating through the landscape of a serious illness.
Sometimes your spiritual struggles may make other people feel uncomfortable. If you try to talk to a family member or friends about your inner struggles, you may find that they change the subject quickly or try to cheer you up. Others may try to fix things by offering advice or reassurance. While you may like people who are cheery, funny or upbeat, you also need people who will listen to you when you are feeling sad.
Spiritual struggles are not easy to face or to work through. It takes courage to open yourself to your spiritual struggles and it takes trust to share them with others. Strange as it may seem, opening to the struggles, reflecting on them, and exploring them with others is the way through them. You are likely to bear your spiritual suffering more easily if you are able to share and discuss it with a trusted spiritual companion.
See also: Finding a Spiritual Companion
You might find it useful to consider where you are on a scale of spiritual pain and spiritual well-being. One end of the scale represents Total Spiritual Pain, while the opposite end represents Total Spiritual Wellbeing. Avoiding your spiritual struggles can lead toward spiritual pain, a loss of meaning, and a sense of isolation. On the other hand, as you face your spiritual struggles courageously with the support of others, you are more likely to find meaning during your illness and to feel connected to yourself, to others, and possibly, to a higher entity. As spiritual struggles come up, ask yourself which way you are moving on the scale: toward Total Spiritual Pain? or toward Total Spiritual Well-being?
Your spiritual struggles are signs of the vitality of your spiritual life. If you are able to honour these stirrings of your spirit and find a companion for exploring them, you may find spiritual depths you never knew you had. More importantly, you may find a surprising fullness in the remaining days of your life.
Content reviewed May 2019