By: Glen R. Horst MDiv, DMin, BA
If you have a serious illness, you likely have had to tell the story of your illness many times – to doctors, nurses, and other health care providers; to your employer and your work associates; to your family, friends, and neighbours; and perhaps even to curious strangers.
Each time you tell your story, you have an opportunity to think about what you want to include in it. Sharing your reflections about your experiences with others is important for inner healing and coping with your illness.
Is my story about medical facts or about me?
The story of your illness is about something that has gone wrong in your life and causes you worry. You may find that telling it is hard emotional work. When you tell your story to health care providers, they may sometimes focus only on the facts and not seem to recognize the anxiety these facts cause you. You may feel that they are concerned only about your illness and not about you as a person. The best medical care will consider the whole person, from a physical, spiritual and emotional standpoint. You may not want to talk about your feelings everyday, but there may be times when you really need to talk about what you’re going through.
When you are feeling a need to talk with someone about how your illness is affecting you as a person, you can tell someone on the medical team. This may provide an unexpected opening for such a conversation with them. At other times, a health care provider will arrange for you to talk with a spiritual care provider, social worker or trained volunteer.
Does everybody have a right to my story?
Family members and friends who ask about your illness often want to let you know that they are thinking about you and care about what is happening to you. However, you may not be in the mood to talk about your illness. You may feel ill, tired, or in pain, and find interacting with others exhausting. You may resent having to focus repeatedly on your illness. You may want to avoid the feelings of vulnerability or dependency that come up when you receive questions about your illness, or treatments, or prognosis.
Your story belongs to you and so it is personal and precious. You reserve the right to decide when and with whom you share it.
How can I make sense out of this shipwreck?
The story of your illness is part of the bigger story of your life. Your illness has interrupted the flow of your life’s storyline and has introduced a new chapter that is not going the way you expected your story to proceed. To some degree, you may feel this new chapter is a story about a shipwreck with no clear way forward.
Making sense out of the shipwreck means taking stock of what is left and making repairs. Beginning to reshape the current part of your story in a way that makes sense to you is an important challenge to face. You may want help to meet these challenges, for they may involve a lot of spiritual pain and hard work. Look for someone who has the time and training to help you to review your life and figure out how to “write” this special chapter of your life.
By intruding into your life, serious illness can damage self-worth, hope and faith. However, as you weave your illness into your life story you may find you can achieve some of these:
- Re-find your sense of self-worth.
“My life has value.” - Maintain your hope.
“My life has meaning and purpose.” - Affirm your faith.
“I can see myself as part of a larger whole.”
Reviewing my life – what really matters and has lasting value?
You will have your own unique way of telling the stories of your life. There are no two stories alike and there is no one right way of telling a story.
One way of getting started is to reflect on highlights and difficulties of various periods of your life, such as childhood, adolescence and adulthood. Focus on your proud moments, your greatest achievements, and your happiest times. Remember also embarrassing and sad times you lived through. Reflect on these questions:
"If I were going to live my life over again, what would I do differently?"
"What would I do the same?"
"Is there anything in my story that still needs to be finished?"
Such reflections will probably be familiar to you because we all have a tendency to review our lives from time to time. However, reflecting on your life may feel more urgent when you have a serious illness. These reflections become a way to sift through your life in search of what really matters and what has lasting value.
Sharing the significant stories of your life with others may become more important at this time in your life. Some people like to set aside a specific time to talk about what they’ve seen and done over a lifetime. Others share their memories in ways that are more spontaneous and include a variety of people, including friends and family members. Photo albums or cherished objects may provide easy openings for you to share important stories in either setting. Sharing becomes a way of reminding yourself and others of the legacy you have created in the living of your life. This can help you to approach the end of life with a sense of dignity.
What about stories that cannot be voiced?
Perhaps you have stories that are difficult to give voice to – stories that reawaken painful memories (child abuse, rape, war, past illnesses, broken or estranged relationships) and overwhelm you with feelings of regret, guilt, shame, anger or terror. You may find that you want to skip over these memories. You may be reluctant to review the story of your life with others for fear of opening old wounds.
One way to approach painful memories is to reflect on how these difficult pieces fit into your overall life story. You might ask yourself questions such as these:
"What have I learned?"
"How have I grown?"
"Where did my courage and resiliency come from?"
"Is there some healing still possible in relation to this experience?"
If you have carried difficult experiences as secrets, you will need to decide whether sharing them with someone you trust could bring additional healing. Sharing a secret story with someone who is able to listen carefully and without judgment could be a freeing experience for you.
See also: Finding a Spiritual Companion
Spiritual leaders and spiritual care providers usually have the skills and sensitivity necessary for receiving such stories respectfully. They may also be able to offer guidance that brings further healing. By giving voice to the more difficult stories of your life in a safe and supportive setting, you can find the strength you need to author your life story up to your last breath.
Does my life story fit into some grand design?
When you think about your life story in relation to all of human history or the history of the universe, it may seem like a short story – a very, very short story. Questions about how your life fits within the larger human story or within the unfolding of the universe may arise. You may wonder whether your life matters in the big picture – how the meaning you have found in life connects with the meaning of life.
Spiritual questions such as these relate to your philosophy of life. They invite you to reflect on your beliefs and values and your important relationships to understand who you are and what your place is in the big scheme of things.
If you are religious, you may find your relationship with a higher entity important for affirming the sacredness of your life. You may also find that being part of a faith community and following its religious practices may help you place yourself in a common story that gives meaning through the generations.
Whether you are religious or not, you may experience mystery, meaning and something sacred in your relationships. These relationships don’t have to be limited to people you’ve known throughout your life. You might also think of your relationship with yourself, the world and the universe. You may feel an inkling of mystery, meaning or something sacred when you remember the gifts of love, trust and forgiveness that have been shared in these relationships.
- Remind yourself of the love, trust and forgiveness you have received from those who have gone before you and those who have shared life with you.
- Remind yourself also of the love, trust, and forgiveness that you have given to those who have shared life with you and have left for those who will come after you.
All of these gifts are important legacies for the human story unfolding through the ages.
To share your own story, visit Your Stories.
Content reviewed May 2019