Every person has an origin story. For many, it starts with the phrase, “I was born . . .” For others, it starts with a significant moment or event that changed them forever. As a medical family therapist (MedFT), the stories of many of the patients I see start with the onset of symptoms or the diagnosis of cancer or a chronic illness.
My story begins on the day my mother survived a stroke.
I was a sophomore in high school and my mother was only 47 years old. The cognitive and physical impact of the stroke required the renegotiation of our family roles, priorities, and future plans. At a pivotal time in my development, I wanted my mother to focus on me and guide me through my teenage years, but the demands of our new life prompted a role reversal. I became responsible for driving her to her medical appointments, making sure she took her medication, and holding her steady as she learned to walk again.
Journeying through the Phases of Illness
Stories of illness remind me of Jesus’ healing of the bleeding woman who spent all of her money on medical care and only grew worse (Mark 5:25–34). For 12 years she was defined by her illness, and its constraints dictated her life. Her story, and the stories of those dealing with chronic illness, illustrate the tension of living through suffering. For Christians living with a chronic illness, faith in the Great Physician can be both comforting and agonizing, especially if they are waiting for a cure. Many describe the constant cycle between hopeful avenues and disappointing dead ends, along with a concurrent cycle between faithful obedience and doubt.
John Rolland, professor of psychiatry and behavioral sciences at Northwestern University, describes these challenges in terms of the developmental phases of illness. According to Rolland’s Family Systems Illness Model,1 the crisis phase of illness includes any symptomatic period before diagnosis and initial treatment. During this time, families often describe being in “survival mode,” accessing resources and problem solving as quickly as possible. When a family is in crisis, communities come together to pray and provide resources such as food, childcare, and other essentials for daily living. Conversely, the chronic phase of illness is often referred to as “the long haul,” characterized by day-to-day living with the impacts of chronic illness. Familial challenges include burnout, renegotiating the relationships between the patient and other family members, preserving autonomy, redefining individual and family goals, and finding intimacy in the face of threatened loss.1 Amidst these challenges families also experience diminishing resources, decreased social support, and the pressure to return to normalcy. I found the transition from the crisis phase to the chronic phase of illness to be tiresome and destabilizing. I felt powerless, but I watched my mother move forward with steadfast hope.
Many times in my life I have been drawn back to the story of the bleeding woman. Her faithfulness reminds me of my mother, who continues to press on despite any challenge that comes her way. Each time I return to the faithful woman’s story, I find myself dwelling on the length of her illness, imagining the strain of the years spent in social and religious isolation. I am inspired by her faith and courage to seek out Jesus despite her status as unclean. As the story goes, after touching Jesus and being healed, the woman realized she could not hide. Trembling with fear, she fell at Jesus’ feet and told him the “whole truth” (Mark 5:33).2 We are not told what her story entailed or about her day-to-day experience living with a chronic illness, but we know that Jesus, surrounded by a pressing crowd, stopped and listened.
Narrative Medicine and Listening Better
Rita Charon, a physician and professor of medicine at Columbia University, defines narrative medicine as practicing medicine with “the capacity to recognize, absorb, metabolize, interpret, and be moved by stories of illness.”3 Research has shown that for clinicians who take the time to listen to patients’ stories and seek to understand the lived experience of illness, the results are strengthened therapeutic alliances with patients, a broadened ability to consider others’ perspectives, and more authentic use of self in the provision of care.4 The ability to take the time to listen, to sit with patients between the fear of the unknown and the hope of healing, is essential to meaningful patient care. If I am honest with myself, I became a MedFT out of a desire to do more. I prioritized advocacy and action, which are important, but I did not fully understand the power of stopping and listening until I met Maria.
Maria5 is a middle-aged Puerto Rican woman who came to me with a traumatic history, numerous chronic health issues, and symptoms of major depression with hallucinations. For the first few sessions, Maria barely spoke and cried the entire time. I did not know what to do, so I just sat there holding her hand. Soon Maria began to tell her story of trauma, suffering, loss, and hopelessness. She shared that she had never before sought consistent mental health treatment and had never told her story in its entirety. Her medical record accurately listed her diagnoses, but her story elucidated the persistence of her pain. She had been suffering alone in silence. After telling her story, she slowly became more active in her treatment, shared her story with her physicians, and saw improvement in many of her health issues. When asked to reflect on her improvement, she looked at me and said, “It’s because you listened.” Maria reminds me of the strength of the human spirit and the dignity we have in Christ. We all deserve to tell our stories and to have others listen.
We see many forms of healing in the life of Jesus. By the touch of his clothes, Jesus healed the bleeding woman. By listening to her story, Jesus healed. By the pronouncement of the woman as “daughter” and the acknowledgement of her faith, Jesus healed (Mark 5:34). God reminds us that our identity is not in our suffering but in our relationship with him through Christ. God calls us to journey together through suffering and honor one another’s dignity by listening. Perhaps this means speaking less, listening more, or changing the way we currently listen.
Over the years, I have learned to listen better. It has become clear to me that the power of a story is not its beginning or end, rather, it is in between. Families that I journey with do not expect me to cure their illness or alleviate their physical pain. Rather, they invite me to walk alongside their families through the crisis, chronic, and sometimes terminal phases of illness. They invite me to accompany them through the in-between of life with illness, through the highs and the lows, through the sorrow and the hope.
Resilience-Building Strategies
I have encountered the strength and resilience of families most vividly in the day-to-day moments of their life with illness. Recently, some families have told me that their strategies for enduring and maintaining hope have also proved helpful for surviving the challenges of the COVID-19 pandemic. Given the unpredictability and unknown length of the COVID-19 pandemic and the seasons of uncertainty that may follow it, I offer some strategies shared by patients living with chronic illness:
Practice rituals. Rituals help us to build shared meaning and identity. In families, they promote security and a sense of belonging, and transmit values across generations. In the day-to-day, rituals can bookmark the day and help us transition from one thing to the next. Intentionally connecting with loved ones (e.g., family meals), meditating, or lighting a candle provides continuity and grounding in the present.
Celebrate the small things. When every day is described as “unprecedented” and the future is unknown, completing the smallest task is a call for celebration. Find ways to celebrate and reward yourself when you accomplish something meaningful.
Laugh. As often as you can, find ways to relax and soothe tension through laughter.
Create a shared family narrative. Connect your history, memories, and experiences in a way that promotes your family identity separate from the circumstance. Take the time to talk as a family about the pandemic and its challenges. Give every family member the time and space to share how they are impacted. Then talk together about what it means to be a family and the values you hold outside of the current circumstances. It is important to acknowledge the demands of the pandemic and work together to place boundaries around it. Our challenges have meaning but they do not need to define us.
Make plans. Think about the future and allow yourself to dream. When the pandemic is over or when difficult circumstances alleviate, what would you like to do? Where would you like to go? Simply talking about the future reminds us that there is a future.
Stop and listen. Listen to yourself and your body. Listen to your loved ones. What stories do you have to tell?
Take the time to grieve. Many of the typical coping strategies and rituals surrounding grief have been disrupted. Take the time to acknowledge what you have lost and give yourself space to process and grieve the losses, big and small.
Ask for help. We have a tendency to disqualify our pain by comparing it to others’ suffering. There will always be someone suffering more than we are, but respecting others’ experience does not mean that you need to discount your own suffering. Take time to assess your own needs and ask for help.
We are not defined by illness or suffering. Between diagnosis and healing, between loneliness and belonging, between life and death—there is joy and hope found in the small things. God is not absent in the in-between. In fact, he is listening.
I love the Lord, because he has heard my voice and pleas for mercy. Because he inclined his ear to me, therefore I will call on him as long as I live. (Psalm 116:1–2)
Alison G. Wong is an assistant professor of marriage and family therapy. Her background and training are in Medical Family Therapy (MedFT), educating physicians and providing therapy for patients and their families in primary care. Prior to joining the Fuller faculty, Dr. Wong’s clinical work and research focused on families coping with cancer from diagnosis to survivorship, as well as families coping with end of life issues and bereavement. Her current research explores the lived experience of illness for couples and families. In addition to her faculty role, she serves as the director of research at Fuller Psychological and Family Services. She is a licensed marriage and family therapist (LMFT) in California and maintains a small private practice.
Every person has an origin story. For many, it starts with the phrase, “I was born . . .” For others, it starts with a significant moment or event that changed them forever. As a medical family therapist (MedFT), the stories of many of the patients I see start with the onset of symptoms or the diagnosis of cancer or a chronic illness.
My story begins on the day my mother survived a stroke.
I was a sophomore in high school and my mother was only 47 years old. The cognitive and physical impact of the stroke required the renegotiation of our family roles, priorities, and future plans. At a pivotal time in my development, I wanted my mother to focus on me and guide me through my teenage years, but the demands of our new life prompted a role reversal. I became responsible for driving her to her medical appointments, making sure she took her medication, and holding her steady as she learned to walk again.
Journeying through the Phases of Illness
Stories of illness remind me of Jesus’ healing of the bleeding woman who spent all of her money on medical care and only grew worse (Mark 5:25–34). For 12 years she was defined by her illness, and its constraints dictated her life. Her story, and the stories of those dealing with chronic illness, illustrate the tension of living through suffering. For Christians living with a chronic illness, faith in the Great Physician can be both comforting and agonizing, especially if they are waiting for a cure. Many describe the constant cycle between hopeful avenues and disappointing dead ends, along with a concurrent cycle between faithful obedience and doubt.
John Rolland, professor of psychiatry and behavioral sciences at Northwestern University, describes these challenges in terms of the developmental phases of illness. According to Rolland’s Family Systems Illness Model,1 the crisis phase of illness includes any symptomatic period before diagnosis and initial treatment. During this time, families often describe being in “survival mode,” accessing resources and problem solving as quickly as possible. When a family is in crisis, communities come together to pray and provide resources such as food, childcare, and other essentials for daily living. Conversely, the chronic phase of illness is often referred to as “the long haul,” characterized by day-to-day living with the impacts of chronic illness. Familial challenges include burnout, renegotiating the relationships between the patient and other family members, preserving autonomy, redefining individual and family goals, and finding intimacy in the face of threatened loss.1 Amidst these challenges families also experience diminishing resources, decreased social support, and the pressure to return to normalcy. I found the transition from the crisis phase to the chronic phase of illness to be tiresome and destabilizing. I felt powerless, but I watched my mother move forward with steadfast hope.
Many times in my life I have been drawn back to the story of the bleeding woman. Her faithfulness reminds me of my mother, who continues to press on despite any challenge that comes her way. Each time I return to the faithful woman’s story, I find myself dwelling on the length of her illness, imagining the strain of the years spent in social and religious isolation. I am inspired by her faith and courage to seek out Jesus despite her status as unclean. As the story goes, after touching Jesus and being healed, the woman realized she could not hide. Trembling with fear, she fell at Jesus’ feet and told him the “whole truth” (Mark 5:33).2 We are not told what her story entailed or about her day-to-day experience living with a chronic illness, but we know that Jesus, surrounded by a pressing crowd, stopped and listened.
Narrative Medicine and Listening Better
Rita Charon, a physician and professor of medicine at Columbia University, defines narrative medicine as practicing medicine with “the capacity to recognize, absorb, metabolize, interpret, and be moved by stories of illness.”3 Research has shown that for clinicians who take the time to listen to patients’ stories and seek to understand the lived experience of illness, the results are strengthened therapeutic alliances with patients, a broadened ability to consider others’ perspectives, and more authentic use of self in the provision of care.4 The ability to take the time to listen, to sit with patients between the fear of the unknown and the hope of healing, is essential to meaningful patient care. If I am honest with myself, I became a MedFT out of a desire to do more. I prioritized advocacy and action, which are important, but I did not fully understand the power of stopping and listening until I met Maria.
Maria5 is a middle-aged Puerto Rican woman who came to me with a traumatic history, numerous chronic health issues, and symptoms of major depression with hallucinations. For the first few sessions, Maria barely spoke and cried the entire time. I did not know what to do, so I just sat there holding her hand. Soon Maria began to tell her story of trauma, suffering, loss, and hopelessness. She shared that she had never before sought consistent mental health treatment and had never told her story in its entirety. Her medical record accurately listed her diagnoses, but her story elucidated the persistence of her pain. She had been suffering alone in silence. After telling her story, she slowly became more active in her treatment, shared her story with her physicians, and saw improvement in many of her health issues. When asked to reflect on her improvement, she looked at me and said, “It’s because you listened.” Maria reminds me of the strength of the human spirit and the dignity we have in Christ. We all deserve to tell our stories and to have others listen.
We see many forms of healing in the life of Jesus. By the touch of his clothes, Jesus healed the bleeding woman. By listening to her story, Jesus healed. By the pronouncement of the woman as “daughter” and the acknowledgement of her faith, Jesus healed (Mark 5:34). God reminds us that our identity is not in our suffering but in our relationship with him through Christ. God calls us to journey together through suffering and honor one another’s dignity by listening. Perhaps this means speaking less, listening more, or changing the way we currently listen.
Over the years, I have learned to listen better. It has become clear to me that the power of a story is not its beginning or end, rather, it is in between. Families that I journey with do not expect me to cure their illness or alleviate their physical pain. Rather, they invite me to walk alongside their families through the crisis, chronic, and sometimes terminal phases of illness. They invite me to accompany them through the in-between of life with illness, through the highs and the lows, through the sorrow and the hope.
Resilience-Building Strategies
I have encountered the strength and resilience of families most vividly in the day-to-day moments of their life with illness. Recently, some families have told me that their strategies for enduring and maintaining hope have also proved helpful for surviving the challenges of the COVID-19 pandemic. Given the unpredictability and unknown length of the COVID-19 pandemic and the seasons of uncertainty that may follow it, I offer some strategies shared by patients living with chronic illness:
Practice rituals. Rituals help us to build shared meaning and identity. In families, they promote security and a sense of belonging, and transmit values across generations. In the day-to-day, rituals can bookmark the day and help us transition from one thing to the next. Intentionally connecting with loved ones (e.g., family meals), meditating, or lighting a candle provides continuity and grounding in the present.
Celebrate the small things. When every day is described as “unprecedented” and the future is unknown, completing the smallest task is a call for celebration. Find ways to celebrate and reward yourself when you accomplish something meaningful.
Laugh. As often as you can, find ways to relax and soothe tension through laughter.
Create a shared family narrative. Connect your history, memories, and experiences in a way that promotes your family identity separate from the circumstance. Take the time to talk as a family about the pandemic and its challenges. Give every family member the time and space to share how they are impacted. Then talk together about what it means to be a family and the values you hold outside of the current circumstances. It is important to acknowledge the demands of the pandemic and work together to place boundaries around it. Our challenges have meaning but they do not need to define us.
Make plans. Think about the future and allow yourself to dream. When the pandemic is over or when difficult circumstances alleviate, what would you like to do? Where would you like to go? Simply talking about the future reminds us that there is a future.
Stop and listen. Listen to yourself and your body. Listen to your loved ones. What stories do you have to tell?
Take the time to grieve. Many of the typical coping strategies and rituals surrounding grief have been disrupted. Take the time to acknowledge what you have lost and give yourself space to process and grieve the losses, big and small.
Ask for help. We have a tendency to disqualify our pain by comparing it to others’ suffering. There will always be someone suffering more than we are, but respecting others’ experience does not mean that you need to discount your own suffering. Take time to assess your own needs and ask for help.
We are not defined by illness or suffering. Between diagnosis and healing, between loneliness and belonging, between life and death—there is joy and hope found in the small things. God is not absent in the in-between. In fact, he is listening.
I love the Lord, because he has heard my voice and pleas for mercy. Because he inclined his ear to me, therefore I will call on him as long as I live. (Psalm 116:1–2)
Alison G. Wong is an assistant professor of marriage and family therapy. Her background and training are in Medical Family Therapy (MedFT), educating physicians and providing therapy for patients and their families in primary care. Prior to joining the Fuller faculty, Dr. Wong’s clinical work and research focused on families coping with cancer from diagnosis to survivorship, as well as families coping with end of life issues and bereavement. Her current research explores the lived experience of illness for couples and families. In addition to her faculty role, she serves as the director of research at Fuller Psychological and Family Services. She is a licensed marriage and family therapist (LMFT) in California and maintains a small private practice.
Chris Blumhofer, visiting assistant professor of New Testament, reflects on how Fuller—and other seminaries—being uniquely positioned between church and academy contributes to the flourishing of the church and its people.
