Coping with the Diagnosis of a Long Term or Terminal Illness
The experience of the pandemic over the last couple of years has given us all a fresh perspective on individual and community health. Many families have experienced loss as someone they know and love has been impacted by illness. However, the effects of the devastation of long-term or terminal physical illness on families has been present longer than just the last couple of years. Receiving the diagnosis of a life-threatening illness can be life-changing. It alters the way people see the world, their future, and their legacy. According to Doka (1), “many psychologists emphasize that a diagnosis of life-threatening illness is second in causing stress only to the knowledge of dying itself” (1, p. 136). A life-threatening diagnosis not only affects our individual physical, emotional, and psychological well-being, but it also has an affect on our families and communities.
Impact of a diagnosis
A physical health diagnosis alone has a tremendous impact on the individual being diagnosed. It is important to note that the cause, course, and prognosis of a diagnosis is different for everyone and is influenced by many factors (1). “The experience of a life-threatening illness is one of the most difficult situations that individuals and their families ever have to face (1, p. 2). However, the impact of a diagnosis is not a one-time experience. Rather, it unfolds over time as an individual undergoes multiple tests, procedures, and changes in prognosis. (1). These constant changes are covered in a blanket of uncertainty. There is no shortage of anxiety and strong emotional reactions when an individual encounters the intense crisis of a life-threatening diagnosis.
The associated feelings of anxiety
Anxiety is a very common response when encountering the crisis of a life-threatening diagnosis and can certainly be a traumatic experience for the individual and family. According to Wright (3), “trauma is a response to any event that shatters your safe world” (3, p. 164). Prior to the diagnosis, one may consider themselves strong, controlled, and prepared (i.e., life may feel relatively predictable). Upon entering the world of uncertainty regarding one’s health and outcomes, it is common for an individual to experience the weight of anxiety.
Alongside anxiety comes the overarching experience of grief. Grief, as we know, is a response to any kind of loss. It is important for an individual to recognize that anxiety, along with a roller-coasting of accompanying emotions, are prevalent at every phase of the life-threatening illness (1, p. 183). From the time of diagnosis to surgeries, procedures, treatments, and remission, an individual may experience various forms of loss (1, p. 183). These kinds of losses may include life’s normalcy prior to the diagnosis, physical abilities, employment, expectations, dreams, relationships, or autonomy. A grieving heart has the capacity to feel a variety of emotions at one time.
Affects on the family
A life-threatening diagnosis not only impacts the individual, but it also affects the family system. Family member roles begin to shift as each member adapts to the news and prognosis of the diagnosis. Some members take on a new role such as a caregiver, while others may spend time researching and advocating for their loved one as they navigate procedures, doctors, and treatments (1, p. 232). There are various demands, responsibilities, and stressors that the family unit is now learning to navigate as they walk this new road.
According to Doka (1), “generally, the crisis of a diagnosis is at a time when interaction and communication among family members is high” (1, p. 232). However, those who are experiencing this crisis at a young age may have difficulty communicating what they are feeling throughout this process. Below are some helpful ways parents and caregivers can connect with their kids who are walking the journey personally or who have a family member experiencing a life-threatening illness:
- Feelings Check: Ask the child to share how much of an emotion they are feeling (1).
- 5 Faces Technique: Draw faces on cards (sad, mad, fear, hurt, happy, lonely, etc.) and have the child pick out a face that they feel, when and where (in their body) they felt it (1).
- Show Me: Ask the child to show you what their face looks like when they are mad, happy, sad, etc. This gives the child permission to express emotion (1).
Maximizing support and minimizing isolation
It is common for families to receive an abundance of support upon the time of diagnosis. (1, p. 174). However, as the separation of work and recreational roles tends to shift throughout the journey of a life-threatening illness, isolation can be commonly experienced. It is vital for families experiencing a diagnosis to remain connected to others. As humans, we were made for relationships. Wilder (2) states, “joyful interactions help our brain develop relational capacity and learn to recover from difficult emotions” (2, p. 40) While relational support helps our brains recover from distressing emotions, it is vital for the family undergoing this crisis to trust and lean into their support as much as possible. Trusting your support can alleviate the many burdens one may carry when walking through a life-threatening diagnosis.
If you are one who is caring for an individual or family walking the road of a life-threatening illness, I encourage you to offer the gift of your presence. Without the need to fix the situation, individuals can join those experiencing it, intentionally listening to their heart’s distress. Norman H. Wright (3) considers this kind of listening as nurturing listening, which is when an individual listens for the emotional context behind the message that is being shared. “It extends a warm invitation to the griever to share deepest joys, concerns, or hurts with you” (p. 197). Individuals and families who are experiencing a life-threatening illness undergo a variety of changes and experience an array of emotions. I hope this awareness provides an opportunity for you to connect with others walking this journey or encourages you as you courageously fight this battle.
- Doka, K. J. (2013). Counseling Individuals with Life Threatening Illness, Second Edition. Springer Publishing.
- Wilder, J. E. (2014). Joy Starts Here: The Transformation Zone. Shepherd’s House, Incorporated.
- Wright, N. H. (2006). Recovering from Losses in Life. Revell.