Reality, Hope, & Denial
Hope was the first thing I noticed when, in college, I volunteered at a camp that served adolescents and young adults who were diagnosed with cancer. I walked in expecting to see, at best, moderated sadness, or at worst, utter despair. To me, these seemed like normal responses to a diagnosis of cancer at such a young age. Instead, I was surprised by hope. The campers I met were, on the whole, optimistic about their futures and wore bright smiles most of the day. At times, I was inspired by their joy. In other moments, I felt their hope looked a lot like denial. As I have continued my career working with children and adolescents who have life-threatening or life-limiting conditions, I have become better acquainted with hope and denial and come to realise that there is, indeed, a fine balance of both that is needed to survive the uncertainty associated with serious illness.
For this article, I will call reality the objective sense of what actually is the diagnosis, prognosis, and treatment of a disease. (My social construction leanings are well aware that even that reality is subjective, but let’s just leave it at this meaning for now.) Hope is beautifully simple and complex all at the same time. While hope is grounded in an array of values and beliefs and comes in many forms, it is mainly a sense of optimism. This optimism helps a patient or family member cope with the seriousness of their reality. Hope is an adaptive behaviour to have in the face of a challenge.
The relationship between hope and denial is a delicate one.
Denial, on the other hand, has a pathological connotation and is understood as hope gone dangerously awry. An individual or family are “in denial” when they are defensive to hearing new information, become increasingly defensive upon hearing bad news, and begin to block out all new information, which then interferes with proper decision-making and coping with the reality of the situation. Whereas most people would typically agree that hope should be supported when coping with a medical illness, I find that once a patient is labelled as “in denial” their concerns are more often dismissed and we begin to shut out our understanding of and appreciation for the reasons why a patient or family member is not accepting their painful reality. When we consider a person in denial we may very well stop being curious about their situation which severely impacts our capacity to help.
Hope and denial are both normal reactions to a stressful and terrifying diagnosis, and both states of being may actually be necessary and helpful for patients and family members as they face a chronic or critical illness through its various stages and developments. While hope can go too far and lead to unrealistic optimism (which we label denial), this perspective can also lend itself to reducing the terror and excruciating pain associated with the potential loss that is at stake with a serious illness. It is normal to resist bad news, to not want to integrate the new information.
We all have experienced moments of denial when we encounter situations that we want to desperately escape from in our own lives. While I am not espousing that we allow denial to run rampant, I do suggest that we reconsider the role denial plays in a patient and family’s coping process and ask ourselves a few questions. Are we witnessing a family that is still holding on to hope as a positive coping strategy? Does the patient or family have the same understanding of the medical information or experience we are privileged to hold? Have we considered what could result if the family did fully accept their condition and understand the role denial is playing for them? Do we respect that different people need different amounts of time to integrate difficult news? Have we considered how our communication with the family could be influencing their response?
Overall, I have learned that the relationship between hope and denial is a delicate one. When I am tempted to say someone is “in denial” it now triggers me to further ponder the impact that acceptance of their reality would have on themselves and their loved ones which allows me to see more clearly why they are holding onto hope for dear life.
Jackie Williams Reade, PhD is a Postdoctoral Fellow at Johns Hopkins University in Baltimore, MD. She received her Master’s in MFT from Seattle Pacific University and her PhD in Medical Family Therapy at East Carolina University. She is also the administrator of the Medical Family Therapy Group on Facebook.
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