A Fate Less Than Death

After I had been in clinical practice for several years, I was asked to provide support to patients who were involved in treatment for infertility by a local center. As I began working with these clients, I became aware that many of them had endured months, sometimes years, of ongoing treatment, hoping for a baby and then having those hopes dashed when the treatments didn’t work. I noted that the language they used to describe their experience spoke of profound feelings of loss and grief. But, I also wondered, if they were grieving, who had died? After I devoted time and research to this topic, I came to the conclusion that their grief wasn’t related to who had died as much as what had been lost.

As clinicians, it is important to recognize grief in all of its forms and to understand how to facilitate the grieving process in our clients. In contrast to psychological disorders and disturbances, grief is basically an adaptive (albeit painful) process that allows us to heal after signifcant losses cause a tear in the fabric of our lives. Because of its adaptive function, the grieving process requires a diferent clinical approach than disorders that warrant therapeutic intervention.

Evolution of understandings about grief

Initially, research in bereavement focused on Bowlby’s (1969) description of the attachment system and the ethological/ instinctual basis for grief. Grief was seen as a form of separation distress that resulted from a broken attachment bond after the death of a loved one. However, recent research has demonstrated that bereaved individuals often maintain an ongoing, continuing bond with their deceased loved ones after their death (Klass, Silverman, & Nickman, 1996; Rubin & Schechter, 1997). It has become apparent that the grief response is more complex than simply a form of separation distress.

At a basic level, one’s expectations about how the world works begin to be formed from birth, through the development of the attachment relationships of the infant and young child. Bowlby (1969, 1973) posited that early-life attachment experiences lead individuals to form working models of the self and of the world. Parkes (1971) used the term assumptive world to describe the combination of these expectations and internal models.

Janoff-Bulmann (1992) described three categories of the assumptive world. Essentially, the assumptive world encompasses beliefs about the following:

1. How the world should work. For example, most people with relatively unremarkable childhoods in Western cultures tend to believe that the world is mostly benevolent, that there is more good than bad, and that people are generally trustworthy.

2. How people explain events that occur. This category emphasizes the ideas of justice and cause-and-effect relationships in certain aspects of life. This assumption often implies that we can directly control what happens to us through our own behavior. For example, it is common for people to assume that being a good person will afford protection from negative events, and the idea that you “get what you deserve”.

3. How we view ourselves and others. Typically, we are taught that human beings have intrinsic value and worth. We also learn about power dynamics in relationships and society, and our place within various social systems.

These fundamental assumptions about oneself, others, and how/why things happen allows for a feeling of safety and consistency as we navigate in the world around us (Janoff-Bulman, 1992; Rando, 2002). "ese same assumptions can be shattered by life experiences that do not fit into our view of ourselves and the world around us. Neimeyer et al. (2008) discuss events that “disrupt the significance of the coherence of one’s life narrative,” (p.30) and the potential for erosion of the individual’s life story and sense of self that may occur after such events. What is apparent is that the experience of a significant life event that does not fit into one’s beliefs can launch that individual into a state of significant disequilibrium. This discrepancy between how the world should work and the reality that it isn’t working in the way that was expected creates the need for some form of accommodation. Attig (1996) refers to this process as re-learning the world.

All significant loss experiences, death or non-death related, have the potential for an assault upon one’s assumptions about the world, and the process of adjusting to a world that is different from what had been thought or believed will involve a great expenditure of energy. This process of adjustment and accommodation is what we would refer to as grief (Harris, 2010).

Consider the following case:

Margaret, a 78-year-old woman, was diagnosed with dementia after her grown children noticed that she was becoming forgetful and confused. They realized that she was unable to continue to care for herself at home due to her forgetfulness and episodic confusion. Her family arranged for her to have assistance within her home, with meals being delivered to her daily, a housekeeper, and a personal care worker who would help her to bathe and do laundry three times a week. Margaret was able to cope with this assistance for a while, but she became suspicious of the helpers, accusing them of stealing things when she couldn’t find them. After two episodes where she wandered out of her house at night and got lost, the family decided that she needed a more supervised living arrangement, and she moved into a secured retirement residence.

Margaret continued to decline. Once a very fastidious woman, she lost the ability to control her bowels and bladder. She would sometimes have excrement on her clothing when she walked around the hallway, and she often looked unkempt. She would sometimes recognize her children and grandchildren and at other times she would not. Once very social and outgoing, Margaret became reclusive and quiet. She died three years after the dementia diagnosis was made. The family felt sadness when she died, but most felt that they had “lost” her a long time before she actually died. They realized that they had been grieving throughout the past three years for the loss of their mom, who was physically alive, but emotionally and cognitively absent from them. At the funeral, one of the daughters remarked, “I don’t know exactly when we lost Mom, but it wasn’t just last week when she died. I’ve been grieving her loss for a long time.”

And this one:

Angela was a competitive figure skater. She was told by her coach that she was a “gifted” skater and that she was destined for the Olympics. Angela’s life revolved around skating. She got up at 5 A.M. every morning to go to the arena to skate and she had training sessions with her coach 5 days a week. One evening, on the way home from a movie, Angela’s boyfriend (the driver of the car) hit a patch of ice on the road and lost control of the car. The car spun out of control and into a ditch. One of Angela’s legs was broken in several places. Angela went through surgery to repair the broken bones in her leg. However, there was permanent nerve damage. She experienced chronic pain from the injury and she could no longer skate. Despite extensive rehabilitation and physical therapy, she never regained full function of her lower leg. Angela’s life completely changed from that point forward. Despite support and encouragement from her family and friends, she knew that she would never be the same, and she felt lost because her life had centered upon her skating abilities and potential.

Many of the non-death losses that are experienced by individuals are very difficult to name, describe, or validate because there is no identifiable “death.” For many individuals, it may be unclear exactly what has been lost. "e loss may or may not involve a person and there may not be a defining experience to denote where the loss actually originates.

In her development and exploration of loss experiences where there was significant ambiguity, Boss (1999) first used the term, ambiguous loss. Ambiguous loss occurs when either a person is perceived as physically absent, but is psychologically present, or when a person is physically present, but psychologically absent, as in the scenario with Margaret. Ambiguous losses leave individuals with a sense of being “in limbo” as they struggle to live with the ambiguity and uncertainty.

Bruce and Schultz (2002) chose the term non-finite loss to describe a loss that retains a physical and/ or psychological presence with an individual in an ongoing manner. The scenario with Angela fits the description of a non-finite loss. Angela’s future is now completely different from what she had planned, and her life will never be the same as before. She will spend the rest of her life accommodating her injured leg and secondary life choices. Roos (2002) explored the concept of chronic sorrow as a response to losses that are ongoing in nature. In chronic sorrow, the grief is ongoing because the loss itself (along with continuous accommodation to the loss) is also ongoing. "is is an important distinction from descriptions of prolonged grief disorder or complicated grief.

Discussion

Significant losses, death or non-death, involve the shattering or crumbling of one’s assumptions about the world, causing us to feel deeply vulnerable and unsafe. The world that we once knew, the people upon whom we relied, and the previously held images and perceptions of ourselves and others are no longer relevant in light of what we have experienced. Certainly, the death of a loved one has great potential to cause such a disruption. However, other types of losses that may not involve death. At the core of all significant losses is the potential to lose our assumptive world, and there is support to suggest that this loss is the main overarching trigger for the grief response.

It is important to recognize the significance of these experiences, and to keep in mind the adaptive aspect of grief that facilitates accommodation in the majority of individuals. In general, grief is not something that requires treatment or intervention; rather, facilitation, support, and permission are more appropriate approaches. Too many clinicians assume that emotional distress means that they must intervene or treat the distress without realizing that doing so in this scenario may actually block the process and prevent the necessary adaptation from occurring.

Clinical Implications

Name, acknowledge, and validate the experience

Doka’s (1989; 2002) concept of disenfranchised grief is highly applicable to the exploration of grief after non-death losses, as the tendency to not recognize these losses leads to a propensity to deny their potential significance, or to not recognize the degree to which these losses can affect an individual. A social overtone of dismissiveness is common, and this lack of social support can stunt the adaptive aspects of the process. Loss, change, and transition are universal, but also very subjective experiences. Not everyone will perceive the same experience in the same way, so it is important to listen to the client’s interpretation and descriptions. The ability to name and describe an experience fully provides the opportunity to reflect and consider its implications for future choices and daily living.

Learn how to offer presence to grieving clients before jumping in to intervene

Clinicians need to be able to learn to bear witness to the grieving process and give permission for the process to unfold before attempting to intervene. "e need to grapple with life-altering loss experiences and to try to understand them (even if they initially seem beyond one’s ability to comprehend) is a key part of the human drive for understanding and meaning. Learning how to “be with” is much more productive here than trying to “do” something to intervene too early in a client’s process.

Be aware of the unique implications for certain types of losses

There are obvious differences between death-related and non-death-related losses, evident in Boss’(1999) descriptions of ambiguous loss and Roos’ (2002) elaboration of the concept of chronic sorrow. In situations of ambiguous or non-finite loss, there are seldom socially accepted rituals that provide acknowledgement or credence to the experience of an individual in the way a funeral might provide for a bereaved individual. "e absence of a body does not mean the absence of grief; however, without an overt or outward manifestation of the loss, the level of social recognition and support is often minimal or absent. "us, finding rituals for honoring these losses, normalizing the ongoing nature of grief when it accompanies losses that are ongoing in nature, and supporting clients as they search for meaning in these experiences should be the priority of the therapist (Boss, Roos, & Harris, 2011).

Cultivate awareness of your own loss experiences

Many of us have experienced significant losses that have shaped who we are and, perhaps, the career path we have chosen. While the concept of the wounded healer is valid in any profession where the therapeutic use of self is integral to the work, we are not immune to social pressure to conform to a “norm” that isn’t always realistic or healthy. It will be challenging to facilitate the grieving process wholeheartedly in our clients if we have difficulties recognizing and honoring its presence in ourselves. Cultivating a practice of compassionately attending to our own loss experiences and struggles allows us to more deeply appreciate and honor the grieving process in our clients.

Conclusion

Grieving individuals often have to struggle for validation and understanding of their experiences, and therapists need to adopt an inclusive and validating approach for clients with a broad range of grief responses. We serve our clients best if we can facilitate the process of meaning-making and rebuilding with clients whose loss experiences of all types have disrupted their assumptive world.

References

Attig, T. (1996). How we grieve: Re-learning the world. New York: Oxford.

Boss, P. (1999). Ambiguous loss. Cambridge, MA: Harvard University Press. Boss, P., Roos, S,. & Harris, D. (2011). Grief in the midst of ambiguity and uncertainty: An exploration of ambiguous loss and chronic sorrow. In R.A. Neiemeyer, D.L. Harris, H. R. Winokuer, & G.F. Thornton (Eds.). Grief and bereavement in contemporary society: Bridging research and practice. (pp. 163-176) New York: Routledge.

Bowlby, J. (1969). Attachment and loss: Attachment (Vol 1). London: Hogarth.

Bowlby, J. (1973). Attachment and loss: Separation (Vol 2). New York: Basic Books.

Bruce, E.J., & Schultz, C. L. (2001). Nonfinite loss and grief: A psychoeducational approach. Baltimore: Brooks.

Doka, K. J. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington, MA: Lexington Books.

Doka, K. J. (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Champaign, IL: Research Press.

Harris, D.L. (2010). Counting our losses: Reflecting on change, loss, and transition in everyday life. New York: Routledge.

Janoff-Bulman, R. (1992). Shattered assumptions: Towards a new psychology of trauma. New York: Free Press.

Klass, D., Silverman, P., & Nickman, S. (1996). Continuing bonds: New understandings of grief. New York: Taylor and Francis.

Neimeyer, R. A., Laurie, A., Mehta, T., Hardison, H., & Currier, J. M. (2008). Lessons of loss: Meaning-making in bereaved college students. In H. Servaty-Seib and D.Taub (Eds.), Assisting bereaved college students (pp.27-39). San Francisco: Jossey-Bass.

Parkes, C. M. (1971). Psycho-social transitions: A field for study. Social Science & Medicine, 5, 101-115.

Rando, T. A. (2002). The “curse” of too good a childhood. In In J. Kauffman (Ed.), Loss of the assumptive world (pp.171-192). New York: Brunner-Routlege.

Roos, S. (2002). Chronic sorrow: A living loss. New York: Brunner-Routledge.

Rubin, S.S., & Schechter, N. (1997). Exploring the social construction of bereavement: Perceptions of Adjustment and Recovery in Bereaved Men. American Journal of Orthopsychiatry, 67: 279–289.

Darcy L. Harris, Ph.D., FT, is an Associate Professor and Thanatology Coordinator at King’s University College at Western University in London, Ontario, Canada. In addition to her academic work, Dr. Harris has a private therapy practice and she is a presenter and an author on topics related to grief and loss.