Now I am going to put on my clinician hat, as well as my personal one, as we discuss theories about death and dying. The most popular one, developed by Elizabeth Kubler-Ross described 5 Stages of Grief: denial, anger, bargaining, depression, and acceptance. This model has been adapted and applied to any number of scenarios and situations, not just for those who are dying. Some of her detractors suggest that she is wrong because the “grieving process” can’t begin until after all of these stages have been worked through.
Kubler-Ross developed her theory after interviewing myriads of people in hospice care and others who had been diagnosed with terminal illnesses. While she did modify her theory over time to account for people moving back and forth between stages, I suggest that it nowhere near encompasses the myriad of emotions that a person who is going through this experiences.
From a clinician perspective, using this model can be limiting, if the therapist focuses on helping a client work through these stages alone. It could limit their openness to addressing and inviting additional emotional responses and wrongly promote a client’s progress through these stages as successful resolution of their issues.
From a personal perspective, as I noted above, there are so many more emotions that a person goes through (as well as the returning to previous ones that Kubler-Ross acknowledged). I will work through each one in sequence.
Denial: This was not really a first stage for me, it was more shock and disbelief, as if time stood still, with the whole future hopes and dreams crushed. It was like a floating balloon had been popped, now lying flat and useless. In my case, I was never really in denial, as I had spent a considerable amount of time researching my symptoms and knew the diagnosis to be accurate. Perhaps this allowed me to avoid this stage.
Anger: This is one that I return to over time, railing at the injustice and “unfairness” of this happening to me. In my case, it is a questioning of what I did wrong, what I could have/should have done differently with regard to my physical health. At its worst, it is the “why?” question, which has no answer, which tends to happen when I am experiencing either physical difficulties or am at an emotional low. I don’t know that this “stage” or emotion will ever go away, so it would be impossible to progress forward if it was required to work past it in order to achieve “resolution”.
Bargaining: I have no belief in a higher power, so have no one to bargain with for more time. How I see this applying to me (and it happened from the moment I found out about the diagnosis) is that I was researching new and existing treatments, clinical trials, and healthy ways to prolong my life as much as possible. This is an ongoing process for me, something that I will continue to do as long as I live.
Depression: Well, that’s a tough one to ever get out of, when facing one’s own imminent demise. People may experience it at varying levels, but from my experience, it underlies everything and is consistently under the surface. Don’t get me wrong, there are still wonderful moments in life (maybe cherished even more now, knowing that they may be the last), but there is still the shadow of death that permeates everything. Even after enjoying a peak life experience, I still catch my breath when I remind myself of my diagnosis. Is it truly to the extent of a “depression”? For me, probably not. Using psychological terms, it would be more of a “dysthymia”, a low-level depression that persists, making the “ups” less high and the “downs” sometimes more transitory or sometimes even lower.
Acceptance: This word to me means giving in, which I never will. If it is acceptance of the diagnosis, fine, but if it is acceptance of my fate without doing everything I can to keep myself going for longer, never.
Overall, I agree with those who say that grieving continues, but in a different way than grieving for the loss of a loved one (as I have discussed before). When you are living with it, in it, I do not see that the grief at lost time for the future and at missed opportunities in the past can go away. I don’t mean it to be debilitating grief, but rather a sadness or wistfulness.
The most important point that I want to make is that there is no way to track each individual person’s experience of dying via any stage theory. We are all different, with varying life experiences and personalities, varying levels of support systems, different symptoms and stages of our disease processes. The sciences have a tendency to like to compartmentalize/stage steps in experiences, which makes for easier understanding but I do not see it as helpful in this regard, either from a clinical or personal perspective. Such oversimplification minimizes the extent and variety of individual experience.