With loss comes grief. The stages of grief were first described by Elisabeth Kubler-Ross in reference to grief while facing death. Dr. Kubler-Ross described five stages that people commonly go through in their grieving process, including denial, anger, bargaining, depression, and acceptance. Over time, researchers found that these stages also apply to other types of significant loss, including chronic illness.
Although these stages look nice and neat on paper, human emotions are messy. Researchers have also found that people do not necessarily move through these stages in an orderly, linear fashion. Instead, they may bounce back and forth between stages. Even after reaching acceptance, new circumstances may lead a person back through one or more of the early stages. Each new loss may come with new mourning, and these stages may reoccur.
When I first received a diagnosis with a neuromuscular disease, I went through a variety of emotions. Looking back, I recognize these emotions as part of the grieving process.
My first reaction was shock and denial. Looking back, I find it hard to believe how surprised I was to learn that something was actually wrong. I had been experiencing a variety of symptoms for some time. Still, I apparently believed that my neurologist would tell me that I was imagining my difficulties or that I had something minor and easily treated and cured. Even months later, I sometimes tried to convince myself that I had somehow misunderstood my physician and that my health issues would somehow disappear.
Later, I experienced anger. I felt that my body had betrayed me. Why should I have these health problems when Iíve always taken reasonably good care of myself? It did not seem fair. Sometimes, I even felt angry at G-d. Why me? Why do I have to have this disease? These thoughts sometimes led me right into the next stage.
During the bargaining stage, I read everything that I could find about Charcot Marie Tooth (CMT). Surely there was a cure that my physician had overlooked, or if not a cure, a treatment. Or, maybe I had something else, some other health problem that could be easily treated and cured.
By nature, I tend towards happiness, and had not experienced depression. Feelings of sadness and hopelessness surprised me. I had days when I cried, and other days when the tears felt very close to the surface. This type of depression, however, is a normal response to loss, and part of the grieving process.
Experiencing the above stages, prayer, journaling about my experiences and feelings to process my emotions, and receiving support from my friends and family helped me to move into the stage of acceptance. Other people will find other methods for moving through these stages. For some people, counseling may be an important part of reaching acceptance.
Acceptance does not mean denying the loss, but means learning to integrate loss into oneís life and moving forward in positive ways. I came to understand that CMT will cause loss, but that this would now be part of my life path. I cannot change this diagnosis, but what I do, think, and feel can change how I cope with neuromuscular disease. Ultimately, I need to find meaning and purpose.
Even after reaching a level of acceptance, health changes sent me back to experience the stages of grief once more. Each time I find a new limitation, I will likely feel grief. Over time, I expect that these fluctuations will grow shorter and more manageable.
Through understanding these five stages of grief, one can come to a better understanding of loss and coping with a diagnosis of neuromuscular disease.
Kubler-Ross, E., and Kessler, D., (2005). On Grief and Grieving. Scribner: New York, NY.
Lorig, K., et al., (2006). Living a Healthy Life with Chronic Conditions (Third Edition). Bull Publishing Co.: Boulder, CO.