Article by Carol Jaquith
The onset of any serious illness can be like a tidal wave. When illness turns chronic, it can threaten to overwhelm you with wave after wave of loss and grief. .
Elizabeth Kubler-Ross, in her book On Death and Dying, and in her work with terminally ill patients popularized the notion that dealing with any loss comes in stages of denial, anger, bargaining, depression and finally acceptance..
I have churned within these stages of grief since my doctor diagnosed me with Chronic Fatigue Syndrome some twenty years ago. At first it was like a giant tsunami threatening to overwhelm me. Denial, anger, bargaining and depression all came so fast and so repetitious that settling into denial or anger was almost merciful. Ignoring it or being angry about it was better than believing this was to become my life.
Denial felt like holding my breath while jumping under a big wave in the ocean, one can ignore there is turbulence going on above you. Denial made me try to pass as “normal,” and has kept me from getting the support I need. Denial may be helpful in the beginning when one can’t possibly understand the ramifications to one’s life when a doctors states, “You will always have some degree of this.” Denial only lasts so long before one realizes it isn’t helping, as I am flung back into the next wave of symptoms.
Anger is an easy place to get stuck in. Who wouldn’t be angry when their identity as a healthy productive person has been threatened? Who wouldn’t be angry when their ability to support themselves has been diminished? Who wouldn’t be angry as in the case of Chronic Fatigue Syndrome most doctors don’t understand it or worse yet, don’t believe it? Who wouldn’t be angry when in a country where we pride ourselves on good medical care, you are treated like a guinea pig, misunderstood, or considered mentally ill? Anger needs an outlet, or it will spill over on those around us, or be turned inward on ourselves. If not dealt with it has the potential of sucking one down, like a whirlpool.
When anger isn’t expressed or resolved, it can turn into depression. I have found that Chronic Fatigue Syndrome, while not a clinical “depression,” has two depressive components to it; the first is an overlay depression that comes with the helplessness and hopelessness of many chronic illnesses and the second is an “organic” depression that seems to wax and wane with other symptoms.
.Bargaining may be a motivator. I became an herbalist and naturopath as a kind of bargain. Reasoning that I would learn all about natural healing techniques, I would cure myself and teach others. Did it work? Not to the degree I thought it would. It did help me have a better quality of life, but at some point, I had to admit that I didn’t have the energy to market myself, conduct a business, or allow me to pursue a career. The realization flung me back into depression. Bargaining almost always leads at some point to having to regroup when the “bargain” doesn’t work. The regrouping may lead to another round of cycling through the stages of grief, or it can be a step toward acceptance.
The final stage of grieving is acceptance. Acceptance as defined by Webster’s dictionary is the willingness to accept something willingly or gladly. In the case of a death, for example, acceptance can mean closure as we realize the loved person is truly gone. We adapt and move on with our lives. What does acceptance mean for someone facing his or her own death, a resignation? Would resignation be a better word for the end stages of grief? Webster tells us that to be resigned means to give over or submit.
In situations of loss due to illness, the type of infirmity itself may contribute to staying in one particular stage of grief, or may help you move on. If it is an acute illness, such as the loss of a limb, there are always day-to-day reminders. In illness where there are no symptoms, such at diabetes or high blood pressure, denial may come easily. I don’t feel sick, therefore how could I be?
In people with “invisible chronic illness” such as Arthritis, Chronic Fatigue Immune Dysfunction Syndrome, MS or Fibromyalgia, the process of moving along through these stages of grief is complicated by the never-ending exacerbating/remitting symptoms. Denial is easy on the good days, but fear and anger resurface with relapses. The very nature of the illness may work against gaining “acceptance”. You have to become an expert at managing your good days and nurturing yourself on the bad. To do this effectively, you have to develop some degree of acceptance, even though embracing acceptance may feel like giving up.
“Acceptance isn’t a destination, it is an ever-challenging process,” Donoghue and Siegel state in their book, Sick and Tired of Being Sick and Tired. “True acceptance never means giving up. Viewing the illness and your life as a process allows you to find ways to live life as fully as possible despite the illness. It takes knowing yourself, the courage to act on that information, and redefining your life on a day-to-day (some days minute to minute) basis. It is accepting those limits for today, always with hope. It takes enormous courage and patience” (p xiv – xv)..
They explain that going through these stages is normal, and returning to them from time to time is inevitable. Be gentle with yourself and don’t give up. Living with chronic illness is hard at best, but harder still if we let ourselves drown in denial, anger, bargaining fear, or let it break our spirits.
Returning to acceptance, just for today, is like finding a life raft that flows with the river of life instead of being tossed around in a sea of confusion. Acceptance lets me embrace and reinvents a new reality.
I remember a vacation we took years ago to Lake Champlain in Vermont. We rented a houseboat and for a week enjoyed sailing around a very large lake that looks on the map like a key. We were warned we were not to go into the top part of the key as the winds and turbulence could be too much for a houseboat if a storm came up. One rainy day after exploring one of the rivers that flowed into the Lake, we rounded the bend near the dangerous part of the lake only to find the storm was raging on the lake. Wind and ocean sized waves gave us a scary, bumpy ride as we fought our way up along the coast to a safe cove. It was a tense ride but we pulled into a peaceful sheltered cove where with relief we waited for the weather to get better.
Whenever I can accept or submit to my situation, I feel I have floated into a peaceful cove, like that day long ago. Acceptance helps me rest out of the fog of denial, the rage of anger, the turbulence of denial, and black murkiness of depression into a place where I can grow and thrive if not physically, then at least spiritually.
Kubler-Ross, once said at a lecture, “If you reject any aspect of life, you reject reality and you reject God! The path of illumination is simple awareness of, and acceptance of, what is. This path leads to transformation of the self, which leads to new awareness, which – once embraced – transforms our perceptions in an ever-expanding upward spiral of spiritual evolution toward infinite, unconditional love.” (Macinerney, p. 2)
Donoghue, Paul J. PhD. and Mary E. Siegel, PhD. Sick and Tired of Feeling Sick and Tired. New York, New York: W.W. Norton and Co., 2000.
The Kubler-Ross grief cycle. Retrieved December 10, 2006. from Changing Minds.
Macinerney, Charles “Silver Linings.” Yoga Articles and Essays, Fall, 1998. Retrieved December 20, 2006, from Yoga Articles and Essays. http://yogateacher.com/text/essays/fall1998.html
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