Chronic Illness and Ambiguous Loss

Source: Katie Willard Virant

“How am I supposed to grieve properly when the losses keep happening?” Nadine, a woman living with chronic Lyme Disease, looks at me through the computer screen, pleading for an answer. “It’s like one step forward and two steps back with this illness. Just when I get some hope that things are getting better—WHAM—the rug gets pulled out from under me again.”

Sound familiar? We know that grieving loss (including the losses caused by chronic illness) is necessary for optimal mental health: We know that it’s important to wrestle with the reality of the losses we’ve experienced, integrate them into our self-concept, and find a way to sustain meaning as we move forward. But what happens when the loss experienced doesn’t have a trajectory with a beginning, middle, and end? What happens when we are muddling along for years, decades, even a lifetime, grappling with a loss that ebbs and flows?

Pauline Boss (2002) coined the term “ambiguous loss” to address the dilemma that Nadine is experiencing. The difficulty of predicting the course of illness—the impossibility of knowing what will happen and when—creates “an emotional roller coaster between hope and hopelessness (Boss & Couden, 2002).” Symptoms fluctuate wildly, week to week, day to day, even hour to hour, creating bewilderment, terror, and anger. Identity is constantly shifting: Am I sick? Am I well? What can I accomplish today? Will I retain that same capacity tomorrow?

Boss & Couden (2002) outline five reasons why illness ambiguity is psychologically difficult. First, ambiguity surrounding illness creates confusion. Am I sick or am I well? How will symptoms appear today and how will they affect my goals, relationships and self-concept? Second, ambiguity prevents reorganization of roles. Can I work a job? Take care of children? Which household responsibilities can I manage such that my family can rely on me? Third, ambiguity prevents validation of loss. Especially with an invisible illness, there may be a questioning of whether feelings of grief, anger and sorrow are justifiable. Fourth, illness ambiguity creates a crisis of meaning. Is the world fair and just? Why do bad things happen to good people? Fifth, the lengthy duration of illness ambiguity is exhausting for the individual and her family. It does not go away; rather, its presence is ongoing.

So what do we do about it? According to Boss & Couden (2002), we address it head-on. We name what we are experiencing as ambiguous loss and we validate that coping with ambiguous loss is inherently difficult. We grieve that we have lost certainty in our body’s functioning. We grieve that this loss of certainty affects everything: our relationships, our activities, our livelihoods, our current and future prospects, our selfhood.

Grieving this loss of certainty involves putting into words what we have lost. “It makes me sad when I can’t keep up with my children playing.” "I get frustrated when am I too sick to go to work.” “I am scared my friends will tire of me cancelling plans due to my illness.” “I’m worn out with worrying about how my illness will progress.”

Grieving is not just intra-psychic; it also involves family and close friends. They, too, are affected by the ambiguous loss created by their loved one’s illness. “When illness cannot be cured, people must simultaneously hold two opposing ideas in their minds: ‘The person as she or he was is gone; but that person is still here and in my life.’" (Boss & Couden, 2002). For the ill person and her family, then, two tasks emerge: to grieve the life that illness has taken away, and to enjoy the life that still continues.

It can be challenging to hold two opposing ideas in our minds. “There are ways in which I am limited, and ways in which I am free.” “I grieve, and I hope.” “There are parts of myself that are forever gone; there are parts of myself that I am still discovering.” “I am sick, and I am well.” Practicing this skill involves slowing down our bodies and minds, attending to the present moment, and sitting with the “both/and” nature of reality.

Many of us have had moments—sometimes in nature, sometimes with loved ones—where we feel a sense of wholeness in which contradictions intuitively make sense. We may have sat by the ocean and felt simultaneously the vastness and intimacy of life. We may have watched our children play and felt both happy and sad about the march of time. We can bring this sensibility to our experience with illness by turning an observing eye and open mind to our bodies. What have we lost and, as importantly, what do we maintain? Perhaps walking is difficult, but we continue to deeply love listening to music. The pleasure we receive from music in no way compensates for or lessens the pain of limited mobility. Yet grief and joy can co-exist.

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Christina Crobsy, a feminist scholar who wrote about her life after a serious biking accident, stated: “I am no longer what I once was—yet come to think of it, neither are you. All of us who live on are not what we were, but are becoming, always becoming.” Here’s to both marking what is gone and also embracing who we are becoming. Here’s to the contradictory multiplicities of our lives.