When I looked into my loved one’s eyes during one of her first manic episodes, I did not recognize the eyes staring back at me. Equally heartbreakingly, I felt that she did not recognize me. And so it began: a cycle of highs and extreme lows, agitation and depression, characteristic of bipolar disorder. While bipolar disorder affects each person differently, in her case, the depression has often lasted longer than the manic state, sometimes lasting years. During these polarized periods, one of the hardest parts was the feeling that “she” was lost to me – she whose counsel I trusted and valued so much, and she to whom I could be my most honest and vulnerable self. The person who replaced her in these periods was either highly agitated and manic, or depressed and despondent – unable to provide the type of support or nurturance I might be craving. In those periods, though she was still there in her body, I could not expect much from her – it was all she could do to keep her own spirit alive or stable and had little to give anyone else. And though I understood this on an intellectual level, it was hard to escape the mixed feelings of sadness, helplessness, disappointment, and frustration.
It wasn’t until years later that I was finally able to put a name to this feeling: ambiguous loss, a term coined by the social scientist Dr. Pauline Boss in the 1970s. Ambiguous loss refers to losses that do not have the type of clarity and finality that an unambiguous loss like death has. Ambiguous loss lacks closure and results in grief that is unresolved and confusing. According to Boss, there are two main types of ambiguous loss. The first is physical absence with psychological presence. This may include a missing person due to abduction, war, or natural disaster. The second type is physical presence with psychological absence. This may include losing someone to Alzheimer’s disease, dementia, addiction, or severe mental illness. Something like divorce can also result in ambiguous loss, where the family unit that once was is no longer.
Frozen grief: “leaving without goodbye” and “goodbye without leaving”
A loss of any kind can be hard, but Boss contends that ambiguous loss can be particularly challenging because of its lack of closure and resolution. For example, in the case of a missing person, those left behind may feel like they must make the excruciating choice of either living in a state of perpetual uncertainty but holding onto hope, or deciding to inject some resolution by mourning and attempting to move on. Everyone will respond differently to such ambiguous loss and everyone must find a way to cope in a way that makes sense for them. Regardless, the overarching uncertainty of the situation often leads to prolonged grief and feelings of anxiety and helplessness. Boss calls this “frozen grief” and highlights the pain behind “leaving without goodbye” (as in the case of missing persons) and “goodbye without leaving” (as in the case of losing someone to a condition like dementia).
How to cope: revising expectations and adjusting to a new reality
So how can we cope with ambiguous loss? Boss recommends naming the ambiguous loss and labeling the situation as such as a first step in acknowledging and validating the experience and the associated host of feelings. She also encourages people to find ways to live with the uncertainty and the changes brought on by the loss by revising your own expectations to reflect the new reality (as opposed to being in denial). For example, the wife of a formerly active husband who has been diagnosed with Alzeheimer’s disease may now have to revise her expectations that they will continue to live the active lifestyle they had grown accustomed to, filled with outdoor activities and travels. She may have to learn to revise her expectations that though they may be able to enjoy some quiet moments together she would have to fulfill her needs for the outdoors and social engagement in a new way – by perhaps dedicating a day in the week where she can take part in such activities while her husband is in the care of someone else.
As she grows into the new reality, she can hopefully find moments of joy and hope in this new phase of her life. This may take time and grieving of what once was – and that is absolutely to be expected. The key will be to learn to not only accept the uncertainty but also be able to take empowered action so that her focus shifts away from the uncertain aspects in her life (for example the progression of the disease) to aspects that are within her control (for example how she chooses to take care of herself or the support system she creates for herself). The support system she builds may include support groups of people going through similar experiences, friends, family, and/or a therapist, who can help her work through the range of emotions she is likely to experience. In my practice, I work with grief – ambiguous and unambiguous – as it impacts not only individuals but also in couples and families.
Any loss, ambiguous or unambiguous, can be traumatic. As the preeminent trauma researcher and psychologist Peter Levine has said: trauma is not what happens to us but what happens inside of us in the absence of an empathetic witness – and a support system can serve as that empathetic witness.
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