Living with Chronic Loss
Jan Santora-Farrar, MA, LMHC
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I’ve been a psychotherapist for over 30 years. As a result of seeing behavior patterns in clients who suffer such living losses as described in this paper, I have developed the concept of Chronic Loss (CL). It is defined as the pattern of suffering either with the loss of a living person through a means other than death, or the loss of a part of oneself.
As Mikela* and I met for our last therapy session, I couldn’t help but admire the courage it had taken her to do her healing work. The journey from being sexually assaulted by a trusted mentor to regaining her confidence and poise was remarkable. We had chosen to do Brainspotting (BSP)* to work with her PTSD diagnosis. After meeting weekly for a while, her symptoms faded entirely. We also addressed other presenting issues once the trauma was processed. Mikela explained her therapy experience: “When I first came to see you, I felt broken and ashamed from the rape. I had trusted this man whom I thought was a friend and his betrayal shattered me on every level. Though I know I’ll remember the assault forever, I’m no longer tied to it with negative emotions. In fact, I feel empowered by healing that trauma and no one can take that away from me!” The assault altered her innocence, trust, and safety among other things. Mikela lives with that chronic loss every day. However, it no longer limits her ability to have a rich and fulfilling life.
I have also conceptualized a Chronic Loss Syndrome (CLS) for people who have difficulty moving on. It is meant as a useful tool to help healing, not as a diagnosis of pathology. Most everyone has experienced some form of Chronic Loss. But in western culture, there is a social pressure for the griever to grieve quickly and get it over with. This pressure can actually halt the processing of grief. Naming CLS helps people feel acknowledged and recognized.
Criteria for Chronic Loss Syndrome:
- An unexpected traumatic loss event or experience occurs:
A discrete, contained event or the slow demise of a relationship - The magnitude of loss is not acknowledged by others:
Often the loss is invisible as in cases of chronic illness or pain - The loss is ongoing:
A missing loved one is never found - Feelings of powerlessness, loss of control, and
- Recurrent self-doubt, sorrow, and
- Actual isolation or feelings of being cut off by the mainstream. We may feel judged, or people don’t know what to say
- Struggles with managing the loss:
Old coping skills may not work: e.g., drinking alcohol to numb the pain - There is no foreseeable closure.
Some examples of Chronic Loss:
Pandemic
Missing child
Adoption
Foster care
Addiction
Military MIA
Immigration
Infertility
Bullying or Coercive control
Gender transitioning
Estrangement or any type of forced separation
Acts of bigotry, discrimination, micro- and macro-aggressions
Chronic illness and pain
Traumatic brain injury Stroke
Molestation, rape, and other violent crimes
My Research:
Years ago, I did a research study with Dr. Pam Hays which was published in WOMEN AND THERAPY (1998). The article is called “Coping Outside Traditional Roles: The Case of Noncustodial Mothers and Implications for Therapy.” Although the article was written for therapists, the results apply to anyone. The study confirmed that noncustodial mothering is highly stressful because of negative social attitudes toward moms who do not live with their children.
However, the findings were that even with that stress, most women were able to function across social and work domains. The implications are that the problem (chronic loss of living children) is most likely one of distress and not pathological.
Therapists should be careful diagnosing women in chronic and multiple loss situations such as non-custody. If clients are not getting better, therapists need to check for Chronic Loss in their lives.
Living With Chronic Loss Syndrome:
Living with CL is different for everyone according to personality, coping skills developed in family- of-origin, attachment style, community type, trauma history, types of resilience, and so much more. Here are just a few ideas that are helpful. For more clarity, the following ways of coping are listed in accordance with the CLS criteria earlier in this article.
- An unexpected traumatic loss event or experience.
We recognize that something has happened or is happening outside our control. Naming this helps normalize ongoing grief. It helps us feel less isolated and more acknowledged so we can spend less time seeking validation and more time coping with our situation.
- Magnitude of loss is not acknowledged by others.
Being with folks who experience our kind of CL (for instance, partners of people with Parkinson’s disease) is a comfort because we don’t have to start at square one explaining our feelings about what’s happening. Finding (or creating) a support group is invaluable.
For several years after I did the research referenced above, I facilitated free or low- cost noncustodial groups across Seattle. The groups focused on healthy coping skills like self-care, how to survive not living with their children, coping with grief and loss of dreams, strategies for making the most of their time with children during visits, creating memorabilia and journals for children to have later, navigating the legal system, dealing with coercive control by the children’s other parent, exploring role vs identity, and much more. We created curriculum together as we went along. Some of these mothers are still in contact with each other.
Attending 12-step meetings can also be helpful for mutual mental, emotional, and spiritual support.
- The loss is ongoing.
The nature of CL is that it’s ongoing and cyclical. It may help to imagine the cycle like this: Loss situation = continuous triggers = re-experience of original loss situation. It’s like being an emotional nomad. Triggers can look like the anniversary of the event, songs, places, people, even commercials on TV. It can feel like we are experiencing the original loss again and again.
We can take control by deciding what’s triggering for us and how we will cope when it happens. Coping with CL requires continual adjustment, managing adversity, asking for help, self-care, and self-compassion. We can build our own safety plan by creating a list of examples of each trigger and what is most helpful for us when it happens. By doing this, we are being proactive in establishing our safety plan for handling the inevitability of triggers.
- Feelings of powerlessness, loss of control, and anxiety.
In most CL situations, we really have lost some perceived control over something, and therefore, loss of choice. This leads to loss of power and security and…more stress. The good news is that, right now, there are circumstances to which we can say yes or no. This is called creating boundaries.
“Your personal boundaries protect the inner core of your identity and right to choices: There lives the dearest, freshest, deep-down things.” GM Hopkins
Setting boundaries also means different things to different cultures. For instance, there are elements of South and East Asian cultures that work against drawing boundaries as it may be deemed selfish to do so. We may feel incapable of saying no because of the guilt we feel in abandoning our duty and the people who need us most. It can be hard to say no to our family about what they can or cannot say to us if our silent sacrifice is the language of love. Still, we can consider whether we would be better at taking care of others if we were better at taking care of ourselves. Who and what can we say no to today?
A quick way to calm anxiety is an exercise called 3-3-3*, designed to bring us back to the present moment.
* Name three sounds heard in the environment.
* Move three parts of the body – shoulders, fingers, then feet. Say out loud three things seen in the environment.
Practice being exquisitely sensory. Really look at the surroundings, listen to the sounds, smell and taste the environment, feel the body sitting, standing, running, jumping, lying down. - Recurrent self-doubt, sorrow, and shame.
“Grief engages the pain centers housed in our deep limbic system.” (Amen, 2016) Self-doubt, sorrow, and shame are experienced physiologically. Grounding is a way of staying focused and present. Sometimes our body actually doesn’t know whether or not it’s in real danger. Changing the breath from rapid and shallow to deep and slow (slower on the exhale) informs the body that it is safer.
We may develop shaming beliefs about ourselves that say something is wrong with us. Feelings of powerlessness or helplessness often accompany these beliefs. In terms of Chronic Loss, we may be internalizing experiences of actually being betrayed, objectified, or abused. Some steps we can take to minimize shame’s debilitating effect are: separating the past from the present, acting as if we have worth and value, imagining that the shame voice is a younger part of us who needs protection and compassion, practicing mindfulness.
- Actual isolation or feelings of being cut off from the mainstream.
27-year-old Lola came to therapy having experienced a debilitating stroke 4 years previously. Her father had passed away, her sister lived in another state, and her mother was suffering dementia. Then came the pandemic. She was experiencing chronic loss on every level of her existence. Although she could continue to work at a career she loved, she felt alone and isolated. Lola had shame and embarrassment about her post-stroke body.
Then came guilt because she was also so very proud of how far she’d come in her recovery. Heroically, she maintained as many aspects of her health as she could, even when she didn’t want to.
Maintain physical health.Keep appointments with medical providers, naturopath, acupuncturist, etc., all up to date. Even if we don’t feel like it.
Maintain emotional and mental health. Seek therapy from someone who is familiar with the concept and cyclical nature of CL. Make every effort to hang out with nonjudgmental people during this vulnerable time.
- Struggles with managing the loss.
When we list the losses with a friend or therapist, it becomes clearer why we feel so bad. And that’s a good thing. We can begin to take apart what feels like this huge clump of loss (think of a ball of rubber bands) so that it is less overwhelming and more manageable.
Sherry has MS and recently experienced the terror of temporary paralysis of both legs. After recovering, she asked herself a strength-based question, “What can I control right now?” She took action by calling a contractor to adjust the doorways for a future wheelchair, built an elevator to the second floor, and moved her essential living to downstairs.
- No foreseeable closure.
One of the difficulties in CL is the lack of closure due to the nature of the loss. Among other things, this challenges our tolerance for ambiguity. We are hardwired to seek consistency, habit, and routine. When the constant IS uncertainty, we have stress.
Ritual is a marker of time when there is no foreseeable future without relief of this stress. It is a religious concept in much of western culture. But, as exemplified in other cultures, ritual can:
* provide order in chaos
* allow us to work through grief in a safe and constructive way
* allow us to connect to peace or clarity
* keep us grounded and in your body
* allow us to include important other people
Frances Weller, psychotherapist, writer and soul activist says, “Ritual is the means whereby we can engage and work the ground of grief, allowing it to move and shift and ultimately take its new shape in the soul, which is one of deep acknowledgement of the place we will eternally hold in our soul for what was lost.” (2019)
Not everyone meets the criteria for CLS. More research will give us valuable information about why. But when I think of enduring chronic loss, the word “resilience” comes to mind. One definition of resilience is “the capacity to recover quickly from difficulties.” I propose a change in the definition to include, “developing the capacity to be present.” When the future looks bleak, now is the only place to be.
“Looking backward, you can see everything that has been taken from you or you have been forced to relinquish. There is no going back to the past and the future is uncertain. Looking forward you can’t see anything quite clearly. All you have is the present.” (Absinger, 2015)
At some point, there will be meaning in this experience for us.
Our presence is required.
We are not alone.
We will make it through. Everything changes all the time. The pain will change.
Our peace enhances the universe.
*All names and identifying information are changed.
* Brainspotting is a powerful brain therapy that reveals a client’s unprocessed traumas through fixed eye positions and bilateral music.
* 3-3-3 credit to indianexpress.com
© Jan Santora-Farrar