Anticipatory Grieving and Parents: somatic symptom disorders

Dear Dr. Neimeyer,

I’m a physician and psychiatrist, and I have a question for you given your decades of work in both the theory and clinical practice around grief/bereavement.

I am trained as a pediatrician, and also as an adult + child/adolescent psychiatrist. I now work as a psychiatrist, embedded with the pediatric palliative care team at a major children’s hospital, and also as a psychiatrist in Psychosocial Oncology at our cancer centre (working with a lot of adolescents and young adults with cancer). I’ve facilitated grief groups for almost 20 years for young children up to young adults, and grief is an area of great interest to me, but I’m largely a clinician and not a researcher.  In my clinical practice (where I see several parents of children who have life-limiting illnesses and whose children eventually die), I’ve observed a phenomenon whereby some parents develop significant and impairing somatic symptoms associated with their anticipatory grief. It resembles what we’d typically diagnose as conversion disorder or somatic symptom disorder if we were seeing such people in an outpatient psychiatry setting.

I have not seen very much written about this in the adult literature, and I wanted to ask if you know of any literature that addresses this—of course there is mention of insomnia, fatigue, weight gain/loss, depression/anxiety, hypervigilance, memory loss/disorganization, etc. in the bereavement/grief literature, but I don’t see a lot written about the impairing physical pain—which is often abdominal or headache pain, but I’ve also seen debilitating joint and whole body pain, “nerve zaps” through the legs that wake people from sleep or prevent sleep, doubling over with pain in mid-section, and difficulty walking.

I wondered if you have come across this and/or have thoughts re: treatment?  We see it in children who have experienced grief from losses (loved ones dying or other losses—eg parental abandonment, separation from school, etc–with attendant grief). But I haven’t seen anyone write about parents or loved ones watching a loved one (child or partner, etc.) facing shortened life.

I would be very grateful for any resources you can point me toward.  Conversion disorder in general is difficult to treat in children, but in parents with anticipatory grief, I’m dealing with one case where symptoms are quite unresponsive to treatment, despite the parent doing good work in therapy.

Best and many thanks in advance,

Mary P., MD

Dear Mary,

Yours is an intelligent, insightful, and clinically grounded question, arising from deep, broad and long experience with a population whose grief is palpable, and not infrequently disabling.  It brings to mind early discussions dating at least to Lindemann in the 1940’s on “identification” with the somatic symptoms of the deceased as a sign of pathological grief, but like you, I am not aware of a fuller and more evidence-informed discussion of the phenomenon in the contemporary literature.  No doubt there is room for that, perhaps beginning with a report of the incidence and clinical depiction of this somataform response in such patients, as captured using the more rigorous diagnostic criteria now available.

As for treatment, my thoughts are at best suggestive.  Certainly most bereaved parents seek means of giving voice to their unique pain, and experience a struggle for meaning in the loss, as they try to “make sense” of a senseless tragedy.  Equally, they are powerfully motivated to maintain a continuing bond with their child, one that often is not socially validated.  In this circumstance of wordless grief, a fracturing of a world of meaning, and a compelling need to preserve connection to the child, the development of somatic symptoms that overlap with those of the child would be fully coherent—expressing the grief physically, perhaps answering the question of how the loss came about through a kind of implicit self-blame and associated self-punishment, and providing a somatic link to the child through a common bridge of pain.  I would not merely presume the relevance of these possible factors, but would instead take these as clinical hypotheses to be evaluated through compassionate and well-timed inquiry in a clinical context.  If validated, each of these might be amenable to any of a number of treatment approaches outlined in the Techniques of Grief Therapy volumes published by Routledge.

I hope this brainstorming is helpful, but I suspect that your own strong grounding in the treatment of these cases might ultimately allow you to contribute more to the field than the field might at present offer you.

All the best,

Dr. Neimeyer

One comment on “Anticipatory Grieving and Parents: somatic symptom disorders

  1. As a former Hospice nurse and a current acupuncturist, I read your question and answer with great interest, because I have observed this phenomenon in my work in both settings. Quite often an acupuncture treatment will elicit a torrent of unexpected emotion, with a lessening and sometimes resolution of somatic symptoms that are then understood by the patient to be related to grief and and the loss of a loved one. I have come to the conclusion that unresolved grief becomes quite literally buried in the body when the heart and mind cannot hold any more, and that therapies such as acupuncture that address the soma can be very effective treatment together with counseling.

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