At times, a firm directive from you can help a struggling patient get back on track the way a simple railroad switch can change the trajectory of a 10,000-ton train. One such life-changing instruction is “Honor your grief.”
After any loss, the wisdom of the body and mind enables people to continue on in life. For example, while an amputation triggers a cascade of reparative processes, patients' sighting of the missing part initiates an emotional journey called grief, one marked by sorrowful thoughts and painful feelings that, over time, knit together the laceration of the self with a scar of acceptance and adjustment. If that grief is not expressed in healing ways, persistent sadness may permeate the nooks and crannies of life, making everything more difficult while poisoning otherwise good times.
Sadness threads its way through the world of oncology, because this disease of cellular abundance brings innumerable unwanted losses. Patients' losses can be temporary or permanent, minor or huge, gradual or sudden, expected or surprising. Even when recognized and accepted by patients as the price of preventing the greatest loss of all, each loss is still a loss.
Unfortunately, a wide variety of obstacles litters the path of grief. I remember how, decades ago, any hint of my sadness put people in fix-it mode. For example, I tearfully told two friends I'd shuttered my medical practice to be treated for recurrence. One commanded with her brow deeply furrowed, “Don't feel sad. You need to focus on getting well.” The other chirped as if I'd won the lottery, “Don't feel sad. Now you have more time with your kids!” Their compassionate efforts to staunch my sadness only delayed my benefitting from the bitter medicine called grief.
While today's newly diagnosed patients usually get the memo that it's okay to cry, the socially acceptable window for sorrow remains unreasonably short. And a ubiquitous message to “live strong” lives on. For patients who perceive sadness as failing to stay strong, the phrase, “It's okay to cry,” can feel more like a participation trophy than encouragement to do the necessary grief work.
Most obstacles to patients' grief are far more complicated than patients' concern about appearing weak. Consider those who truly believe that chemo-induced alopecia is no big deal in the grand scheme of things. If the bald head in their bathroom mirror causes deep sadness to bubble up, feeling ashamed of one's own shallowness—“It's just hair”—can make crying unacceptable.
Of course that's unfair. To lose trademark tresses that shape a patient's public persona is to lose a small piece of oneself. And a naked scalp is undeniable proof of losing one's place among “us healthy folks” to become what has, until now, been “other.” This jarring transition can prompt deep existential issues, possibly fueled by subconscious associations with powerless prisoners, concentration camp inmates, and dying cancer patients.
Any one of those reactions might explain the behavior of a patient who groped in the dark whenever putting on or taking off her wig, her eyes squeezed shut to ensure she never saw the sight that prompts some patients to wonder, “Who am I now?”
We can assume that when it comes to patients' sadness, it's probably not about the hair but, somehow, related to a reality captured in the title of long-term survivor Kairol Rosenthal's book Everything Changes (http://everythingchangesbook.com). A particular loss begging for attention is likely linked to some change in patients' roles, relationships, hopes, or expectations—a wound that can't be measured on blood tests and scans.
Most patients need to grieve at the beginning of their cancer journey and, again, if death approaches. But the sad truth is that some patients need to grieve periodically throughout their survivorship, even if cured of their cancer. A potential problem for survivors who are not dying is that the further they get from treatment, the easier it may be to miss warning signs of obstructed grief.
This is something I've talked about with other survivors, including members of my dwindling clutch of friends who, like me, were diagnosed decades ago. Our celebratory reunions are tempered by our updates about new losses due to aftereffects. Irrespective of which -ologist is treating the latest pathology, our difficulties with grief have a familiar ring.
One day I shared my struggle to adjust emotionally to a worsening aftereffect. I described feeling bad about feeling sad, as if I had no right, a sentiment reinforced repeatedly by family and friends who kept reminding me, “You're lucky to be here to deal with this problem.”
The ensuing discussion revolved around how we never forget—not for an instant—how much better off we are than most cancer patients. How we accept without anger or regret our cumulative losses as the price of our treasured survival. And how, if feeling sad about a loss, how healing it is to be told our sadness is justified.
Like any symptom, the same sadness can reflect different problems that demand different responses. You help patients by determining if their persistent sadness is due to complicated or prolonged grief that needs to end, or whether it is due instead to obstructed grief that needs a jumpstart.
If you suspect the latter:
* Validate patients' loss: “Your loss is real and painful.”
* Justify patients' sadness: “Sadness is normal; you deserve to feel sad.”
* Remind patients: “Grief is the natural, healing response to loss. It's painful, but will help you adjust and move on.”
More than they need permission, some patients need encouragement: “Your job is to grieve this loss. It's hard work, but you've done tough things before.” And patients need your support, such as referrals to quality resources and, if indicated, counselors.
My next column will be a patient handout on grief that reassures patients their sadness is justified and offers one key piece of advice: “Honor your grief.”