The receptionist opens the door to the doctor's office and announces, “Your invisible patient is here.” The doctor responds, “Tell him I can't see him now!”
Old as the hills, this joke takes on new meaning for cancer survivors.
Nowadays everyone knows the completion of treatment rarely marks the end of the cancer experience. Surgical scars remain and abnormalities are followed as patients begin their recovery. On occasion, patients display symptoms of post-traumatic stress disorder (PTSD), a distinct phenomenon first described in war veterans and referred to as an invisible wound.
As a general internist, I stayed alert for patients' signs and symptoms of aftereffects or cancer recurrence. Emotional issues were rarely discussed, because in my office most patients talked and acted like their pre-cancer selves. So after I completed my first course of chemotherapy, I expected to slip back into my old normal, too.
Within weeks of my first remission I discovered that surgical scars and PTSD were only the tip of the iceberg of aftereffects. A spectrum of invisible wounds can fester below the physicians' radar.
I want to discuss three common, interrelated problems that can't be measured with blood tests or imaging studies: cancer-related pain, fatigue, and cognitive deficits.
Few oncologists doubt organic etiologies for any of these problems, even when treatable causes have been ruled out and the mechanism(s) or correlative pathology remains unknown. As healers, they just wish they had more to offer patients.
As a physician-survivor I found this particular triad of invisible wounds of interest because it posed my greatest challenge to living well when my cancer was in remission. And exposing the varied ways it sabotaged my happiness helped me finally move on.
Simply put, my pain, fatigue, and cognitive deficits made it difficult to think, feel, or act like my usual self. Fatigue lowered my pain threshold; pain stressed my cognitive function; forgetfulness led to mistakes that drained physical energy when they could be fixed and emotional energy when they couldn't.
The only way to escape the vicious cycle of fatigue-pain-and-forgetfulness was to recognize and respect my limits. Pacing my activities and taking naps helped to a degree. But the struggle continued until a few insights set me free.
The first insight has to do with miscues. After delivering a keynote years ago, I was schmoozing at the book-signing table. An old friend who'd seen my name on an event flyer came up to surprise me. Thrilled to reconnect, I began to develop the tension headache that signaled the limits of my energy. I ignored it and kept talking, knowing I'd rest later that afternoon and my headache would resolve.
We said our good-byes and she left. Alone, I basked in the joy of the meeting, feeling completely happy. Elated, even. That's when the event's organizer spotted me from across the room, walked over, and asked, “Wendy, what's wrong?”
“You look upset,” she explained. “Is everything okay?”
The stark contrast between what I was feeling and what she perceived explained the mystery of why my children so often asked, “Mom, are you angry?” When I'm tired or in pain, my facial expression suggests anger, worry, or displeasure when actually I feel happy.
Forgetfulness, too, can cause miscues that strain relationships. I forget things all day, every day. The problem for me is not the inconvenience of forgetting (e.g., having to make a second trip to the store) or the embarrassment of losing my train of thought. I can handle that. It's when my forgetting something important affects someone else that this invisible wound causes me pain.
Under normal circumstances, if people forget, say, your birthday, a natural response is to feel hurt or angry that you rank lower on their priority list than whatever it was they were doing instead. In my case, even when everyone involved knows that I forgot because my memory is sketchy (and not because I don't value what was forgotten), the subconscious link between forgetting and not caring lingers in the air. People feel hurt, and I feel responsible.
Along with social miscues is the issue of volition. Unlike an amputation (a wound that no amount of willpower can fix), my triad of invisible wounds is under my control to a degree. I can choose to suffer pain silently, so I don't spoil happy family time. I can push myself past my energy limits, so I can participate in a special event. And I can work really hard to remember something important, even if it means repeating it over and over nonstop in my head.
The possibility of overcoming my limits muddies the boundaries of what I can and can't do. Choosing wisely—e.g., telling people I'm hurting and need to change chairs, leaving an event early to rest, or requesting that people rely on someone else to remember—can feel like giving in or giving up.
Lastly, these three invisible deficits are burdensome through their similarity to the stigmata of old age. My survival suggests I cheated death. But pain, fatigue, and cognitive deficits make me feel more than just older. Sometimes I feel old, alienated from my cohorts and closer to the death I've been trying to escape with my cancer therapies.
Until research leads to more effective ways to prevent and treat cancer-related pain, fatigue, and cognitive deficits, here are simple steps you can take to help patients heal:
- Acknowledge patients' invisible wounds, as well as the distress they can cause.
- Reassure patients these symptoms are real and treatable, even when we can't measure them.
- Refer patients to resources that offer insight and support.
In medicine, sometimes just seeing them—both the patients and their wounds—is enough to help patients cope and grow.