Your Sense of Self Has Changed

“Every day you wake up and your whole sense of self had changed whether you want it to or no. You have to think of yourself as different,” Adrienne Barnes, a patient with pancreatic cancer tells us.”

Then, we hear Pete Johnson, who has been diagnosed with lung cancer, say, “There are times, even now, that I think maybe tomorrow I’ll wake up and I’m not really a cancer patient, it’s all been a dream.”

Adrienne and Pete were featured in the 2005 video Voices From The Lived World of Illness produced by the Center for Communication in Medicine. The video was brought to the attention of The Health Show, a radio program recorded at WAMC (Albany, NY) and distributed nationwide through National Public Radio. The host contacted Dr. Bernard Bandman and I, the video’s co-producers. We agreed to appear on the show along with Dr. Lidia Schapira, an oncologist and medical advisor on the project, who would join us on the phone from Massachusetts General Hospital in Boston.

In a previous blog, “What’s Said And Left Unsaid,” I referenced what Adrienne, Pete and the other patients in the video said about the communication challenges surrounding medical language. For this post, I’ll be sharing what was discussed on the same radio program about the impact of illness on one’s sense of self.

After playing the clips of Adrienne and Pete, the host asked Dr. Bandman for his reaction. As a psychologist at a cancer center he explained, “There are normal emotions at time of diagnosis. They can experience disbelief, fear, anxiety and sometimes despondency or depression. Patients need to hear from their doctor that they understand the emotional impact of a diagnosis and offer psychological support services as part of their care. Patients will also admit that their illness helped them appreciate people in their lives and simple things that they had taken for granted. It can be an emotional roller coaster.”

Dr. Schapira added, “My wise patient Julie Goldman compared her experience of living with metastatic cancer to a roller coaster ride” and pointed out that her medical team served as “a strong pillar of support that prevented the roller coaster from crashing.” Speaking as a healthcare provider, Dr. Schapira suggested, “One has to ask each patient who/what supports you?”

“There’s a loss of healthy self,” I interjected. “There’s a new self in a relationship with medication…a dependence on medication…still wanting independence but doctors prescribe medications as part of care.”

Then, I shared what a patient told me about her relationship to medications. “I was someone who never had to take more than an aspirin,” she said. “Now, I’m dependent on medication for sleep, nausea, constipation, diarrhea, anxiety and sometimes more when I’m trying to get back my normal self.”

I went on to say, “As a writer I often turn to the humanities: philosophers, artists, and poets who document the human experience. As a medical humanist my knowledge comes from the patient as well the literature of illness. The writer Max Lerner in his memoir Wrestling with Angels wrote, “I felt split into two selves: the sick self I had to live with; the normal one I was trying to live by.”

Following my comments, the host aired the words of George Lewis, another cancer patient in the video. George confided, “I think I pretend I will live forever” at which point the host looked at us across the studio desk and remarked, “I think we can understand those feelings.”

In a segue to bringing The Health Show to a close, we hear Adrienne lamenting, “If I could have had all the wonderful things that have come from this…all the realizations and the appreciations and the fine tuning of senses and all the love and gratitude and spirituality without having the diagnosis. It’s impossible not to admit that some good things have come out of this but I still wish I didn’t have pancreatic cancer.”

There’s not much more that I can add to what the patients said other than the lived experience of illness often heightens awareness of what truly matters. And, in my work and personal life, I’ve learned that when these reflections are shared with loved ones they can cultivate lasting connections and memories.