The Stigma that Kills
Last updated: June 2020
The American Society of Clinical Oncology (ASCO) recently ran a guest commentary about a 43-year-old non-smoker who was diagnosed with non-small cell lung cancer (NSCLC) with an EGFR mutation. The woman, who they called Mary, was a wife and mom, vivacious, active, a runner. And terrified for her family to know that she had been diagnosed with lung cancer.
She requested that they were told no more than that she had metastatic cancer. So that no one would accidentally learn that she had LUNG cancer, she attended all of her appointments alone. She told initially told her oncologist, "They're better off not knowing." Later she added, "I do not want them to know I have lung cancer. I do not want our neighbors to know. I can't deal with their judgment."
When stigma prevents people from reaching out
Is anyone else cringing yet? These were such sad words to me. But, not just sad, maddening. How can a stigma run so deep that it is causing patients to endure all that goes with a cancer diagnosis all alone? Mary endured treatments, tests, and hearing that her cancer was progressing by herself until she became so weak that she had to allow her family to come along. Even then, Mary had a piece of paper that she gave to the doctor at each visit requesting that they not be told that she had lung cancer.
Keeping lung cancer a secret
As I read the article, I was reminded of a visit I had with a representative for a major pharmaceutical company. I was working a Free to Breathe table at a free-for-all ice skating event. Reps from the pharmaceutical company were there to help the event they helped sponsor.
As I visited with the rep from Oklahoma, she told me about many patients she met in her state. She said that they either refused treatment altogether or told everyone they had breast cancer rather than admit they had lung cancer.
I was dumbfounded. I knew that there was a stigma, but I didn't know that it ran so deep that patients were willing to die rather than admit what kind of cancer they had.
An isolating diagnosis
However, I shouldn't be so surprised, I don't guess. I was at a seminar held by a major cancer facility not too long ago. People with all kinds of cancer attended.
I sat down at a table with three other women. We laughed and had a great time until we got around to telling what kind of cancer we were battling. The three all had breast cancer. When I told them that I had lung cancer, a noticeable chill surrounded the table. I was not included in any further conversations. I was ostracized by other cancer patients. What????
When Mary, the subject of the ASCO article, died, her obituary stated that she had died of breast cancer. Her myth was perpetuated until the very end. Only her closest family members ever learned that she actually died of lung cancer.
The realities of stigma
Lung cancer kills more men and women every year than any other cancer ... and yet people are afraid to admit that they even have the disease. I don't know about you, but I find this heartbreaking and infuriating.
Beside manner matters! What has your experience been?