The Stigma that Just Won’t End

On one of my favorite non-lung-cancer-related forums, a LungCancer.net blog was referenced, Lung Cancer Stigma – What Can We Do About It? where Lora Rhodes, the author of the blog post, begins by defining what a stigma is. She writes that it is “a feeling imparted by others that one’s disease was self-inflicted…” and “Lung cancer stigma can result in feelings of fear, guilt, and blame.”

Lora discusses an interesting movement called the Lung Cancer Project whose goal is “to identify, understand, and remove stigma and other barriers faced by people with lung cancer.” If you have never checked out the Lung Cancer Project, take a look at it. One of the project’s studies surveyed more than 3,000 people to understand the social psychology of lung cancer relative to breast cancer. The study confirmed what those of us with lung cancer already know: people have a significantly negative bias and associate blame and hopelessness with lung cancer compared to breast cancer.

Lora’s blog post goes on to dispute common myths associated with lung cancer. For instance, many people diagnosed with lung cancer have never smoked or quit long ago. Furthermore, the majority of those who do smoke wish they could quit, but nicotine is as addictive as heroin, cocaine, or alcohol.

But, the point of this post is not to reiterate all that Lora said. You can (and should) read her post. And, take the Lung Cancer Project’s Implicit Association Test (IAT) if you want to see what your own biases are. But, the point of this post is the responses that came from the cancer community to a post about lung cancer stigma.

The first thing I noticed about the replies to the blog post were people with other cancers adamantly stating that their cancer also had a stigma. One explained that esophageal cancer could be associated with the abuse of alcohol and another said that colon cancer was sometimes blamed on a poor diet or lack of exercise. These statements may be true, but I have never heard anyone ask someone with colon cancer, “Oh, did you eat an unhealthy diet and cause your own cancer? Well, then, suffer. You should have known better.”

It was so odd. It was like they wanted their cancer to be stigmatized. Why????

Lung cancer stigma is so strong that it kills people. Indeed, over 160,000 people are expected to lose their lives to lung cancer this year or #433ADay as many in the lung cancer community are tagging awareness posts these days.

How is the stigma responsible for those deaths? Well, it probably can’t be blamed on all of them, but it sure can be blamed on many of them. How’s that? The lack of funds allocated to lung cancer research as compared to other cancers. We can’t find cures or early detection methods or much of anything else without funding. And, lung cancer is definitely the cancer stepchild when it comes to getting any money.

What really saddened me … but also made me mad … were some of the comments left by people who read the post, people who themselves have cancer. For me, they proved how deep (and scary) the stigma really is:

My mother died of lung cancer and was a two pack a day smoker. My siblings and I and all her grandchildren begged her to stop. She did finally stop at age 70 and was diagnosed at 73. Her first words after diagnosis was XXX why did I give up cigarettes. I don’t know if her children or grandchildren will ever forgive her for slow suicide. (emphasis mine)

Here’s another:

When I was a teenager my dad, who had smoked for a long as I could remember and had diabetes, would get up every morning and cough so hard that it sounded like he’d cough a lung up. I went to him and asked him to quit. He just laughed. I told him it would be easier on us 4 kids if he’d just shoot himself. (emphasis mine)

No one … no one … deserves cancer. No one deserves lung cancer. And no one deserves to be ostracized because of their cancer.

Read what Dr. Jyoti Patel wrote, back in 2014:

For years I have cared for patients with lung cancer who suffered from the stigma surrounding the disease. I have watched patients courageously fight, endure treatment toxicity, and come to terms with the fact that their disease would ultimately be fatal all on their own, primarily because of the shame that they felt. They, and many others, felt the disease was somehow self-inflicted. They felt guilty for putting their loved ones through such a difficult journey, one they felt they had brought upon themselves. It’s hard for me to believe that anyone could feel that such a deadly disease was somehow deserved.

Family members, friends, acquaintances, and yes, even the patients themselves who were or are smokers, feel that they got what they deserved. How in the world do we change this stigma? It isn’t getting any better over time. No matter how much we talk about it, the stigma runs deep.

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