When the stigma of a disease makes its diagnosis even worse

In 1983, when my Dad was just 62 years old, he died of metastatic lung cancer, diagnosed only in the final week of his life. In fact, he and my mother attended a Valentine’s Day dance together the month before he was hospitalized. His doctor’s best guess about Dad’s symptoms: a persistent case of pneumonia.

Ironically, Dad was a non-smoker.

And as if being diagnosed with cancer is not bad enough, the negative stigma of having lung cancer, according to new Australian research, is related to poorer quality of life and higher psychological distress in those who are its victims. 

The question of which diagnoses are associated with social stigma is interesting to me as a heart attack survivor, because heart disease is often considered, like lung cancer, to be largely self-inflicted.

Compare women’s #1 killer (heart disease) with breast cancer, for example. Heart disease kills six times more women each year than breast cancer does.  Yet which diagnosis is the hands-down pinkified darling of those who walk, row, run or shop “for the cure”?  

Despite considerable research* linking many breast cancer cases with lifestyle risk factors like inactivity, moderate alcohol consumption or obesity, this diagnosis is rarely labelled “self-inflicted” with the frequency that cardiovascular diseases are. (See also: What Women With Heart Disease Can Learn From “Pinkwashing)

And if women really wanted to raise funds and awareness of the most common cause of all cancer-related deaths, we’d all be out walking, rowing, running and shopping for a cure for lung cancer – which has been the deadliest form of cancer for nearly 20 years, although diagnosis and treatment options still lag far behind breast cancer.

There are fewer research funds, advocacy groups and well-recognized wristbands for lung cancer than for other forms of cancer.

Lung cancer is, alas, the poor cousin of breast cancer in the Wonderful World of Oncology – and one reason for this family feud may well be the lung cancer culture of blame, particularly surrounding its link to the addictive habit of smoking.

As the new Australian study** led by Dr. Suzanne K. Chambers recently reported:

“Strategies to reduce lung cancer have included legislation to control the sales and marketing of tobacco products; restrictions on smoking in public spaces; and mass media campaigns to educate the public on the health risks of smoking. These efforts have led to dramatic changes in smoking prevalence. 

“It has also been suggested that this public health approach leads to stigmatization of smokers, and further that stigmatization of smokers can be viewed as a powerful tool to motivate behaviour change in smokers. The question arises, however, as to whether this stigmatization influences the illness experience of people who develop a smoking-related disease.”

Dr. Chambers and her team believe that this health-related stigma may be a result of a number of factors unique to lung cancer:

  • the association between the disease and smoking
  • the perception of the disease as self-inflicted
  • its high mortality rate (perception of treatment as futile)
  • perceptions about the type of death that may be experienced

Dr. Chambers observed that these negative social views about lung cancer may cause patients to delay seeking treatment, and to experience increased feelings of distress about their cancer diagnosis – far more so than those with other forms of cancer.

The five-year survival rate for those diagnosed with lung cancer between 1995 and 2000 was only 15 percent. By comparison, during that same period, the five-year survival rate for women diagnosed with breast cancer was 88 percent. This dismal outlook for lung cancer patients stems in part from the fact that people whose symptoms are bad enough to send them to a doctor usually have advanced lung cancer just as my own Dad did.

Social workers helping lung cancer patients have reported very similar themes when discussing their perceptions of the cancer experience. Some believe that the association of lung cancer with smoking has led to lung cancer patients feeling stigmatized, from which guilt, blame and shame arises.

This stigma is internalized by many patients and has also led to a division among lung cancer patients between smokers who ‘deserve their cancer’ and non-smokers who do not. Cancer treatments can often lead to hair loss, scars or other bodily changes, which may also add to the stigma.

Interaction with family, friends and doctors can often be affected as a result, and many patients, particularly those who had stopped smoking years ago or had never smoked, can feel unjustly blamed for their illness.

Besides lung cancer and cardiovascular disease, other health conditions can unfortunately share this negative social stigma – like HIV-AIDS, venereal diseases, obesity, certain neurological and skin disorders, and particularly mental illness.

Mayo Clinic experts explain:

“Based on stereotypes, stigma is a negative judgment based on a personal trait— in this case, having a mental health condition.

“It was once a common perception that having a mental illness was due to some kind of personal weakness. We now know that mental health disorders have a biological basis and can be treated like any other health condition.

“Even so, we still have a long way to go to overcome the many misconceptions, fears and biases people have about mental health, and the stigma these attitudes create.”

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See also: 

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* McTiernan, A. “Behavioral Risk Factors in Breast Cancer: Can Risk Be Modified?” The Oncologist. August 2003 vol. 8 no. 4 326-334 doi: 10.1634/8-4-326

** Chambers, S et al. “A Systematic Review of the Impact of Stigma and Nihilism on Lung Cancer Outcomes”. BMC Cancer. May 2012, 12:184 doi:10.1186/1471-2407-12-184

5 thoughts on “When the stigma of a disease makes its diagnosis even worse

  1. It is so true that there is a stigma involved with lung cancer. I saw that myself this year in the way people reacted to the death of a relative. You just don’t see research funds going towards it, while at the same time provincial governments in Canada and other governments in the US are suing tobacco companies and in some cases getting large settlements. Ideally some of that money should go for research.

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    • Lung cancer has been the deadliest form of cancer for two decades, yet still suffers under this stigma of self-infliction. Thanks for your comments here, Annette.

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  2. Pingback: Dr. Ann Becker-Schutte

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