Stigma and the (un)deserving sick

I had lung cancer.

And every time I talk about my cancer, I find myself explaining that the carcinoid cancer I experienced is a very rare lung cancer, one that strikes at random, one that has no known risk factors. In other words, a lung cancer that is not associated with smoking. Occasionally, people ask me if I smoke. Sometimes I just say no; sometimes I explain that I smoked some in high school and college but quit almost thirty years before my carcinoid tumor was discovered. This is what I say. What I think is, would it matter to you if I smoked and then experienced a more typical form of lung cancer? Would it mean that my cancer was my own fault? Would it lessen your sympathy for what I went through? Would it mean I was less deserving of care and everything the medical community could offer me?

This is the stigma of lung cancer. When Dana Reeve died of lung cancer in 2006 at the age of 44, only 18 months after her husband Christopher died from complications associated with his paralysis, the fact that she did not smoke was prominently featured in memorials. When Peter Jennings announced in 2005 that he had lung cancer in what would be his final news broadcast, he found it necessary to state, “yes, I was a smoker until about 20 years ago, and I was weak and I smoked over 9/11.” On websites listing famous people who died of lung cancer, smoking status, past or present, is always prominently featured. I get this, of course. We want to discourage smoking, and the risk of early and painful death can serve as an important tool in our persuasive arsenal. But in doing this, we also stigmatize lung cancer and those who suffer from the disease. And this is a problem.

Lung cancer isn’t the only disease that is stigmatized – we learned this long ago when HIV/AIDS was first characterized as Gay-Related Infectious Disease. Early victims of the disease – often gay men and intravenous drug users – were seen as responsible for their disease. They were ostracized by friends and family and suffered discrimination in the workplace. And there is also stigma associated with diseases such as diabetes (how did you get so overweight?), skin cancer (why didn’t you wear sunblock?), and depression (can’t you just buck up and get over it?). When diseases are stigmatized, they make conversation difficult as people feel defensive (hey, diabetes isn’t just about weight!), guilty (you’re right, I shouldn’t have gone to tanning booths all through college), and frustrated (no, I can’t just “get over” depression!). The stigma influences how people feel about themselves, how they talk with others about their health, and the decisions they make about seeking help and following through with treatment. On a purely personal level, stigma sucks.

But stigma also has implications for larger issues of public policy. The stigmatization of AIDS affected not only personal relationships but also significantly slowed the response of public health officials, funding agencies, and scientists. This effect of stigma can be seen in a comparison between lung cancer and breast cancer. Breast cancer is the most prevalent cancer for women. For example, in the U.S. during 2013 over 230,000 women were diagnosed, compared with total lung cancer diagnoses of 212,000 people (more than half of these men). In that same year, about 40,000 women died of breast cancer while over 70,000 women (and 85,000 men) died of lung cancer. So though breast cancer affects more women, lung cancer is by far the bigger killer. Yet in looking at funding by cancer type, breast cancer typically receives many more dollars than lung cancer.

I acknowledge that there are a lot of reasons for differences in funding. There may be more promising treatments in the pipeline for breast cancer. Basic research in genetics may be especially important for breast cancer. But I would argue that the stigmatized status of lung cancer is important, too. In the month of October, in particular, pink ribbons decorate everything from football helmets to yogurt containers. We run and walk for breast cancer awareness; we uplift women warriors who have survived; we provide support for women as they go through chemotherapy, radiation, and mastectomy; we honor and memorialize our mothers, sisters, and daughters who have died. I’m not saying we shouldn’t do these things (well, except all the pink ribbon campaigns that benefit corporations more than anyone with cancer), but I wish we could also talk a bit more about stigmatized diseases like lung cancer. How many people know that November is Lung Cancer Awareness Month? How many people know that the ribbon color for lung cancer is white … or pearl … or clear? Apparently even the ribbon-deciders aren’t totally decided on this, but suffice to say that it is not as visible as pink. Bottom line: how many people hear the words lung cancer and think not about the need for compassion, high quality medical care, and scientific research but about a death sentence inflicted on oneself by the decision to smoke? Many people think this, I’d wager. Many people.

In recent weeks, this issue of stigma has come to the fore again with the passage in the House of Representatives of the American Health Care Act (aka, TrumpCare). Much of the criticism about this bill has swirled around the issue of providing coverage for individuals with pre-existing conditions. Jimmy Kimmel went viral when he talked about his son born with a serious heart defect, pleading that “no parent should ever have to decide if they can afford to save their child’s life.” Some officials in the Trump administration agreed that those like Kimmel’s son should, indeed, be covered but that we should be less sympathetic to those who might bear responsibility for their health conditions. According to Mick Mulvaney, Trump budget director, providing coverage for innocent babies “doesn’t mean we should take care of  the person who sits at home, eats poorly and gets diabetes.”

There is so much wrong with this even beyond a misrepresentation of how insurance is supposed to work. Diseases have many contributing factors – environment, heredity, personal behavior, random luck of the draw. We can’t sort individuals into those who “caused” their disease and those that didn’t. But even if we could, why does it matter? Health care is a right. Compassion shouldn’t discriminate. And if, God forbid, the AHCA or something like it becomes the law of the land, I shouldn’t have to make an argument (that would be ignored) about why my lung cancer shouldn’t “count” as a pre-existing condition. And neither should anyone else.

7 thoughts on “Stigma and the (un)deserving sick”

  1. I’m sorry to hear about your cancer. I was diagnosed (and treated) for ovarian cancer last year. It is less stigmatized but inspires a great amount of fear. One day I realized the reactions that surprised me and came from close friends about what caused it (or what I did to cause it) were more about reassuring themselves that they wouldn’t also get it. Not a great motivation, but also not blaming me for my cancer (though I sometimes heard it that way). I know it’s much more complicated with lung cancer and those are really remarkable examples. Cancer has much less stigma than it did but there are still so many people who just don’t want to hear it or be near it– gaining of course no protection with their denial. Thanks for this blog.

  2. Glad you wrote about this important topic. We have another friend in common who has a lung disease and I’m wondering how many people asked him if he smoked? 😫

    1. I think very few people with lung diseases escape this stigma – in thoughts, if not in words. I have a friend who is now awaiting a double lung transplant for a horrible (but totally random) disease and stigma is perhaps the smallest of his problems, but still … If only everyone could see compassion and care as the most basic of human rights.

  3. Great post Kathy. I will have my students read this post in health com. I am working on a project with someone who recovered from full paralysis from stroke. He too would agree that stroke is stigmatized and does not received the support that it deserves. Thank you for this post.

  4. This is an absolutely brilliant piece of writing I wish it were syndicated and everyone read it, everything you say, and the way you write, just superb, sending to everyone I know. Thank you. You’re a very talented thinker. The world needs more of you.

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