Addressing and Dealing With the Stigma of Lung Cancer

Tips on how to respond to comments like 'I didn't know you smoked!'

Dealing with and addressing the stigma of lung cancer is something nearly everyone with the disease must do at times. If it's not questions about your smoking status, or exposure to secondhand smoke, the stigma of lung cancer being difficult to treat enters the picture. What are some specific ways in which you can respond, and what is the rationale behind them? What may you wish to consider before responding?

We've discussed the stigma of lung cancer in other articles, but those who are living with the disease don't need to hear study results to know that the stigma is pervasive; it's not just the general public, but physicians as well. And it's intuitive that the stigma has led to negative consequences—both emotionally and physically.

Being asked if you are a closet smoker can make you very angry, whether you've ever smoked or not. Nobody deserves to have cancer, and everyone deserves compassion, kindness, and the best medical care available. Yet the question often provides a great "teachable moment" for educating another. So what should you think about and what should you say next time someone says "I didn't know you were a closet smoker!"

1

'I Didn't Know You Were a Smoker'

There are many variations on the questions about smoking. A few include:

  • "I didn't know you smoked"
  • "I bet you wish you had quit sooner"
  • "I knew you'd probably get lung cancer eventually"

It's not just people living with lung cancer, but family members who get these questions as well:

  • "I didn't know your mom smoked."
  • "Your dad has lung cancer. Have you thought about what that secondhand smoke did to you!"

Despite being at the top of our list of things not to say to someone with lung cancer, few people with the disease have been spared the question or comments.

Reasons For the Question

While the question can be painful no matter the reason it is asked, understanding the reason people ask about smoking may remove some of the sting, and help you think about the best ways to respond. Most people have good intentions and don't intend to be hurtful.

In some cases it's ignorance. Anti-smoking campaigns have done a good job of reducing smoking, but have led many to believe that smoking is the only risk factor.

Sometimes it's fear. Subconsciously a person may be hoping that if you smoked and he didn't, or if you smoked more than he did, he is somehow safer. We know that anyone who has lungs can get lung cancer—all you need is a pair of lungs—but our subconscious minds don't always think objectively. Or it may be fear of what your future holds that causes someone to ask this question as a method of pulling away.

Sometimes these comments are made simply for lack of knowing what to say. Many people who haven't experienced cancer themselves or in a friend or family member are at a loss as to what should be said. In this case, at least they have a place to begin.

Before Responding

When someone asks you about smoking, you may be ready to respond with a come back immediately. Or, you may try stuffing it. It's amazing how only a few words can churn up so much angst, but they do—again and again. Before jumping into responses, there are few things to consider.

First: Focus on Your Joy

More important than answering the question, is to not let the question throw you to the curb. Cancer takes a lot of energy, but there can still be joy. In fact, studies are now finding that many people with cancer find their lives change in positive ways, medically referred to as "posttraumatic growth in cancer survivors."

You don't want a brief question to steal the joy in your journey. When you find yourself struggling after being asked yet again about smoking, try to think of three ways in which your life is actually better now. Have you met anyone you wouldn't have otherwise met? Have you gone anywhere or done anything you wouldn't otherwise have experienced? Have any of your relationships become closer? Yes, it's not uncommon for formerly good friends to fall by the wayside after a diagnosis, but other relationships can be strengthened.

You can also ask yourself how you've changed in good ways. Have you developed more compassion for others? Facing stigma yourself can sometimes open your heart to others who are facing a different type of stigma.

Second: Vent When You Need

Far too many of us feel we need to stay positive on the outside while we are churning inside. Yet those emotions need to and will come out sometime or somewhere. While there aren't any studies that conclusively show being positive improves survival, stuffing negative emotions can affect the levels of your stress hormones in negative ways.

The old adage that "resentment is a poison you pour for someone else but drink yourself" is very insightful. Even if people realize that a comment they made about smoking is insensitive, they may quickly forget. You, on the other hand, may still be circulating it through your brain for a long time.

Think of someone in your life who can be a good sounding board when you need to vent. Someone non-judgmental. Someone who can simply listen without trying to fix things. And release those feelings.

Third: Take a Moment to Reflect

As a final step before looking at responses, consider that we all have made insensitive comments at times. We are all human. Trying to shift from anger to compassion may require the "fake it 'till you make it" approach at first, but rather than focusing your anger at your friend, consider that she may feel bad as well when she learns she has caused you pain. It can also be helpful to try and separate out the question from the person asking it.

Practicing self compassion is important as well. If you smoke or smoked in the past, you may be carrying some guilt of your own—guilt that is compounded when you are questioned about smoking. Nobody can change the past. But we can practice compassion for ourselves and others starting today.

How Can You Respond?

Some people get angry, whereas others may internalize comments like this and say nothing. Unfortunately, both responses hurt the receiver of the comment (you) more than the person who delivered the comment. Not that the person commenting meant to be hurtful. Addressing the comment (when appropriate and you have the energy to do so) can both help you express how you feel and may educate the person asking.

Another option is to have someone who is with you often think about how to respond. It doesn't seem fair that people coping with lung cancer (and their loved ones) should have to address the stigma, but educating people one person at a time is a start. Change happens when people hear about real people, not statistics or hypothetical stories. Be clear and forthright in what you have to say.

You may wish to consider one of the two following questions in return.

Why Do You Ask?

One of the best responses to the smoking question was shared by a lung cancer survivor who has experienced lung cancer herself, as well as in family members. When you ask a person why they ask about smoking, it reveals where the question is coming from.

Why Does it Matter?

No matter the response to "why do you ask" you could follow up with "why does it matter?" The answer to this question will help reveal your friend's assumptions in making the comment.

The bottom line is that nobody deserves to have cancer. Lifestyle factors are linked to many cancers. We don't ask people with colon cancer how long they've been sedentary. We don't ask women with breast cancer if they wish they had started having children earlier or breastfed longer.

In addition, smoking causes many cancers as well as and other diseases. Yet people who develop bladder cancer, pancreatic cancer, kidney cancer, acute myelogenous leukemia, and others don't usually face the smoking questions to the same extent.

Depending on the response, the person asking the question may now be ready for a teachable moment.

It's been argued by some that the question is important as a way to educate people about the dangers of smoking. Yet, it would be a rare person who has not heard about the connection between smoking and lung cancer, and to reach that person, it's simply not worth hurting so many people living with the disease with this question.

Whether a person with lung cancer has smoked or not does matter to oncologists, as tumors in people who have smoked and those who have never smoked have important differences. For example, never smokers are more likely to have a targetable mutation that will respond to targeted therapies, whereas someone who has smoked may have a tumor that is more likely to respond to immunotherapy.

Educating the Question Asker

There are many ways that you can turn the smoking question into a teachable moment.

Education About How Anyone Can Get Lung Cancer

It's important for the general public to understand that anyone can get lung cancer. Though smokers and nonsmokers deserve the same compassion, it's important for non-smokers to understand they are at risk. At the current time, 20% of women with lung cancer have never touched a cigarette, and lung cancer in never smokers is increasing—especially in young, never-smoking women.

Lung cancer in non-smokers is unrecognized even among health care providers. Never smokers are more likely to be diagnosed in the later, and less treatable stages of the disease. Many have symptoms for a prolonged period of time before the diagnosis is considered.

Education About How the Question Can Be Painful

Talking to your friend about how the question is painful can be very helpful, but going a little further can make this more clear. You may want to ask your friend to imagine herself in your position. Ask her to picture herself being diagnosed with breast cancer and then lung cancer. Far too many women with lung cancer have commented that they wish they had breast cancer instead, because of how people respond to hearing of their diagnosis.

You may want to ask your friend if he has ever felt marginalized or discriminated against in the past in some other way. Connecting in this way may allow him to better understand what you are saying.

Education About How Smokers Deserve Compassion

People don't smoke because they are unaware that it is a risk factor for lung cancer. Cigarettes are legal. Many people started during the young magical thinking years, and nicotine is extremely addicting (more addictive than heroin).

For some people, smoking has become almost a friend; something they do when lonely. For some, it is a social activity.

The fact is that the vast majority of us have done things that are not good for us at times, but everyone deserves compassion; not judgment.

Rather than simply instructing your friend to develop compassion, however, most people are more receptive when we begin by being vulnerable ourselves. Think of a situation, a person, or a group of people where you have felt judgmental. How could you change that in a way that you experience compassion instead? Sharing your own experience about trying to share your mindset—though frightening—may be the best way to inspire your friend to likewise practice compassion instead of judgment with lung cancer and smoking.

When The Question Is Not Asked Innocently

Most of the time, people do not ask about smoking to hurt you. Yet, there may be times. In this case, being polite, and offering education may just not cut it.

Before assuming that someone is trying to be hurtful, you might begin by stating what you suspect directly. "Are you accusing me of doing something so that I deserve to have cancer?" As Lance Armstrong said, "cancer is a disease, not a punishment."

If you believe your friend may be a "toxic friend" there are a few questions you can ask yourself:

  • Does the friend respect you? If the person seems to be aware that the question could be painful, does he simply not care?
  • Is the friend trying to prove superiority? A toxic person may ask the question as a way to put you down (and him above you).
  • Is the friend asking as a means of manipulating your feelings?
  • Is the friend asking the question as a way to create drama? Some toxic people thrive on drama, at the expense of their friends.

In some cases, you may need to eliminate toxic people from your life. Just as toxins in the environment can be harmful for people living with cancer (and those without cancer), toxic people can be harmful to your well being.

Negative comebacks should be the extreme exception in your conversations, but it may be helpful to have a few in your mind. You don't necessarily need to say these to a person, but simply thinking them may help relieve some of the pain you are experiencing. The goal is to keep the comment from circulating in your mind and causing you emotional pain.

If you find you're unable to let go, you may wish to wait and talk to a good friend. You may have a list of nasty comebacks you'd like to share, but if your friend is truly toxic it's likely that the emotional energy you spend considering a response would hurt you more than the friend.

A Few Thoughts

If you must say something to calm your mind, a few survivors have tried these.

You might consider flipping the question around. If your friend asks you if you wish you had never smoked, perhaps you can ask her if she wishes she had been more active, or eaten less fast food, or simply ate less (if she is overweight). In asking the question you don't have to be antagonist. If your friend truly asked the question innocently, she may finally "get it" through an analogy such as this.

Some people find other responses helpful. For example, one lung cancer survivor, in response to being asked if she smokes, says "only when I'm on fire."

Another, in response to the question about whether he smoked simply replied that if the one asking the question didn't know him well enough that he had to ask, he didn't know him well enough to be asking that question.

After You Respond

Whether you were asked the question innocently or not, it's likely that it won't be the last time you're asked. So what can you do now proactively to reduce pain in the future.

Connect With the Lung Cancer Community

One of the best ways to cope with the stigma of lung cancer is to connect with the lung cancer community. Fortunately, most of the communities make no distinction between smokers and never smokers, and never smokers are often the first to go to bat for the smokers.

There are many wonderful options with regard to both lung cancer organizations and online communities. The one suggestion many make is to become a part of a lung cancer-specific community.

You may also hear other ideas from survivors about how to cope with the smoking questions.

Practice Excellent Self Care

Continue to practice excellent self care for both your physical and emotional self. Treat yourself and talk to yourself the way you would hope others would treat you.

Try Affirmations

Affirmations may seem corny at first, but can be very effective. To counteract anxiety related to the stigma, you may try an affirmation such as "I am healthy and take good care of my body." "I don't deserve to have cancer and do deserve the best care available anywhere."

2

'You Must Have Been Exposed to Secondhand Smoke!'

The question about whether someone with lung cancer has been exposed to secondhand smoke is the same question; it simply shifts the blame to someone else. Otherwise the question is very similar, and much of what we just discussed pertains to these questions and comments as well.

Yet again, unlike the comments often made to people with cancers such as breast cancer (such as "I'm sorry, how can I help?), this question also focuses on defining a cause.

People with lung cancer don't want their friends to be epidemiologists (scientists who study the causes of disease) but rather friends and family members.

In some ways, this question may be less painful for the person living with lung cancer, but it is the same in that it takes the focus off of what you most need—support.

People with other cancers aren't usually asked about the lifestyle and behaviors of their relatives. People with colon cancer aren't asked whether their parents served them junk food as a kid.

But again, the majority of the time the question is asked by people with good intentions, and this can again be a teachable moment. With this question, it may even be easier to address the subject of people needing compassion instead of judgment.

Other Causes

The question about secondhand smoke does provide an opportunity to teach your friend about causes of lung cancer other than smoking or secondhand smoke. For example, radon exposure in the home, not secondhand smoke is considered the second leading cause of lung cancer overall.

That said, only do this if you plan on reminding your friend (for the sake of the next person he meets with lung cancer) that the role of a supportive friend is not that of an epidemiologist but rather a friend.

3

'My Uncle Had Lung Cancer and Only Lived 3 Weeks'

Questions and comments made to people with lung cancer go beyond smoking. Some of these include:

  • "Don't people usually die quickly from lung cancer?"
  • "Isn't having lung cancer like suffocating?"

Unfortunately, the nihilism associated with lung cancer also has negative repercussions. People have assumed that there's little that can be done for lung cancer, and sometimes don't seek out second opinions as they might with other cancers.

The truth is that the survival rate and treatments for lung cancer are improving. It's now not terribly uncommon to hear about someone being on hospice, and then seeing them healthier two years later after they learned about new treatments via the lung cancer community. The science is changing so rapidly that it's very difficult for even community oncologists to stay on top of the changes.

This nihilism also prevents some people from being screened for lung cancer. Even though screening has the potential to save thousands of lives each year, far too many people don't realize this potential.

Unfortunately, even with the changes, the survival rates for lung cancer aren't what we'd hope for, and comments about the survival rate can bring fear to people living with the disease. So how can you respond to a friend who makes a comment?

Remind Your Friend That You are Unique

When you hear of someone's uncle, or sister, or neighbor who didn't do well with lung cancer, first remind your friend that you are unique. Every single cancer is different on a molecular level, and each person is different in how they respond to treatments. You may wish to simply tell your friend that you are optimistic and hope she will support you in your journey.

Survival Rates are Improving

If your friend appears open to learning, you can share some of the advances that have occurred in treatment in the past few years, particularly in targeted therapies and immunotherapies. Lung cancer researchers are actually very excited at meetings.

You may wish to share that having stage 4 lung cancer isn't an automatic death sentence. At the end of 2018, a study found that people with a particular gene alteration in their tumors (and who received appropriate therapy; this is key) had a median survival rate with stage 4 lung cancer of 6.8 years, even with brain metastases.

Emphasize That Funding is Needed

Unfortunately, the lower survival rate of lung cancer relative to some other cancers may be tied to the first stigma we discussed. The stigma of lung cancer being a smoker's disease (and therefore, the unwritten belief that perhaps people deserve the disease) is reflected in the poor funding for lung cancer relative to other cancers. For example, for every dollar spent on lung cancer research, roughly $24 are spent on breast cancer, even though almost twice as many women die from lung cancer as breast cancer.

You may even want to suggest that your friend becomes an advocate. There are many more breast cancer than lung cancer survivors in the United States. Those of us who aren't living with lung cancer need to step in and advocate.

A Word From Verywell

The stigma of lung cancer, whether the association with smoking or the nihilism, is heartwrenching.

In some ways, it feels like we are going nowhere fast. A 2019 study found that people with lung cancer are experiencing even more stigma than in the past, and oncologists haven't noticed any improvement in the issue.

That said, the lung cancer community is growing and visibility is improving. A survey in 2018 found that the media is now reporting more stories about lung cancer, and many more patients are becoming connected with lung cancer organizations than in the past.

It's easy to get frustrated, but there is reason for hope. Think of what has happened with the stigma of HIV/AIDS. Stigma can be reduced. The best way to reduce that stigma is to be a face of lung cancer in the world and spread the word. Amazing lung cancer advocate and former NFL player Chris Draft (whose wife died from lung cancer at the age of 38) has said it best. People respond to hearing people's stories, not statistics. It's precious people, not numbers that make people open their eyes and respond.

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Article Sources

  1. Pacheco J, Gao D, Smith D, et al. Natural History and Factors Associated with Overall Survival in Stage IV ALK Rearranged Non-Small-Cell Lung CancerJournal of Thoracic Oncology. 2018. doi:10.1016/j.jtho.2018.12.014


  2. King JC, Rapsomaniki E, Rigney M, et al. Lung cancer stigma: A ten-year look at patient and oncologist attitudes about lung cancer. Journal of Clinical Oncology. 2019. 37(15_suppl):11619. doi:10.1016/j.jtho.2018.08.402


  3. ASCO Post. Survey Shows Increased Public Awareness of Lung Cancer Over Past Decade. 09/14/2018.

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