World Lung Cancer Day 2019: Facing Stigma
August 1st is World Lung Cancer Day. While many life-changing advancements in research and treatment are worth celebrating, lung cancer is still disproportionately funded for how many lives it claims yearly, and there is still a ways to go. Many in the community face difficulties physically, emotionally, and socially, when sharing a diagnosis, and throughout their journey with lung cancer. These difficulties are often faced by caregivers or loved ones as well.
What do we say to stigma?
Stigma is a topic frequently discussed and often on the minds of many, due to its prevalence and impact on the lung cancer community. Stigma can manifest in words like “Did you smoke?” or actions and can come from friends, family, doctors, and complete strangers. The stigma of lung cancer as a “smokers’ disease” can affect life, mental health, and even funding or fundraising for lung cancer research.
Four responses to stigma
Looking for ideas on how you can respond to stigma? These are some ways our advocates stop lung cancer stigma in its tracks. Many responses focus on taking the focus off smoking and onto what should be known: anyone can get lung cancer.
1) The quippy one-liner
Ivy: I tell people that all you need are lungs to get lung cancer.
Dusty: No matter what type of cancer a person has, everyone deserves compassionate, equitable treatment and care, regardless of their smoking history.
Samantha: I’ve just always replied there are several ways to get lung cancer. Anyone can get it.
Sandy: Although smoking is the cause of several diseases including lung disease, with lung cancer all you need are lungs.
2) Educate and enlighten
Alisa: The stigma really hurts us and limits research funding which equals fewer lives saved. Period, end of story.
Lisa: I take the correct then educate approach. My new favorite thing to say when I’m speaking about lung cancer and telling my story is, “Before my own lung cancer diagnosis, the only thing I knew about lung cancer was what I learned in elementary school health class.”
Dave: I hate the stigma, so I feel like all I can do is try to educate people. As much as I want to respond with something like, “Why would you ask me if I smoked? You’re implying that it’s my own fault I have lung cancer. Would you ask someone with colorectal cancer if they ate a lot of red meat – implying that it’s their fault?” I usually don’t, but that’s how I feel about it. I usually give them some version of this: “As many as 20% of people who die from lung cancer in the US every year have never smoked or used any other form of tobacco. This translates to about 30,000 Americans in 2018. In fact, if lung cancer in non-smokers had its own separate category, it would rank among the top 10 fatal cancers in the US (and affects women non-smokers more than men).”
Lysa: I always tell them, “There are many causes of lung cancer and it really doesn’t matter how we got it, we all deserve compassion and good treatment options.”
Yolanda: As a caretaker and advocate for my mother who died from lung cancer, it has been a battle with some people. I recall a friend gave me the, “Oh that’s why your mother died of lung cancer because she smoked…” The bottom line is, losing a loved one from this disease affects everyone…We need to look past the how and focus on how more people (smokers and non-smokers) can beat this. My organization Mae’s Breath Foundation specifically has our tagline as “Breathing Should Not be Discriminatory” and that is a fact!
Donna: I tell everyone that all it takes is lungs to get lung cancer. I usually add that, especially if you’re not a smoker, if you have symptoms that could indicate lung cancer, to insist on a scan, because doctors rarely consider the idea that you could have lung cancer until they have exhausted every other possible avenue…which often means the cancer has had a chance to really grow, spread and take hold.
3) Flip the conversation
Jill: I’ve struggled with this one as both a caregiver and patient. It depends on who asks. If it’s a random person I’ve more recently responded with the question, “Why do you ask?” in an honest, curious way. I truly want to know why they’re asking that question. They’re usually speechless so I take that opportunity to educate and then explain why their ‘innocent’ question can be harmful. If it’s someone who point blank says something about you can only get lung cancer if you smoke, I usually ask why they think that and/or where they learned that?
I’ve definitely learned over the years not to get mad as it’s just ignorance. But I also never talk only about smoking in the same sentence as lung cancer. I use risk factors as there are many and takes the focus off smoking.
4) Show not tell
Denise: I tell them, “Yes, tobacco can be a factor in lung and 29 other cancers. Is there a reason you’re only singling out one? Why not breast cancer or prostate cancer?”
This is a piece of performance art I designed in collaboration with Debra Golden to highlight the other 29. There is no lung cancer highlighted in the piece.
Why do people ask?
Some community members theorized as to why people may ask stigma-packed questions like “Did you smoke?” when a lung cancer diagnosis is shared.
One member shared, “It’s a coping mechanism maybe…people think if they don’t smoke it can’t happen to them,” and another similarly wrote, “I think some people ask because they love a smoker that they want to stay healthy, or they know a non-smoker that had [lung cancer], and maybe they are just curious.”
What do you think? How have you responded when faced with stigma in the past, and what ideas do you have for the future? Share your story.