13 posts tagged “stigma”

Speaking out for Lung Cancer Awareness Month: “We’ve got to get rid of the stigma”

Posted November 14th, 2017 by

November is Lung Cancer Awareness Month, and we’re sharing members’ encounters with stigma and the automatic association with smoking. Lung cancer rates are increasing among nonsmokers, and some members of your community are raising their voices. One concern? The assumption that lung cancer only affects smokers could delay diagnosis and treatment for anyone (especially never-smokers) with symptoms. Some say that stigma also affects funding for lung cancer research.

Lung cancer rates rising among nonsmokers

As many as one in five people who die from lung cancer in the U.S. every year do not smoke or use any other form of tobacco, according to the American Cancer Society (ACS). “In fact, if lung cancer in non-smokers had its own separate category, it would rank among the top 10 fatal cancers in the United States,” the ACS says.

Two studies presented at the 2015 World Conference on Lung Cancer showed that lung cancer rates among nonsmokers (especially women) have been increasing over the past decade.

The ACS says that avoiding or quitting tobacco use is still the most important way people can reduce their risk for lung cancer, but researchers have found several other causes or risk factors, including:

  • Radon gas
  • Secondhand smoke
  • Cancer-causing agents at work, such as asbestos and diesel exhaust
  • Air pollution
  • Gene mutations (as PatientsLikeMe Researcher Urvi recently pointed out, some of the latest clinical trials for lung cancer are looking at the role of genetic mutations)

Member Donna on stigma (even in doctors) and raising awareness

Member Donna (LiveWithCancer) was diagnosed with stage 4 lung cancer in 2012 and outlived her poor prognosis. She says she’s trying to raise awareness of lung cancer among nonsmokers and advocate for more research as a way to honor the memory of those who’ve died.

“I was a former smoker but I had quit before I was diagnosed, and it is absolutely heartbreaking to me how many [non-smoking] people were missing the diagnosis because even doctors — many doctors — still have the attitude that smoking is the only cause of lung cancer,” she says. “I’ve lost 20-year-old friends to lung cancer that were never around cigarette smoke at all, even as secondhand smoke.”

Donna says that a person with an unexplained cough and a history of smoking, like herself, is more likely to get a CT scan checking for lung cancer than someone who has not smoked but has possible symptoms.

She has a friend who was in his 40s and was a cyclist who biked “many, many miles every week” and started experiencing unexplained symptoms.

“He never, ever smoked and so it took the doctor a long time to finally look at whether perhaps his lungs had an issue,” she says. “And on his medical records, his wife told me, they wrote ‘patient claims he never smoked.’ They could not even accept that he was telling the truth.”

Her hope in spreading awareness? “We’ve got to get rid of the stigma, first with medical personnel so that they won’t ignore symptoms, but then just among the public because people just … they’re just not nearly as sympathetic with somebody that’s got lung cancer as they are with somebody that’s got breast cancer or any other cancer, really.”

In the lineup of different kinds of cancer, smoking has the strongest link to lung cancer, but researchers say that it can cause at least 14 types of cancer (as well as heart disease). So concrete stereotypes like “smoking=lung cancer” and “lung cancer=smoking” are flawed — and there are many health reasons to quit tobacco use.

Member Jacquie on “putting stigma aside”

Member Jacquie (Jacquie1961), who’s part of the 2016-2017 Team of Advisors, has talked in the forum about how people’s first question when they hear “lung cancer” is “Did you smoke?” or “Do you smoke?”

While those questions used to make her mad, now she takes them in stride and tells people that she used to smoke but quit 17 years ago.

“First and foremost, you have to put that stigma aside and not be embarrassed because I wasn’t,” Jacquie says, noting that other environmental factors play a part in lung cancer risk, such as air pollution’s role in the surge of “non-smoking” lung cancer in China.

“I am pleased to see more attention lately on new breakthroughs for the treatment of lung cancer,” Jacquie mentioned in the forum in 2015. “I think that getting rid of the stigma that it is not just a smokers’ disease is the first step in getting attention.”

On PatientsLikeMe

Join a community of more than 7,000 people living with lung cancer. How are you observing Lung Cancer Awareness Month? What would you like the public to know about the disease and related stigma?

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From “What happened to you?” to “You’re so inspirational”: 5 ways Anne navigates stigma as a wheelchair user

Posted July 31st, 2017 by

Member Anne Thomas (AnneBT), a civil rights attorney turned professional storyteller, has shared her stories with everyone from elementary schoolers and medical students to corporate leaders and World Bank officials. Anne sustained a spinal cord injury in a car accident at age 18. Her wheelchair is often the first thing people notice about her, so she’s had to find quick and clever ways to navigate stigma. We asked her to share some common questions and comments she faces and how she handles them (hint: humor helps).

stigma as a wheelchair user

In Anne’s own words…

Stigma around disabilities and chronic illness abound in our culture. People often have no idea of the unconscious bias they communicate through their questions or reactions. As someone who has lived with a disability and chronic illness for over 40 years, I’ve seen it all. In the deep discomfort of the 1970s, people would ignore me and talk to the person I’m with (as if I’m not there) or ask me questions to satisfy their curiosity: “What’s wrong with you?”

I’ve also enjoyed the more sophisticated post–Americans with Disabilities Act culture, where people now understand the emphasis is on the person – not the health issue – and have stopped asking rude and intrusive questions of people they don’t know.

Throughout the years, I’ve kept my cool because I feel like I am an ambassador from the disabled and health community and I don’t want to fulfill any stereotypes of the bitter cripple. Instead, I’ve always used humor to amuse myself and help others see the absurd assumptions inherent in their questions.

Here are my top 5 stigma moments and some ways I’ve responded or reacted:

  1. Eyes wide with disbelief, people say to me, “You live alone? Have a job? Drive a car?”

My reply: “Why, yes. I’m a regular superhero!” I calmly dive into the nearest phone booth to do my activities of daily living.

  1. Staring at me – looking a bit dismayed – strangers ask, “What’s wrong with you? What happened? How long ago was it? Was it your fault?”

So I might dodge their obvious curiosity and declare my flaws: “Well, I tend to procrastinate and I peel my finger nails.” Or offer even more perspective, like: “Before I answer your questions, will you tell me about the worst thing that ever happened to you? What did that feel like? Was it your fault?”

  1. Eyes wide with shock, people exclaim, “You were married?”

When they learn that I divorced, they always want to know, “Were you disabled before you got married?” (Yes.) “Well then, he knew what he was getting himself into.” (Like I’m some kind of ‘situation’ that would justify divorce if I’d been able-bodied when we married.) I’m thinking, “So much for the vow of ‘in sickness and in health.’”

  1. The doctor raises his head, looking surprised at my technical answer to his question and asks, “Did you attend med school or grow up in a medical family?”

Me: “Nope.” (I have just learned to use medical vocabulary to ensure my doctor respects me, knows I’m intelligent and treats me like an equal partner in making decisions about my body.) I am passionate about having the best, fullest life I can – and that means my health has to be stable. I want to know everything I need to know to take exquisite care of my body.

  1. And the big granddaddy of social stigmas… “You’re amazing. So inspirational!”

My reaction: “Just for living my life?!” Living with health challenges is not the worst thing that can happen. People cope with all kinds of hardship every day. Some are about health, others are about loss or violence, poverty or abandonment.

Everybody has something – or many things – to overcome in life. People managing chronic illness, disease or disability are no different than the rest of the population. We’re just trying to get through life the best way we can, and a good sense of humor definitely helps!

What sort of stigma have you faced? Join the community to share any anecdotes or tips for managing stereotypes and unwanted comments.

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