Illustrating member perspectives on life with chronic illness

Posted November 17th, 2017 by

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge.

When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community.

Battling cluelessness and confusion

Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.”

Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He remodeled a bathroom, built a stone patio, removed an above-ground swimming pool and more. “I was just trying to figure out how not to take my anger out on others. That’s when I realized that PD may win the war, but I can fight the battles and do that to the best of my ability every day.”

How does Tommy describe life with Parkinson’s disease? Take a look…

Tommy has been a PatientsLikeMe member since 2007, and has been connecting with others like him for ten years. “I found a community of wonderful caring people. We were like a small rural community even though we were spread out across the world… This is an isolating disease that makes some people embarrassed about how their body moves, and reclusive, so I make sure to welcome new members.”

Knocking down barriers

Larry Tilson is a PatientsLikeMe member living with ALS. He shared his story with us by typing with his eyes using Eye Gaze technology. “My first sensation of not being able to move came in the winter of 2007, when I started having trouble buttoning a shirt and tying my shoes. It felt like something was restricting my movement.”

Gradually, Larry says the feeling progressed from his hands to his lower arms, then to his back and core muscles. “It feels like I am pushing through an ever-thickening invisible substance.”

Larry is in a different place now than the initial disbelief he felt when he was diagnosed. When he began to research he discovered other people living with ALS were living productive lives. “That’s when I decided to accept the fact that I have ALS and fight to stay productive. I don’t lie down. I try each day to find a way to enrich someone else’s life in some way.”

Take a look at how Larry describes life with his condition…

What’s Larry’s focus these days? “I try to knock down a barrier, help to change a rule, right a wrong, or contribute to science in some way like sharing my information on PatientsLikeMe. That is what makes me smile. To touch someone else’s life in a positive way, whether they know it or not.”

Interested in seeing the rest of this illustration series? Join the PatientsLikeMe community and view the rest of the images in the forum.

Share this post on Twitter and help spread the word.


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?

Share this post on Twitter and help spread the word.