Woman is writing down her story

How to Deal with Advocacy "Fatigue" When Telling Patients’ Stories

On this lung cancer land, people often asked “Is it ok to share your story about lung cancer?”, especially when you want to be an advocate. We need to tell our stories to advocate for ourselves and others. Indeed, it has been proved that storytelling is the most effective way to inspiring, encouraging, and empowering lung cancer patients.

Advocacy can become fatiguing

Now there is a problem. We, the “seasoned” lung cancer patient, have told our stories many times and for many occasions. It’s inevitable to have a “fatigue” syndrome among lung cancer patients.

There are three types of audience that I encountered: 1) new lung cancer patients, 2) patients for a reasonably long period, and 3) the public. For the new and “seasoned” lung cancer patients, I have different strategies to tell my stories. The emphases are different. For the public, there are another set of rules. Below is my experience.

Words of encouragement to new patients

The new lung cancer patients are often confused, terrified, and depressed. Some patients are angry, and in my case, the brain was shut down to the point that I couldn’t think.

For new patients, we need first to give them hope. We are fortunate that lung cancer is no longer a death sentence. The survival time is quite long due to lung cancer research. I’m also lucky among the stage 4 lung cancer patients that I have 5+ years on my belt. So, using myself as an example, I first convey to the patients that they are not going to die, and the patients are going to be in this world for a long time. After that, I would tell the patients about my experiences and often encourage patients to advocate for themselves.

The take-away messages for new patients are, firstly, lung cancer is no longer a death penalty. Secondly, the patients have to work very hard with doctors to control lung cancer.

And to those “seasoned” lung cancer patients

The public referred to here is the group of friends, acquaintances, and strangers. I often call them “healthy people”. Usually, they are not familiar with lung cancer and are curious to know. It is tricky to talk to this group of people. I’m careful not to dwell on the details of lung cancer diagnosis, treatment options, biomarker testing, side effects, or prognosis. My focus is on two aspects after I briefly tell them about my lung cancer. The same thing happens for the “seasoned” lung cancer patients, although they know about my lung cancer.

The first point is the scientific facts about (lung) cancer. For example, 1) according to the USA research this year, among every two Americans, one has to deal with cancer sometimes in their life. Canada is the same. 2) The death rate of lung cancer is higher than the total death rate of breast cancer, prostate cancer, and colorectal cancer combined, but the amount of research funding for lung cancer is way lower than any above cancers. The above points are directly relevant to “healthy people” and lung cancer patients.

The other part is about my advocacy, such as early detection, stigmas, clinical trials, biomarker testing, encouraging and inspiring the newly diagnosed lung cancer patients, organizing different lung cancer support groups and conferences. Up to the nature of the audience, I will talk about appropriate topics.

The take-away messages are 1) the dire situation with lung cancer not only for lung cancer patients but also for “healthy people”, and 2) a lot of advocacy work can be done to end lung cancer.

Advocating for public awareness

This group of people is unique, like politicians, potential donors, or supporters for fundraising and research and advocating organizations. For example, in October, I have to convince the provincial government to pay for the lung cancer drug in targeted therapy, which has been proved by FDA and Health Canada. Note that in Canada, it’s the provincial government’s responsibility to pay for the drug costs. I first summarized the story related to the issue. It’s also included the personal experience aiming at the importance of the provincial government to pay for the drugs. My story also demonstrates how the policy will impact my life and the lives of other patients and caregivers.1

Another type of story is the most difficult one for me, that is writing a 60-second persuasive speech, also known as an elevator pitch.2 My personal story is still important. It establishes my credential and motivation, but the focus is on why I believe specific policies or actions or inactions are essential. The delivery of the messages should convey my competence and trustworthiness, and it has to be within 60-second. It takes a lot of practice, and it’s not easy.

Know your message and tailor it for your audience

The take-away message is that advocating issues with a tailored personal story makes the advocacy issues more convincing. Storytelling is not as easy as I think if I want to tell the story effectively. Through these several years’ practice, I think it’s necessary to prepare several versions of the story, and each time, tailor it as needed.

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