Why We Need to Tell Our Stories of Living with Lung Cancer

Often, when I tell a new acquaintance that I am living with lung cancer, I am met with disbelief. I am asked: YOU have lung cancer? Not enough of the public knows that anyone who has lungs can get lung cancer.

People aren't aware of lung cancer

Why is this the case? All women are aware that they can get breast cancer and all men are aware of prostate cancer. Why is lung cancer any different when more people die from it each year than breast cancer or prostate cancer combined?

Only recently have significant advances been made in the treatment of lung cancer so that people are living longer and better lives. People can only tell their stories of living with lung cancer if they are feeling well enough to do so. In the past five years, there has been an increase in patients telling their stories, both orally and in writing.

We need to tell our stories

Why is this so important? Think about what grabs your attention when reading through a magazine. Are you attracted to facts and figures? Or do you turn to a human interest story?

If you’re like me, reading about someone similar to yourself would definitely be the bigger draw. It’s easy to identify with a story about someone living with lung cancer but much more difficult to think that lung cancer statistics apply to yourself.

How can you share your story?

By telling their stories, people living with lung cancer show the world that anyone can get lung cancer, regardless of age, race, sex, or health status. There are many different ways to get started telling your story. Here are some ideas:

1. Join an in-person or online support group. This will give you an opportunity to first tell your story to people who are experiencing similar things and will definitely understand. Through questions others might have, you can decide if there are important parts to add to your story.
2. Share on your favorite social media channel with your friends and/or followers. While you already may have told your closer friends in person, sharing on a site like Facebook will allow others not in your closest circle to learn about your experiences as well.
3. If you like to write, consider starting a blog to chronicle your journey. Check out platforms like Wordpress, Tumblr, and Blogger to create blogs with no cost. If you don’t like to write, you can start a vlog (video blog) and tell your story orally. Popular ways of doing this include creating a YouTube or Vimeo channel.
4. Think about the community organizations you belong to that are important to you. Would you feel comfortable sharing your experiences at your church or synagogue? Or at a local high school? If you reach out to these organizations where you already know people, you might find great ways to educate the public.
5. Reach out to lung cancer advocacy groups and organizations. Through being part of a support group or joining the mailing list of a lung cancer advocacy group, you may hear about opportunities to share your personal experiences with one of the lung cancer non-profits such as LUNGevity, GO2 Foundation, LCFA (Lung Cancer Foundation of America) or LCRF (Lung Cancer Research Foundation). If you take advantage of an opportunity such as this, the advocacy group might end up showcasing your story on their social media, where it will reach people all around the world.
6. Connect with patient advisory boards. You also may hear about opportunities to share your story or be part of a patient advisory board for a pharmaceutical company. In addition to increasing public awareness by letting a pharmaceutical company share your story, you can also help research and development by participating in a patient advisory board to express your patient perspective and needs.
7. Tell your story within your local community. You can try reaching out to media in your local area to see if they would be interested in profiling your experiences living with lung cancer. Sometimes these local stories are picked up by larger media channels and thus reach larger audiences than your local area.

We all have a unique story to tell

If any of the above suggestions help you, fantastic! More opportunities once you get started will likely come your way. However, you might not be comfortable doing any or all the items on this list and if that is the case, that is totally fine as well.

Even if you only share your experience living with lung cancer with one additional person, you are helping create public awareness about the prevalence of lung cancer.

If you want to share your story, tell us more in the comments or you can submit a story that will be shared with the LungCancer.net community.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.