The first time I met with my representatives was in Washington, DC in 2018. It was part of a grassroots movement called Life & Breath Rally. We were each paired with another advocate and “cold called” our Congressional representatives, which basically meant we went to the Capitol and knocked on doors.
The first Congressional representative we spoke to was actually in the hallway of the Capitol. He was the representative of the advocate I was paired with, so I let her do all the talking. He was dismissive of our ask. I ended up writing them a note after I got back home, explaining how disappointing it was to not be heard. They actually responded to my note, which made me feel better about the interaction.
Thankfully, everyone else we spoke to that day was empathetic and accommodating, and it was an empowering feeling. Since then, I have met with many representatives and have never had a negative experience like my first, so don’t let it scare you. For the most part, people are very receptive and interested to hear my story.
It can be intimidating to meet with your legislators for the first time. Here’s what to expect: generally, you will meet with legislative aides, though sometimes it might be your representative. When meeting, be sure to explain where you live (they will want to confirm you are one of their constituents), what brought you into this meeting today, and why the issue you care about should matter to them.
This is the story I tell: I was in a car accident, which led to the incidental discovery of a tumor in my lung and my diagnosis of lung cancer. I had a lower left lobectomy within a month of my diagnosis and have been NED (no evidence of disease) ever since. I have been lucky, but many aren’t. I have friends who are in treatment and can’t travel to advocate, so I have to be the voice for them and others still fighting the disease. You can be young, healthy, and active, and still get lung cancer. I am living proof. Please prioritize policy that will benefit those impacted by lung cancer.
After my meetings, I send handwritten thank you notes (I am old school!) and post about our conversations on social media, tagging them. These measures are important next steps. To me, they say, “Don’t forget me. Don’t forget my story. It’s important.”
If you are anxious about telling your story, know that is completely normal. When I first started sharing, it was difficult to even say “I have lung cancer” without bawling. However, the more you practice, the better you get. Start with telling your family and friends. They might get bored of hearing it so many times, but the repetition will help you feel more comfortable and natural.
Something that also helped me is putting the experience to scale. Most of the time, these meetings have 1-5 people in them. After I realized this, it felt less like public speaking and more like a conversation. I speak in front of more people as a lector at Sunday Mass. I could definitely do this.
You can also link up with someone else affected by lung cancer in your area. As they say, there is strength in numbers. When I was paired with another advocate for my first experience in DC, it was also very helpful because she had experience and could show me the ropes of how to do it.
The first time meeting with your legislators will be nerve-wracking, but you will get better and it will get easier. The biggest thing to remember is that this is your story. No one knows your story better than you. No one can question or rebuke your thoughts, your feelings, or your actions because at the end of the day, it is your story.
If you are thinking about getting involved in advocacy, then you are ready. Although you might think you will have only a small impact, you really never know the small impact your story might have on others. And those small ripple effects that you will create will be felt regardless of what you choose to share or what area of advocacy you decide is the best fit for you.
I look forward to crossing paths with you, all my fellow advocates, someday.
Interested in learning more about lung cancer advocacy? We have the tools to help you get started. Join the LUNGevity Action Network to take real steps towards improving lives and outcomes for people with lung cancer.