Advocacy. What is advocacy?
Adiba demonstrates one element of advocacy, testifying before elected officials here …
Does this seem daunting?
Not everyone will testify before Congress in Washington, D.C., although I have to say I that’s one of my goals! Each and every person can advocate in their own ways; the quiet, unacknowledged, and ongoing efforts are often the most effective and the least noticed.
Here’s some options, in no particular order:
- Ask Questions. This could be questions about where funds from pink soaked merchandise are going, or questions about your own treatment, or questions at your cancer center about other benefits that might help you. Asking questions, getting information, this is advocacy!!
- Wear a Metavivor shirt or other paraphernalia. Personally, I made a shirt and tote through Zazzle that says “Ask Me About Metastatic Breast Cancer” and I’m planning to wear and carry them all month to hopefully start some conversations.
- Share your story. I think this is one of the most effective ways to advocate. For anyone looking for a good place to start, I like this group: https://itsabouttimemets.com.
- Talk to someone you know about your experiences MBC. While sharing your story with a wider audience is helpful, I believe the one on one conversations may be the most impactful. A friend or someone who has a connection to you will be listening differently than a stranger.
- Post on social media about issues you are passionate about during BCAM or otherwise. You never know how your story about a scan or an infusion or your pain or insomnia will resonate with someone, a friend or a friend of a friend. Being transparent, within your comfort zone, about the human struggle of living while dying is profoundly impactful.
- If someone asks for a person to speak about the MBC experience, say yes! When people know that you are a person living with MBC and they ask you to speak about it, understand that you may be the only one they know. If you are nervous, ask for accommodations like being interviewed with the questions sent beforehand or taping yourself at home and not being live. Your voice, your face, your story, YOU can make an impact!
- Participate in legislative advocacy. Meetings with legislators is a big ask, but you can also write an email or fill out a comment box online or write a letter. Communicating with legislators in writing about specific issues can be a great way to have your voice heard without ever having to talk to someone.
- Attend an event during BCAM. Hey, I get it. Pink soaked events during BCAM aren’t fun for those of us who are metastatic, but your presence there could help start a conversation. You asking people about what they know about MBC could help educate an organization. You showing up and being the only one not decked out in pink could also help start a conversation that, who knows, may lead to something amazing.
- Support a newly diagnosed person. Even if the person you are supporting has early stage Breast Cancer, you are putting a face on those of us metastatic cancer-havers and that’s huge. The personal element means it will become more important. Those of us who have been through that initial chaos are uniquely qualified to help others walk through that.
- Support someone else’s project. There are so many amazing people with projects and everyone needs extra hands. If you have an hour a week or even less, you can fit into someone’s project and make a difference without needing to be out front, if that’s your preference.
Advocacy is so important and everyone has a part to plan in successful advocacy. You don’t need to be flashy or have good ideas or speak in front of others, you just need to be open to the possibility of sharing what you know when there is fertile ground. The more you think about it, the more open to it you are, the more opportunities will come your way!
And now you know more about Advocacy!