BY Abigail Johnston



By Abigail Johnston
Edited by Barbara Bigelow

Often, patients with MBC ask how they can become part of the MBC Advocacy world. I can see clearly that there is a need in our community to have a path, a path towards offering input, towards making advocacy personally satisfying.
 I’ll be writing about this more in the future as we develop some curriculum around this topic at Project Life because it’s clearly needed. I envision something more than just a webinar, but a workshop where the attendee is guided towards options that might fit them. I’ve had this discussion with quite a few different people as each one attempted to put together something that looks like a life with MBC. It’s so variable and definitely not one size fits all.


Here’s my initial thoughts (big picture) about breaking into advocacy:
First, know yourself. No one comes to MBC a blank slate, we all have lives and experiences before the diagnosis. Knowing our strengths, what we bring to the table outside of our specific story, that’s key to finding your niche in advocacy. Beginning with the end in mind and setting goals before you start researching or spending time with one organization or another can help keep you focused on what is the most effective use of your valuable time.
Second, find a mentor who is doing the type of advocacy you think you want to do and stalk them. I say that a little tongue in cheek, but I’m not really joking about that. Find the person you want to emulate and watch how they do it. Once you think you have an idea of what they do, ask them to lunch, ask them for coffee, virtually or not, and get to know them. I can’t speak for anyone but myself; at the same time, I would be so very surprised if you don’t get a response and quality time with the advocate you have targeted. And don’t forget to ask your mentor who else you need to know and ask for introductions. Talking to someone directly about how they got into advocacy is probably one of the best ways to map out a plan for emulating them or creating your own path.
Third, research attending advocacy training programs. While it is not mandatory to attend any advocacy training program (outside of a few select positions), getting connected to different organizations can be really helpful because of the people inside those organizations. The actual training is good, but the relationships are the best thing that I’ve gotten out of the trainings I’ve attended. Yes, I know that the classes are often small and not everyone gets to participate, but exploring one or more programs is a good way to get involved. If you can’t attend for one reason or another, tell them what is creating challenges for you and you never know, they just might find something for you.
Fourth, don’t forget to look locally. Yes, there are the big organizations like Living Beyond Breast Cancer or the National Breast Cancer Coalition, but there are also local non-profits or advocacy programs at local hospitals and in local communities. Not everyone can be on the big stage at the big conferences but we can all do something for someone.
Fifth, be what you wished others would be. My own experiences getting into advocacy weren’t simple or easy. There were many points where I wished things could have gone better or people would behave differently. While clearly we have a long way to go, I’ve tried to take those experiences and do things differently as I’ve moved into doing various pieces of advocacy. The outpouring of people (in the picture or not) who offered to help the people who were struggling “break into the in-crowd” warmed my heart.
 Let me just say that I’m not trying to minimize the struggle to find one’s place in advocacy and I want to learn from others as to what barriers are there or what other tips/tricks you’ve found in your search for a niche.
Stay tuned …
Barbara Bigelow, Vice President, METAvivor Research and Support, Inc. 

METAvivor is always looking for volunteers and advocacy volunteers. Our volunteers and advocacy volunteers are trained once per month by us with Advocacy training beginning in early August and leading up to the Stage IV Stampede. If you're interested in becoming a volunteer for METAvivor, please reach out to us at  [email protected] to learn more.


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