Are you a feminist? Are you a Previvor?

Last week, I had a good conversation with a gentleman about my quest to help women take ownership of their BRCA data.  The word ‘feminist‘ came up as we talked.

I began to think more about the words we use to define and name ourselves.  

Take the word Previvor for example.  This word have been used by women in the BRCA community since 2000, after a challenge from a community member who said she “needed a label.”   Yet, many people within our community – and the larger breast cancer community – have strong negative reactions to this word.

And what about the word advocate versus the word activist.  Do they have a different connotation?  Can I call myself one or the other?

I wonder whether the word ‘feminism’ should to be included in a conversation about BRCA, when BRCA affects both women and men.  Are we advocates, activists, or even BRCActivists?  Is it appropriate to use the word ePatient if many within our community perfectly healthy and want to stay that way?  Are we brave?  Are we fearful?  Or something in between?

And I also think about how we define participation for community in new ways.  Do we need permission to call ourselves citizen scientists if we seek to move beyond breast cancer awareness to seek a more direct connection with research?  Or is this just a new buzzword for patients who participate in research studies?  What words should we be using to name ourselves in the context of history as we make choices about our bodies and our genetic information?  What is in a word?

I think we find our power in who we are.

I like writer/director Joss Whedon’s take on the word feminist and the words we use to define and label ourselves….


  1. My blog––focuses on the need for feminism in the BRCA+ community. Breast cancer advocacy has it’s roots in second wave feminism and BRCA+ women need the political empowerment and critique that only a feminist lens can provide.

  2. Thank you Andrea for introducing me to the word previvor. Without the history and potential baggage associated with knowledge, it made crystal clear sense to me. I thought feminism meant equal opportunity. In this context perhaps the word could be positioned to be about choice, the choice to know, to act or to not know and that choice was equally granted.

  3. Callie – I have had the chance to look through your blog and I am REALLY impressed. Great writing!! Thanks for taking time to read and comment (( :

  4. Brent – thanks for taking time to stop by! It was great to talk with you ( : Yes, I do the word ‘Previvor’ is all about choice. And trusting/empowering the individual to make informed choices about their bodies and their futures.

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