What do I want to be called?

I posted last week about why I don’t want to be called a survivor.  That begs the question, what do I want to be called, what label do I embrace now that I’ve had nearly two years of living with stage IV metastatic breast cancer under my belt?

I’ve had a lot of labels in my life … Daughter, Sister, Wife, Aunt, Great-Aunt (this one makes me feel old), Mother, Sister-in Law, Lawyer, Guardian ad Litem, Attorney ad Litem, Volunteer, Student, Employee, Employer, Business Owner, Board Member, Advocate … each of these labels describe one or more part(s) of me and define the different relationships that I have with the people in my life and some of the positions I’ve held at various times.  Some labels are forever, some are for a time.  Some labels carry more weight and significance than others.

For those of  you who know me, precision/accuracy is super important to me.  For instance, it confuses me when people outside of blood family are labeled with “aunt” or “uncle” or “sister.”  Yes, I’m revealing my midwestern roots.  Living in Miami is often very confusing when I try to figure out how people are related to each other, only to find out that there is no blood relation.  I get that sometimes labels are imperfect and trying to find the right label for something important and valuable can be challenging.

When I started participating in the breast cancer support groups online, I came across new labels.  “Survivor” is the label with probably the most baggage for many.  “Pink Sisters” also seems to be a popular one, along with “Breasties,” however, these labels exclude the men who have breast cancer as well.  “Metsters” in the Stage IV groups is a little more prevalent and is a bit more inclusive.  Some people resist the label “patient,” others embrace the fighting metaphor and like “Forever Fighter” or “Lifer.”  At a recent conference I attended, a patient advocate was given a ribbon that had the label “Survivor;” she promptly crossed out the three (3) first letters and added “Meta” to make the label “Metavivor.”  Some of the breast cancer advocates from Metavivor (the amazing organization which raises funds for metastatic research) were recently featured on Good Morning America and the “Thriver” yoga pose was introduced. Many of the breast cancer support groups will label themselves a “tribe” and thus the members are members of that tribe.

I believe that the intensity of the shared experiences in the breast cancer “community” affects the selection and perpetuation of labels. There is an instant camaraderie that cannot be explained easily.  Even if we never meet some of the people we “know” online, that does not mean that the relationship is any less intimate (in some ways).  Having a label helps to define and explain what is hard to explain to those outside #Cancerland.

For the situations where a label is desired, I am comfortable with a few of the examples I described above.  I use “metster” when I’m talking to other stage IV men and women.  This label seems to have the least controversy and it’s catchy and its relatively inclusive.  I typically ask to be labeled a “thriver” when I’m dealing with the public or am in the company of early stagers because it rhymes with “survivor” and I think has a positive connotation, somewhat in the same category of survivor, that also distinguishes me from the early stage men and women.

However.

I don’t always feel like I’m thriving.  Some days I’m the opposite of thriving.

I also worry that endorsing this label puts me into the category of whitewashing or “pinkwashing” a terminal illness.  It is problematic and doesn’t work for everyone.

All of the labels are imperfect.  None of the labels fully describe me or any individual specifically.

At the end of the day, I am Abigail. I am my own person.  I am more than the labels.  I am more than the relationships I have with various people and institutions.

I am much more than cancer.  Yes, I have cancer.  I will always have those darn rogue cancer cells in my body, but this experience with breast cancer does not define me as a person.

Overall, I do identify with thriver the most.  Through effort and intention and focus and lots and lots of support, on the whole, I am thriving.  I am also surviving, today, in this moment.

Just don’t call me a survivor.

 

3 thoughts on “What do I want to be called?

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