Language Matters

I’ve worn a lot of labels in my life. I was a “PK” in my younger years (a pastors kid) and I had a nickname when I was younger, a diminutive of my name. As I grew older, I have identified with different labels: daughter, student, employee, lawyer, advocate, wife, mother. These labels were often a reflection of a milestone, an accomplishment and sometimes they took a while to embrace. Often the anticipation of something (like parenthood) is very different from the experience in real life. Other times, a label would resonate immediately and the time before became almost blurry.

When I was diagnosed with stage IV metastatic breast cancer, a whole new world of labels opened up. All of a sudden, rather than anticipating and embracing a new label, I struggled with being labeled. For the first time, the language was not something to embrace, but something to avoid, to almost dread. Why?

Labels no longer apply

For the first time in my life, the labels that others wanted to apply to me didn’t resonate, didn’t apply to me, and were more about others than me. I think part of the problem is that I’d embraced and was given labels earlier in my life that were culturally embedded. In other words, there were already entrenched social mores that I internalized and there was no dissonance between what I was called and what resonated with me.

Whatever social mores were present at the time I was diagnosed, I still don’t understand. I am in the oddly unenviable position of truly defying most of the labels that are available. This is a pretty freaky experience. Even though I’ve not always felt a part of the “mainstream” culture for a lot of reasons, this is one of the only times I’ve struggled this much with the language that appears to be nearly universal.

Terminology matters

With this in mind, here are some terms that are no longer easy:

1. Survivor—this one is a doozy. Suffice it to say, this label does not resonate with me for a variety of reasons. I’ve written quite a few blog posts about this specifically and it’s a big one for me. I’ve also experienced other people insisting that this label applies to me when I told them it doesn’t, which has been entirely surreal. If I say a label doesn’t apply to me, that does appear to be the end of the discussion; however, I’ve been told that I cannot have input into what they call me on their social media.
2. Battle language of any kind—maybe it’s helpful to think about beating cancer and the idea of fighting and asserting oneself, at least at the beginning.  Then, you realize that once one has died, that means the deceased has lost the battle. I also think this concept divides patients and doctors even further because the doctors are seen as the generals and the patients the foot soldiers. Battle language is often used in the media and while I do think that most often no offense is meant, this is a huge area where education is necessary.
3. Journey—this one is oddly divided, it seems to me.  Some people embrace the concept and others don’t.  I don’t embrace it because it just doesn’t feel right.  New normal is also in this category for me. Nothing is “normal” about living with cancer.
4. Any other cliches like ... “everything happens for a reason” or “God never gives us more than you can handle.”

Wording is important

Language matters. Those of us dealing with terminal illnesses have heard it all. I really try to take it all with a grain of salt, especially if the speaker is someone I know well. Other days, I just can’t.