Thursday, March 7, 2019

Who We Are

I've been thinking a lot about identity lately.

I mean, what it means for us to be cancer patients. How that affects the way we see ourselves, and the ways others see us.

I did a short piece for Blood-Cancer.com called "Not Your Typical Blood Cancer Patient" last week.  It's about how different we (blood cancer patients) are, but how much we have in common, too. One of the things I talk about is how "typical" cancer patients are portrayed. I had seen something on Twitter a few months ago. People were using the hashtag #badstockphotosofmyjob. They were searching online for stock photos (those free photos that are supposed to show a generic person or situation) for their jobs. Try it -- search for "Nurse stock photo" or "teacher stock photo" or "cook stock photo" or whatever you do for a living. Sometimes stock photos show people in situations that are a lot nicer than their reality -- teachers don't smile all the time.

So I was really interested in what "cancer patient stock photo" would show me. It was mostly women, almost all either bald (from chemo) or wearing a scarf or covering on their head. And they usually had a really determined look, too, though occasionally, some of them were sad.

Stock photos don't really show the reality, but they're supposed to be common enough that people can recognize them. You know a stock photo of a teacher is a teacher, because that's how we think of teachers.

So is that what people think about when they think of cancer patients? Women, bald (and vulnerable), but determined (and sometimes sad)?

And if that's how they think of us, how does that affect the way they treat us?

And if they treat us a certain way, how does that affect the way we see ourselves?

I saw a post recently on Facebook from a Follicular Lymphoma patient whose mother was acting like she didn't believe that her daughter (an FL patient) had cancer. She sent her an article about people over-reacting to illnesses.

That happens a lot with FL patients -- a lot of us don't look like the stock photos, so we don't have a "real" cancer. And if that's the case -- people don't think we're seriously ill -- then they don't treat us the way they might treat other cancer patients -- with care and compassion.

And that can mess with the way we see ourselves.

My identity -- the way I see myself -- has changed over 11 years. I still call myself a "cancer patient." I've never had a Complete Response on a scan. I still see an oncologist 2 or 3 times a year. I'm a patient.

I also haven't needed treatment in 9 years. That's pretty un-patient-like.

So I struggle sometimes with who I am, and how cancer has made me that person, and how it has changed me. And how much others' perceptions of me have kind of added into the mix.

Maybe "struggled" isn't the right word. "Wrestled"? I think about it a lot.

And I think maybe the important thing about it all is that we make sure that we, the patients, are the ones to decide who we are. Not doctors or family or friends. It has to come with us.

I'm going to continue wrestling with this. I don't know if I'll ever "figure it out," but I'll keep thinking.



2 comments:

Anonymous said...

Excellent commentary.
No one thinks I really have cancer.
Sometimes I wonder if I really am sick, at the same time knowing I have CANCER! (I know I am sick,having gone through treatment last year).
Thank you, as always, for your thoughtful blog.
Donna

Anonymous said...

Bob,

Wow. Big question here. Identity is tricky. And "cancer patient" or any " " for that matter, is a weird label. Personally, I was doing a lot of identity thought just prior to my diagnosis, which continued throughout treatment. One wired thing to note is, it's easy to stamp that "cancer patient" label on once you enter that club, but it doesn't really serve as an identity, does it? Especially if it goes away. I remember it being really easy to have a "loss of identity" when I got that NED scan. It was like, ok, I've been a "cancer patient" for a while, and now I'm not. What's that all about? Now what? So, I kind of gave up on "cancer patient" as an answer to identity.

And, the more I thought about it, identity isn't anything that can be described. To your observation with stock photos, any stock imagery or even generic description, doesn't serve to define the depth of identity. Identity, in terms of definition of self, should not be something you can describe yourself or someone else with. There are no words or imagery to capture that. I think it's more fair to say your identity comes through in your actions. And without getting to far in the weeds, your actions come from your belief system. To believe is to be-live, to live according to what you believe, and that is the only place I feel you can find identity.

So, dad, cancer patient, husband, sales person, 6' tall, white guy, wearer of really comfy hoodies, these may be accurate descriptions and that serves a purpose, but these are not identities.