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Tuesday, October 27, 2015

What's a girl with cancer allowed to be?

So I've been quiet these few weeks. It's been something of an odd October -- things feel hushed, regarding both pinkwashing and my own anxiety. (Though we're not through October yet, so there's still time for a panic attack...or five.) Mostly I've been reflecting on where I am now. And the answer is, I have no idea.

I had an experience recently that was deeply troubling, but also instructive. I was in something of a focus group, in which participants were asked to describe cancer patients in a single adjective. (I was the only patient in the room, but certainly not the only person who had met someone with cancer.) The answers were collected and combined into a word cloud, and projected onto a screen. When I saw the product of the exercise, my jaw dropped.

Up on the screen, bright and large, was the word "Desperate."

Desperate, as in hopeless. Desperate, as in nothing to lose, as in not being ruled by rational thought. It's an antiquated idea, and only a few steps removed from doctors who wouldn't tell patients when they had cancer, for fear that simply couldn't handle it. Patients have worked hard over many decades to make sure their voices are heard and respected in the conversation; this felt like a punt back to 1960.

I tried to challenge it. I was upset, and all could say was "No," not right, rethink this, all of you. Before I had a chance to really collect myself and explain why this picture of patients was not okay, others in the room leapt to defend it, saying that, surely, were they in that position, they would feel desperate.

Not: "Patient in the room, tell us how you feel," but "be quiet, I know what I'm talking about." I am sitting there telling them that was not my experience, nor one I have often come across in my years as a cancerado. The people in the room were clinging so hard to this assumption that they couldn't hear me. They also couldn't hear how personally painful that word was to me.

It wasn't the first time I'd encountered a strange push back when sharing my story with people who otherwise seemed open to hearing it.

Since being diagnosed with breast cancer in 2012, I've realized there are certain acceptable story arcs for us breast cancer patients -- and for me, it really comes down to two possibilities: the inspiring, and the desperate. One is lionized and lauded in the media, the other is hidden and feared. And when you don't fit into one of those categories, people have a hard time with it.

During my treatment in 2012, I took a weekly photograph. When the first year was finished, I stitched the photos together into a time lapse video, which I posted on my blog. To my great surprise, the video went viral. And I felt the pull of both of these stereotypes in the time that followed.

Interviewed for articles and tv, I was often asked the same questions. But the last one was always the same: how are you now? And I felt, so heavy, the weight of their expectation, how badly they wanted me to tell them that I was cured. They wanted me in the pink tutu, they wanted me to say I was stronger than ever, that cancer turned out to be a gift (excuse me while I throw up). And when I didn't say that, how palpable the disappointment was. 

And the flip side -- I read in the comments on my video that because I hadn't lost a lot of weight during chemotherapy, I was "probably faking." Also that I was an attention whore. Because I didn't fit sufficiently into the model of the desperate cancer patient. Because the reality of my experience challenged their assumption so much, they were so uncomfortable, they had to lash out.

It strikes me now how rarely I haven been asked, "what was it like?"

I will tell you how it was: hard. Shitty. But worst of all it was lonely. Informed only by assumptions and fear, many non-cancer friends drifted away. This experience is unfortunately quite common. Perhaps afraid of encountering a "desperate" patient, many avoid their friend or family member completely. (Note to readers: don't be that guy. That guy sucks.) Remarks about staying positive and being grateful feel like admonishments.

But when it's you, which one of those story arcs would you rather have? Given only two models for survivorship, it's hard to begrudge those who choose the pink door.

Since my first intimate experience with cancer when Matt was diagnosed in 2008, I've met hundreds of people affected by the disease. They are all ages, many types of cancer, and with different prognoses. And I wouldn't call one of them desperate.


  1. Fantastic post, Emily. It kills me how many times my successful journey so far has fallen on deaf ears, how many times people who should know better refuse to look at me with anything but grossly misinformed pity.

    Also, I'm sorry you had to endure that focus group. I would have stormed out.

    1. I wish you'd been there, Deborah! Or not, really, I wish I hadn't been there myself. But I wish I could have channeled you. xo

  2. A MUST share wow this is exactly what kept me up last night XO

  3. Hi Emily,
    Great post. It reminds me about the time I was at a support group meeting once and we all were supposed to go around the room and share how we were 'better' post diagnosis. I said, I'm not better and gosh, the reaction was astounding. It's sad and hurtful when those who are supposed to be most understanding won't accept our story, how we see cancer, or however you want to frame it. It really means they don't accept us. Thanks for the post. Sharing too.

  4. Beautifully written, heartbreakingly beautiful.

  5. This is a great post. I appreciate your honesty and your experience. I have a problem even with the premise of the group you described... how can you describe a diverse group of people, who really only share one disease (and cancer is a group of many different diseases), with one adjective? I guess I'd choose "Human".

  6. My goodness, I can relate to a lot of things you say here. I have often felt isolated, with a loss of identity (not knowing where I belong). Personally, I am tired of all the expectations society has of us. People will always have something to say until they are faced with the challenge. The truth is hard to swallow and society has an issue with facing it so there is often a need to “pretend” or look the other way. Cancer is a disease that isolates and separates but I choose to express myself and not suppress my feelings. If someone isn’t happy with how I copy with my cancer, and my life in general, then they should not be part of my life at all. There are those who get it, including you, and for that I am grateful. I am sorry you experienced such reactions with that group.

  7. I relate so much to what you wrote - the expectation that cancer must have magically turned me into a Wonder Woman. Then there's the other side of the coin -- the desperate one. In truth, I've never met a desperate cancer patient. Not ever. Most of us muster up whatever strength we can and get through it, one day at a time. The people in your focus were projecting their own fears of something outside of their experience. And like so many people, they were more vested in "being right" than listening to another with firsthand knowledge. Sorry you were subjected to that crap. It's nauseating.

  8. I can relate to your answers: shitty, lonely, fearful, with non-cancer friends drafting away. I can't believe you were accused of faking it in your video - how damaged some people can be. Your voice is inspiring!