It was a question of curiosity. It was a kind question, one we ask each other often. “What are you writing now?” And I responded, to these normally awesome people, about my health literacies project that focuses on the media engagement and knowledge production practices of adolescent and young adult cancer patients. So, kids, they asked? Still kind. I explained the term AYA, and how it refers to folks between 15 and 40.
That’s where it all went downhill. They guffawed. They laughed at considering a 40-year a young adult. They were in on a big, giant, smiley joke together, and I was on the outside, straight-faced, the non-laughing corner of the triangle, now invisible. “It’s a really big deal,” I said, “to be a cancer patient when all of the other cancer patients- the ones sitting across from you at chemo, the ones enrolled in the studies and trials, the ones in the waiting room, the ones pictured on TV, the ones for whom the chemo protocols and screening technologies were developed, the ones who’s stories are told in movies, the ones who’s links these very same normally awesome people shared on Facebook… when all of these people you can see with cancer are 30 or 40 years older than you, it is a very big deal.
Now let me tell you about AYAs. We have more aggressive cancers. We die more frequently. There is almost no treatment specifically for us. Our doctors use treatments prepared for older bodies- bodies that are biologically different than ours- and they try to patch together treatment plans that will save our lives. When we ask questions, we mostly hear, “Well, there’s no research on that.” or “We don’t know how young bodies respond.” We face unique concerns surrounding fertility, bone density, and 30, 40, and 50 year side effects of treatment. When they use the existing surveillance to test us for cancer, it regularly fails because it wasn’t built for our bodies. We identify profound social isolation as our chief concern related to cancer. We have no choice but to band together, to stick up for each other, to make sure our voices are heard. And what I have to contribute to our efforts is a research project.
As they continued to laugh at the designation of someone “under 40” as a “young adult,” I sat in silence, and felt more and more invisible. My heart tightened. I wondered if they could see on my face, the horror and disbelief, the sadness and confusion, the stories of invisibility. After all, think about it. Someone in their thirties is in a different life stage than someone in their sixties. Who wouldn’t agree with that? A thirty year old has very different concerns, life experience, networks, and needs than a sixty year old. Throw in cancer, and the differences abound. But this blog isn’t about convincing you we are different, convincing you we have particular concerns, or convincing you we matter. Presumably, you are reading because you already agree. And if you don’t, then this blog isn’t about convincing anyway. It’s a space of documentation.
So why do normally awesome people turn into assholes when you tell them about young adult cancer patients, including folks up until age 40? Who the fuck knows. What we do know is that generally, when we tell each other of our writing projects, we are sharing heart-stories, we are sharing projects grown deep inside of each of us, we are sharing with each other what matters. So tread carefully, cancer or not. Someone is sharing an idea that is fragile, still in the process of becoming, an idea that is carefully constructed and tenderly nurtured. Someone is sharing what matters, and it’s up to us to listen.
And for gods sake, when you’re talking to someone who just finished cancer treatment and identifies as a young adult cancer patient or survivor, don’t guffaw at the designation of “young adult.” In fact, don’t guffaw at all. We laugh at cancer all the time- we call them cancer-jokes. But we don’t laugh at invisibility. And you sure as hell don’t get to laugh at us because you think our category of “us” is a ridiculous category.
We’re already an us.
And you’re a you, and right now, you’re being assholes. Normally awesome people, but assholes at present. So stop.
To sum up: Young adults get cancer. It sucks like you wouldn’t believe when the only people who look like they were born in the same decade as you at the cancer agency are accompanying their grandparents to appointments for their grandparents cancer. Until you’ve walked a mile in these shoes, which I hope you never do, shut the eff up and listen. We are already invisible enough and that has material consequences- we die more often, we are insanely isolated, and we need you to help make us visible. Don’t make it worse. Make it better. Shut up and listen. Or don’t ask the question at all.
And you know, most normally awesome people are at some point assholes. When you realize it’s you, just say- Oh, shit, sorry, that wasn’t cool of me. That’s it. That’s all you have to say. Of course, you only have to say it if you’d like to remain in the normally awesome cohort. Otherwise feel free to chill with the assholes. We’ll be here being awesome when you’re ready to slink back over, apologize, and be awesome again.