Verified by 
I was diagnosed with stage IV colon cancer at the age of 35.
Out of this experience I discovered there are few topics within the cancer world as controversial as the language we use to talk about it. In recent years there has been significant dialogue and debate over if it is appropriate and helpful or inappropriate and hurtful to use words like “survivor,” “thriver,” and “fighter.”
Now seven years later with no evidence of disease, here’s what I’ve learned about the cancer experience debate, and why I think it’s actually a good thing we haven’t all agreed on a single way to talk about things.
Even though it can feel heated and uncomfortable at times, the fact that the cancer community continues to debate the language of cancer is a sign we care. Moreover, it means we haven’t actually reached consensus, that there’s more work to be done, and that we need to keep talking.
As a cancer patient, I learned the subjective words we use to describe our experience with cancer matter.
After being diagnosed with cancer, I struggled being called a survivor. I often felt guilty, hurt, or phony when people called me a survivor while in treatment. In fact, I struggled with these feelings for a few years after my last treatment. It took a long time before I was able to embrace the phrase cancer survivor, and even longer to finally arrive at seeing myself in this way.
For me personally, some days I feel like a survivor. Other days, I feel like a patient. There are also days I’m okay talking about myself as a survivor but get angry if someone else were to call me a survivor. Then there are the times I just want to be Jamie who wants to get together and talk about the mundane or when the Cubs are going to win the World Series again.
It’s okay if you feel at a loss for words or aren’t sure how you feel about the language you or others are using. It’s also normal for the way you feel and talk about your experience to change daily, weekly, monthly, and overtime. What counts is that you keep engaging and communicating.
As a researcher studying meaning-making and cancer, I learned we need more words and ways to describe the cancer experience, not less.
I’ve always valued the role of science and using statistics in helping others live more resiliently professionally. Being a researcher, I relied on quantitative findings from clinical trials and meta-analyses to help make informed decisions about my own cancer treatment. However, a person's subjective lived experience in which they make meaning of cancer can’t always be neatly standardized into proscribed multiple-choice answers.
More recently, I’ve been collaborating on some qualitative research studies with cancer patients. Qualitative research has helped our team go beyond the numbers to get real experiences through interviews and real-life stories. Recent qualitative studies my colleagues and I published on cancer survivors’ meaning-making and spiritual experiences reminded me that each of our cancer stories are unique.
The way our participants describe their cancer experience has caused me to reconsider how I’ve thought about the cancer debate: it is less about our vocabulary and more about our struggle to understand what we are going through, find identity, and experience community in the face of cancer.
As a friend to others impacted by cancer, I’ve learned we all mistakenly say the wrong thing at the wrong time, but that’s not where the conversation has to end.
How we talk about cancer and the language we use can be tricky and confusing.
It’s natural to feel uncomfortable or worry about using the wrong words when it comes to talking about cancer. Yet, talking about our cancer experience is one of the ways language can help us cope and navigate adversity. It is one of the few ways we have in order to help normalize abnormal experiences like cancer. Moreover, language is useful for helping us foster bonds and bring us into community with others.
But I also came to see that language can complicate the cancer experience by causing emotional distress and rupturing relationships, such as when someone says something insensitive, friends pull away, or when people force their perspectives and labels on us.
The sooner we can accept that we will likely say something wrong, the easier it will be to make amends and move forward.
As a psychologist I’ve learned we need both subjective and objective ways of talking about cancer experiences.
The tensions so many of us have felt around the cancer experience debate isn’t really about disagreements over word choice, syntax, or definitions—it’s about not feeling seen, heard, or understood.
For example, over the course of my career I’ve found it’s common for clients experiencing a major depressive episode to describe their experience with language like, “I feel blue,” or “I feel stuck in a cave.” I usually responded with an affirmation like, “Sounds like you’re feeling really blue right now,” instead of, “Sounds like you are experiencing a major depressive disorder.” Using others’ personal language is just as important as using professional language. Being able to use similar subjective language congruent with how others are sharing honors their experience.
Yet, once the clinical intake and assessment process is complete, I introduce more clinical language. Objective language, such as a formal diagnosis, is also important. Standardized language like precise medical terminology helps us communicate about diagnoses. Another reason it’s needed is that it often plays a critical role in helping people understand what they are facing and possible challenges ahead.
I’m all for cancer healthcare providers, organizations, and advocates working toward standardizing professional nomenclature and medical terminology. I understand why so many healthcare professionals and organizations use the terms survivor, thriver, and fighter when describing someone like me (e.g., many see such language as being more hopeful and empowering). I sometimes even use this sort of language to describe my experience. However, I’m troubled by professionals and groups that suggest and advocate that their way of talking about and describing the subjective cancer experience of others is the “right way” and “only way.”
As part of the cancer community, I’ve learned it’s actually a good thing that we haven’t all embraced a single way of talking about cancer.
Now is not the time to close the conversation on how we should or shouldn’t talk about cancer. Instead, we need to lean into this difficult debate and keep talking with each other.
Though we may not all agree on how to talk about cancer, I think most would agree that cancer is hard enough as it is. We need to shift away from judging each other’s voices to embracing each other’s voices. We need to stop seeing these conversations as disagreements. Instead, we should approach them as opportunities to keep talking, listening, and engaging with each other. It’s not going to be easy, but we need to do our best to truly listen and humbly consider what each brings to the conversation.
Similarly, I hope that healthcare professionals and organizations will begin to place greater emphasis on the subjective experience of cancer. Respecting the language your patients use to describe their subjective cancer experience is one of the ways you can show you care. Resist the temptation to force patients’ subjective experiences to fit into your forms and surveys. Don’t get me wrong, I am not suggesting you forgo the paperwork, but I am suggesting that you pause long enough to ask patients if they prefer certain terminology. In seven years of doctor visits since my cancer diagnosis, not once has anyone ever stopped to ask if I was okay with the labels thrust upon me. Assuming that all your patients will identify with terms like survivor, thriver, or fighter is a mistake, one which may risk minimizing what they are going through.
Overall, as a society we give each other multiple options describing our religion, income, ethnicity, and more. Yet, when it comes to describing one’s subjective cancer experience, we tend to only offer minimal options. How we say things is just as important, if not more important, than what is actually said. I suggest we start with a simple question and ask one another what is preferred.
