HLOL Podcast Transcripts

Health Literacy

Survivors? Choosing Words about People Who Have, or Have Had, a Serious Illness (HLOL #222)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z. I also produce and host this podcast series, Health Literacy Out Loud.

Today, I’m talking with Dr. Emily Tonorezos, who is Director of the National Cancer Institute’s, or NCI, Office of Cancer Survivorship. It’s part of the Division of Cancer Control and Population Sciences.

Dr. Tonorezos leads NCI’s efforts to address challenges facing cancer survivors and their families. These efforts include preventing or mitigating adverse effects and improving the health and wellbeing of cancer survivors.

For years, I have wondered what words to use when referring to people who have or have had a serious illness like cancer. I am thrilled that Dr. Tonorezos agreed to talk with me about that.

Welcome to Health Literacy Out Loud.

Dr. Emily Tonorezos: Thank you so much for having me.

Helen Osborne: Let’s get right to it. You’re Director of the Office of Cancer Survivorship. I am very curious about how we refer to people, and there are so many of us now, who have had cancer, are in the process of being treated or it was a long time ago. Can you just tell us a little bit more about the word choice?

Dr. Emily Tonorezos: Yes, of course. This is an issue that we have to deal with every day. The name Office of Cancer Survivorship has the word “survivor” in it, and we use the survivor term to refer to people who have a history of a diagnosis of cancer.

It is not an easy term for everyone to deal with, but it is in our name, so we’ve had to make our peace with it. That’s for sure.

Helen Osborne: I know some of my feelings about that term, but you said it’s not easy for everyone. Can you just tell us what you’re hearing about this?

Dr. Emily Tonorezos: I think the word survivor is used in a lot of different contexts to refer to someone maybe who’s been through a war or some other life-threatening experience. For people who have a diagnosis of cancer, not everyone experiences it in that way.

Some people feel the word survivor doesn’t apply to them because they’re still going through treatment. Some people feel that they’re still dealing with the after-effects of treatment.

Helen Osborne: With all the progress that’s happened scientifically about cancer, it’s not like the old days when you got “The Big C,” or whatever it was referred to without even saying the word. That was about it. There are so many ways it can affect all of our lives.

In the conversations you’re having with your department, what are you coming to terms with about how else we might word this, or is it just enough to acknowledge that there’s a range of opinions about that term?

Dr. Emily Tonorezos: I think there are two ways to think about this. The first is that we have to be very clear that when we use the term survivor, we mean any person who’s had a diagnosis of cancer, whether they are on treatment or off, or expected to live without cancer or expected to be in treatment for the remainder of their lives.

We really are deliberate about the fact that the word survivor is intended to be totally inclusive.

Then the second part is that we say whether or not this term resonates with you as an individual, we need a word for the research. We need a way to refer to people who’ve had a diagnosis of cancer.

We use survivor for the purposes of the research at the same time that we acknowledge that not every individual feels that that word applies to them.

Helen Osborne: Thank you for sharing that.

I do a lot of plain language writing and editing. A lot of listeners to this podcast are somehow involved with health communication, too. We all share an interest in health literacy.

Our task right now is how do we communicate better with the public? I’m not a researcher. I can understand the value of that term in research.

Based on all of your experiences, what are you thinking those of us might do, whether we’re communicating with in-person, in print or online? Is there a global term that we could use?

Should we keep using this term survivorship and explain some of its nuances? Or are there other ways we might talk about people who had, have, or are living with cancer?

Dr. Emily Tonorezos: We have some evidence that, for most people who’ve had a diagnosis of cancer, they don’t mind the term survivor.

The National Coalition for Cancer Survivorship did a survey of survivors and asked them, “Are you okay with this term? If not, what term do you prefer?” They found that, overall, most people were okay with the term survivor.

But the proportion of people who were okay with that word increased as the time from diagnosis increased.

Helen Osborne: Really?

Dr. Emily Tonorezos: For those who were 10 or more years out, the percentage is in the 90s who say that word is okay. But the closer you are to diagnosis, the more difficult people found that term.

Helen Osborne: My reaction to hearing that is maybe people aren’t comfortable in those first 10 years, thinking that they’re kind of done with this. Would that be part of it, or is it just that they’ve gotten used to that term?

I was diagnosed. I’m fine now, and I’m comfortable saying that. I was diagnosed with an early stage of breast cancer years ago. It took me many years to come to terms to be able to say, “I had it,” rather than, “I have it.” That was a journey for me.

For people accepting that word survivorship, do you think that they might be doing it when they’re feeling that much more confident that they’re okay now and they should stay okay? Or is there something else to that?

Dr. Emily Tonorezos: I think that’s a good hypothesis. When the survivorship movement was first gaining momentum in the ’80s and early ’90s, there was a discussion about whether people should be considered survivors once they had reached some kind of milestone in their journey.

For example, five years after diagnosis, or after treatment has ended, or maybe once you’ve reached some threshold in prognosis.

Really, what the advocates and survivors said at the time was that we can’t put those kinds of limits around how we think of ourselves as people.

The journey to understanding your cancer diagnosis and the path that your life has taken might take 10 years for that to happen. But we’re not going to put that on another person. We’re going to say the term applies when you’re ready for it, and you can take it on.

Helen Osborne: A term when you’re ready for it. That would be a different subheading there.

In clinical practice, I don’t know if it’s easier to be able to have a relationship with one person about their preferred word choice and category.

But when you’re dealing with larger segments of population, those of us who might be writing for communities or patient education for an association or something for an organization, and certainly the NCI that’s writing nationwide, if not more, you almost need category words, don’t you? Inclusive words that are not tailored to the individual.

Dr. Emily Tonorezos: Yes. That’s why I started off by saying we have to make peace with the word survivorship, because we can’t communicate with each other unless we agree on the terms that we’re going to use.

But it is important to say, “If it doesn’t work for you as an individual, I am happy to refer to you as an individual however you prefer.”

Helen Osborne: It’s a pickle we’re all in. We’ve got this long description that doesn’t quite fit all the needs we have. But we have to do something about it. We can’t just keep waiting.

Dr. Emily Tonorezos: Yes.

Helen Osborne: Even if we don’t have the answer, do you have advice for us about how we can move forward in whatever our setting and however we communicate?

How can we respectfully, inclusively and appropriately refer to people who have, have had or are dealing with a serious illness like cancer?

Dr. Emily Tonorezos: I think this is something that we’re learning as a culture in general. We’re going to be using terms or sometimes we’re going to inadvertently refer to someone in a way that they don’t feel comfortable with.

I think as a society, as we learn how to be as respectful and inclusive as possible, we have ways of asking people how they want to be referred to.

Me personally, in my clinical practice, I don’t use the word survivor.

Helen Osborne: Really?

Dr. Emily Tonorezos: I refer to patients as in follow-up or getting their check-ups. We just don’t use that word. It does seem to be easier when you’re speaking with individuals or you’re referring to a clinical practice if you stay away from that word.

Helen Osborne: That’s interesting that even you have been having to deal with this in talking about people in follow-up.

You used another word, and I’m curious about that, and that’s the word “patients.” When do we stop becoming patients and become people?

Dr. Emily Tonorezos: I have my patients who I am their doctor, but I would never in a paper or in a communication about our activities in the office refer to people that way.

I just think there is so much more to having had a diagnosis of cancer than being sick. To label someone as if they’re sick is really not right.

Helen Osborne: I agree with you. Thank you for all your sensitivity and your candor and how hard this is.

For all the work you’re doing at NCI, all the work that I’m involved with or help other people with, we struggle with this all the time.

While we’re talking about these hard words, I’m just going to tell you my personal beef with another word or type of words. Are they maybe metaphors? Talking about people who are “fighting” disease or “battling” disease or are “heroes.”

My problem with that is I’m not a war-like person, and I don’t want anyone attributing those more aggressive qualities to what I went through. I had treatment and I didn’t like it, but I’m better. So be it. I wouldn’t want anyone attributing the fact that I battled it. It just seemed like an overstatement and not who I am.

Is that another type of word choice that you sometimes have to deal with?

Dr. Emily Tonorezos: Oh, yes. That is another area that I think we’re learning as a community and in the field that those types of metaphors are not helpful.

Actually, most people probably don’t feel that way about going through treatment. Applying them can make people feel excluded or awkward.

You said it beautifully. I don’t need to repeat your words. But I have heard that before, and I think it’s one of the ways that we’re learning how to better describe people’s experiences with cancer and to do it in a way that’s respectful.

Helen Osborne: I’m so glad you are leading that department. I really am. Your sensitivity to these issues and your candor about it I find very comforting. Thank you.

Now is the hard part. What do you hope we do, what can you do, what can all of us learn from this balancing point on? Do you have any recommendations or thoughts about what we might do to communicate a little more clearly?

Dr. Emily Tonorezos: I think we can agree to use the word survivor for the purposes of research. I think if we lead with that explanation and with the understanding that it may not resonate with individuals, we can utilize it in a research setting and be productive in that way. That would be, I think, the first thing for all of us to agree on.

Helen Osborne: Thank you. I even noticed on the web page called About the Office of Cancer Survivor it says, “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer. This term is meant to capture a population of those with a history of cancer rather than to provide a label that may or may not resonate with individuals.” I think that’s beautifully stated.

Dr. Emily Tonorezos: I don’t need to jump in with this, but I did want to acknowledge the people who came before me in this field, because that definition preceded me in the office. I agree with you. It’s beautiful.

Helen Osborne: It is. People have been doing this for a long time. You’re relatively new in leading this office. Our search for the just-right words will continue. Maybe what was posted on your website will be changing over time as this evolves.

For being hopeful, positive and helpful to listeners, I wonder if we can take some cues from what you are doing, and as we write our materials or write our website. Maybe we can also acknowledge in that that this isn’t the just-right word for everybody. But for now, this is what we’re referring to.

Do you think that’s an okay place to leave this for now as people keep learning and figuring out what words to use?

Dr. Emily Tonorezos: Yes. I think that’s perfect.

Helen Osborne: I thank you so much for talking about this topic. It’s a hard topic. It’s hard to figure out. It’s hard to know what to do from this point on.

But as I said, I am thrilled that you are just open to looking at the many aspects of that word survivor and survivorship and sharing it with us on Health Literacy Out Loud.

Thank you, Dr. Tonorezos.

Dr. Emily Tonorezos: Thank you for having me.

Helen Osborne: As we just heard from Dr. Emily Tonorezos, it is important to consider all our words, including how we refer to others who have or have had a serious illness. But coming up with the just-right words is not always easy.

For help clearly communicating your message, please take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at helen@healthliteracy.com.

New Health Literacy Out Loud interviews come out every few weeks. Get them all for free by subscribing at www.HealthLiteracyOutLoud.com, or wherever you get your podcasts.

Please help spread the word about Health Literacy Out Loud. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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