Ever wondered how to deal with misguided advice and intrusive questions from well-meaning people when dealing with a serious or chronic illness? In this episode, I outline strategies for rejecting bad advice and setting boundaries while maintaining kindness.

Coping With "You Should Try This" Advice – Eps. 8 – The Fine, But Not Fine Podcast

Ever wondered how to deal with misguided advice and intrusive questions from well-meaning people when dealing with a serious or chronic illness? In this episode, I outline strategies for rejecting bad advice and setting boundaries while maintaining kindness.

Transcript – Episode 8

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, healthcare battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences, and practical advice. Because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Navigating Well-Meaning but Misguided Advice

Hey everyone, and welcome back. Today, I’m going to dive into the well-meaning but often misguided advice and questions people offer when they find out you have cancer or really any other serious disease or chronic illness. And whether it’s miracle cures, unsolicited diet tips, or assumptions about treatment, it can be a little bit of a challenge to balance kindness and boundaries. And I call it the art of the polite nope, gracefully rejecting bad advice while keeping interactions positive, or at least avoiding unnecessary conflict and hurting people’s feelings. And we’ll also talk a little bit about where empathy turns into invasion, and how to manage that line. So if you have a rare disease, cancer, any of these things that you know people know about, right?

Common Unsolicited Suggestions

People say the oddest, annoying, funny, and offensive things. Things like, have you tried eating all natural? I heard acai berries cure cancer, and did you know that your beauty products are killing you? And there’s a basic flaw in these suggestions, because at least these specifically are based in a belief that nature doesn’t kill. And I’m telling you, cancer is natural. So is cyanide, and both can kill you. And nature has produced a lot of things that kill. As someone who grew up mostly in Alaska, I’m well versed in the ways the natural world can kill, and honestly, natural isn’t always better.

The Importance of Scientific Evidence

And I am a big believer that scientific evidence matters, and it’s actually one of the things, when people will ask me, what was the biggest thing, most important thing you learned when you went to college for your bachelor’s degree, and I tell people the biology class I never wanted to take that I saw zero purpose in was the most valuable class and most valuable learnings I had in college, and it’s because I learned about the scientific method.

And for those of you who are kind of going, hmm, scientific evidence, yeah, right, I know what that is. Or maybe you’re willing to say that you don’t know what that is. Let me explain it. Scientific evidence is where data is collected through very controlled experiments that account for bias and many other things that can happen. These experiments, observation, surveys, and research methods either support or refute a hypothesis. So basically, you have a question, an idea, a belief. I believe interferon alphas can attack cancer producing CD4 positive T cells, right? That’s a hypothesis that had been reviewed.

Now these experiments, right? They have to be reviewed by other experts to ensure the quality and validity of the evidence, and this is because mistakes and one-offs happen, and it’s super easy to miss it when you get into your own experiment, and that the evidence needs to also be replicable. And what that means someone else can conduct the same experiment and get the same results to confirm its accuracy.
Now there is a whole lot more to this, and the details of the scientific evidence and the scientific process are really important, but this could fill half a dozen episodes just on its own.

Strategies for REsponding to Unwanted Medical Advice

So, the big thing these comments I’m talking about is how to respond to these comments and these questions.

So some ways that may be effective. And this one is super simple, “thank you.” And then that’s all you need to say. There are other versions, things like “that’s interesting.” “I really trust my medical team,” and “I really appreciate your concern.”

You can be fairly direct. “I wish it were that simple.” “I have a very specific type of cancer that requires specific treatments”, and for those persistent ones, “I appreciate your attention, but I’d rather not discuss my treatment choices with you.”

Now, another thing that I’ve run into, you know, I have taken an oral chemo path. I’m not on it now. I’ve just come off of that, actually. And you know, one of the top comments I would get is, “when will you lose your hair?” Or “Ooh, chemo is rough.” “You must go to the hospital for treatments a lot” is another one.

But the reality is not all chemo causes hair loss. You don’t have to go to the hospital for them. And some of them aren’t rough in the way people are thinking. Some cancers like mine, Mycosis Fungoides, it’s a Cutaneous T-cell lymphoma. Generally don’t have traditional chemo protocols. And traditional chemo protocols, I tend to think, are the things that we all think of as, you know, someone has to go to the Cancer Center. They’ve got a port installed for their treatment. They get an you know, they go in and they sit and they receive their chemo, and there’s really, really sick afterwards, and it’s a really terrible, unpleasant experience with some pretty horrifying side effects.

So, but the reality is, this isn’t true for everyone, but society has put that concept of chemo into people, and so, you know, it’s like people want to know, when will you lose your hair? Well, actually, you know, chemo isn’t one size fits all. My treatment plan is pretty different from what you see in movies.

There’s also the response of “chemo has a lot of variations.” “Some people don’t lose their hair at all”, you know, even in my current situation, it could be, “you know, on chemo, I didn’t lose my hair, but I’m taking immunotherapy now, my hair is beginning to fall out or thin,” right?

Or just simply, “that’s a good question.” “My treatment’s ongoing, but it doesn’t look the way most people imagine.”

Now to the natural food will cure your cancer. I have to take that one head on. I mean, that’s a hard nope for me.

What Happens When People Push Too Hard

I have had a couple of people on social media put comments on my posts about if I ate naturally, my cancer would be gone in my world. I do not want to be a source of misinformation that is spread to anyone and brings up any kind of hope that is false, and I will shut that one down fast and say, “Nope, that is unequivocally not true.”

You know, I mean, there are times when I think, have you ever taken a science class? But that doesn’t help the situation, and it doesn’t help me. The reality is that people generally mean well, and they’re curious, but sometimes that curiosity becomes intrusive. And the difference between empathy, that genuine care, and invasion, which is where someone is pushing too hard or offering unqualified advice, can be really pretty stark, and it can be a little bit jarring when it happens.
You know, some of the examples of that I have heard from others, some I’ve experienced myself. “Did you do something to cause this?” No one has actually asked that of me, but I can’t imagine how I would react if they did.

“Are you sure your doctor knows what they’re doing?” I’ve encountered this one actually, more times than you would think. And you know, my doctor is one of the leading physicians in my particular type of cancer, and beyond that. Yes, I get where someone is coming from, you know. And maybe a response is, “Well, do you know a specialist and, and you know, in Mycosis Fungoides, in my example, that you know you would recommend?”

I also get that you “really should try this alternative treatment.” I mentioned this on the natural things and, and there are some other responses. “That’s a really personal question.” “I prefer to not get into that.” “I appreciate your concern, but my doctor and I are on top of it.” “I know you mean well, but this conversation is a little bit uncomfortable for me.”

I’m, you know, tend to run on this on “Did you do something to cause this?” For me, absolutely no idea, because we don’t know what causes it. Are you sure your doctor knows what they’re doing? “Yes, absolutely. I’m sure my doctor knows what they’re doing.” And you should try this alternative treatment. Back to that. “You know, my doctor and I are on top of treatments and a very specific treatment protocol that’s been proven with scientific evidence.”

Reclaiming Your Own Authority

Now, there are often different approaches into how you can address it, right?

The deflection: I’ve certainly employed that one before you know, interesting anyway. “So how’s your dog, kid, husband, whatever,” something else that changes the topic.

There is also what I would call the reaffirmation: “I trust my medical team, but I really appreciate you thinking of me.”

And then the hard boundary, the “I’d rather not talk about it.” Or that, “nope, that’s not true.”

And sometimes, you know, friends or acquaintances or colleagues even can be really persistent, and you just kind of, you know, if they take it up, one thing that’s kind of nice about some of these on social media, when people take it up, is you can just kind of stop responding. Let it die on the vine, right? Oftentimes, letting something die on the vine is fine, but you need to know when to just say no and walk away, because not every comment deserves engagement.

One of the things recently that’s just been appalling to me is I had shared about how my health insurer had denied a very common treatment that I should be experiencing. And eventually it was overturned once the North Carolina state insurance commissioner became involved. But I was appalled how many people were saying that we needed to take action, like it happened with the assassination of the United Healthcare CEO.

And you know, that falls into my hard, no boundary, and there’s also a level of just deleting that kind of commentary. I don’t believe we should be killing each other over this. That’s not the answer. I think there are other ways to get forward, and I don’t want to engage with people who who think that I should agree with that. That’s my hard nope, right?

Talking About it Helps

Mostly, though, people mean, well, really they do. Their delivery might be awkward and might be intrusive, but oftentimes they don’t know what to say. I mean, what do you say to someone in that instance? It’s, it’s a tough question. It’s a tough situation, you know, and it’s okay to set boundaries while staying kind.

I hear too many people complain that nobody says anything, or people haven’t been talking to me since I was diagnosed and and I hear all these things that they’re not supposed to say or not supposed to ask that can be very, very off putting.

And there are ways where people could ask things just simply. “How are you doing?” “Is there anything I can do to help?” “Would you like to go do something?” “Would you like to go do this?” Or “what would you like to do?” “I would like to spend time with you.” So there are other ways that people can remain part of your life and support you in some way.
It’s okay to set boundaries, be kind. And you know what? You don’t owe anyone an explanation, your health, your decisions. It’s absolutely okay to say, “you know, I’ve got to deal with this every minute of every day, and I would like for right now not to so let’s talk about something else.” Let’s do something else. Let’s go somewhere else.

How to Behave With Ill People

Now I want to leave you today with a poem written by Julia Darling. And Julia was a writer, poet, artist, who died of breast cancer the age of 48 and she wrote a lot about illness, and she thought the language of illness needed to change. And I actually think this poem sums up today’s topic, and it’s titled how to behave with ill people.

Approach them assertively. Try not to cringe or sidle as it will make them fearful. Rather walk straight up and smile. Do not touch them unless invited. Particularly, don’t squeeze upper arms or try to hold their hands. Keep your head erect. Don’t bend towards them or lower your voice. Speak evenly. Don’t say, how are you? In an underlined voice, as this can make the ill worried. Don’t say, I heard that you were poorly. This makes the Ill feel paranoid. Speak plainly. Say how’s your cancer? Try not to say how well they look compared to when you last met in Toscos, and don’t cry or get emotional and say how dreadful it all is also, and I know this is hard, I know, try not to ignore the ill or to scurry past muttering about a bus, the bank. Remember that this day might be your last, and that it is a miracle that any of us stands up, breathes, behaves at all.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.