April 1, 2025 • 14 mins
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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Kelly Paul (00:01):
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoides since 2015. This is aspace for real talk, real
(00:24):
experiences, and practicaladvice. Because surviving is one
thing, but figuring out how toactually live, that's the hard
Hey everyone, and welcome back.Today, I'm going to dive into
part.
the well-meaning but oftenmisguided advice and questions
(00:47):
people offer when they find outyou have cancer or really any
other serious disease or chronicillness. And whether it's
miracle cures, unsolicited diettips, or assumptions about
treatment, it can be a littlebit of a challenge to balance
kindness and boundaries. And Icall it the art of the polite
(01:09):
nope, gracefully rejecting badadvice while keeping
interactions positive, or atleast avoiding unnecessary
conflict and hurting people'sfeelings. And we'll also talk a
little bit about where empathyturns into invasion, and how to
manage that line. So if you havea rare disease, cancer, any of
(01:31):
these things that you knowpeople know about, right?
People say the oddest, annoying,funny, and offensive things.
Things like, have you triedeating all natural? I heard a
chi berries cure cancer, and didyou know that your beauty
products are killing you? Andthere's a basic flaw in these
(01:55):
suggestions, because at leastthese specifically are based in
a belief that nature doesn'tkill. And I'm telling you,
cancer is natural. So iscyanide, and both can kill you.
And nature has produced a lot ofthings that kill. As someone who
grew up mostly in Alaska, I'mwell versed in the ways the
(02:17):
natural world can kill, andhonestly, natural isn't always
better.
And I am a big believer thatscientific evidence matters, and
it's actually one of the things,when people will ask me, what
was the biggest thing, mostimportant thing you learned when
you went to college for yourbachelor's degree, and I tell
(02:39):
people the biology class I neverwanted to take that I saw zero
purpose in was the most valuableclass and most valuable
learnings I had in college, andit's because I learned about the
scientific method.
And for those of you who arekind of going, hmm, scientific
evidence, yeah, right, I knowwhat that is. Or maybe you're
(03:01):
willing to say that you don'tknow what that is. Let me
explain it. Scientific evidenceis where data is collected
through very controlledexperiments that account for
bias and many other things thatcan happen. These experiments,
observation, surveys, andresearch methods either support
(03:21):
or refute a hypothesis. Sobasically, you have a question,
an idea, a belief. I believeinterferon alphas can attack
cancer producing CD4 positive Tcells, right? That's a
hypothesis that had beenreviewed.
Now these experiments, right?They have to be reviewed by
other experts to ensure thequality and validity of the
(03:45):
evidence, and this is becausemistakes and one-offs happen,
and it's super easy to miss itwhen you get into your own
experiment, and that theevidence needs to also be
replicable. And what that meanssomeone else can conduct the
same experiment and get the sameresults to confirm its accuracy.
(04:07):
Now there is a whole lot more tothis, and the details of the
scientific evidence and thescientific process are really
important, but this could fillhalf a dozen episodes just on
its own.
So, the big thing these commentsI'm talking about is how to
respond to these comments andthese questions.
(04:30):
So some ways that may beeffective. And this one is super
simple, "thank you." And thenthat's all you need to say.
There are other versions, thingslike "that's interesting." "I
really trust my medical team,"and "I really appreciate your
concern."
You can be fairly direct. "Iwish it were that simple." "I
(04:51):
have a very specific type ofcancer that requires specific
treatments", and for thosepersistent ones, "I appreciate
your attention, but I'd rathernot discuss my treatment choices
with you."
Now, another thing that I've runinto, you know, I have taken an
oral chemo path. I'm not on itnow. I've just come off of that,
(05:13):
actually. And you know, one ofthe top comments I would get is,
"when will you lose your hair?"Or "Ooh, chemo is rough." "You
must go to the hospital fortreatments a lot" is another
one.
But the reality is not all chemocauses hair loss. You don't have
to go to the hospital for them.And some of them aren't rough in
(05:35):
the way people are thinking.Some cancers like mine, Mycosis
Fungoides, it's a CutaneousT-cell lymphoma. Generally don't
have traditional chemoprotocols. And traditional chemo
protocols, I tend to think, arethe things that we all think of
as, you know, someone has to goto the Cancer Center. They've
got a port installed for theirtreatment. They get an you know,
(05:58):
they go in and they sit and theyreceive their chemo, and there's
really, really sick afterwards,and it's a really terrible,
unpleasant experience with somepretty horrifying side effects.
So, but the reality is, thisisn't true for everyone, but
society has put that concept ofchemo into people, and so, you
know, it's like people want toknow, when will you lose your
(06:19):
hair? Well, actually, you know,chemo isn't one size fits all.
My treatment plan is prettydifferent from what you see in
movies.
There's also the response of"chemo has a lot of variations."
"Some people don't lose theirhair at all", you know, even in
my current situation, it couldbe, "you know, on chemo, I
didn't lose my hair, but I'mtaking immunotherapy now, my
(06:42):
hair is beginning to fall out orthin," right?
Or just simply, "that's a goodquestion." "My treatment's
ongoing, but it doesn't look theway most people imagine."
Now to the natural food willcure your cancer. I have to take
that one head on. I mean, that'sa hard nope for me.
I have had a couple of people onsocial media put comments on my
(07:07):
posts about if I ate naturally,my cancer would be gone in my
world. I do not want to be asource of misinformation that is
spread to anyone and brings upany kind of hope that is false,
and I will shut that one downfast and say, "Nope, that is
unequivocally not true."
(07:27):
You know, I mean, there aretimes when I think, have you
ever taken a science class? Butthat doesn't help the situation,
and it doesn't help me. Thereality is that people generally
mean well, and they're curious,but sometimes that curiosity
becomes intrusive. And thedifference between empathy, that
genuine care, and invasion,which is where someone is
(07:51):
pushing too hard or offeringunqualified advice, can be
really pretty stark, and it canbe a little bit jarring when it
happens.
You know, some of the examplesof that I have heard from
others, some I've experiencedmyself. "Did you do something to
cause this?" No one has actuallyasked that of me, but I can't
(08:15):
imagine how I would react ifthey did.
"Are you sure your doctor knowswhat they're doing?" I've
encountered this one actually,more times than you would think.
And you know, my doctor is oneof the leading physicians in my
particular type of cancer, andbeyond that. Yes, I get where
(08:36):
someone is coming from, youknow. And maybe a response is,
"Well, do you know a specialistand, and you know, in Mycosis
Fungoides, in my example, thatyou know you would recommend?"
I also get that you "reallyshould try this alternative
treatment." I mentioned this onthe natural things and, and
there are some other responses."That's a really personal
question." "I prefer to not getinto that." "I appreciate your
(08:59):
concern, but my doctor and I areon top of it." "I know you mean
well, but this conversation is alittle bit uncomfortable for
me."
I'm, you know, tend to run onthis on "Did you do something to
cause this?" For me, absolutelyno idea, because we don't know
what causes it. Are you sureyour doctor knows what they're
doing? "Yes, absolutely. I'msure my doctor knows what
(09:21):
they're doing." And you shouldtry this alternative treatment.
Back to that. "You know, mydoctor and I are on top of
treatments and a very specifictreatment protocol that's been
proven with scientificevidence."
Now, there are often differentapproaches into how you can
address it, right?
The deflection (09:37):
I've certainly employed that one before you
know, interesting anyway. "Sohow's your dog, kid, husband,
whatever," something else thatchanges the topic.
There is also what I would callthe reaffirmation: "I trust my
medical team, but I reallyappreciate you thinking of me."
And then the hard boundary, the"I'd rather not talk about it."
(09:59):
Or that, "nope, that's nottrue."
And sometimes, you know, friendsor acquaintances or colleagues
even can be really persistent,and you just kind of, you know,
if they take it up, one thingthat's kind of nice about some
of these on social media, whenpeople take it up, is you can
just kind of stop responding.Let it die on the vine, right?
Oftentimes, letting somethingdie on the vine is fine, but you
(10:22):
need to know when to just say noand walk away, because not every
comment deserves engagement.
One of the things recentlythat's just been appalling to me
is I had shared about how myhealth insurer had denied a very
common treatment that I shouldbe experiencing. And eventually
it was overturned once the NorthCarolina state insurance
(10:44):
commissioner became involved.But I was appalled how many
people were saying that weneeded to take action, like it
happened with the assassinationof the United Healthcare CEO.
And you know, that falls into myhard, no boundary, and there's
also a level of just deletingthat kind of commentary. I don't
(11:08):
believe we should be killingeach other over this. That's not
the answer. I think there areother ways to get forward, and I
don't want to engage with peoplewho who think that I should
agree with that. That's my hardnope, right?
Mostly, though, people mean,well, really they do. Their
delivery might be awkward andmight be intrusive, but
(11:28):
oftentimes they don't know whatto say. I mean, what do you say
to someone in that instance?It's, it's a tough question.
It's a tough situation, youknow, and it's okay to set
boundaries while staying kind.
I hear too many people complainthat nobody says anything, or
people haven't been talking tome since I was diagnosed and and
I hear all these things thatthey're not supposed to say or
(11:49):
not supposed to ask that can bevery, very off putting.
And there are ways where peoplecould ask things just simply.
"How are you doing?" "Is thereanything I can do to help?"
"Would you like to go dosomething?" "Would you like to
go do this?" Or "what would youlike to do?" "I would like to
spend time with you." So thereare other ways that people can
(12:10):
remain part of your life andsupport you in some way.
It's okay to set boundaries, bekind. 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 aboutsomething else." Let's do
(12:32):
something else. Let's gosomewhere else.
Now I want to leave you todaywith a poem written by Julia
darling. And Julia was a writer,poet, artist, who died of breast
cancer the age of 48 and shewrote a lot about illness, and
she thought the language ofillness needed to change. And I
(12:52):
actually think this poem sums uptoday's topic, and it's titled
how to behave with ill people.
Approach them assertively. Trynot to cringe or sidle as it
will make them fearful. Ratherwalk straight up and smile. Do
not touch them unless invited.Particularly, don't squeeze
(13:14):
upper arms or try to hold theirhands. Keep your head erect.
Don't bend towards them or loweryour voice. Speak evenly. Don't
say, how are you? In anunderlined voice, as this can
make the ill worried. Don't say,I heard that you were poorly.
(13:37):
This makes the Ill feelparanoid. Speak plainly. Say
how's your cancer? Try not tosay 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 isalso, and I know this is hard, I
(13:59):
know, try not to ignore the illor to scurry past muttering
about a bus, the bank. Rememberthat this day might be your
last, and that it is a miraclethat any of us stands up,
breathes, behaves at all.
(14:23):
Thanks for listening to Fine,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
going.
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoides since 2015. This is aspace for real talk, real
(00:24):
experiences, and practicaladvice. Because surviving is one
thing, but figuring out how toactually live, that's the hard
Hey everyone, and welcome back.Today, I'm going to dive into
part.
the well-meaning but oftenmisguided advice and questions
(00:47):
people offer when they find outyou have cancer or really any
other serious disease or chronicillness. And whether it's
miracle cures, unsolicited diettips, or assumptions about
treatment, it can be a littlebit of a challenge to balance
kindness and boundaries. And Icall it the art of the polite
(01:09):
nope, gracefully rejecting badadvice while keeping
interactions positive, or atleast avoiding unnecessary
conflict and hurting people'sfeelings. And we'll also talk a
little bit about where empathyturns into invasion, and how to
manage that line. So if you havea rare disease, cancer, any of
(01:31):
these things that you knowpeople know about, right?
People say the oddest, annoying,funny, and offensive things.
Things like, have you triedeating all natural? I heard a
chi berries cure cancer, and didyou know that your beauty
products are killing you? Andthere's a basic flaw in these
(01:55):
suggestions, because at leastthese specifically are based in
a belief that nature doesn'tkill. And I'm telling you,
cancer is natural. So iscyanide, and both can kill you.
And nature has produced a lot ofthings that kill. As someone who
grew up mostly in Alaska, I'mwell versed in the ways the
(02:17):
natural world can kill, andhonestly, natural isn't always
better.
And I am a big believer thatscientific evidence matters, and
it's actually one of the things,when people will ask me, what
was the biggest thing, mostimportant thing you learned when
you went to college for yourbachelor's degree, and I tell
(02:39):
people the biology class I neverwanted to take that I saw zero
purpose in was the most valuableclass and most valuable
learnings I had in college, andit's because I learned about the
scientific method.
And for those of you who arekind of going, hmm, scientific
evidence, yeah, right, I knowwhat that is. Or maybe you're
(03:01):
willing to say that you don'tknow what that is. Let me
explain it. Scientific evidenceis where data is collected
through very controlledexperiments that account for
bias and many other things thatcan happen. These experiments,
observation, surveys, andresearch methods either support
(03:21):
or refute a hypothesis. Sobasically, you have a question,
an idea, a belief. I believeinterferon alphas can attack
cancer producing CD4 positive Tcells, right? That's a
hypothesis that had beenreviewed.
Now these experiments, right?They have to be reviewed by
other experts to ensure thequality and validity of the
(03:45):
evidence, and this is becausemistakes and one-offs happen,
and it's super easy to miss itwhen you get into your own
experiment, and that theevidence needs to also be
replicable. And what that meanssomeone else can conduct the
same experiment and get the sameresults to confirm its accuracy.
(04:07):
Now there is a whole lot more tothis, and the details of the
scientific evidence and thescientific process are really
important, but this could fillhalf a dozen episodes just on
its own.
So, the big thing these commentsI'm talking about is how to
respond to these comments andthese questions.
(04:30):
So some ways that may beeffective. And this one is super
simple, "thank you." And thenthat's all you need to say.
There are other versions, thingslike "that's interesting." "I
really trust my medical team,"and "I really appreciate your
concern."
You can be fairly direct. "Iwish it were that simple." "I
(04:51):
have a very specific type ofcancer that requires specific
treatments", and for thosepersistent ones, "I appreciate
your attention, but I'd rathernot discuss my treatment choices
with you."
Now, another thing that I've runinto, you know, I have taken an
oral chemo path. I'm not on itnow. I've just come off of that,
(05:13):
actually. And you know, one ofthe top comments I would get is,
"when will you lose your hair?"Or "Ooh, chemo is rough." "You
must go to the hospital fortreatments a lot" is another
one.
But the reality is not all chemocauses hair loss. You don't have
to go to the hospital for them.And some of them aren't rough in
(05:35):
the way people are thinking.Some cancers like mine, Mycosis
Fungoides, it's a CutaneousT-cell lymphoma. Generally don't
have traditional chemoprotocols. And traditional chemo
protocols, I tend to think, arethe things that we all think of
as, you know, someone has to goto the Cancer Center. They've
got a port installed for theirtreatment. They get an you know,
(05:58):
they go in and they sit and theyreceive their chemo, and there's
really, really sick afterwards,and it's a really terrible,
unpleasant experience with somepretty horrifying side effects.
So, but the reality is, thisisn't true for everyone, but
society has put that concept ofchemo into people, and so, you
know, it's like people want toknow, when will you lose your
(06:19):
hair? Well, actually, you know,chemo isn't one size fits all.
My treatment plan is prettydifferent from what you see in
movies.
There's also the response of"chemo has a lot of variations."
"Some people don't lose theirhair at all", you know, even in
my current situation, it couldbe, "you know, on chemo, I
didn't lose my hair, but I'mtaking immunotherapy now, my
(06:42):
hair is beginning to fall out orthin," right?
Or just simply, "that's a goodquestion." "My treatment's
ongoing, but it doesn't look theway most people imagine."
Now to the natural food willcure your cancer. I have to take
that one head on. I mean, that'sa hard nope for me.
I have had a couple of people onsocial media put comments on my
(07:07):
posts about if I ate naturally,my cancer would be gone in my
world. I do not want to be asource of misinformation that is
spread to anyone and brings upany kind of hope that is false,
and I will shut that one downfast and say, "Nope, that is
unequivocally not true."
(07:27):
You know, I mean, there aretimes when I think, have you
ever taken a science class? Butthat doesn't help the situation,
and it doesn't help me. Thereality is that people generally
mean well, and they're curious,but sometimes that curiosity
becomes intrusive. And thedifference between empathy, that
genuine care, and invasion,which is where someone is
(07:51):
pushing too hard or offeringunqualified advice, can be
really pretty stark, and it canbe a little bit jarring when it
happens.
You know, some of the examplesof that I have heard from
others, some I've experiencedmyself. "Did you do something to
cause this?" No one has actuallyasked that of me, but I can't
(08:15):
imagine how I would react ifthey did.
"Are you sure your doctor knowswhat they're doing?" I've
encountered this one actually,more times than you would think.
And you know, my doctor is oneof the leading physicians in my
particular type of cancer, andbeyond that. Yes, I get where
(08:36):
someone is coming from, youknow. And maybe a response is,
"Well, do you know a specialistand, and you know, in Mycosis
Fungoides, in my example, thatyou know you would recommend?"
I also get that you "reallyshould try this alternative
treatment." I mentioned this onthe natural things and, and
there are some other responses."That's a really personal
question." "I prefer to not getinto that." "I appreciate your
(08:59):
concern, but my doctor and I areon top of it." "I know you mean
well, but this conversation is alittle bit uncomfortable for
me."
I'm, you know, tend to run onthis on "Did you do something to
cause this?" For me, absolutelyno idea, because we don't know
what causes it. Are you sureyour doctor knows what they're
doing? "Yes, absolutely. I'msure my doctor knows what
(09:21):
they're doing." And you shouldtry this alternative treatment.
Back to that. "You know, mydoctor and I are on top of
treatments and a very specifictreatment protocol that's been
proven with scientificevidence."
Now, there are often differentapproaches into how you can
address it, right?
The deflection (09:37):
I've certainly employed that one before you
know, interesting anyway. "Sohow's your dog, kid, husband,
whatever," something else thatchanges the topic.
There is also what I would callthe reaffirmation: "I trust my
medical team, but I reallyappreciate you thinking of me."
And then the hard boundary, the"I'd rather not talk about it."
(09:59):
Or that, "nope, that's nottrue."
And sometimes, you know, friendsor acquaintances or colleagues
even can be really persistent,and you just kind of, you know,
if they take it up, one thingthat's kind of nice about some
of these on social media, whenpeople take it up, is you can
just kind of stop responding.Let it die on the vine, right?
Oftentimes, letting somethingdie on the vine is fine, but you
(10:22):
need to know when to just say noand walk away, because not every
comment deserves engagement.
One of the things recentlythat's just been appalling to me
is I had shared about how myhealth insurer had denied a very
common treatment that I shouldbe experiencing. And eventually
it was overturned once the NorthCarolina state insurance
(10:44):
commissioner became involved.But I was appalled how many
people were saying that weneeded to take action, like it
happened with the assassinationof the United Healthcare CEO.
And you know, that falls into myhard, no boundary, and there's
also a level of just deletingthat kind of commentary. I don't
(11:08):
believe we should be killingeach other over this. That's not
the answer. I think there areother ways to get forward, and I
don't want to engage with peoplewho who think that I should
agree with that. That's my hardnope, right?
Mostly, though, people mean,well, really they do. Their
delivery might be awkward andmight be intrusive, but
(11:28):
oftentimes they don't know whatto say. I mean, what do you say
to someone in that instance?It's, it's a tough question.
It's a tough situation, youknow, and it's okay to set
boundaries while staying kind.
I hear too many people complainthat nobody says anything, or
people haven't been talking tome since I was diagnosed and and
I hear all these things thatthey're not supposed to say or
(11:49):
not supposed to ask that can bevery, very off putting.
And there are ways where peoplecould ask things just simply.
"How are you doing?" "Is thereanything I can do to help?"
"Would you like to go dosomething?" "Would you like to
go do this?" Or "what would youlike to do?" "I would like to
spend time with you." So thereare other ways that people can
(12:10):
remain part of your life andsupport you in some way.
It's okay to set boundaries, bekind. 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 aboutsomething else." Let's do
(12:32):
something else. Let's gosomewhere else.
Now I want to leave you todaywith a poem written by Julia
darling. And Julia was a writer,poet, artist, who died of breast
cancer the age of 48 and shewrote a lot about illness, and
she thought the language ofillness needed to change. And I
(12:52):
actually think this poem sums uptoday's topic, and it's titled
how to behave with ill people.
Approach them assertively. Trynot to cringe or sidle as it
will make them fearful. Ratherwalk straight up and smile. Do
not touch them unless invited.Particularly, don't squeeze
(13:14):
upper arms or try to hold theirhands. Keep your head erect.
Don't bend towards them or loweryour voice. Speak evenly. Don't
say, how are you? In anunderlined voice, as this can
make the ill worried. Don't say,I heard that you were poorly.
(13:37):
This makes the Ill feelparanoid. Speak plainly. Say
how's your cancer? Try not tosay 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 isalso, and I know this is hard, I
(13:59):
know, try not to ignore the illor to scurry past muttering
about a bus, the bank. Rememberthat this day might be your
last, and that it is a miraclethat any of us stands up,
breathes, behaves at all.
(14:23):
Thanks for listening to Fine,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you got a story question orjust need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
going.
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