Feb 28, 2022
If you have an
invisible illness, chances are at some point you've been accused of
"faking it." What most people who don't have these types illnesses
don't know is... we do fake it. We fake being WELL.
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TRANSCRIPTION
So the other day on
Instagram, I was talking about, uh, the. The guilt that I feel when
I'm having a not so great day and just want to take a personal day.
But I feel like I can't because I have to take so many days when it
comes to having a really bad chronic illness day. And one of you,
Wendy messaged me on Instagram and asked me if I would do a podcast
on fake.
Well, chronic illness.
People think you might be faking sick, but we're actually faking
well. And she, I was like, oh fuck. Yeah, I hell I want to talk
about that. So thank you, Wendy, for bringing that up to me because
that's what we're gonna talk about today. Welcome to the uncurated
life podcast. My name is Cindy Guentert-Baldo on this
podcast.
We talk about the way
we live our lives, both in person and on the internet. And this is
a major piece of it. If you are chronically ill. In one form or
another, this could actually have to do with mental illness. This
could have to do with physical illness or all sorts of different.
For a little bit of context.
I am in kidney
failure. I have polycystic kidney disease. And so I have a lot of
the problems that come with kidney failure, the nausea, the, um,
the brain fog, the exhaustion, all of that, but also have massive
football sized kidneys, and those add their own level of pain to my
day, with the size of them pushing on my ribs, pushing them, my
organs, I can't bend over.
I can't tie my shoes,
blah, blah, blah. I am in pain. Or uncomfortable or both every
minute of the day. So very much I am, um, chronically ill, however,
um, aside from some yellowness in my skin and my large kidney
belly, which a lot of people just assume I'm pregnant. You can't
see my illness on the surface.
I'm not wearing it on
my sleeve. The same goes for people with so many different
invisible illnesses, whether it's fibromyalgia, whether it's Ehlers
Danlos syndrome. And those just both come to mind because my kid is
potentially diagnosed with one of those. We're still working on
that, but there's all sorts of invisible physical illnesses that
can cause pain.
And that can make you
feel like shit every day. The same goes for a lot of mental.
Illnesses things that you're dealing with, like depression or
chronic anxiety or all sorts of different things like that. There
are so many things that afflict us and impact how we're doing on
any given day that people on the outside, people who are not, uh,
us basically, they can't see.
It becomes a real
feeling of stress, especially when people question you, if you're
having a bad day, this happens. This happened a lot for me when I
was working for, I worked for myself now, but when I was working
for somebody else with coworkers, when I would need to take like a
moment and people would question because they couldn't tell, it's
not like I have a broken arm hanging from my side or
something.
So they would question
me about whether or not it was faking, feeling shitty. I've seen
this with my kid. They have run into problems with other people in
their life who have questioned them on how they're feeling. Are
they really feeling, is it really that bad? I know a lot of people
in the chronic illness and chronic pain communities feel this
way.
I know, especially it
can feel this way when you go to the doctor and you are asking for
help or relief with your pain or looking for answers. And there are
some amazing, amazing medical professionals out there, but there
are also some who maybe did not pay. Empathy on their trip through
medical school, especially if you're a woman, especially.
And I've heard, like
if you're a woman, if you're fat, if you are a person of color,
your, your, like your concerns are not always taken as seriously at
the doctor. If you have the nerve to go to a doctor about it at
all. For me, one of my biggest issues is that I am in pain all of
the time, and I very rarely have anything to help me with relief
from the pain.
Because of the stigma
around pain management, pain management medication, and with the
whole like opioid epidemic, I have an entire rant on how the opioid
epidemic and all the situations with that. Some of the people
impacted the most by it who don't get talked about the most are the
chronic pain patients who.
They have to spend
their lives in misery because, um, of the way that like people are
not being treated like criminals, if they need to, if they need
pain management. So there is that all of this to say that it is
very easy. If you are somebody who suffers with an invisible
illness of any sort to be.
Accused of either
directly or indirectly a faking it, of faking your illness of
exaggerating your illness of, of over-blowing your illness and what
Wendy said to me. And what I really started to articulate to myself
is that, yeah, I do fake it. I fake it a lot, but I don't fake
being sick. I fake being well, here's the thing.
When you are somebody
who is dealing with chronic pain, chronic illness, you don't need
to fake feeling like shit because you already do, but you may
decide either purposefully or just subconsciously that it would
serve you better to just put on the wellness facade. It's easier
that. So I'm going to link several articles that I looked at in the
show notes, because there's, there's other people.
Who've also said this
very succinctly, but I'm gonna just talk about some of the reasons
I can think of about why and how I've faked being well, one of the
biggest reasons. I'm fucking sick of talking about it. I'm sick of
people asking me how I'm doing. I'm sick of having to explain. I'm
sick of having to talk about it.
I just want to be left
to be miserable and peace. And if I present as miserable, people
are going to ask me, they're going to be concerned. Maybe I just
don't want to talk about it. That. So I fake it. The funny thing is
my family's onto me. I can't fake it as well around them anymore.
They know me well enough where they can see the changes in my body
language.
They can see the
changes in my face. They can see it. Eyes. They could see it in how
I carry myself. They can see it in the way that I move around them
and the way that I just move in general, the way I walk, maybe even
the clothes I decide to wear. They're very astute at picking up on
the signs. Even if I'm trying to present like quote, everything's
fine.
They can tell. That
I'm lying, especially Jessie, my husband. Oh my God. He can pick it
out, like out of a fucking lineup, but generally speaking in other
relationships. Yeah. I'll just, I'll fucking fake it because I
don't want to deal with it anyway. I don't want to talk about it
that day. It gets old, man. It gets old and it especially gets
old.
When you start to feel
like that becomes your entire identity, like, look at me, I'm the
sick person. And that may not be your entire identity to other
people, but it can start to feel that way to yourself. So faking
well to, just, to just not deal with it is most definitely
something that I, I do like on a regular basis.
Another way that I
fake well is because I, I don't, there's this dichotomy that comes
when you're sick. Right. You see this a lot, especially in like the
cancer community, right. There's like the cancer warriors, the
people who are like bravely facing on their cancer. And then
there's. Like the super miserable sick people you hear about like
when somebody is reaching the end of their life and they're just,
they're miserable.
So they're miserable
to everybody else around them. So there's, there's these two kind
of archetypes of a sick person. And in my experience, especially
being chronically ill. Neither of those really sum up my experience
on a day-to-day basis. I'm not a warrior, I'm not battling my
illness. I'm, I'm just, I'm doing my best every single day.
I don't want to be
seen as the hero of my story because it's not that simple. I don't
want to be put on a pedestal for it, but at the same time, I also
don't want to be seen as like the miserable sick person and. It's
hard to push back against those narratives. It's really difficult
to push back. It's like pushing back against stereotypes.
It can be really
difficult. And when you're already exhausted and already in so much
pain, it's easier to just sidestep the whole thing altogether. Like
people, if I'm not having a bad day, Sickly wise, or if I'm putting
on that, I'm not having a bad day sickly wise and it won't come up,
then I don't have to deal with it.
But as soon as it
comes up, it becomes something I might have to deal with. And I
just don't want to, most of the time, I don't have the fucking
energy for that. Another reason one might fake being well is so
that you can kind of.
If people start
feeling sorry for you because you're sick or they start questioning
whether you're faking, being sick. It's a very short leap from that
to questioning whether or not you're capable, whether or not you're
competent, whether or not you are, you are capable of being like a
fully formed adult.
It's very easy to
infant analyze somebody who's chronically ill. It's very easy to
dismiss somebody. Who's chronically ill. It's very easy to other
somebody who is chronically ill. And so by faking well, you're
blending it. You're blending in with the well people you're
blending in with the crowd, and you're not calling attention to any
of these things.
People don't make
assumptions about your state of mind. If they don't know that you
are in a haze of pain every day, people don't make assumptions
about your state of mind. If they don't know that you have to take
Trevor. Every day, people don't make assumptions about your state
of mind. If they don't know that you are only putting half of your
thought process forward, because the other half of it is dealing
with not throwing up.
Now, it's not a fair
comparison to make because. Even when I was not in pain all the
time, there were plenty of days where my thought process was
divided and some of it was focused on the task at hand. And some of
it was focused on my grocery list or some of it was focused on the
drama going on at work, or some of it was focused on reliving last
night's episode of flavor of love.
Like it's not like
chronic illness. People are the only ones who are distracted, but
it can be very easy to question somebody's mental competence. If
they have another situation going on, because if you are not, it,
it, it fits you into this category of sick person rather than
person. And, and it just, sometimes you just don't want to fucking
deal with it.
There's other. Times
where one might fake. Well, because you're trying to go down like
the fake it till you make it kind of kind of road. Like, well maybe
if I fake feeling, well, maybe I've eventually will, you know,
maybe if I ignore it long enough, I push it to the side long
enough. Maybe I'll actually forget about it for a little while that
never happens, but it can help with cheering yourself up.
It can help with, with
distracting yourself. There are ways we're putting on that kind of
cloak of wellness. It can add at least like a superficial level of,
I don't know, like peace and that sometimes I'll take it right.
Sometimes I will take it a big piece of faking. Well, though, and
probably for me at least is one of the biggest pieces is
because.
I don't want to be
seen as the complaining sick person to my family, to my people
around me, my friends, everyone else. I don't want to be seen as
like the bummer. Right. I don't want people to distance themselves
from me because they don't know what to say. I don't want people to
distance themselves from me because they're tired of hearing about
it.
Like, I don't want
like being sick, having this shitty genetic disease. Already sucks.
I don't want it to be indirectly sucky by alienating people in my
life now, whether or not that would actually happen. I don't know.
But there is a lot of messaging out there that can at least make
you feel that way. It can make you feel that if you are too vocal
about your, your chronic illness, if you are, you are.
Turning your frown
super down on all the time that, that people are going to
eventually distance themselves from you. There is messaging out
there and it can be easy to internalize that a lot of people don't
like being reminded, right? That, that humans, like if you're
feeling healthy and everything else, and there's somebody, who's
your age, who is struggling really hard with chronic pain or with
illness, it can be a reminder of your own mortality and.
And so that can cause
people to even like, not consciously, but subconsciously distance
themselves from you when you're sick. And so by pretending to feel
better, you hope to insulate yourself from some of that. And one of
the articles I read in the psychology today, article she talks
about, um, The idea of the heroic sick person.
So like if your
illness, this goes back also to like the warrior thing, right. It
goes back to the person they use, as the example is Beth from
little women, right. She's dying. She meets it with acceptance. She
meets it with bravery. She meets it with, with like being. Just
accepting and okay with it. It's not icky.
It's not stressful.
There's no bed sores. Like you don't hear about any of that. You
just hear about her bravely heading towards the valley of the
shadow or whatever it is for that book a bunch. So that makes that
make sense. But that's not usually what chronic illness really is
like. And that's usually not what somebody who finally is at a
point where they're going to be hospitalized.
It's not what it's
usually like, but this idea of like the, the idealized sick person,
Barbara Hershey in beaches, dying of her woman's disease or
whatever, right. When you see people in these movies dying of
something, You know, getting cancer, getting whatever, and then
they, they face it and they might have some problems facing it, but
then they, they go through it like even a movie like step-mom with,
um, with Susan Surandon it's a great example of somebody faking
well, right.
The movie step-mom was
Susan Surandon and Julia Roberts is about a divorced couple at
Harris is the husband and SU Susan saran. The mom and the dad had
Harrison, Susan Sarandon and Susan surrounding gets diagnosed with
cancer. And at Harris has a new girlfriend. Um, Nate who's Julia
Roberts. And. Susan Sarandon's character.
It kind of, it shows
kind of two things. It shows the, the, the dynamics of a family
dealing with a new step parent and the biological parent, having
trouble relinquishing any sort of control to a step parent, blah,
blah, blah, which I found fascinating as somebody who was in Susan
Sarandon's place with my kids gain a stepmom, but then also.
She's hiding her
diagnosis from them. Cause she doesn't know how her family is going
to handle it. She doesn't want people to see her as a sick person.
She hides it for a good from her family for a good chunk of the
movie to a point where they think that she's maybe moving to
another state or she's having an affair or something like there's a
lot happening there where she's faking being well.
But then once people
know about her being sick, there are some times where she's really
snarky and not like accepting it. But for a lot of it, she's like
the saintly dying mom. Right. And she's putting on this. This idea
of being the, the heroic dying person for her kids, but it also
shows through in the.
There. There's not a
lot of movies made about people who are absolutely like you also.
Okay. Let me, let me just continue on this rambling note to mention
that like the polar opposite of all of this is the memories that
the character Rachel has in Salem's lot. Salem's lot, uh, pet. The
character, Rachel and pet cemetery, the memories of her sister
Zelda, dying of meningitis, and like the, the scary to a kid sister
who is bedridden and on a bunch of drugs.
And, and, you know,
her room smells like urine because of the bed pan and everything
else. I would argue that some of the depictions, not all of the
patients have Zelda by far, not all of the fictions of depictions
of Zelda, but I would suggest that there is a level of truth there
because from everything I understand and from everything I have
witnessed from people in my own life, There is a level at the end
of a long drawn out illness, where somebody is dying from it, where
it's not beautiful, like the movies it's, it's hard and it's
stressful for everybody.
There's a reason that
long-term caregivers suffer from depression and suicidal thoughts
and survivor's guilt and all of that. They feel guilty because they
feel relieved. All of that, to say that when you hear about these
things, when you see the dichotomy of like the heroic, saintly
dying people in the movies, and then you hear about the reality of
it and the things that caregivers have to go through when you
yourself are chronically ill.
You don't want to be
seen as the saintly dying person, because it's not you, but you
don't want to be a burden to the people that you love. And so one
of the only ways you can kind of circumvent some of that is to just
pretend to not feel so shitty. And so that's at least that's my
perspective on it. So I guess what are the takeaway I want you to
take from this podcast is if you are somebody who is chronically
ill in whatever form it might be, and you fake being.
For your own sake,
just know that I understand because I do it too. You're not alone.
And if you are somebody who is not chronically ill and you have
someone in your life who is, first of all, take any assumptions you
have, that somebody might be quote faking it when it comes to their
pain and put it out the window because chances are, if you know
somebody who is chronically ill, And you can see that they're in
pain that day.
Chances are they've
been in pain every day and that day it's just excrutiatingly bad. I
know that. That's what my husband actually has said as much to me
that he knows that when I actually talk about how bad I'm feeling,
it's like way worse, because I wasn't talking about how bad I was
feeling before it got bad enough for me to talk about it.
So just, just keep
that in mind. What you see with the chronically ill person is often
what's gotten bad enough for them to allow to the surface or where
they can't hide it anymore. This is not the same for everybody. I'm
not talking. This is not, you know, everybody's experiences are
different, but I think that there can be between, I think the real
stigma for chronically ill people is both the long time.
Not listening to so
many people when they talk about like the things that are wrong
with them, as well as, uh, and I'm going just go back to it, but
like the, with the opioid epidemic and the problems that it has had
with things like pain management, it has become stigmatized to talk
about being in chronic pain all the time, because people think
you're just talking about it to get.
And I just, I wanted
to talk about this because I think that there are some of you in my
audience who will resonate with this, and I want you to know you're
not. I love to hear your thoughts on this topic. Let me know on
Instagram at @llamaletters, or you can message me, uh, using my
email. I check all the links out in the description or the show
notes below.
I hope you have a
wonderful day. I hope that if you are somebody who is chronically
ill in some form or another, that you have as good of a day as is
possible for you. And I hope if you are not chronically ill, that I
hope you have a great day as well. Make sure to thank my patrons.
If you see any of them out on these streets, they make all these
episodes possible.
And if you are curious
about being a patron yourself, you can go to
www.patreon.com/cindyguentertbaldo
to find out more. I really hope you
all have a great week and until next time, my friends peace
out.