Living with Chronic Illness: A Conversation for Everyone with a Body, with Sarah Ramey

Look, there are some things in life - a LOT of things in life - that just can’t be fixed or made better, you have to figure out how you’re going to live with them. If you’ve ever felt othered and invisible because of an illness or disability - this episode is for you. If you’ve ever loved someone with a chronic illness, or you’re a medical provider in any capacity, this episode is 3000% for you. And if you’re grieving some other loss or hardship, you’ll recognize so much of yourself in this conversation: that human desire to be seen, loved, and supported, exactly as you are. 

 

Sarah Ramey spent DECADES trying to find answers for why her body was falling apart. Her book, The Lady’s Handbook for Her Mysterious Illness, describes the complex, convoluted path through conventional and alternative medicines, her frustrations with being deemed a liar and hypochondriac, and the overlapping issues of misogyny, ableism, and well meaning but unhelpful support. 

 

5 things you’ll learn in this episode: 

• What it’s really like having a chronic, invisible illness (and if you have one, you’ll feel seen!)
• How truly messed up the medical system is: Sarah’s years’ long efforts to be believed by doctors, and at a minimum: not be overtly harmed while seeking care
• How does being in a female body shift your odds of being believed - for ANYTHING, but especially mysterious, chronic illnesses? 
• Sarah’s music was featured in the hit show “Wednesday,” on Netflix. Can you be a successful musician and have a disability? 
• Why hope is a complex concept when your life is constrained by illness or disability (and why hope is still REALLY important)

To join the next embodied writing course mentioned in the show, sign up at roottherapymaine.com

Notable quotes: 

So much of the experience of having one of these illnesses is sort of having to turn yourself inside to make everybody else be able to see what you can feel, but they can't see. - Sarah Ramey

 

There's just this incredible dehumanization that has sort of taken over medicine. If you have a problem that is disbelieved by medicine, it often feels like, why did I come at all? Why am I paying even a single dollar to be made to feel like I am a worthless, bad person, who's a liar and a malingerer? - Sarah Ramey

 

You have to start with believing what the people living it are telling you. Nothing else can happen unless you listen, and you believe. - Megan Devine 

About our guest:

Sarah Ramey is a writer and musician (known as Wolf Larsen). Her work has been featured in The Paris Review, NPR, The Atlantic, The Washington Post, Ms. Magazine, and the Netflix show, Wednesday. Her book, The Lady’s Handbook for Her Mysterious Illness was a starred selection for Publisher’s Weekly, Kirkus Reviews, and Booklist. Learn more at sarahmarieramey.com and wolflarsenmusic.com.

Sarah has been living with serious chronic pain and illness for seventeen years. 

 

About Megan: 

Psychotherapist and bestselling author Megan Devine is recognized as one of today’s most insightful and original voices on grief, from life-altering losses to the everyday grief that we don’t call grief. She helms a consulting practice in Los Angeles and serves as an organizational consultant for the healthcare and human resources industries. 

 

The best-selling book on grief in over a decade, Megan’s It’s Ok that You’re Not OK, is a global phenomenon that has been translated into more than 25 languages. Her celebrated animations and explainers have garnered over 75 million views and are used in training programs around the world.

 

Additional resources:

To join the next embodied writing course mentioned in the show, sign up at roottherapymaine.com

 

Read Sarah’s memoir: The Lady’s Handbook for Her Mysterious Illness 

 

Listen to Sarah’s solo album: Quiet at the Kitchen Door 

 

Want to talk with Megan directly? Join our patreon

Episode Transcript

Speaker 1 (00:00):
I hope it gets better, but let's just assume that
it's not going to. How can I take these like
very narrow parameters and try to make the best of
this pretty terrible situation. How do I try to make
the best of that? Because for me, it's like, well,
what's the alternative?

Speaker 2 (00:20):
This is it's okay that you're not okay, and I'm
your host, Megan Divine. This week on the show, musician
and author Sarah Raymie on living with complex chronic illness. Look,
there are things in life, a lot of things in
life that just cannot be fixed or made better, and
you have to figure out how you're going to live
with them. If you've ever felt othered or invisible because
of an illness or a disability, this episode is for you.

(00:43):
If you've ever loved somebody with a chronic illness, or
you are a medical provider in any capacity, this episode
is three hundred thousand percent for you. And if you're
grieving some other loss or hardship, you will recognize so
much of yourself in this conversation that desire to be
seen and life and supported exactly as you are. What

(01:03):
I'm saying is, this is a conversation for everybody with
a body, settle in everybody. All of that coming up
right after this first break before we get started, one
quick note. While we cover a lot of emotional, relational,

(01:23):
and in this episode physical territory, this show is not
a substitute or skilled support with the licensed mental health
provider or for professional supervision related to your work or
for appropriate medical care. Hey, friends, so you probably know
Sarah Ramy's work without knowing who Sarah Rami is. If

(01:44):
you watch the hit show Wednesday on Netflix, it is
really good. If you haven't watched it yet. If you
watch the show, you heard Sarah's song if I Be
Wrong in the opening sequence of episode seven, but before
there was a call from Tim Burton and opening song
credit acclaim Sarah Raimi spent years trying to find answers

(02:04):
for why her body was falling apart. Her book, The
Lady's Handbook for Her Mysterious Illness describes the complex, convoluted
path through both conventional and alternative medicines, her frustrations with
being deemed a liar and a hypochondriac, and the overlapping
issues of misogyny, ableism, and well meaning but unhelpful support.

(02:24):
Now that is a mouthful. I know, I said it,
and even I was like, this is a long list.
But that's what chronic illness is. It is a complex, confusing,
often mysterious constellation of symptoms that nobody seems to be
able to figure out if you can even make them try. Now.
I read Sarah's book earlier this year on the recommendation

(02:46):
of a friend that Sarah and I have in common,
and my copy of her book is so heavily highlighted
and annotated. I basically wrote an entire book of my
own inside her book. But from the outside, a book
about chronic illness and how much we just don't believe
people when they tell us what's going on in their bodies. Like,
from the outside, that sounds like a really hard book

(03:08):
to read, and it is. But Sarah's book and this
conversation that you're about to hear, they're both so life affirming.
It's not like positive thinking everything works out for the best,
life affirming way, like you should know me better than
that by now, everybody, But life affirming in the way
of you will see yourself in the pages of her book.

(03:32):
You will hear yourself in her words. Life affirming sort
of thing. Reading The Lady's Handbook turned on so many
light bulbs for me personally. It lit up a creative
spark in me that has been dormant for a long time,
which yea. But two, it brought me back to my
twenties when I live through my own chronic illness. Just

(03:52):
hearing her talk about the gaslighting inherent in the medical system,
how lonely it felt to be sick and having doctor
just dismiss me because they couldn't fix what was wrong.
Like reading that part of the book was like time
travel medicine for me. There's something so powerful in being
seen in the truth of what happened to you, seeing

(04:13):
that through somebody else's words. Now we jump into our
conversation really quickly. I was really excited to talk to Sarah,
So a little bit of background for you. Sarah has
multiple chronic illnesses, and she gives you a list of
what some of those diagnoses are towards the end of
our conversation together. In addition to being an advocate for
people with chronic illnesses and being a writer, she is

(04:36):
a musician recording under the name Wolf Larsen. So remember
I told you that you've probably heard her music. In
that hit show Wednesday, we talk about the difficulty of
navigating the music industry when you have a hit song
and you also have a disability. We get into how
much grief is involved in being sick, and how important
it is to find a community who sees and supports

(04:58):
you exactly as you are are. There are so many
connections between grief and illness, friends, from finding a doctor
who doesn't tell you to get over it already, to
how exhausting it is to have to advocate for yourself
again and again and again and again. Whether you have
chronic illness or not. This episode will help you feel
seen and supported and possibly even make you a better listener.

(05:23):
Just across the board. That is a lot of pressure
for an episode, but it's all in there, and I
can't wait to hear what you think.

Speaker 3 (05:33):
Sarah. I am so glad you're here.

Speaker 2 (05:35):
I've been sort of stalking you in your work for
a few years, so I'm really, really so excited to
have you here.

Speaker 1 (05:42):
I am excited to be here too. I like you
so much, so I love when I get to have
a conversation with somebody there. I really like.

Speaker 3 (05:50):
That is awesome.

Speaker 2 (05:51):
Okay, So I talked a lot about your book and
your music and some of the intersections with my own
life in the introduction, but so much of your writing
is about making the invisible visible.

Speaker 3 (06:06):
I was trying to figure.

Speaker 2 (06:07):
Out where should we start, because there are so many
things that I want to talk about, but I want
to start in a way that lets anybody who feels
invisible feel seen and know them like this is for you,
my loves, Like where do we start our conversation if
we want to help people who feel who feel invisible

(06:29):
feel visible right from the top.

Speaker 1 (06:32):
So you know, my work or my book is all
about this family of illnesses like chronic or necfs, chronic fatigue,
syndromemiologic and cephalomyelitis, but also fibomyalgia and massile activation and
postural orthostatic techcardia and lime, and this family of predominantly

(06:52):
invisible illnesses that have historically been dismissed or dimished or
disp leaved by not just by doctors, by the people
that you need the most. Normally, when you get sick,
you know, you immediately sort of activate your support network
to come and help you. But with these illnesses that's

(07:14):
actually quite difficult to do. So so much of the
experience of having one of these illnesses is sort of
having to like turn yourself inside out to make everybody
else be able to see what you can feel but
they can't see. And so for me, you know, I've
had to do that so much in my personal life.

(07:34):
But that was the purpose of writing the book, is
to turn all of our experience inside out for other
people and for them to be able to feel, for
the reader to be able to feel seen like if
they're you know, one of us, but also for their
friends or their family or their doctor to be able
to see that experience that is so difficult. You know,

(07:55):
there's no external thing, there's no limp, there's no you know,
giant boil on your face that yeah, you don't look sick,
don't look sick. And it really is true that if
I did have a giant boil in my face, that
nobody would be like, oh, I don't buy it, you know,
like nobody would say that anymore. They would just even

(08:15):
if that was not even by a long shot. The
most problematic issue that I have, like if the boil
on my face could have been completely asymptomatic, except it
looks bad, but it would provide this layer of sort
of understanding that it's very difficult to come by if
your symptoms are invisible, but also if medicine hasn't done

(08:38):
its job to educate you know, the community about Yes,
this is a real disease. These are the symptoms. Here
is what friends and family need to be doing to
help this person, because that's normal. That's the infrastructure that
supports every other major illness, but not these because they've
been so disbelieved for so long that that is changing

(09:00):
pretty rapidly, which is wonderful to see. But I mean
it's you know, forty years overdue.

Speaker 3 (09:07):
At least forty years overdue.

Speaker 2 (09:10):
So you know, my copy of your book we were
talking before we got rolling here, that my copy of
your book is like covered in margin notes and highlighted
passages and like stickies and exclamation points everywhere, and that
that reading, it really set off the creative spark in
me again that has felt like it wasn't there for
a while. But it also brought me back to my

(09:30):
twenties when I was like in school and studying women's
history and medicine and the ways they intersect right while
navigating my own invisible health issues. Back then, and it
made me realize that I was I'm not sure how
you how you envision it being pronounced, but I pronounce
it when I read it.

Speaker 3 (09:47):
Won't me?

Speaker 1 (09:47):
Yes, want me right yact you got it?

Speaker 2 (09:49):
So can you tell me about that acronym?

Speaker 1 (09:51):
So the way I started this whole thing off is
to say, I wrote a book that's about this like
collection of essentially you know, the entire alphabet of you know,
nycfs and potts and mcas and ETCeteras, etcetera. There is
no umbrella term for these illnesses that are clearly related.
You know, ailers, danlos eds. You know, there's so many

(10:11):
different illnesses that that are clearly under sort of the
same neuroimmune and crine umbrella in my opinion, And because
of that lack of sort of unifying terminologies, I just
started calling us woamis, which stands for a woman with
a mysterious illness. But there's also mommies, a man with
a mysterious illness upon me, a person with mysterious owns.

(10:34):
One can make it there own.

Speaker 3 (10:37):
Right and choose your own acronym adventure, And.

Speaker 1 (10:40):
It's just a way to talk about this family of
problems that is clearly a family of problems. Nobody that
studies these issues is like, oh, yeah, they have nothing
to do with one another. Everybody that's seriously looking at
this from a scientific perspective, it's like, well, yes, they
do clearly all run together in a family. How they're

(11:02):
connected and related, you know, that's a lot more complicated,
but that they are, it's definitely real.

Speaker 2 (11:07):
I was reading that section in the book this morning
again where you talk about the origin story of that acronym,
and like, I love that. You say, like I needed
a word that had enough impact and enough weight that
would evoke the proper response from my friends and family
and from the people who are trying to support me,
like something that like are And I love that you say,

(11:31):
like you wanted an official word that provoked the right
response to your illness, and the right response was holy
fucking shit.

Speaker 1 (11:38):
Yeah I don't that. I don't know that Wami does that,
but at least it's something. It's just it's it's a word.
Because when you just say to people when they're like, well,
what's wrong, and you're like, well, I don't. I mean,
this is another sort of function, or another facet of
these illnesses is that it takes i mean years, if
not decades to get a diagnosis at all, and so

(12:00):
when you can't tell people what is happening for you,
that creates just another enormous barrier between you and them
because it sort of opens the door for them to
not believe you or to back away because they don't
know what to do. So whomy that just helped me
to start talking to whoever was interested about this phenomenon.

(12:21):
It's not just me, This is not just this unique
thing that is happening to me. That always felt very
important to explain to people that it's not just like
Sarah Raimi and her like super unique problem that nobody
in the world can figure out. Even though my you know,
the particulars of my issue are definitely unique to me,

(12:41):
but the overall phenomenon of dealing with the horrible fatigue
in my algas and digestive problems and sensitivities, that's not
unique to me whatsoever.

Speaker 2 (12:50):
No, and there's there's so much packed into this, with
like women coming to the medical profession help in assistance
and being basically gas lit and not believed and dismissed.

Speaker 3 (13:04):
Right like hysteria and all of.

Speaker 2 (13:07):
These things like you mentioned when we first started talking
how difficult it is to convey to the people who
love you and want to support you what's actually going
on for you. And then you take that sort of
language gap, description gap and you bring it into a
medical industry that if they don't actively hate you, they

(13:32):
don't bother trying to learn who you are and what's happening.

Speaker 1 (13:35):
Yeah, this goes far beyond Willmingdom. It's extremely acute in
when you have one of these illnesses. I really think
that they're sort of some of the most mistreated illnesses
within medicine. But what you're describing is something that you know,
women experience, that people of color experience, at LGBTQ people experience.

(13:55):
It is unbelievably common to be and people who have,
you know, sort of no layers of marginalization also feel
that way, just not to the extreme degrees that everybody
else feels them of just feeling that what you're saying
either doesn't matter to this person, that you're just sort

(14:16):
of on this conveyor belt that has coming in and
that they are trying to get out, like as fast
as possible, but not without a stop at the billing counter.
And there's just this incredible dehumanization that has sort of
taken over medicine that I think compounds the problem. So
if you also if you're in that type of medical
environment and you have a problem that is disbelieved by medicine,

(14:41):
I mean, it's just it's it often feels like why
did I Why in the world did I come at all?
Why am I paying even a single dollar to be
made to feel like I am a worthless, bad person
who's a liar and a malingerer. I mean, like, this
is it's one thing to not be able to to
help somebody, but to also send somebody away more harmed,

(15:04):
feeling like they that there's something wrong with their personhood,
with their who they are as a human being. I
mean that is I always get so worked up about
this because I'm like, whenever I speak to doctors, I
always say they're like, well, what can we do about this?
If there's so little research, you know, what can I
actually do in my practice to change this? I'm like, well,

(15:25):
are you believing your patients when they come in? Are
you making an effort to make them feel heard and
that what they're saying is valid and that they're suffering
is valid? And they're like, well, I don't know about that.
I'm like, that's that's all you need to do.

Speaker 3 (15:39):
Let's just start there.

Speaker 1 (15:41):
You can, because you know, the oath is do no harm,
and you are doing harm when you are making somebody
feel like smaller, like a bad person, like a liar,
like you're making things up. But all of these things
that are not true for these patients. My experience is
always like when a doctor it just kissed me the
the barest minimum of respect. It's like all I can

(16:05):
do not to like leap over the desk into their
arms to me, like right, the bar is low, it
is as low as it could be, and but you
have to start somewhere. And so I really do think
that it's not a small thing because sometimes people are like, oh,
that's just like you wanting to be have your handheld
by the doctor, and I'm like, no, no, no, no, no no no.

(16:25):
First of all, if you're saying that you've not experienced before,
because that's not what I'm asking for. But belief, that's
the bottleneck. If you have a you know, millions of
doctors that do not believe these patients at all, then
those people, those in their communities are. They're not going
to apply for research grants. They're not going to do

(16:47):
any of the work to generate these scientific data that
would help us have treatments that would help us have
descriptions of these problems and protocols, et cetera. So belief, actually,
in my opinion, that that is the most important place
to start, because you can't make any progress if you
don't believe that these are real problems.

Speaker 2 (17:08):
Yeah, Like everything spools out from yes, believing somebody's what
they tell you. I mean, this is like I'm just
going to jump in for one second here, because like
this is true across the board. This is true with
health issues that are understudied and underfunded. This is true
in sexual violence awareness and educations. Right, Like you have

(17:30):
to start with believing what the people living in are
telling you. Nothing else can happen unless you listen and
you believe.

Speaker 1 (17:39):
Exactly and like, of course it's you know, are there
hypochondriacs of course are the people who are not toned.
Of course, But if you've got you know, millions of
people saying exactly the same thing over and over and
over and over again, this is not a case of
like mass hypochondria, like that's just so ludicrous to think
that that's the more reasonable explanation for what's going on,

(18:00):
not that they're actually exactly what they say there, which
is sick and suffering in the need of help. So
it couldn't be a stronger advocate of just starting with
the thing that is the easiest, that belief that can
be changed overnight. No research, no funding has to be
released for this. You know, you can do that to day.

(18:20):
If you're a doctor and you're listening to this and
you're like, I don't really believe those people, Like, that's
something that you could you could go to therapy, you
could talk through why you don't believe your patients, right, Like,
that is something that you can do as a doctor.
That I am just telling you has the most profound effect.
I think most people like me don't even expect to

(18:41):
get real medical treatment like medicines or anything like that,
because we've been so let down by medicine. So just
to have a doctor that is like I care about you,
I believe you is medicine. And so because it's free
and it can start right now, I really think that
that's the most important place to start.

Speaker 2 (19:03):
I love that, and I even love the idea of
for therapists, or for medical professionals, or for friends and family, Like,
it's a very interesting and very simple social experiment. What
would change if you believed what they're telling you? What
would you do differently? How could you find a way
to be curious about the person in front of you

(19:26):
if you simply believed them? And this, like for me,
this is like the core of grief work too, write
with like, believe the person in front of you. Don't
try to tell them one it's not happening, and two,
if it's happening, it's not that bad. And three that
if they just drank more green juice and thought the
right thoughts, everything would be okay, right, Like you wrote
about this a lot too, that intersection of like you know,

(19:50):
in the book, you're sort of pingponging back and forth
between what we understand as mainstream medicine but allopathic medicine
with all of its hostilities and refusal to understand. And
I think sometimes we get like because you know, we
love binaries, even though binaries don't work for humans in
any way, But like, okay, if traditional allopathic medicine doesn't
really get it well, then obviously the alternative or integrative

(20:13):
health system would be better. And that isn't accurate.

Speaker 1 (20:19):
Which doesn't mean that either of them are all bad, right,
neither of them are all bad, but it is very common.
Like if I think it's a I think it has
to do with like it's so scary to leave your tribe,
and so like if you grow up in regular medicine
and then you defect because it's not helping you, and
you leave to basically pursue alternative medicine, I think there's

(20:42):
this need to like prove to everybody else around you.
I know that I felt this way that it's right,
that you're doing the right thing and that it's all right,
and that regular medicine has got it all wrong. This
thing I'm doing over here has got it all right.
And I understand why I felt that way, But that
was only in the beginning that I felt that way
and then started to go, you know, deeper and deeper

(21:04):
into alternative medicine and realize that there's in many ways,
alternative medicine is a replica of alopathic medicine in terms
of especially that idea that like everything can be fixed
with a magic whatever, like whatever.

Speaker 2 (21:22):
It is so an insert magic item here.

Speaker 1 (21:24):
Exactly, and that that is. You know, you'll go to
a chiropractor and they're like, everything can be fixed with
you know, my protocol here, and then you go to
a homeopath and they're like, Oh, that's all bullshit over there,
but what really works is this blah blah blah blah blah.
And in the beginning, you know, you're you're like, oh,
it does this is Oh, you must be right about this.

(21:46):
That's the way I was. I'm very open to leaving
people in the beginning. And it was just after I
had seen so many different alternative medicine practitioners and they
all said that that I started to realize, like, oh dear,
you're oh dear, we're just this is a big, chaotic

(22:06):
industry that is helping a lot of people. That's very real.
It helped me in a lot of important ways. That's
very real. But it also has a lot of the
same problems or different problems than regular medicine. And it's
just it's very important not to you know, put either
I think up on a pedestal, you know, and and

(22:29):
then because you've put the other one on a pedestal,
to have to like have to look down on the
other one because both sides do this, and it I
just think that the much healthier I always sort of
this is I think in my nature is always to
be like, well, let's look like what's the good in both?
Like what can we take away from both? And then
what are the problems in both? And just trying to

(22:51):
be not even handed, but just not blind to what
the problems might be in whatever path you're pursuing, to
just understand that they're both. We have a big chronic
health crisis in this country and we don't have our
arms around it yet, and that's it's okay that that's

(23:12):
the case, and it's okay to be uncomfortable with not
having all the answers to everything.

Speaker 2 (23:19):
Yeah, I think that the humility for any provider to
be able to say, it's really complex, and some things
work for some people and they don't work for others,
and combinations of things work, and it's exhausting, Like I
always love the approach of naming what's real, right, Like,
it's exhausting. It's exhausting to advocate for yourself at every turn.

(23:39):
It's exhausting to get yourself to endless appointments, not knowing
the hostility level of the office you're visiting, right, And again,
this is true when you've got physical health things. It's
also true with emotional health things. We've been talking with

(24:03):
author and musicians Sarah Raimi about disability and what it
is like to be chronically misunderstood.

Speaker 3 (24:09):
Let's get back to it.

Speaker 2 (24:11):
There's something you said about alternative medicine and it made
me think of like with both allopathic medicine and integrative
or alternative medicine, like there's an overlapping ven diagram in
both approaches to medicine, and that overlapping Van diagram is
it's all in your head, right, Like there's something in
that sort of approach of allopathic medicine to like it's

(24:32):
all in your head. You're making it up, it doesn't
actually exist. Go away, you're bugging me. And for integrative
or alternative medicine, it's almost like they say, yes, it's
all in your head and it's having a real impact
on you. But if you change the way you're thinking
about it, you can change your body. Like Lewis hey, right,
you can do anything, which you know just is so infuriating.

(24:56):
And again, like this this idea that like you can
do anything you set your thoughts to is so pervasive
in physical health, in emotional health, in relational, communal, social health,
like we have limits and it is okay to say that.

Speaker 1 (25:17):
No, I mean, it's just it is extraordinary. I honestly,
I think a lot of it comes down to when
somebody builds their economic model around that, essentially like that
I can help you. And so all you have to
do is, you know, think all of these you know,
positive thoughts. You can't. It's very difficult to sell that well,

(25:39):
maybe I can help you, maybe I can't. You know,
like I think that that for a lot of people,
you know, people aren't like, well I want to here's
my two ninety seven for Yeah.

Speaker 3 (25:49):
You know, it's a hard sell.

Speaker 1 (25:51):
Yeah, And so it has to be kind of all
or nothing. It's like, this is the thing that if
you just sign up with me, I'm going to cure you.

Speaker 2 (25:59):
Yeah.

Speaker 1 (25:59):
All you have to do is just fix every thought
that you have from now until the trinity. And that's
all I have to do. And you know, it's so
interesting because I do think that like all of that
it comes from there's always like a like a kernel
or more than a kernel of something that's that is
helpful and important and empowering there about you know, it's

(26:20):
important not to be fatalistic, you know about that your thoughts,
to be able to work with your thoughts to try
to get yourself into a better place, like I do.
I think that that is correct. But then taking this
to this extreme level of you you can cure anything,
any physical ailment, anything at all by just thinking the

(26:44):
following thoughts over and over and over again. Is just
so painful for the patient because that is not true.
But if you take on that belief, then basically it's
like this like parasite that gets into your mind. That's
just like if you have a single negative thought like
oh my god, oh my god, my god, I'm creating

(27:05):
my illness. I'm having pain in my body and it's
because I have shame about this thing that happened to
me when I was a kid, and I have to
you know, counteract that, and it just can I think,
can create this tremendous amount of It's not just like
self doubt, it is self hatred. It's like I am
creating this horrible thing that's happening to my body to

(27:26):
blame that. It's a different way of blaming the patient,
as you said, it's it's it's not upfront as it
would be in a regular doctor's office where they're like,
I am blaming you right now to your face. You're
making it up. It's a different way of doing that
that sort of unspoils over time. That's just like, I
believe you, I love you, I care about you. However,
you know you've got these thoughts and they're you know,

(27:48):
maybe causing your illness, and then when you start to
take that on as your own sort of worldview, it
is very difficult to sort of get that out of
your brain and to not blame yourself for continuing to
be sick. Which is that that makes me so angry
that like because it happened to me so just like

(28:08):
because I didn't feel that way prior to seeing those
practitioners who told me that, and like really got it
in my head that I was causing my own illness,
and I really felt that way for a long time.
And it's so upsetting because it's like so much of
my life, you know, sort of spent hating myself for
no reason for it because I sort of got bad

(28:32):
data input but from somebody that I thought was, you know,
doing a lot of a lot of good, and so
it just so it was very difficult to sort of
like disentangle that for myself to understand like, okay, something
to do that person doesn't know, doesn't know everything, and
it's okay for me to reclaim that that's not true,

(28:52):
that I may just be sick because I'm sick and
because we don't have a cure for this yet and
because we don't understand, because we don't believe patients, and
therefore we're not you know, putting the money behind these
illnesses to study them, and that it is as simple
as that it has nothing to do with you know,
my thoughts about my stepmom as a kid.

Speaker 2 (29:15):
It's such an insidious shame cycle right there, that like
there's that that invisible, unspoken second half of the sentence
that I talk about in grief a lot with like
if you're telling somebody you know, your thoughts create your reality,
and you have the power to turn this illness around
and all of these things. Then if you are sick,

(29:35):
you screwed it up, Like this is your fault if
you're not doing it better. We gave you the tools
I get as angry about this, as I do about
when people talk about meditation that way, right, or mindfulness
or any of this stuff. It's like you are trying
to get those tools to do something for which they
were not designed. You're sort of using these tools of

(29:55):
liberation as a way to imprison people, which is just rude.

Speaker 1 (30:02):
It's just rude, it is, But I mean, but that
you really hit the nail on the head. It's like
this thing that you're like, oh, this is a healing thing.
This is like, you know, my understanding of this is
that it's that it's healing and it's good and it's calming,
and all these positive associations with something like meditation or yoga,
which do have a lot of positives that come with them,

(30:23):
but then when you attach onto them that they also
are these miraculous cures and if you just do them
hard enough, correctly and often enough, then you can literally
do and you are a superhuman being that can control reality.
And it's like, of course, sometimes illnesses that especially illnesses

(30:44):
that are related to stress and things like that, yes,
if you do things that take on stress that reduce stress,
and you're like, yes, your symptoms can go away or
go into remission, and that's great. I thought again all
of these things. I'm not anti alternative medicine stuff at all.
They are so important and in the absence of any
real treatments like in traditional medicine, I'm all for trying

(31:09):
anything that can help you feel better. What I feel
strongly about is, as you said, attaching this little caveat
onto it. That's like, instead of just telling them like, yeah,
this is worth trying because you know, maybe we can
help you feel five percent better, ten percent better. You know,
occasionally somebody gets all the way better. Great, instead of
just telling the truth saying that it's going to be

(31:32):
this miraculous care if they just try hard enough, that
just poisons this person against themselves, thinking that if they
don't get better, it's their fault. They didn't meditate enough,
they didn't do enough tapping, they didn't do enough yoga,
they didn't do enough with all of these things. And
that is taking this thing that could be so nourishing

(31:52):
to this person and turning it into like a way
for them to beat themselves up. And it's going about
it all wrong.

Speaker 2 (32:02):
Yeah, what is it that is so terrifying about the
truth that we have bodies that can't always be fixed,
minds that can't always be fixed. Like what is so
terrifying about that that we have literally built entire industries
to pretend that's not true.

Speaker 1 (32:23):
I mean, I think it's it's always talk about this
like this is especially true in traditional medicine. But it
drives me just up the wall that patients that have
these problems are told constantly that you know, it's something
to do with them, it's in their mind, it's their
psychological issue, they just need to go get more therapy,

(32:45):
et cetera, et cetera, when in reality, what you are
dealing with is the practitioners issue their own psychological issue
that they cannot just hold what can't be fixed, or
they cannot say their ego is too like I often
call this ego fragility syndrome EFS, that their ego is

(33:06):
so fragile that they can't just say, you know what,
I don't know what's going on here, I can't help you.
That is painful for a lot of doctors to say.
And I think the same for alternative medicine. I think
it's a little different alternative medicine, but there's this need
to be able to if you're in a like a

(33:28):
helping or a fixing profession. Instead of a helping profession,
this need like if you don't fix it, then there's
something wrong with you. And of course that's not true,
and nobody, not nobody, but certainly not this patient popul
ocean does not expect that from you. And so I
just always want to say to those people like, Okay,
so I see that you're struggling with not being able

(33:50):
to fix me, It's okay, You're okay, You're going to
be okay. All I'm asking is for you to not
displace that anxiety that you're feeling back onto me and say,
because I feel so uncomfortable as the doctor not being
able to fix you, I need to put this back
onto you and tell you, you know what you need
to see that there is you need to go do

(34:13):
some sort of psychological work. I feel like there's not
enough time spent with the modern physician to teach them
about being just like a container, like a somebody that
can hold the suffering that walks into their office to

(34:33):
just in a kind and compassionate way, where you just
assure that person that you believe them, that you're sorry
that this is happening, and that you will do what
you can do, and that's it, and that is that
is okay. If you don't know what to do or
how to fix or how to cure, you do not
need to then turn it around and say, and therefore,

(34:53):
if this is your problem, this is you the patient
or have something wrong with you because I don't because
I don't know how to fix you. But of course
you can never have that conversation with the doctor because
the power dynamic is so so imbalanced that it's very
difficult to kind of like talk back because it really
boomerang back on you. Sometimes you can, Yeah, I'm always

(35:17):
like inspired when people do when they like write their
doctor a letter and they're like, hey, man, you really
damaged me by the way that you, you know, talk
to me, et cetera. But it is just also reality
that that can come back on you, and that they
can write something in your chard, they can say something
to another doctor that then makes them disbelieve you, and
blah blah blah. And so it's not it's not just

(35:39):
this risk free zone that you're stepping into if you
if you say something to help correct some of that behavior.
So it's really tricky.

Speaker 2 (35:47):
It's really really tricky and really complicated because you know,
you if.

Speaker 3 (35:50):
You talk about.

Speaker 2 (35:53):
How poorly educated or how poorly award where your providers
are again mental health, physical health, and you know you
have these helpful friends and supporters who are like, well,
you should say something, You should speak up right. I mean,
we have no idea what the ramifications of that can
be when you need to rely on this provider, this

(36:13):
medical system to help keep you alive. Like, how dangerous
it is to be an advocate for yourself.

Speaker 1 (36:20):
One hundred percent, especially when you're talking about patients who
are really sick. Who might you know take First of all,
let's just be real. Let's say even new appointment with
somebody that takes months to get into see that person.
Then you travel, let's say a long distance, you pay
money to see that person. You do not have the
luxury of just being like, hey dude, you made me

(36:42):
feel really uncomfortable and like, you know, like because that
may help you help. Yeah. It just in a perfect world, yes,
that would go great. They would be like, oh, let
me adjust my behavior. But it is equally as likely,
if not way more likely, that they take that very poorly. Though,
this is a ficul patient. You know.

Speaker 3 (37:02):
Sure you get labeled as difficult.

Speaker 1 (37:04):
And so it just it is. It is really complex.
Even though you want to say something like that. You
would say in like the you know, film and TV
adaptation of your life, you know, you would say some
sort of like Aaron Brockovich type of you know, sassy comeback,
but you really it's very difficult to do that in

(37:26):
real life.

Speaker 2 (37:37):
Hey, before we get back to our conversation with Sarah Raimi,
I want to tell you about a very special writing
course led by both a dear friend of mine and
a dear friend of Sarah's. Same person, Johanna Franzel, has
lived with complex chronic illness for decades. If you have
read my book It's Okay that You're Not Okay, the
few times that I talk about the truly stellar support

(37:57):
I had in the early days after my partner died,
that was Johanna. Her skill and her kindness and her
communication skills are what I consider like the gold standard
of care. So when she opened a seasonal writing course
and community for anybody wanting to explore their relationships with
their bodies and their hearts and their lives, I wanted
to tell everybody, which is why you're hearing about it. Here,

(38:20):
I'm gonna put a link in the show notes to
her writing course so you can find out more. But
if you've ever wanted to write with the guidance of
somebody who truly gets what it is to carry invisible
wounds without sugarcoating them or collapsing into defeat, check out
Reverence at roottherapymaine dot com. That's main Mai n or

(38:41):
look in the show notes for the link. All right, everybody,
let's get back to our conversation with Sarah Raimi. There
are two ways of talking about grief in my mind
right now, Like we've been talking, you know, every time
you're talking about the realities of chronic illness and mysterious illnesses,
and like the same thing happens when you're you know,
when you're grieving and you go to a provider looking

(39:03):
for assistance and they don't believe you, or they just
try to medicate you or tell you it's all in
your head. So there's like there's that that there there
are so many overlaps in the chronic illness community and
in the griever community, and I think something that we
don't get to talk about often enough, is how much
grief there is in being sick.

Speaker 1 (39:25):
Yeah, yeah, it's similar, but it's because being sick, you're
sort of like continually losing things. There's just like new
things that you can no longer do, or that you
were hoping that this would be something that you would
have gotten better by, you know, the time that you're
you know, I'm forty two. I for sure thought that

(39:46):
I would have you know, kicked this by now, and
then you have like, for example, like I, you know,
I'm forty two, Like I definitely am not going to
be able to have children, and that's something that that's
like a new thing to be having to really grapple with,
which is something I'd always been like, you know, I
eventually I'm going to get better, and just kept telling

(40:11):
myself that and not being like positive, just just like
I just wanted that. I just wanted to get better.
And because I didn't have a diagnosis that was like, no,
that's not going to happen for you. It sort of
leaves you sort of leaves the hope door wide open.
And so there's as you kind of go along and

(40:32):
go along, and you go along as somebody that has
pretty severe chronic illnesses. There's just a lot of stuff
that you just sort of keep having to like, oh
and say goodbye to and it's very painful, but it
does require so many of the tools that you talk
about and that you've written about. I mean, it's, you know,

(40:55):
I just lost you know, one of my best friends,
and that is a different problem sas to go through.
It's like much more acute. But it's also it doesn't
keep happening over again in a new, all new, brand
new way to have to lose a new thing. And
so it's just they're just different. But I think I

(41:15):
do think that they've got a lot of the same
tools that you talk about in it, that you've written
about so well in terms of coping with them. Yeah.

Speaker 2 (41:24):
I like that distinction actually that you just made. It's like,
when someone dies, they are only going to die once, right,
The impact of that death and that vacancy you will
carry with you in different ways. And what you're describing
is a new goodbye all the time, a new goodbye

(41:48):
every time, a new death of something for yourself over
and over and over, and not better or not worse.
That's not sort of the comparison junket we're doing right.

Speaker 3 (41:59):
Now here, But just like the.

Speaker 2 (42:03):
The pervasive nature of a long series of goodbyes when
you're sick.

Speaker 1 (42:11):
Yes, that's that's a really good, good way to put it. Again,
I know that. I think we've talked offline about this,
but again, this is one of the many reasons that
like the sort of like extreme toxic positivity sort of
push in the chronic illness space is so misaligned with
what's actually happening, which is like, it is not positive

(42:35):
what's happening to you and trying to you know, wrap
up you know, a big stinky turd in a pink bow.
It's just it just is not the way to move
through that. You really need to like be equipped with
a lot like of course, generating hope and optimism, positivity.
These are important skills obviously, but beering so hard in

(42:58):
that direction is more painful in my experience than gaining
the tools to be in the shit, to be in
the pain and to learn how to navigate that, because
you are going to have to do that as someone
with a chronic illness over and over and over and
over again and new in different ways. And if the

(43:22):
only skills that you've ever sort of learned are to
kind of paper over it with positivity and optimism. It's
not going to help you enough. And it also you're
just denying yourself real emotional maturity and real skills to
help other people, not just yourself, but to be with

(43:44):
other people and their suffering in their journey and all
of these things. And so it's been good to see
that this is something I used to feel a lot
more strongly about until I would say the last six
years there has been like a pretty big backlash to
the positive at all costs, absolutely, and that which is good.

(44:05):
That's a corrective that was sort of a long time
a long time coming, and so I've been happy, happy
to see that.

Speaker 2 (44:13):
It's such an interesting thing, like if you truly want
to be of service, you have to stop fixing things
and you have to start stop making them pretty. As
a writer, I always like sort of the difference between
pretty and beautiful, Like pretty is this fake shiny bow
you put on the shit sandwich, and beautiful is like
this is what it is right now, yeah, right, and

(44:35):
allowing the fullness of whatever it is to be what
it is right now is beautiful and it is not pretty.

Speaker 1 (44:44):
Yep.

Speaker 2 (44:45):
Now you are a musician as well as a writer,
and I think this is a good segue add on
whatever to a conversation about grief and a lot of goodbyes.

Speaker 3 (44:57):
But like, one of my very favorite songs of yours was.

Speaker 2 (45:00):
Used in the Netflix show Wednesday, which I was so
excited about.

Speaker 3 (45:05):
I did not know that was coming. When I heard it,
I was like, I know that song.

Speaker 2 (45:10):
But being a musician, balance is the absolutely wrong word here.
But how do you navigate your creative drive and your
creative world and what music is to you with the
realities of living in your body?

Speaker 1 (45:25):
Like?

Speaker 3 (45:25):
How how does that happen for you?

Speaker 1 (45:28):
Not very easily. I will say, you know that song,
it's I'm like, thank you, Tim Burton. That was a
great events. Yeah, I love you Tim. You know that
song that they used. That is from twenty eleven. I've
only recorded one album and it's over ten years, almost
twelve years ago now, and people are always like, where

(45:50):
is your new music? Why do I have new music?
I'm like, if I mentioned that I have this extremely severe,
painful chronic illness, the writing of songs I find very challenging.
It's very very cathartics. It's great to have that skill
set as a chronically ill person, because it is, you know,
a way of like any art. You know, it's any

(46:13):
it's a way of processing stuff that you sort of
can't process intellectually, but the process of getting it recorded
and doing all of the stuff that comes with being
a musician. You know, I can't go on tour, I
can't go into the studio. I can't do you know,
I don't have a record label because they don't sign
non touring artists. I mean, it's it's not the most

(46:37):
disability friendly space in the recording industry. And so that's
all really really challenging, especially because this is just happening
to me this week where you know, I'm speaking all
these people in the industry and they're like, you know,
where's new music? Why are you doing this? Blah blahlah,
And I'm trying to explain to them while I've got

(46:57):
these medical problems, are like well what They're like, I mean,
I saw you recently, you know, you look fine to me,
and I'm like, okay, And this is where not having
like a proper I do have a lot of diagnoses.
But you know, if I turn around to you know,
Jack from you know x y Z record label and
say I've got EMYCFS. Does that mean anything to Jack? No? No, no,

(47:22):
it does not. If I say I've CRPS, does that
mean anything to you know Rose? No, Jack and Rose,
I don't know, it's just Jeff them. But you know,
it's just yet another one of the problems when you
have one of these illnesses that is so poorly understood
and that again has no physical you know, Jack would
not say that to me again if I had a

(47:43):
big thing on my face, And so it just makes
it very difficult to kind of move forward in the
industry because you cannot get the support that you need
from you know, anyone, and so it's so it's really challenging.
I'm doing my best. I'm actually working on some new

(48:04):
music right now, and I'm super excited about that. It's
like the first time I've had to work on music
where I didn't have stuff for the book also going
on or book promotion and things like that that took
up so much of my time and energy for like
a decade and now that's you know, mostly over, and
so it really is the first time that I've kind
of had space where I, you know, I only have

(48:27):
like a couple hours a day that I'm functional, and
so that means that now I can spend those couple
of hours making music, and so I'm excited about that.
But I'm also like trying to keep my expectations myself
quite quite low, just because I have a tendency to
really over promise to myself what I can do in

(48:50):
a given period of time. So this year, I'm just
trying to get one new song records.

Speaker 3 (48:56):
So it's interesting.

Speaker 2 (48:57):
While you're talking about like the difficulties of naviticating a
disability unfriendly industry, it's like just a series of translation errors.
So much of what you've shared is it's hard to
get doctors to understand what it's like to be me.
It's hard to get friends and family to understand what
it's like to be me. It's hard to get music

(49:19):
professionals to understand what it's like to be me. And
the effort involved in trying to translate the invisible to
the visible.

Speaker 1 (49:28):
It's a lot, and there's no even though you know,
I've written a book about it, I've you know, had
to write a million letters to friends or to new
people that I'm working with to try to explain myself
sort of never gets easier. It just always feels like
you're sort of starting from scratch to be like, oh, okay,
let me like we said at the beginning, sort of

(49:48):
like turn myself inside out for you so that you
can see. You know, we haven't done this for the
people that are listening right now. So what do I have? MACFS,
which is chronic fatigue introme, which makes you feel like
you've got the fluke constantly. Your muscles ache and burn constantly.
It's very similar to when you've gotten your booster, and
it makes you quite sick, like not when it doesn't

(50:09):
make you sick. That's not when it makes you quite
sick when you get your COVID booster. That's what like
low level FA date syndrome is like all the time.

Speaker 3 (50:18):
I've got that.

Speaker 1 (50:19):
I've got an iliostomy, which is like an external poop
bag for you know, my my colon is disconnected from
the rest of my body. I've got complex regional pain syndrome,
which is the most painful pain syndrome that exists in
my vagina and my pelvis and my abdomen and my spine.
And those are like the those are like the top
line things, but that's there's like a million million other things,

(50:41):
and so it's very difficult to be like, hey, Jack,
let me tell you about most painful pain syndrome. That's
in my vagina, that's in my bladder, that's in the
left side, you know, my abdomen. You know, that's not
a conversation you can just sort of like have and
it's and it's okay that that person is going to

(51:02):
feel comfortable and want to like keep working with you
in a professional capacity. And so it's just it's really
it's really really challenging. Whereas if I did have a
like let's say, you know, I had you know, MS
or something like that, I could just say I got
MS the end, you know, like then there there's enough

(51:24):
understanding around that problem where it's like, okay, as a
serious disease, I don't need to hear more about it.
She's telling me that it's a problem. I can take
that at face value, and it's going to take her
a lot longer. When you don't have that, you sort
of are missing the protection that comes with a diagnosis
and a space of understanding that is just kind of

(51:47):
absent for most of these problems.

Speaker 3 (51:50):
There's no cultural shorthands.

Speaker 2 (51:51):
Yeah, yeah, that helps people like, oh yeah, I got that.
I watched the PSA as I understand what that.

Speaker 1 (51:56):
Is exactly, and that's for me.

Speaker 3 (51:58):
I are just that.

Speaker 1 (52:00):
It's like the thing that I feel like I long
for the most is just that because I understand. The
flip side of that is like some people, you know,
hate their diagnosis and hate being reduced to just this
word or this diagnosis or whatever, and I totally understand that.
But it's just also true that the flip to flip
it back around, having none is really, really, really difficult

(52:20):
because people just can't understand you and they don't understand
what you're saying to them. Without having that sort of
cultural understanding come in without you having to educate every
single new person that you need.

Speaker 2 (52:35):
I was reading reviews of your book, Getting Ready for
Our Time Here Together, and so many book reviews are like,
you know, it's ultimately hopeful this story, like you know,
even though it does not end with you being all better,
because that's not how most stories end up. But you know,
as you're talking about the realities of endless goodbyes to

(52:57):
things that you want for yourself to that can't happen,
knowing what you know, living in your body and living
what you live. Does hope factor into this at all
for you? What would hope look like for you?

Speaker 1 (53:13):
Oh? Yeah, I am like pathologically optimistic out of my life,
like against all evidence against you know, there is not
a whole lot of data in my life that would
you know, go into the truth machine and come out
with the ticker tape on the other side and be
like you should you know, things are looking up like

(53:35):
It's not not what the truth machine would tell me.
But this is the one thing that I actually feel
grateful for. That part of it is my own you know.
I do do a lot to try to keep my
spirits up, like I because just from my perspective, it's

(53:57):
so much worse when I don't do that. So it's
just for me. It's not to be like palatable for
other people. It's just my life is better when I
try to like really focus on the things that give
me joy and that give me a sense of connection.
But that's a little bit different from all I was

(54:18):
going to say about feeling lucky is that I think
part of that I do do a lot to cultivate
it actively. But I think also one of the things
that I have that is just the luck of the
draw is that I think my own disposition just has
that like sort of it's I always describe it as
like a buoy. It's like very difficult to keep underwater,

(54:39):
and that I feel acutely aware that I'm not doing that.
That that's like my brain chemistry is just like really
doing me a favor, and so I feel very grateful
for that. But I also do do quite a lot
to try to, you know, keep myself feeling I don't
know if hope is the right word, because I don't

(55:03):
feel that hopeful anymore in terms of like the way
that I used to feel like. I do feel hopeful
in a general sense that things are changing for people
like me, that there's more funding, that the sort of
the cultural conversation is shifting. I see the Washington Post
writing about macfs every month or so, and I'm like,

(55:23):
holy shit, that had never happened before. This is entirely
down to, you know, the incredible activism of all these
people in this space. So that gives me a sort
of abstract sense hope. But my own relationship to my
own life now I've almost sort of like let go
of like what we were talking about before, of like

(55:46):
surely by the time I'm fifty two that I will
feel better and that things will be better for me.
That for me, over time became just deeply unrealistic and
sort of like to lie to myself over and over again,
and that started to feel bad. And so now my
orientation in my own life is much more about like, Okay, well,

(56:07):
this is what it is, this is what it's going
to be. Like how do I look at that and
be like, listen, I hope it gets better, but let's
just assume that it's not going to How can I
take these like very narrow parameters and try to make
the best of this pretty fucking terrible situation. How do
I try to make the best of that? Because for me,

(56:29):
it's like, well, what's the alternative. It's like it's just
I've also gone the opposite land, and like, fuck, all
of this just gonna like not try at all. And
I feel worse when I don't try to garden a
little bit every day, even though gardening for me is
difficult physically, but I really feel better in my soul.

(56:50):
So I try to just instead of being like I'm
going to be the best gardener in the world. No,
I'm just going to have this little teeny garden that
I take care of, and that makes me feel a
little bit better. I can't go out and do a
lot of fun things with my friends, but I can
make sure that I've got friends that understand me, that
will come over to me, but not not automatically. I

(57:10):
need to tell them that I need them to come
to me for them to be proactive to understand me.
So there's so many little things of being like, Okay,
this is what it is. How do I try to
be creative in this narrow space to try to make
it not as good as it can be, but just
a little bit better. That's like, to me, like the

(57:31):
healthiest way for me to approach every day. And sometimes
I completely fail and I you know, I have a
bad day, but who cares. I mean, it's just you.
You drag in the next day. And that to me,
has has been very freeing instead of being like I'm
on this health quest to get better and I'm just
gonna be the best health quester in the world and

(57:53):
just try so so so hard, you know, Like that
that I have that mentality for a really, really long
time and I finally just had to, you know, like,
and it's okay. I feel better having like all of that.
I'm like, you know what, on leave this to the
researchers and all those people over there that have money,

(58:14):
that have they're not sick, they can you know, generate
hope for me and people like me and I all
I need to do is or all I really can
do is just try to make life in these four
walls a little bit better every day. And when I
do that, then I feel like not all is lost,

(58:35):
but that there's there's some sense of a fulfillment and contentment.

Speaker 2 (58:41):
I love a complex version of hope, right because hope,
because hope is complicated and complex and it's not transactional,
right like that vending machine of I hope it gets
better and then you know you're looking for looking for
a very specific outcome. So yeah, I feel like you're
you've described an inhabitable hope.

Speaker 3 (59:00):
And I appreciate that and thank you.

Speaker 2 (59:04):
So we are going to link to your book and
to the Wilflarson page so people can find more of
your music and more of your writing. Is there anything
else you would like people to know before we close
up today?

Speaker 1 (59:18):
You know if you are a person that is like
me that has an invisible illness, or if you're a
person that does not have an invisible illness. I want
to encourage the people that are sick. I want you
to know that you are valid, that I see you,
and that I believe you, and that there's, you know,

(59:38):
an ever growing community of people to feel a part
of that you're not alone in all of this, and
that even though it feels so horrible so much of
the time, that you are right and no matter how
many times that you're told that you're wrong, you're on you'rrong,
you're wrong, you are right. And I know that, and
you know a lot of other people in this community

(01:00:01):
know that as well. And so for that's for the
sick person and for the now sick person. I really
hope that you reach out to a sick person in
your life and let them know that you believe them
and that you see them, because a lot I know
there's so many people in my life that absolutely feel
that way. But I if I don't hear from them

(01:00:22):
for a really long time, you know, this feeling that
you're alone starts to creep in again. And so I
would just encourage anybody to take this as a little
spark to text your friends struggling to let them know
that you're thinking about them.

Speaker 2 (01:00:38):
Wonderful, Thank you so much for being here. Thank you
all right, everybody, we will be back with your questions
to carry with you right after this break. Which week

(01:01:00):
I leave you with some questions to carry with you
until we meet again. You know what really struck me
in my conversation with Sarah, Well, for me personally, so
many connections lit up in my brain over and over
and over. It got me so fired up about all
the ways that we ignore and dismiss what people tell
us about their actual lives. Right, this isn't something that

(01:01:21):
just belongs to chronic illness or just belongs to grief
related to death. There are so many ways, medically, culturally, interpersonally,
so many ways we miss each other on purpose and accidentally.
It made me want to talk about that stuff more,
the ways that we don't really hear each other. It
also made me want to look for the places where

(01:01:42):
maybe I'm not listening to other people as well as
I could. I do this stuff for a living, but
I'm still always practicing.

Speaker 3 (01:01:50):
So what about you?

Speaker 2 (01:01:52):
Did anything stick with you, or light something up for
you as you listen today. Everybody's going to take something
different from this episode, but I do hope you found
something to hold on to. If you want to tell
me how today's show felt for you, or you have
thoughts on what we covered, let me know. Tag at
Refuge and Grief on all the social platforms so I
can hear how this conversation affected you. Follow the show

(01:02:13):
at It's Okay Pod on TikTok and Refuge and Grief
everywhere else to see video clips from the conversation, and
use the hashtag It's Okay pod on all platforms, so
not only I can find you, but others can too.
None of us are entirely okay, and it's time we
start talking about that together. Yeah, it's okay that you're

(01:02:34):
not okay. You're in good company. That's it for this week. Everybody,
remember to subscribe to the show and leave a review.
Your reviews help make this show easier to find, which
furthers our mission of getting more people to have interesting
conversations about difficult things.

Speaker 3 (01:02:50):
The other benefit of leaving a review.

Speaker 2 (01:02:52):
Your reviews are really special to me, and I read
every single one of them. Coming up next week. Chip Calmly,
founder of the Modern Elder Academy, joins me to talk
about the gifts and the grief of getting older. Follow
the show on your favorite platforms, everybody, so you don't
miss an episode. Want more on these topics, Look, grief

(01:03:13):
is everywhere. As my dad says, daily life is full
of everyday grief that we don't call grief. Learning how
to talk about all of that and learning how to
listen for it are important.

Speaker 3 (01:03:23):
Skills for everybody.

Speaker 2 (01:03:25):
Get help to have those conversations with trainings, professional resources,
and my best selling book, It's Okay that You're Not Okay,
plus the guided Journal for Grief at Megandivine dot Co.
It's Okay that You're Not Okay. The podcast is written
and produced by me Megan Divine. Executive producer is Amy Brown,
co produced by Elizabeth Fozzio. Logistical and social media support

(01:03:46):
from Micah, Post production and editing by the ever patient
Houston Tilly. Music provided by Wavecrush and Background Noise Today
provided by the Endless Drone of Background Helicopters.

Speaker 3 (01:04:01):
They both kind of say to do that, you'll need
to turn off airplane mode.

Speaker 1 (01:04:06):
They do both say that they do both say, oh
my god, Siri stopping.

Speaker 2 (01:04:14):
They both as you know, what's really weird about that
is like that shouldn't happen because it's in airplane mode.

Speaker 3 (01:04:22):
But it's like it's doing it. It's doing it anyway.

Speaker 1 (01:04:25):
Machines are taking over.

Speaker 2 (01:04:26):
The machines are doing this thing that they go away, Siri,
Siri close you were, She harsh my vibe