August 11, 2025 • 33 mins
Imagine the moment: sitting in a doctor's office, hearing those words for the first time – "You have a chronic illness." What follows isn't just medical treatment, but an emotional journey through fear, confusion, and eventually, finding your way forward.
We've been in that exact seat, and in this heartfelt season opener, my Spoonie Sisters and I share the raw, unfiltered truth about our diagnosis experiences. Andi reveals how years of medical gaslighting led to a diagnosis only after a serious health crisis, while I found relief in finally having answers. Linnea opens up about the fear of following her mother's difficult RA journey, not realizing newer treatments would offer different possibilities.
The conversation dives deep into what we desperately wish someone had told us early on. "This is not your great-grandmother's disease," I share, reflecting on how outdated perceptions of arthritis initially terrified me. Andi emphasizes the life-changing power of finding community after years of isolation: "I encourage people, please find sisterhood and brotherhood so you don't spiral in self-isolation."
We tackle the challenges that follow diagnosis – from handling information overload to the frustration of constantly proving an invisible illness. "Just because I don't look ill doesn't mean I'm not ill," Andi explains, challenging the common misconception of what "sick" should look like.
Whether you're newly diagnosed or years into your journey, this episode offers both practical guidance and emotional support. Our shared experiences create a roadmap for navigating the complex terrain of chronic illness with dignity, self-compassion, and even joy. Because as we discover together, chronic illness changes how you move through the world, but it doesn't have to define your capacity for connection and happiness.
So, You’re Newly Diagnosed:
Imperfectly You:
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters, season 5.
We're kicking things off with aheartfelt real-talk episode for
anyone who's just heard thewords.
You have a chronic illness.
Whether you're feelingoverwhelmed, confused or just
downright scared, this episodeis your survival guide.
We've been there and, trust us,you're not alone.
(00:22):
Today, I'm joined by two of myfavorite co-hosts, andy and
Lenia, to share what we wish wehad known when we were first
diagnosed.
From navigating appointments tofacing down Dr Google, we're
getting honest about the fears,the flares and the foundations
of finding your new normal.
(00:42):
Let's dive in with somequestions that might just answer
what's been swirling throughyour mind since diagnosis day.
Ladies, hello, hello.
How are you doing today?
Hello, hello there Spoonies.
Long time no see, at least.
Well, more like long time nohear for listeners.
Speaker 3 (01:01):
Well, a little bit of both, because they get clips
right.
So it's both long time no seeand also long time no hear.
It's been like a month ofSundays since the last time we
got to chat with our fam.
But first, can we just get intothese earrings?
Okay, because all of them.
Because the thing is, these areclip worthy earrings.
So let's just get into theseearrings.
I just need you guys to noticethat today I chose thermometers.
(01:25):
Why?
Because we're in the midst of aheat wave and it is insanely
hot.
For no reason, last night atabout 11, it was still 92
degrees.
I don't live in Arizona.
I didn't sign up for thatAbnormal right.
Abnormal right Random inVirginia, and I found myself at
about midnight asking myself howdid we get here?
(01:46):
Why is it 90 degrees?
Why does my upstairs?
Why is it 78, but thethermostat set to 70?
It wasn't good for hot flashes.
Guys, jen has on some coolearrings.
Speaker 1 (01:57):
I have some made by the one and only Jewel.
For anyone that knows her.
I actually put these on facingthe same direction, but they
keep flipping.
So you've got my SpoonieSisters on one side and my face
on the other.
Speaker 2 (02:10):
Mine are made by Jewel.
It's got the semicolonbutterfly but I did put them on
the other way where one of eachshowed.
But you can see the butterflieswere shown but the other side
is imperfectly perfect.
I'm just glad I have coolearrings like.
Speaker 1 (02:30):
Andy.
Now, andy, you touched onsomething quite interesting.
You mentioned a couple of keywords that have to do with what
season five has in store.
You did, you did I don't evenrealize yet, because yesterday
we were discussing segments.
(02:50):
We're having different kinds ofsegments this season to keep
people on our toes and youmentioned something really,
really important, did I say howdid we get here?
Speaker 3 (03:02):
listen guys, you guys are in for a treat because and
Andy has a lot of how do we gethere?
Moments she does, andy has alot.
How did we get here?
Speaker 2 (03:11):
I thought you did it intentionally.
Actually season five, but itwas.
Speaker 3 (03:16):
No, genuinely trying to figure out how we got here.
And so, guys, that's a goodsegue.
The thing is, if you arelooking to try to figure out how
you possibly got there, thisseason we're bringing so much
fun stuff.
We are introducing the segmenthow Did we Get here, where you
can anonymously submit scenariosand your Spoonie sisters will
give you whatever type of advicewe may have about your scenario
(03:39):
, which most likely may end ornot end in Andy saying, well,
how did we get here?
But we're going to try tocollectively help you find a way
out of however you got there.
Speaker 1 (03:50):
I'm excited.
I have a challenge for thethree of us too.
I challenge us.
I think we came up with mineyesterday, but we're not going
to talk about that again today.
But I think we are each goingto share a how did we get here?
Story of our own, absolutely.
I do that every day, everysingle day.
We have some good ones, I knowwe do, I'm going to try to keep
us on task, so I'm going to diveright into our first question.
(04:10):
Okay, andy, I'm going to startwith you.
What do you remember most aboutthe moment that you were first
diagnosed?
I know that's kind of a hardquestion, because you've been
diagnosed with multiple things,but pick one, I guess.
And was it a sense of relief,confusion, or a little bit of
everything?
Speaker 3 (04:33):
Okay, the moment I remember most about when I was
first diagnosed.
Well, I was at PT and we wereplaying ultimate Frisbee and I
collapsed.
I collapsed because my kidneyswere like ha ha, we don't want
to do this.
And so, prior to that, it wasall in my head not, it's lupus.
And so when my kidneys startedfailing and I collapsed, when I
was in a German hospital, hesays to me, after running labs
(04:54):
and sending all the people in,you know, you got lupus.
Now, prior to that, it was likeyears and years of there is
nothing wrong with you, althoughmy lab said there was clearly
something going on.
And so would I say it was asense of relief.
Hell, no, andy was pissed, andshe was pissed for many, many,
many years, like double digitdonkey years.
I was angry and it's because Ifelt and I still feel this way.
(05:16):
Had they listened to me theperson who walks all day,
breathes in this skin suit whenI said, hey, I don't feel well
and this is going on, I wouldprobably have felt relief.
But for me, I didn't actuallyfeel any relief until after my
heart attack, because peoplestarted listening.
Yeah, unfortunately, it's not afluffy, happy answer.
(05:37):
I didn't feel any relief untilfive years ago because people
started listening.
I'm literally the CEO of mybody.
I live here in this skin suit.
I would think I know what'shappening in my body, but a lot
of the times in my situation itwasn't until tragedy struck,
something horrible happened.
Then they were like, oh,remember that one time you came
(05:58):
in with this complaint you wereright, but it wasn't until a
drastic decline happenedMeanwhile.
I knew it was happening andsaid, hey, this doesn't seem
right.
So it took years, a lot ofconfusion in the years up to
them, putting a name to it notbecause of the diagnosis
confusion Am I literally makingthis up?
(06:20):
And not relief, honestly untilI found ways to holistically
deal with it.
So I wasn't alwaysover-medicated.
So I didn't get relief untilabout five years ago and I
didn't get anything other thananger until about five years ago
.
How about you?
What was most about the momentyou were first diagnosed?
Speaker 1 (06:39):
It was a sense of relief because I'd been waiting
a year and I mean I've told youall my story many times and for
listeners, maybe you know, maybeyou don't know, but it was
quite a journey.
I had been seeing a doctor inanother city that just kept
handing me these pamphlets aboutlupus and RA and other things.
(06:59):
It was like, okay, you'regiving me medication but you're
not giving a name to it.
And now I understand thatbetter.
I know that they are working onnarrowing things down.
They really actually need moreinformation and sometimes that
information takes time.
I understand that now.
So I guess that's my advice tolisteners is try not to get
angry, like I did and like a lotof people do, because sometimes
(07:21):
the answers aren't going tocome right away.
I know that's frustrating, buthopefully your care team is
trying their best to help youand if they're not, keep
fighting, keep standing up foryourself, keep asking for more
tests or whatever it is you needto do.
I finally had to fire my doctorand once I saw my new
rheumatologist I walked in.
That very day he looked at mylabs, he looked at me and he
(07:42):
said you have rheumatoidarthritis.
Very day he looked at my labs.
He looked at me and he said youhave rheumatoid arthritis.
I don't know why we've beendancing around an answer this is
what you have.
And I left feeling hopeful thatwould be my answer.
I was hopeful and relieved.
Speaker 3 (07:53):
Hopeful is great.
I love that, Linnea.
How about you?
Speaker 2 (07:58):
I.
When I first was diagnosed, thedoctor kept flip-flopping back
and forth for me too, like fromfibromyalgia to RA, to lupus,
like all of them, and it finallytook me firing him because he
kept ignoring my symptoms andwouldn't give me medication or
(08:18):
up medication.
He just wasn't taking care ofme.
I actually went to a newrheumatologist as well, and that
first appointment he's likewe're going to do this and this
and this.
You have RA, I can see it here,I'm going to confirm it with
this test.
But I did not walk out of therefeeling hopeful.
I walked out scared.
(08:39):
I walked out fearful because Ihad watched my mom take this
journey before me.
Out fearful because I hadwatched my mom take this journey
before me.
At the time I did not realizethe amount of medication that
comes out for us, so I had it inmy head that I only had her
options and I didn't.
So once I figured that out,once I found the right people to
(08:59):
help me, from nutrition andeverything, it's made a
difference.
But I'm finally feeling hopeful.
Speaker 3 (09:05):
I love that.
I love a good hopeful moment.
I feel like we all deserve itright.
Once you hear the, you have thething we all almost immediately
go down the Dr Google rabbithole or the WebMD rabbit hole
because they tell it to us butnot give you all of the
information or what that lookslike, and sometimes we get the
(09:26):
worst case scenarios right.
Hopeful is the best outcome forwhat we deem to be the worst
case scenario when we get theinformation.
So what's something that youwish that somebody would have
told you early on, like for youwhen your mom was going through
it, and then now you goingthrough it, what do you wish
that you knew?
Speaker 2 (09:46):
I wish I would have done more research when she had
it to help her.
But I also wish somebody wouldhave said there are options for
you.
You're not going to lead thelife your mother had because of
RA.
I wish somebody would havespoke up and said we have tons
of options.
If this doesn't work, we'regoing to try this.
(10:08):
And it took me several years tofind a doctor that would
finally say that.
But I still had it stuck in myhead and I've been working on
that and I'm finally getting towhere it's okay.
But I wish somebody would havejust said don't give up.
There's always a new option.
They're always coming out withnew things to try for us.
(10:28):
So that would be my answer tothat.
What about you, jen?
What would you wish to know?
Speaker 1 (10:34):
I think for me it would have been.
This is not yourgreat-grandmother's disease.
I heard all the stories aboutmy great-grandmother.
There weren't treatment options.
Here's your ibuprofen, goodluck.
That was the options, and I wasalways told about her, saw
pictures of her in herwheelchair.
My mom told me that she alwayspurchased canvas shoes and would
(10:58):
cut holes out in the sideswhere her bunions, where her
nodules and all the damage thatwas done to her toes.
She would cut holes out for herfeet and they talked about her
knobby fingers and all thecontorted joints.
I thought it was an old person'sdisease.
Many of us did right.
You hear the word arthritis youautomatically we can't help it.
I mean, obviously we'reeducated and we know now, but in
(11:21):
those early years we don't knowthat and so it's not my great
grandmother's disease.
There's options.
I can still hopefully live aseemingly normal life and I
don't know about you guys, but Ifeel like we kind of sometimes
do.
It kind of is a little rollercoaster, but we have those days
where we feel semi-normal,whatever that I don't know if
(11:42):
I'm normal even without beingill.
So normal is what is even normalyeah, maybe that's not even the
right word, but live living andfeeling like ourselves again
right, blendable.
Speaker 3 (11:53):
You want to blend in with the rest of society that
does it.
You want to live like you'reactually not sick.
You want to live like you don'tlook sick because you don't
look sick.
So you want to live like theones who are not ill.
Speaker 1 (12:06):
You want to blame.
I'm going to take that as acompliment.
I don't look sick, you know youdon't look sick.
Speaker 3 (12:11):
So what's your answer , andy?
So again, andy's the weird one,right.
Andy's the weird one becauseAndy knew, right, and in my case
, because I was a nurse.
Andy wishes that she didn'tknow as much as she knew,
because then I wouldn't havebeen as frustrated as I was.
I wish that I could have beencompletely oblivious and it
literally just been.
(12:32):
They're trying to figure it out.
But Andy knew, and she knewwhat things she needed.
She just wasn't getting thehelp.
Now I think that in my what Iwish I would have known outside
of the care portion, I wish Iwould have known more people
that at the time I was goingthrough, was also someone that
can support me.
(12:52):
I wish that I had communitythen, because I probably
wouldn't have spiraled intodepression.
I wish that there were morepeople that looked like me, that
were chronically ill, butinvisibly ill where it wasn't.
It's all in your head.
I think that that would havechanged my anger cycle a lot,
because I wouldn't have felt asisolated, but because I did know
(13:13):
the information.
I think the biggest element thatwas missing for me in my
diagnosis journey was literallycommunity and again attaching it
back to the happiest, worst dayof my life, the worst, best day
(13:41):
of my life.
I didn't find community untilthe heart attack.
You see what I'm saying, and soI think God uses certain
situations in my lifeparticularly to go.
Hey, maybe you needed a pause,and I get that you're frustrated
, but let me just show you thatthere are people like you 16, 18
(14:05):
years of living chronically ill, self-isolating, and so I
encourage people please findcommunity, find sisterhood and
brotherhood, so that you don'tspiral in self-isolation.
It can become very dark, butyou don't have to carry it by
yourself self.
There is someone that's in yourshoes, that has walked the path
(14:26):
before you to make it a littlebit easier on you if you ever
have to go through it or as yougo through it.
But I think the biggest thing Iwish I would have had was
community.
Speaker 1 (14:33):
We have a tendency to live on an island.
It's safer there, protectingourselves from being hurt, from
feeling like we're not heard orunderstood or feeling judged,
but we are so not meant to liveon that island.
We were created to havecommunity and friendships, and
support.
Speaker 2 (14:52):
Sometimes we get so deep into our chronic illness
that we can't see past theisland.
We can't see what's beyond thatbarrier, those walls that we
put up.
I mean, you both know I am oneof the biggest hiders and it's
hard, but I'm telling you, ifyou're listening and you're a
(15:15):
hider and you like to go hideaway in a dark room like I did,
no, it's really safe out hereand it's joyful and it's happy
and you will find the communityout here.
You will find the rightcommunity for you, as we did.
Don't be a turtle.
Speaker 3 (15:36):
Turtles are so cute, but also, I mean, it's so dark.
Yep, get out your shell.
Speaker 2 (15:42):
And listeners these guys have brought me out of my
shell and I'm telling you, ifyou listen this season, you're
going to see how you can get outof your shell.
And listeners these guys havebrought me out of my shell and
I'm telling you, if you listenthis season, you're gonna see
how you can get out of yourshell as well, and I'm you won't
be disappointed did you say ifyou listen, you mean when that
is something we are working on,still andy me saying yes instead
of we.
We will do it.
So everybody knows.
(16:03):
Now I say if, instead of yes,we're going to do it, because I
second guess everything.
Speaker 1 (16:08):
When you listen and when you come back, you are
going to be filled with support,laughter, community and so many
good things ahead, so many goodthings ahead.
I'm going to move on to ournext question.
It's how did you handle theflood or sometimes the lack of
information from your care team?
Speaker 2 (16:28):
That was hard for me, because there were times where
I didn't realize I was lackingin information, because I didn't
even know where to begin to getthe information, because my
first rheumatologist I didn'teven get a pamphlet about RA.
I was just handed here's yourdiagnosis and here's a
prescription, nothing else.
(16:48):
So for me I had to be carefulabout going down a rabbit hole
of Google because I was lacking.
Speaker 3 (16:56):
It was a rheumatologist, Wait a
rheumatologist didn't give you apamphlet.
That's wild to me, so I'm goingto share just another wild
piece about this doctor.
Speaker 2 (17:06):
His practitioner nurse went to him and said you
need to come, look at her.
This is not fibromyalgia, thisis.
There's something going on.
And he refused to leave hisoffice.
He said no, it's just afibromyalgia fetal layer.
And she came back into the roomand you guys all know sometimes
they're not supposed to docertain things she goes.
(17:27):
I think in your best interestyou need to research other
rheumatologists.
I will continue to see youuntil you can find one.
Because she knew there was morethere than what he was willing
because of my age at the time Iwas about 30 and everybody else
(17:49):
in his waiting room was in their70s and 80s, yep, and he.
So he didn't give me anything.
So I literally was on thisisland again by myself, no
information.
All I knew about RA was what Iknew from my mom, which is
different, like there was moreinformation.
So I went down a rabbit holeand I had to stop myself because
(18:10):
it was not healthy.
But my new rheumatologist when Ifinally seen him, he started
handing me information, hestarted getting.
So that's the importance.
I want to say is fire yourdoctors if you're not getting
anywhere.
I want to say is fire yourdoctors.
If you're not getting anywhere,if they're not giving you
pamphlets when they diagnose you, right then and there, find a
new doctor.
Stay with that person until youcan find a better one, but
(18:33):
don't stay.
What about you?
Speaker 3 (18:34):
Andy.
So how did I handle my flood ofemotions?
As I told you that, there was alot of anger involved.
So I did a lot of rage rooms, Istarted my meditation practice
and my breath work and EFTtapping and I literally I had to
dig myself out of the spiralthat had happened.
I know that the Internet can beyour worst enemy, but I started
(18:55):
for everything that they toldme, everything that we're going
to give you this medication.
I instantly went OK, how can Iholistically do this?
If there's a medication,there's a food, if there's a
medication, there's a food, andI know that at least it could be
complimentary to whatevermedication regime I have to be
on right.
So, whatever that looks like,maybe the things that I'm eating
(19:18):
is expediting how I feel likecrap, and I started to dig into
what types of things am I eatingfor real?
And although that they werehealthy for me, my body didn't
like them, although they weredeemed healthy foods.
There were certain vegetablesthat I couldn't eat because it
made me feel like crap.
It was certain proteins that Icouldn't digest and all kinds of
things, and I realized for meit was layers to this right, and
(19:42):
so I sat down and I sat with me.
Let's start to digest thelayers, the things that I can
control.
Like I can't control what thedoctors think and they can think
that I'm crazy, but I know thatI live in my body so I can
control the layers.
And I started controlling mylayers by controlling my gut.
But as I started cooking thingsmy stress level kind of you
know it got a little bit lower.
(20:04):
I researched holistic angles tothe diagnosis that I had on
paper, because in my mind I knewwe didn't always have
medications but we've always hadsome illnesses, right, and for
my family I know that there werefamily members of mine that had
autoimmune diseases that didn'thave access to care and they
(20:24):
lived a very long life, verylong life into their eighties
and nineties, with no access tocare because they didn't have
those things then.
Right.
But I also know that they atedifferently and I wanted to know
what that felt like.
So I started on me.
But I worked through my mentalhurdle.
I had to accept it.
I had to accept it was mydiagnosis on paper.
But just because it was that onpaper didn't mean it became my
(20:48):
life and my truth.
Once I decided that all of theinformation or lack of
information that was making mespiral didn't actually mean that
I couldn't go and do all of thethings that I had been doing
prior to, when they put a nameto the thing that I had been
feeling all along.
I sat with that, because westop living the minute we get
(21:10):
that thing.
That sounds scary, but we wereliving all the way up until they
put a name to it, and so when Iprocess my emotions in that way
, I had a very full life.
I might not have been able todo things much, but I was still
enjoying my life, sick or notsick, I was still surrounded by
love and all the things, and Iwas still out there doing things
(21:31):
.
I was frustrated because I hadto do them differently, but I
was living.
I got my diagnosis and Iturtled and I stopped living All
of the things that they toldyou you could no longer do.
I believe that to be true untilone day I decided I want to try
to do it and I still could.
Then that anger comes back.
You can still do this.
What are you doing?
Okay, but yeah, I wasintentional about giving myself
(21:55):
another perspective.
I was very intentional aboutthere is a different perspective
and I'm choosing the dark.
How about you, jen?
Speaker 1 (22:02):
I just have to say that's a lonely place.
Speaker 3 (22:04):
It's very lonely.
Speaker 2 (22:05):
Yeah.
Speaker 1 (22:05):
And it breaks my heart that so many of us have
been in that place.
Speaker 2 (22:09):
Yeah, but that's why we're here is so to find those
people that feel like we did, sothey don't have to go through
this alone.
I think that's why everythinglike this episode and the coming
episodes are about this seasonis really making that connection
with our community even tighterand closer, so these newly
(22:30):
diagnosed future friends of oursand Spoonies will know they're
not alone and maybe they won'tturtle as long as I did and as
long as you guys did.
I hope one person, if oneperson, hears this today and
knows they're not alone in thisand goes okay, I can do this
today.
Speaker 1 (22:50):
Absolutely, absolutely.
And how did I deal with theflood of information?
I became obsessed.
That's the best way to explainit.
I became obsessed.
There was one person that Ifound.
There was an account that Icame across and she was big in
the RA community back when I wasdiagnosed in 2012.
And she was working hard and Iwould see her down in DC
(23:12):
fighting for us.
She wanted to get the namechanged from rheumatoid
arthritis to rheumatoid disease.
Oh, her name was Kelly.
I can't think of the last namebut Kelly.
If you look up rheumatoiddisease and Kelly, I'm sure
you'll figure it out and find it.
But I went down the rabbit holeof following her blog, her
Facebook, all of that, and I wasobsessed because I wanted all
(23:33):
the information.
But some of the information Igot along the way was not
correct information and so Ilived in this constant state of
sickness and fear, and that'snot healthy either.
It was a perpetual cycle that Inow look back and I feel like I
went about it wronged.
I got angry a lot with people.
(23:54):
In another episode that peopleare going to hear, a friend of
mine was trying to talk me intojuicing because she was
convinced juicing was going toheal me.
No, maybe it's good for you,but it's not going to take the
RA away.
And so it was this anger of whyaren't people listening to me?
Why aren't people getting it?
Do they not take me seriously?
Do they not believe this iswhat I have?
(24:15):
It was just so much of that.
I don't think I dealt with itat all or in a healthy way.
It was just constant research,fear, frustration that's my
answer.
Speaker 3 (24:26):
So I just want to pivot for a second and I want to
talk about something that Ithink we all go through at some
point in time in our chronicillness journey.
Did you ever feel like you hadto prove to people that you were
sick?
Speaker 1 (24:38):
Absolutely.
I constantly felt like I wasnot believed.
I constantly felt like I had toprove myself, and I think
that's part of why I was doingall the research and the reason
why I reacted the way I did wasbecause I felt like I had to
prove myself.
So, yeah, absolutely, I didwhat?
Speaker 3 (24:55):
about you.
I think that I still havemoments where I have to prove a
very, very real reality.
For me, just because I don'tlook ill does not mean I'm not
ill.
And so you guys know, I coachlike high school sports and I
train high school athletes.
And I have days where I wake upand my vision is not always
(25:19):
that great or I feel a littlebit off and so I can't do things
how I normally would do things,and so I'm a little bit slower
in my responses or my movementsand they kind of are reminded
then that coach is just a littlebit different, right, there's
times where I have to sit downand they're just kind of
reminded that coach is a littlebit different.
Right, there's times where Ihave to sit down and they're
just kind of reminded that coachis a little bit different.
(25:39):
But I think there are severalspaces that I go into.
When they hear that I'm blindand deaf, they go.
Oh, we didn't see that coming.
When they hear she had a heartattack at 40, they're like, oh
wait, no way.
And chronically ill, they go.
But you don't look sick.
It makes sick.
(25:59):
It makes you stop and think alot about what sick really looks
like right, I don't look sick.
In whose eyes?
What does sick actually looklike?
Because sick doesn't alwayslook like you're on your
deathbed, and for me now, sicklooks like joy.
Okay, I may not be able to skipfor miles, but I'm out here
cartwheeling and skipping, so tospeak.
You know how.
About you, linnea?
I?
Speaker 2 (26:15):
have and because they've seen me do all this
stuff like work all week but bythe weekend comes I can't.
I didn't have energy to doanything because I had used it
all up pushing through workevery day, proving you didn't
(26:40):
have time to do something withus.
But you could go do this.
I know they didn't mean it tohurt me, because it was a past
hurt that they felt, and if theywould have just brought it up
and maybe they wouldn't haveunderstood.
Speaker 3 (26:53):
Well, the question, though, is with that comes
frustration.
Right, how did you navigate itthen?
And are you navigating itdifferently now, like, what
things did you pick up along theway?
Because we all go through thelayers of frustration.
So what helpful things did youpick up along the way so that
you'd be a little lessfrustrated?
Speaker 2 (27:11):
I'm learning how to de-stress more With that
situation.
I felt like I needed toapologize for them, thinking I
didn't want to spend time withthem and did something else.
But at the time that's how Iwas coping.
Now I'm different.
If I want to do two differentthings, I have built in time in
(27:34):
my schedule to rest so I can domore things.
So I, so I can live more, so Ican be, so I can be me.
Speaker 3 (27:43):
I've apologized a lot .
I'm sorry I hurt your feelings.
I know you were looking forwardto doing this and it's not that
I don't want to do things withyou.
Is that my body's not going toallow me?
And because I don't look sick,you don't actually quite
understand what that means.
I don't have the energy to doit.
So when you hear, don't forgetyour spoons, my spoon drawer
(28:03):
empty.
All my spoons are in thedishwasher.
I can't do it.
And I had to get to a pointwhere I understand that and I
honored how much flatware I hadleft in my drawer.
Sometimes all I had was knivesand I was throwing those daggers
at people and I shouldn't havebeen Right.
And then I had forks.
Speaker 2 (28:20):
Yeah, at that time I couldn't explain, I think for
newly diagnosed I wasn't newly,but I still had troubles
explaining how my energy worked,how things happened.
So I think that you know it'sjust I feel guilty for hurting
somebody and I never want to,you know.
Speaker 3 (28:41):
Because you're looking at everybody else, move
off fluidly and you're like youwant to go have a good time and
it'll be a great time for you.
It'll be miserable for me and Iwill be going because it
brought you joy and I don't wantto upset you.
But you also don't quiteunderstand.
This is going to put me downfor a minute and I'm not going
to have joy, but I willsacrifice.
(29:01):
Essentially, you want me tosacrifice my being for a moment
of joy.
That may take me down for someweeks.
I didn't always have people thatunderstood when I was like I
don't have the capacity.
Now we could do anything else.
That's like low threat to mybody.
If you want to sit and hang out, watch movies, you want to read
(29:22):
books, you want to do somecrafting, we could sit somewhere
quiet where I'm not in sensoryoverload.
But the activity that was goingto be me overly exerting, I
can't do it.
But I'll gladly take a raincheck.
My guilt came from the lastminute cancellations when I had
to do that to people I knew.
I said I was going to do it.
I told you I was going to go amonth ago and then the day of
(29:44):
I'm like whoa, hey, flair, niceto meet you, right, and I feel
bad that I had to tell you onthe day of I know that we said
we were going to do this, but Ican't.
Early on in my chronic illnessjourney, my friend group didn't
always understand, or didn'tunderstand.
More often than not they didn'tunderstand.
I was literally referred to asthe flaky friend.
Now, was that fun?
(30:05):
No, and then that one time whenI died.
Then they were like oh, you'resick, right, I'm not the flaky
friend.
You just couldn't see what allwas happening and I didn't tell
you.
Right, I really do want to bethere with you.
I just don't always have thecapacity to do that.
When I started honoring that, Ididn't have the capacity to do
that.
My relationships dynamicschanged and people could show up
(30:28):
for me because I wasn't in myturtle shell.
I'll deal with it by myself.
You won't get it.
Leave me alone.
You won't even understand.
When I started coming out thatturtle shell hey, this is what's
going on I realized that peoplestarted to research to
understand so that they couldoffer something other than.
How about this green juice?
Or if you just intermittentfasted for 21 days, you won't
(30:52):
have RA anymore.
Your lupus will go away If youmix these herbs from some random
place in.
Wherever it's coming from, it'sgoing to cure all of the things
, and you just got to take likethree sips of some castor oil.
I've heard some really randomthings of the how to heal myself
.
All have laxative effects andso I don't feel like my
(31:13):
autoimmune disease is going tocome out of my rectum and so I
won't be listening to thatadvice.
And you're probably wondering,andy, how do we get here?
I don't know, and you'rewelcome.
So there you go.
Wow.
Speaker 2 (31:26):
I loved it.
I like it being me, but you'reright, you're right.
That's all I can say about that.
Speaker 1 (31:32):
I think that needs to be one of our how do we get
here?
Episodes.
Okay, no matter where you arein your chronic illness journey,
whether you're newly diagnosedor years in this community is
here for you.
You are seen, you are heard andyou are not doing this alone.
Make sure to share this episodewith someone who's just
starting out and, if you haven'talready, follow us on Instagram
(31:55):
at MySpoonieSisters, for dailytips, laugh and love.
Of course, come back for parttwo and don't forget we have
some books available, but we'lltalk about that next time.
Speaker 2 (32:05):
Right.
Speaker 1 (32:06):
Yeah, we will yes we will.
All right listeners, until nexttime.
Don't forget your spoon.
Welcome back to my Spoonie Sisters, season 5.
We're kicking things off with aheartfelt real-talk episode for
anyone who's just heard thewords.
You have a chronic illness.
Whether you're feelingoverwhelmed, confused or just
downright scared, this episodeis your survival guide.
We've been there and, trust us,you're not alone.
(00:22):
Today, I'm joined by two of myfavorite co-hosts, andy and
Lenia, to share what we wish wehad known when we were first
diagnosed.
From navigating appointments tofacing down Dr Google, we're
getting honest about the fears,the flares and the foundations
of finding your new normal.
(00:42):
Let's dive in with somequestions that might just answer
what's been swirling throughyour mind since diagnosis day.
Ladies, hello, hello.
How are you doing today?
Hello, hello there Spoonies.
Long time no see, at least.
Well, more like long time nohear for listeners.
Speaker 3 (01:01):
Well, a little bit of both, because they get clips
right.
So it's both long time no seeand also long time no hear.
It's been like a month ofSundays since the last time we
got to chat with our fam.
But first, can we just get intothese earrings?
Okay, because all of them.
Because the thing is, these areclip worthy earrings.
So let's just get into theseearrings.
I just need you guys to noticethat today I chose thermometers.
(01:25):
Why?
Because we're in the midst of aheat wave and it is insanely
hot.
For no reason, last night atabout 11, it was still 92
degrees.
I don't live in Arizona.
I didn't sign up for thatAbnormal right.
Abnormal right Random inVirginia, and I found myself at
about midnight asking myself howdid we get here?
(01:46):
Why is it 90 degrees?
Why does my upstairs?
Why is it 78, but thethermostat set to 70?
It wasn't good for hot flashes.
Guys, jen has on some coolearrings.
Speaker 1 (01:57):
I have some made by the one and only Jewel.
For anyone that knows her.
I actually put these on facingthe same direction, but they
keep flipping.
So you've got my SpoonieSisters on one side and my face
on the other.
Speaker 2 (02:10):
Mine are made by Jewel.
It's got the semicolonbutterfly but I did put them on
the other way where one of eachshowed.
But you can see the butterflieswere shown but the other side
is imperfectly perfect.
I'm just glad I have coolearrings like.
Speaker 1 (02:30):
Andy.
Now, andy, you touched onsomething quite interesting.
You mentioned a couple of keywords that have to do with what
season five has in store.
You did, you did I don't evenrealize yet, because yesterday
we were discussing segments.
(02:50):
We're having different kinds ofsegments this season to keep
people on our toes and youmentioned something really,
really important, did I say howdid we get here?
Speaker 3 (03:02):
listen guys, you guys are in for a treat because and
Andy has a lot of how do we gethere?
Moments she does, andy has alot.
How did we get here?
Speaker 2 (03:11):
I thought you did it intentionally.
Actually season five, but itwas.
Speaker 3 (03:16):
No, genuinely trying to figure out how we got here.
And so, guys, that's a goodsegue.
The thing is, if you arelooking to try to figure out how
you possibly got there, thisseason we're bringing so much
fun stuff.
We are introducing the segmenthow Did we Get here, where you
can anonymously submit scenariosand your Spoonie sisters will
give you whatever type of advicewe may have about your scenario
(03:39):
, which most likely may end ornot end in Andy saying, well,
how did we get here?
But we're going to try tocollectively help you find a way
out of however you got there.
Speaker 1 (03:50):
I'm excited.
I have a challenge for thethree of us too.
I challenge us.
I think we came up with mineyesterday, but we're not going
to talk about that again today.
But I think we are each goingto share a how did we get here?
Story of our own, absolutely.
I do that every day, everysingle day.
We have some good ones, I knowwe do, I'm going to try to keep
us on task, so I'm going to diveright into our first question.
(04:10):
Okay, andy, I'm going to startwith you.
What do you remember most aboutthe moment that you were first
diagnosed?
I know that's kind of a hardquestion, because you've been
diagnosed with multiple things,but pick one, I guess.
And was it a sense of relief,confusion, or a little bit of
everything?
Speaker 3 (04:33):
Okay, the moment I remember most about when I was
first diagnosed.
Well, I was at PT and we wereplaying ultimate Frisbee and I
collapsed.
I collapsed because my kidneyswere like ha ha, we don't want
to do this.
And so, prior to that, it wasall in my head not, it's lupus.
And so when my kidneys startedfailing and I collapsed, when I
was in a German hospital, hesays to me, after running labs
(04:54):
and sending all the people in,you know, you got lupus.
Now, prior to that, it was likeyears and years of there is
nothing wrong with you, althoughmy lab said there was clearly
something going on.
And so would I say it was asense of relief.
Hell, no, andy was pissed, andshe was pissed for many, many,
many years, like double digitdonkey years.
I was angry and it's because Ifelt and I still feel this way.
(05:16):
Had they listened to me theperson who walks all day,
breathes in this skin suit whenI said, hey, I don't feel well
and this is going on, I wouldprobably have felt relief.
But for me, I didn't actuallyfeel any relief until after my
heart attack, because peoplestarted listening.
Yeah, unfortunately, it's not afluffy, happy answer.
(05:37):
I didn't feel any relief untilfive years ago because people
started listening.
I'm literally the CEO of mybody.
I live here in this skin suit.
I would think I know what'shappening in my body, but a lot
of the times in my situation itwasn't until tragedy struck,
something horrible happened.
Then they were like, oh,remember that one time you came
(05:58):
in with this complaint you wereright, but it wasn't until a
drastic decline happenedMeanwhile.
I knew it was happening andsaid, hey, this doesn't seem
right.
So it took years, a lot ofconfusion in the years up to
them, putting a name to it notbecause of the diagnosis
confusion Am I literally makingthis up?
(06:20):
And not relief, honestly untilI found ways to holistically
deal with it.
So I wasn't alwaysover-medicated.
So I didn't get relief untilabout five years ago and I
didn't get anything other thananger until about five years ago
.
How about you?
What was most about the momentyou were first diagnosed?
Speaker 1 (06:39):
It was a sense of relief because I'd been waiting
a year and I mean I've told youall my story many times and for
listeners, maybe you know, maybeyou don't know, but it was
quite a journey.
I had been seeing a doctor inanother city that just kept
handing me these pamphlets aboutlupus and RA and other things.
(06:59):
It was like, okay, you'regiving me medication but you're
not giving a name to it.
And now I understand thatbetter.
I know that they are working onnarrowing things down.
They really actually need moreinformation and sometimes that
information takes time.
I understand that now.
So I guess that's my advice tolisteners is try not to get
angry, like I did and like a lotof people do, because sometimes
(07:21):
the answers aren't going tocome right away.
I know that's frustrating, buthopefully your care team is
trying their best to help youand if they're not, keep
fighting, keep standing up foryourself, keep asking for more
tests or whatever it is you needto do.
I finally had to fire my doctorand once I saw my new
rheumatologist I walked in.
That very day he looked at mylabs, he looked at me and he
(07:42):
said you have rheumatoidarthritis.
Very day he looked at my labs.
He looked at me and he said youhave rheumatoid arthritis.
I don't know why we've beendancing around an answer this is
what you have.
And I left feeling hopeful thatwould be my answer.
I was hopeful and relieved.
Speaker 3 (07:53):
Hopeful is great.
I love that, Linnea.
How about you?
Speaker 2 (07:58):
I.
When I first was diagnosed, thedoctor kept flip-flopping back
and forth for me too, like fromfibromyalgia to RA, to lupus,
like all of them, and it finallytook me firing him because he
kept ignoring my symptoms andwouldn't give me medication or
(08:18):
up medication.
He just wasn't taking care ofme.
I actually went to a newrheumatologist as well, and that
first appointment he's likewe're going to do this and this
and this.
You have RA, I can see it here,I'm going to confirm it with
this test.
But I did not walk out of therefeeling hopeful.
I walked out scared.
(08:39):
I walked out fearful because Ihad watched my mom take this
journey before me.
Out fearful because I hadwatched my mom take this journey
before me.
At the time I did not realizethe amount of medication that
comes out for us, so I had it inmy head that I only had her
options and I didn't.
So once I figured that out,once I found the right people to
(08:59):
help me, from nutrition andeverything, it's made a
difference.
But I'm finally feeling hopeful.
Speaker 3 (09:05):
I love that.
I love a good hopeful moment.
I feel like we all deserve itright.
Once you hear the, you have thething we all almost immediately
go down the Dr Google rabbithole or the WebMD rabbit hole
because they tell it to us butnot give you all of the
information or what that lookslike, and sometimes we get the
(09:26):
worst case scenarios right.
Hopeful is the best outcome forwhat we deem to be the worst
case scenario when we get theinformation.
So what's something that youwish that somebody would have
told you early on, like for youwhen your mom was going through
it, and then now you goingthrough it, what do you wish
that you knew?
Speaker 2 (09:46):
I wish I would have done more research when she had
it to help her.
But I also wish somebody wouldhave said there are options for
you.
You're not going to lead thelife your mother had because of
RA.
I wish somebody would havespoke up and said we have tons
of options.
If this doesn't work, we'regoing to try this.
(10:08):
And it took me several years tofind a doctor that would
finally say that.
But I still had it stuck in myhead and I've been working on
that and I'm finally getting towhere it's okay.
But I wish somebody would havejust said don't give up.
There's always a new option.
They're always coming out withnew things to try for us.
(10:28):
So that would be my answer tothat.
What about you, jen?
What would you wish to know?
Speaker 1 (10:34):
I think for me it would have been.
This is not yourgreat-grandmother's disease.
I heard all the stories aboutmy great-grandmother.
There weren't treatment options.
Here's your ibuprofen, goodluck.
That was the options, and I wasalways told about her, saw
pictures of her in herwheelchair.
My mom told me that she alwayspurchased canvas shoes and would
(10:58):
cut holes out in the sideswhere her bunions, where her
nodules and all the damage thatwas done to her toes.
She would cut holes out for herfeet and they talked about her
knobby fingers and all thecontorted joints.
I thought it was an old person'sdisease.
Many of us did right.
You hear the word arthritis youautomatically we can't help it.
I mean, obviously we'reeducated and we know now, but in
(11:21):
those early years we don't knowthat and so it's not my great
grandmother's disease.
There's options.
I can still hopefully live aseemingly normal life and I
don't know about you guys, but Ifeel like we kind of sometimes
do.
It kind of is a little rollercoaster, but we have those days
where we feel semi-normal,whatever that I don't know if
(11:42):
I'm normal even without beingill.
So normal is what is even normalyeah, maybe that's not even the
right word, but live living andfeeling like ourselves again
right, blendable.
Speaker 3 (11:53):
You want to blend in with the rest of society that
does it.
You want to live like you'reactually not sick.
You want to live like you don'tlook sick because you don't
look sick.
So you want to live like theones who are not ill.
Speaker 1 (12:06):
You want to blame.
I'm going to take that as acompliment.
I don't look sick, you know youdon't look sick.
Speaker 3 (12:11):
So what's your answer , andy?
So again, andy's the weird one,right.
Andy's the weird one becauseAndy knew, right, and in my case
, because I was a nurse.
Andy wishes that she didn'tknow as much as she knew,
because then I wouldn't havebeen as frustrated as I was.
I wish that I could have beencompletely oblivious and it
literally just been.
(12:32):
They're trying to figure it out.
But Andy knew, and she knewwhat things she needed.
She just wasn't getting thehelp.
Now I think that in my what Iwish I would have known outside
of the care portion, I wish Iwould have known more people
that at the time I was goingthrough, was also someone that
can support me.
(12:52):
I wish that I had communitythen, because I probably
wouldn't have spiraled intodepression.
I wish that there were morepeople that looked like me, that
were chronically ill, butinvisibly ill where it wasn't.
It's all in your head.
I think that that would havechanged my anger cycle a lot,
because I wouldn't have felt asisolated, but because I did know
(13:13):
the information.
I think the biggest element thatwas missing for me in my
diagnosis journey was literallycommunity and again attaching it
back to the happiest, worst dayof my life, the worst, best day
(13:41):
of my life.
I didn't find community untilthe heart attack.
You see what I'm saying, and soI think God uses certain
situations in my lifeparticularly to go.
Hey, maybe you needed a pause,and I get that you're frustrated
, but let me just show you thatthere are people like you 16, 18
(14:05):
years of living chronically ill, self-isolating, and so I
encourage people please findcommunity, find sisterhood and
brotherhood, so that you don'tspiral in self-isolation.
It can become very dark, butyou don't have to carry it by
yourself self.
There is someone that's in yourshoes, that has walked the path
(14:26):
before you to make it a littlebit easier on you if you ever
have to go through it or as yougo through it.
But I think the biggest thing Iwish I would have had was
community.
Speaker 1 (14:33):
We have a tendency to live on an island.
It's safer there, protectingourselves from being hurt, from
feeling like we're not heard orunderstood or feeling judged,
but we are so not meant to liveon that island.
We were created to havecommunity and friendships, and
support.
Speaker 2 (14:52):
Sometimes we get so deep into our chronic illness
that we can't see past theisland.
We can't see what's beyond thatbarrier, those walls that we
put up.
I mean, you both know I am oneof the biggest hiders and it's
hard, but I'm telling you, ifyou're listening and you're a
(15:15):
hider and you like to go hideaway in a dark room like I did,
no, it's really safe out hereand it's joyful and it's happy
and you will find the communityout here.
You will find the rightcommunity for you, as we did.
Don't be a turtle.
Speaker 3 (15:36):
Turtles are so cute, but also, I mean, it's so dark.
Yep, get out your shell.
Speaker 2 (15:42):
And listeners these guys have brought me out of my
shell and I'm telling you, ifyou listen this season, you're
going to see how you can get outof your shell.
And listeners these guys havebrought me out of my shell and
I'm telling you, if you listenthis season, you're gonna see
how you can get out of yourshell as well, and I'm you won't
be disappointed did you say ifyou listen, you mean when that
is something we are working on,still andy me saying yes instead
of we.
We will do it.
So everybody knows.
(16:03):
Now I say if, instead of yes,we're going to do it, because I
second guess everything.
Speaker 1 (16:08):
When you listen and when you come back, you are
going to be filled with support,laughter, community and so many
good things ahead, so many goodthings ahead.
I'm going to move on to ournext question.
It's how did you handle theflood or sometimes the lack of
information from your care team?
Speaker 2 (16:28):
That was hard for me, because there were times where
I didn't realize I was lackingin information, because I didn't
even know where to begin to getthe information, because my
first rheumatologist I didn'teven get a pamphlet about RA.
I was just handed here's yourdiagnosis and here's a
prescription, nothing else.
(16:48):
So for me I had to be carefulabout going down a rabbit hole
of Google because I was lacking.
Speaker 3 (16:56):
It was a rheumatologist, Wait a
rheumatologist didn't give you apamphlet.
That's wild to me, so I'm goingto share just another wild
piece about this doctor.
Speaker 2 (17:06):
His practitioner nurse went to him and said you
need to come, look at her.
This is not fibromyalgia, thisis.
There's something going on.
And he refused to leave hisoffice.
He said no, it's just afibromyalgia fetal layer.
And she came back into the roomand you guys all know sometimes
they're not supposed to docertain things she goes.
(17:27):
I think in your best interestyou need to research other
rheumatologists.
I will continue to see youuntil you can find one.
Because she knew there was morethere than what he was willing
because of my age at the time Iwas about 30 and everybody else
(17:49):
in his waiting room was in their70s and 80s, yep, and he.
So he didn't give me anything.
So I literally was on thisisland again by myself, no
information.
All I knew about RA was what Iknew from my mom, which is
different, like there was moreinformation.
So I went down a rabbit holeand I had to stop myself because
(18:10):
it was not healthy.
But my new rheumatologist when Ifinally seen him, he started
handing me information, hestarted getting.
So that's the importance.
I want to say is fire yourdoctors if you're not getting
anywhere.
I want to say is fire yourdoctors.
If you're not getting anywhere,if they're not giving you
pamphlets when they diagnose you, right then and there, find a
new doctor.
Stay with that person until youcan find a better one, but
(18:33):
don't stay.
What about you?
Speaker 3 (18:34):
Andy.
So how did I handle my flood ofemotions?
As I told you that, there was alot of anger involved.
So I did a lot of rage rooms, Istarted my meditation practice
and my breath work and EFTtapping and I literally I had to
dig myself out of the spiralthat had happened.
I know that the Internet can beyour worst enemy, but I started
(18:55):
for everything that they toldme, everything that we're going
to give you this medication.
I instantly went OK, how can Iholistically do this?
If there's a medication,there's a food, if there's a
medication, there's a food, andI know that at least it could be
complimentary to whatevermedication regime I have to be
on right.
So, whatever that looks like,maybe the things that I'm eating
(19:18):
is expediting how I feel likecrap, and I started to dig into
what types of things am I eatingfor real?
And although that they werehealthy for me, my body didn't
like them, although they weredeemed healthy foods.
There were certain vegetablesthat I couldn't eat because it
made me feel like crap.
It was certain proteins that Icouldn't digest and all kinds of
things, and I realized for meit was layers to this right, and
(19:42):
so I sat down and I sat with me.
Let's start to digest thelayers, the things that I can
control.
Like I can't control what thedoctors think and they can think
that I'm crazy, but I know thatI live in my body so I can
control the layers.
And I started controlling mylayers by controlling my gut.
But as I started cooking thingsmy stress level kind of you
know it got a little bit lower.
(20:04):
I researched holistic angles tothe diagnosis that I had on
paper, because in my mind I knewwe didn't always have
medications but we've always hadsome illnesses, right, and for
my family I know that there werefamily members of mine that had
autoimmune diseases that didn'thave access to care and they
(20:24):
lived a very long life, verylong life into their eighties
and nineties, with no access tocare because they didn't have
those things then.
Right.
But I also know that they atedifferently and I wanted to know
what that felt like.
So I started on me.
But I worked through my mentalhurdle.
I had to accept it.
I had to accept it was mydiagnosis on paper.
But just because it was that onpaper didn't mean it became my
(20:48):
life and my truth.
Once I decided that all of theinformation or lack of
information that was making mespiral didn't actually mean that
I couldn't go and do all of thethings that I had been doing
prior to, when they put a nameto the thing that I had been
feeling all along.
I sat with that, because westop living the minute we get
(21:10):
that thing.
That sounds scary, but we wereliving all the way up until they
put a name to it, and so when Iprocess my emotions in that way
, I had a very full life.
I might not have been able todo things much, but I was still
enjoying my life, sick or notsick, I was still surrounded by
love and all the things, and Iwas still out there doing things
(21:31):
.
I was frustrated because I hadto do them differently, but I
was living.
I got my diagnosis and Iturtled and I stopped living All
of the things that they toldyou you could no longer do.
I believe that to be true untilone day I decided I want to try
to do it and I still could.
Then that anger comes back.
You can still do this.
What are you doing?
Okay, but yeah, I wasintentional about giving myself
(21:55):
another perspective.
I was very intentional aboutthere is a different perspective
and I'm choosing the dark.
How about you, jen?
Speaker 1 (22:02):
I just have to say that's a lonely place.
Speaker 3 (22:04):
It's very lonely.
Speaker 2 (22:05):
Yeah.
Speaker 1 (22:05):
And it breaks my heart that so many of us have
been in that place.
Speaker 2 (22:09):
Yeah, but that's why we're here is so to find those
people that feel like we did, sothey don't have to go through
this alone.
I think that's why everythinglike this episode and the coming
episodes are about this seasonis really making that connection
with our community even tighterand closer, so these newly
(22:30):
diagnosed future friends of oursand Spoonies will know they're
not alone and maybe they won'tturtle as long as I did and as
long as you guys did.
I hope one person, if oneperson, hears this today and
knows they're not alone in thisand goes okay, I can do this
today.
Speaker 1 (22:50):
Absolutely, absolutely.
And how did I deal with theflood of information?
I became obsessed.
That's the best way to explainit.
I became obsessed.
There was one person that Ifound.
There was an account that Icame across and she was big in
the RA community back when I wasdiagnosed in 2012.
And she was working hard and Iwould see her down in DC
(23:12):
fighting for us.
She wanted to get the namechanged from rheumatoid
arthritis to rheumatoid disease.
Oh, her name was Kelly.
I can't think of the last namebut Kelly.
If you look up rheumatoiddisease and Kelly, I'm sure
you'll figure it out and find it.
But I went down the rabbit holeof following her blog, her
Facebook, all of that, and I wasobsessed because I wanted all
(23:33):
the information.
But some of the information Igot along the way was not
correct information and so Ilived in this constant state of
sickness and fear, and that'snot healthy either.
It was a perpetual cycle that Inow look back and I feel like I
went about it wronged.
I got angry a lot with people.
(23:54):
In another episode that peopleare going to hear, a friend of
mine was trying to talk me intojuicing because she was
convinced juicing was going toheal me.
No, maybe it's good for you,but it's not going to take the
RA away.
And so it was this anger of whyaren't people listening to me?
Why aren't people getting it?
Do they not take me seriously?
Do they not believe this iswhat I have?
(24:15):
It was just so much of that.
I don't think I dealt with itat all or in a healthy way.
It was just constant research,fear, frustration that's my
answer.
Speaker 3 (24:26):
So I just want to pivot for a second and I want to
talk about something that Ithink we all go through at some
point in time in our chronicillness journey.
Did you ever feel like you hadto prove to people that you were
sick?
Speaker 1 (24:38):
Absolutely.
I constantly felt like I wasnot believed.
I constantly felt like I had toprove myself, and I think
that's part of why I was doingall the research and the reason
why I reacted the way I did wasbecause I felt like I had to
prove myself.
So, yeah, absolutely, I didwhat?
Speaker 3 (24:55):
about you.
I think that I still havemoments where I have to prove a
very, very real reality.
For me, just because I don'tlook ill does not mean I'm not
ill.
And so you guys know, I coachlike high school sports and I
train high school athletes.
And I have days where I wake upand my vision is not always
(25:19):
that great or I feel a littlebit off and so I can't do things
how I normally would do things,and so I'm a little bit slower
in my responses or my movementsand they kind of are reminded
then that coach is just a littlebit different, right, there's
times where I have to sit downand they're just kind of
reminded that coach is a littlebit different.
Right, there's times where Ihave to sit down and they're
just kind of reminded that coachis a little bit different.
(25:39):
But I think there are severalspaces that I go into.
When they hear that I'm blindand deaf, they go.
Oh, we didn't see that coming.
When they hear she had a heartattack at 40, they're like, oh
wait, no way.
And chronically ill, they go.
But you don't look sick.
It makes sick.
(25:59):
It makes you stop and think alot about what sick really looks
like right, I don't look sick.
In whose eyes?
What does sick actually looklike?
Because sick doesn't alwayslook like you're on your
deathbed, and for me now, sicklooks like joy.
Okay, I may not be able to skipfor miles, but I'm out here
cartwheeling and skipping, so tospeak.
You know how.
About you, linnea?
I?
Speaker 2 (26:15):
have and because they've seen me do all this
stuff like work all week but bythe weekend comes I can't.
I didn't have energy to doanything because I had used it
all up pushing through workevery day, proving you didn't
(26:40):
have time to do something withus.
But you could go do this.
I know they didn't mean it tohurt me, because it was a past
hurt that they felt, and if theywould have just brought it up
and maybe they wouldn't haveunderstood.
Speaker 3 (26:53):
Well, the question, though, is with that comes
frustration.
Right, how did you navigate itthen?
And are you navigating itdifferently now, like, what
things did you pick up along theway?
Because we all go through thelayers of frustration.
So what helpful things did youpick up along the way so that
you'd be a little lessfrustrated?
Speaker 2 (27:11):
I'm learning how to de-stress more With that
situation.
I felt like I needed toapologize for them, thinking I
didn't want to spend time withthem and did something else.
But at the time that's how Iwas coping.
Now I'm different.
If I want to do two differentthings, I have built in time in
(27:34):
my schedule to rest so I can domore things.
So I, so I can live more, so Ican be, so I can be me.
Speaker 3 (27:43):
I've apologized a lot .
I'm sorry I hurt your feelings.
I know you were looking forwardto doing this and it's not that
I don't want to do things withyou.
Is that my body's not going toallow me?
And because I don't look sick,you don't actually quite
understand what that means.
I don't have the energy to doit.
So when you hear, don't forgetyour spoons, my spoon drawer
(28:03):
empty.
All my spoons are in thedishwasher.
I can't do it.
And I had to get to a pointwhere I understand that and I
honored how much flatware I hadleft in my drawer.
Sometimes all I had was knivesand I was throwing those daggers
at people and I shouldn't havebeen Right.
And then I had forks.
Speaker 2 (28:20):
Yeah, at that time I couldn't explain, I think for
newly diagnosed I wasn't newly,but I still had troubles
explaining how my energy worked,how things happened.
So I think that you know it'sjust I feel guilty for hurting
somebody and I never want to,you know.
Speaker 3 (28:41):
Because you're looking at everybody else, move
off fluidly and you're like youwant to go have a good time and
it'll be a great time for you.
It'll be miserable for me and Iwill be going because it
brought you joy and I don't wantto upset you.
But you also don't quiteunderstand.
This is going to put me downfor a minute and I'm not going
to have joy, but I willsacrifice.
(29:01):
Essentially, you want me tosacrifice my being for a moment
of joy.
That may take me down for someweeks.
I didn't always have people thatunderstood when I was like I
don't have the capacity.
Now we could do anything else.
That's like low threat to mybody.
If you want to sit and hang out, watch movies, you want to read
(29:22):
books, you want to do somecrafting, we could sit somewhere
quiet where I'm not in sensoryoverload.
But the activity that was goingto be me overly exerting, I
can't do it.
But I'll gladly take a raincheck.
My guilt came from the lastminute cancellations when I had
to do that to people I knew.
I said I was going to do it.
I told you I was going to go amonth ago and then the day of
(29:44):
I'm like whoa, hey, flair, niceto meet you, right, and I feel
bad that I had to tell you onthe day of I know that we said
we were going to do this, but Ican't.
Early on in my chronic illnessjourney, my friend group didn't
always understand, or didn'tunderstand.
More often than not they didn'tunderstand.
I was literally referred to asthe flaky friend.
Now, was that fun?
(30:05):
No, and then that one time whenI died.
Then they were like oh, you'resick, right, I'm not the flaky
friend.
You just couldn't see what allwas happening and I didn't tell
you.
Right, I really do want to bethere with you.
I just don't always have thecapacity to do that.
When I started honoring that, Ididn't have the capacity to do
that.
My relationships dynamicschanged and people could show up
(30:28):
for me because I wasn't in myturtle shell.
I'll deal with it by myself.
You won't get it.
Leave me alone.
You won't even understand.
When I started coming out thatturtle shell hey, this is what's
going on I realized that peoplestarted to research to
understand so that they couldoffer something other than.
How about this green juice?
Or if you just intermittentfasted for 21 days, you won't
(30:52):
have RA anymore.
Your lupus will go away If youmix these herbs from some random
place in.
Wherever it's coming from, it'sgoing to cure all of the things
, and you just got to take likethree sips of some castor oil.
I've heard some really randomthings of the how to heal myself
.
All have laxative effects andso I don't feel like my
(31:13):
autoimmune disease is going tocome out of my rectum and so I
won't be listening to thatadvice.
And you're probably wondering,andy, how do we get here?
I don't know, and you'rewelcome.
So there you go.
Wow.
Speaker 2 (31:26):
I loved it.
I like it being me, but you'reright, you're right.
That's all I can say about that.
Speaker 1 (31:32):
I think that needs to be one of our how do we get
here?
Episodes.
Okay, no matter where you arein your chronic illness journey,
whether you're newly diagnosedor years in this community is
here for you.
You are seen, you are heard andyou are not doing this alone.
Make sure to share this episodewith someone who's just
starting out and, if you haven'talready, follow us on Instagram
(31:55):
at MySpoonieSisters, for dailytips, laugh and love.
Of course, come back for parttwo and don't forget we have
some books available, but we'lltalk about that next time.
Speaker 2 (32:05):
Right.
Speaker 1 (32:06):
Yeah, we will yes we will.
All right listeners, until nexttime.
Don't forget your spoon.
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