May 19, 2025 • 36 mins
Have you ever found yourself scrolling through social media, seeing others with your same diagnosis seemingly thriving while you struggle to get out of bed? That gnawing feeling of "why them and not me?" isn't something we talk about enough in the chronic illness community.
The Spoonie Sisters dive deep into the complicated emotions of competition and comparison that silently impact many people with chronic conditions. Hosts Jen Weaver, Andi Byers, Linnea Knisley, and Angelic Ingram share their raw, honest experiences with jealousy, anger, and the overwhelming feelings that come when we measure our journeys against others.
Each sister reveals their personal turning point - from Andi's sixteen years of fighting for diagnosis validation while serving in the military to Linnea's realization that social media only shows highlight reels of chronic illness, not the full 24-hour reality. These powerful stories illuminate how comparison steals our joy and delays our healing, while community support transforms our experience.
For those newly diagnosed, this episode offers priceless wisdom: focus on your own journey, give yourself grace for small accomplishments, set healthy boundaries, and most importantly, let go of yesterday's struggles to embrace today's possibilities. As Linnea beautifully summarizes, "Compete in kindness instead of competing in suffering." Every win for one person in our community lifts us all.
Ready to transform your relationship with comparison and find your place in the chronic illness community? Listen now and remember that your journey isn't meant to look like anyone else's - it's uniquely, powerfully yours.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to another episode of my Spoonie
Sisters.
And today you've got Andy Byers, linnea Knisley, angelique
Ingram and, of course myself,jen Weaver, and we are going to
talk about competition.
Is it healthy?
Ooh, I feel like that's aloaded question Big time, even
in the chronic illness community, we have the sneaky thing that
(00:23):
wants to come on in and takeover our hearts, our minds and
our brains Competition Peopletrying to get the spot, trying
to get the blog post, trying toget the feature.
Ouch, because there's room forall of us, there's spaces for us
to share and to work togetherand to support each other,
because, at the end of the day,that's our goal is to help the
(00:44):
community and support each other, or at least that's what it
should be.
Speaker 2 (00:49):
What are your thoughts?
Absolutely.
I think that comparison in sucha way is healthy because we
want to.
We look up to a lot of thosepeople that we see out there,
like I'm inspired by you guys.
I take that as motivation formyself to want to show up more,
to want to do things.
But if I was to sit here andsay, oh my God, linnea just came
(01:09):
out with this journal, thisamazing journal, and I suck,
that could really, if I spiraldown that spiral, that could
really bring me down to anegative space where I won't
show up and where I won't do thethings that I want to do, where
I won't make the messages thatI want to share with the
community.
So you know, I thinkcompetition is healthy, but it
(01:30):
can also be very, very unhealthy, depending on where your
mindset is and I think it's allaround the mindset, right, girls
?
I think it's just.
It depends on where you're atin your space and how secure you
are with what you're wanting todo with your work and how you
want to show up.
Speaker 3 (01:48):
I think sometimes we confuse the two of inspiration
and comparison and they're notinterchangeable.
So I like that.
Angelique mentioned you guys insuch and such inspires, right,
and then we choose sometimes togo from inspiration to
comparison, but they're notinterchangeable.
We are inspired by a person andthen we compare all of our, all
(02:11):
of the things that we may havedone similarly.
That didn't play out the same,because we took the inspiration
as the blueprint versus takingthe inspiration for what it was,
as this inspired me toauthentically show up as myself,
not as myself in someone else'sexpectation or not as myself in
(02:36):
someone else's box or process,and I think it gets mixed up so
much that it becomes very catty.
I'm very much so inspired by allof you, ladies, but not in a
way that would make me go.
Let me then tear you down, orlet me say that I saw what you
did, but I can do it better.
I think that's where we flippedit in a way that is unhealthy
(02:57):
and toxic, when we take theinspiration and go but I can do
that better.
Where comparison comes in, Isee what you did, but I can do
that better, versus whencomparison comes in, I see what
you did, but I can do thatbetter versus.
I see what you did and Iappreciate that.
Can you show me how you did it,or do you mind sharing so that
we can grow?
We play this game ofgatekeeping where the
information dies with us, andthat shouldn't be the case
(03:20):
either.
Speaker 1 (03:21):
Right, right, yeah, gatekeeping.
You threw that word out there,I did, I did.
I'm kind of feeling guiltyright now and I know we're
having a very seriousconversation, but I'm going to
bring a little bit of humor inthere, because it was brought to
my attention.
Angelique, I wish you wouldhave been on this call.
I was just having a chat withyou know, andy and Linnea and
(03:42):
doing my hair, no big deal.
I was called out forgatekeeping a curling iron Is
that right?
A curling iron of all things?
I know, I know it's crazy, wow,but there's other things we
gatekeep as well.
You know, sometimes things likea curling iron.
It didn't even occur to us.
But there's other tools andgifts that people have that
(04:02):
they're afraid to share becausethey don't want people toshining
them.
Right, there's plenty of roomfor all of us.
Speaker 2 (04:08):
Absolutely, Absolutely, and we show up for
different people as well.
You know who.
You know.
Andy's community is differentthan Linnea's and mine's
different from yours, Jen, andyou know we just connect.
I think that's the beauty ofthe Spoonie Sisters community is
that we all come from different, diverse backgrounds.
We all come from differentwalks of life and you know we're
(04:31):
different ages and we canexpand our awareness, send our
messages, however we choose todo it, inspire each other,
continue to empower each other,but we're all doing it in such a
way that creates even moreengagement, right, and really
just reaching the people thatrelate to us, because everyone
relates differently, right.
(04:51):
So I think, with thecompetition again, I think it's
around the mindset and how youare and where you are in that
space.
Speaker 4 (04:59):
I would agree.
I know personally for me I hada moment in my journey where I
didn't get on social media quiteas much and if I got on there I
tried to watch things thatweren't in our community because
I got in a headspace that Ifelt I was being hard on myself
(05:21):
because I wasn't able to do whatother people were doing with
the same disease.
And sometimes early on in ourjourneys we think medicine,
everything that we do for ourbodies.
When we first get diagnosed, weare all different.
Everybody's disease actsdifferent.
But sometimes when you're newlydiagnosed, newly in your
(05:41):
journey, you don't realize thatsome of those people you see on
the screen are not showing 24hours of what their life is like
.
They're showing the good stuff.
I think as newly diagnosedpeople you don't realize that
because you're so caught up andso overwhelmed with everything
that the doctor just gave youthat you're seeing.
(06:02):
Oh, that person has RA on thescreen.
Why am I not able to do that?
Why am I not able to go bikeriding for an hour?
Why am I not able to do thosethings that they're doing?
And it's because we get in ourheads that the disease is the
same for everybody.
I think we need to share more,especially with our newly
(06:24):
diagnosed people, that it's nota competition in our community.
Everybody's journey iscompletely different, and I
think that's something we reallyneed to push a little bit more.
Speaker 1 (06:37):
I agree so much.
I'm looking at three women thatI love so, so much.
I look up to each of you indifferent ways.
You bring so much to my life,into the life of others, I
couldn't even dream of feelinglike I'm in competition with you
.
I want to cheer you on, I wantto be your cheerleader, I want
to see you do big, great things,and if there's some kind of
(06:58):
knowledge or tool or gift that Ican help you with, I'm going to
do it.
If you need me to make agraphic for you, I'm probably
going to do it, because thatseems like the right thing to do
, I guess.
Speaker 3 (07:07):
It's because you like to tinker.
Just be honest you like totinker.
Speaker 2 (07:12):
I do.
Speaker 3 (07:12):
That is why you're our.
Speaker 4 (07:13):
Tinkerbell.
Speaker 2 (07:14):
Nothing wrong with tinkering.
Speaker 4 (07:18):
Yes, she's our Tinkerbell.
Speaker 2 (07:20):
Yeah.
Speaker 1 (07:21):
I love it.
I love that.
That is my new nickname.
At the end of the day, that'swhat I do.
I want to see what I can do tohelp, support you in the best
way that I can, and maybe it isby tinkering and making
something for you.
Right, right we love yourtinkering.
Speaker 4 (07:40):
She tinkered for me this morning and she made me the
cutest Like.
She tinkered for me thismorning and she made me the
cutest post for April Fool's.
And I'm just like that girl.
She's back at tinkering.
She's off vacation, she's backand I missed it.
I missed getting things whereshe's tinkering going.
What do you think?
What do you?
So, as much as we tease herabout it, it's her way of
(08:02):
showing love to her friends.
It's her way of supporting herfriends and cheering you on to
be as successful as possible.
Speaker 2 (08:08):
That is her gift to you, absolutely, and it brings
her joy Exactly, and joy to usso.
Thank you so much.
We each have our own thing thatbrings us joy that we want to
share with our communities, andwe want to support our
communities with and from whatyou were saying too, linnea.
We all know we've all been rockbottom in our chronic illnesses
(08:31):
and I can understand and relateto that person who might be
listening now, thinking, goingthrough all the guilt, going
through the shame, going throughthe comparisons and feeling
like they're being left out orwhatnot, because when I was
first diagnosed withdermatomyositis in 2002, I
(08:51):
thought my world was crumbling.
I thought I didn't know whatwas happening to me.
All I knew was that I couldn'twalk, I couldn't eat food, I was
in a wheelchair before mydiagnosis came around.
So I was scared as hell.
I was just in such a darkperiod in my life and I know how
easy it is to sit there in painand not be able to do the
(09:14):
things that you're so used todoing.
And looking at these storiesand looking at these adventures
that people with chronicillnesses are taking, you know
that are a little bit more aheadin their journeys, but it's so
hard not to go down that spiral,and so I think for that person,
you know.
I just want to say keep thehope, have that hope, lean onto
(09:37):
your faith, lean onto the beliefthat you will rise up and that
you will get to that point whereyou're going to start sharing
your story and it might not beright now, but you, that you
will get to that point whereyou're going to start sharing
your story, and it might not beright now, but you are going to
get to that place where we are,where we're being able to
support the community and sharethe experiences that we need to
share.
And everybody is different, asyou said.
(09:58):
You know, we're all different.
We're all at different stagesin our chronic illnesses.
I sometimes feel guilty, evennow.
As you know, I'm a volunteerwith MSU and I'm one of the
volunteers that is in a betterplace with my myositis.
You know I have it managed andthere's so many others in the
community that are stillstruggling and it's very, very
(10:18):
hard to show up sometimesbecause I start to feel that
guilt, but it's it's.
It's so important to let it gobecause at the same time, I'm
giving them hope that one daythey're going to be in my, in my
shoes and they're going tostart walking my shoes in my
shoes as well.
It's, it's a.
It's a tough place to be.
It's a tough place to be.
Speaker 1 (10:40):
I think that's one thing that's beautiful about you
is you started your journeyback in 2002, but look how far
you've come and that's amazing.
And so, therefore, you canshare everything that you've
learned, everything that'sworked for you, everything
that's helped you.
You can share that within thecommunity and you're someone
that people can aspire to belike, and I hope you always
(11:05):
remember that it's okay to showup.
It's okay to show up even ifyou're doing better than others,
because, at the end of the day,if we're comparing our journey
to each other, yes, it can beeasy to do, but we need that
person to look up to.
We need that person to give ushope, and you're the person that
gives hope.
Speaker 2 (11:21):
And each one of us do it in our own unique ways, and
I love that.
Speaker 3 (11:25):
Indeed.
So, I have a question for you,ladies.
Ooh, ooh Right, I have aquestion.
It's a heavy hitter, right.
Yeah, how do you navigate yourperhaps feelings of jealousy,
especially like early on indiagnosis?
How did you navigate yourfeelings of jealousy toward the
other person with the samecondition that was doing things
(11:47):
that you couldn't do?
I struggled with that.
That's a good question, Istruggled with that for a very
long time.
Like we have the same diagnosis, why are you doing cartwheels
and I'm not doing cartwheels?
but, I was sitting in a space of.
I am very much so jealous thatyour body still does the things.
My body can't do the things.
(12:07):
So what kind of things did youguys do to navigate that?
Speaker 1 (12:12):
I can start if you don't mind.
Okay, my example is I knew alady.
We were starting a new church.
We had only been there a fewmonths when I woke up one day
with my knee, causing all thatpain, and before you know it,
all my joints were hurting,right.
Yeah, what I found out was thiswoman, she had RA, and I got
(12:34):
joyful because I thought okay, Ihave someone that can tell me
all the things she's going totell me, what can help control
this pain.
She can give me all the advice.
Well, it wasn't quite like thatshe was kind of a little more
abrasive.
She wasn't someone I feltcomfortable going to and I've
actually talked with my daughterabout this recently.
She just was not the kind ofperson that you could
comfortably talk to and shewould point you in the direction
(12:54):
you need to go, and so thatkind of made me angry and I kept
thinking why is she doing somuch better than I am?
I am struggling to even walkand she's out there playing
softball and doing all kinds ofcrazy things.
What I had to remind myself wasshe was diagnosed years ahead
of me.
She had tried all the differentthings.
(13:16):
She had found a combination ofmedication that helped her feel
the way she felt, and so,unfortunately, I had no one to
give me advice in the beginning.
I had no one to help reframe mymindset.
I unfortunately had to do thatall on my own, and I'm glad I
figured it out.
But that's why I do what I dois because I want to help white
people in a direction and helppeople to remember their life is
(13:40):
not over.
So that's my example.
I don't know if that's reallyan answer.
Speaker 2 (13:45):
That's good and I think it's very similar and
parallel to mine, because Ididn't have MSU.
You know, 20 plus years ago,you know MSU wasn't around, so
there was no one there withmyositis to help me and guide me
through anything of it.
It was all just brand new to me.
Tma was around, but they weremore on the research side of
things and they didn't reallyhave that great of support
(14:07):
groups at that time.
But I had to go down, I had togo spiral down.
I had no choice that.
I had to feel the uncertaintyof my myositis and I had to go
down that spiral in order to,okay, one day wake up and say
I'm going to beat this.
You know, I'm going to listento my friends who are around me
(14:32):
and being encouraging, wantingto take me out, but I just
refused to go out, even in awheelchair.
I think by doing that built moreresilience in myself and as I
started a couple of years later,as I started to respond well to
the medications that they weregiving me, I started to come out
from that.
But I think that just lettingyourself I started to come out
from that.
But I think that just lettingyourself, allowing yourself to
(14:55):
feel the sadness.
The depression is what I callit.
It was pretty much what I wasin is a depression.
I had to build from that and itwasn't easy.
I think what truly brought methrough that was when I decided
to take some holistic courses onmindfulness practice, on
(15:16):
mindset excuse me and around allthe alternative care modalities
that I really found fascinating.
And once I was able to kind ofget into that spectrum of care
because at the time before I gotsick I was actually on the PA
list to go to the PomonaPhysician Assistant Program.
(15:36):
And once I got sick and startedgoing in and out of hospitals, I
decided that hospitals was notwhere I wanted to be.
I didn't want to be in medicine, I needed to be somewhere else
where I can help the communitybut in a more holistic way.
And that's when I foundmindfulness practice and all
these different modalities thatI got certified in and licensed
(15:56):
in.
But it really helped me to seeand open myself up to letting go
of all of that guilt and theshame, and it's always a
practice.
I still struggle, you know, aswe all do.
You know we struggle with guiltand shame and insecurities and
things like that.
But I'm in a better place nowwhere these kinds of tools can
help me along the way, andknowing that I have these tools
(16:20):
and communities like my Spooniesisters and MSU now, it's really
all just kind of helped mebuild the resilience.
I think we're all kind oflearning our ways through our
illnesses through these kinds ofcommunities and there are more
and more and they're encouragingfor us to spread the awareness
to other people and to those whoare newly diagnosed.
(16:41):
So I think for me really, justgoing back, I had to go to hit
that rock bottom in that mindsetway and go through all the
emotions before actually openingmyself up to the.
Speaker 4 (16:54):
When I was first diagnosed, there wasn't
Instagram, tiktok, anything, itwas just Facebook.
I found a Facebook group and Ireally enjoyed it, but I
realized in my journey it wasdepressing me because it was
constant.
I don't want to say complaining, because people were just
(17:14):
asking for help, but every postwas about how bad they were
doing.
As much as I cheered people onand talked to them as much as I
could, it was starting to affectme.
Moving forward, getting out ofthat space of thinking about how
bad I am.
Once I moved out of that spaceof thinking about how bad I am,
(17:37):
once I moved out of that spaceand I found more chronically ill
people, more people with RA, Ifound the people that were doing
all those things I wasn't doing.
I'm on a walker, I'm on a cane.
I needed out of that negativespace of just constantly gosh is
that going to happen to me?
Because that's what I wasstarting to do to myself in that
(17:57):
group.
That person's going throughthis with RA.
Could it happen?
Could I end up in the hospitalfor months like she did, and so
I had to get out of there for mymindset?
But then I was in this middle ofnot feeling I fit in anywhere.
And then I got jealous of thoseseeing those videos of people
going on these great vacationsand hiking castles and doing all
(18:21):
these things that right now Icould not do.
I had to remind myself that Iseen a video of somebody and she
talked about her journey, andshe talked about the beginning
of her journey.
It all clicked and it was like,wow, so I can get there.
I'm in the middle, I'm almostthere.
It might take me longer than ittook them, but I fight that
(18:45):
feeling all the time and withinthe last six months it feels
like that feeling's gettingsmaller and smaller.
Where I don't feel like thattowards anybody, because now I'm
watching and going.
Look at them.
Look what they just did becauseof RA, even despite RA.
Look what they just did.
So that's where my mindset isnow.
(19:05):
Do I get discouraged?
Absolutely.
Am I jealous?
No, I'm cheering them onbecause they did it.
They did it and I'll get there.
I'll get there, I'll hike thosehigh cast, so that that's just.
Speaker 2 (19:20):
I love it.
I love it and you, Andy, for me.
Speaker 3 (19:24):
Well, see, that's the thing it's going to take you on
a journey.
I didn't actually start feelingsupported until a few years
back when I met Jen beingdiagnosed.
There's nobody that wanted totalk about it in the military
and I was in the boots when mydiagnosis started happening.
And I was in the boots when mydiagnosis started happening and
so for me, I was my.
(19:44):
My anger and jealousy were handin hand because I had people
also in uniform telling me thatI was faking.
But it's because they didn'tknow what was going on and they
hadn't done their research andthey just assumed that I didn't
want to do PT or I didn't wantto come to work Not that I
physically can't do those thingsanymore and that went on for
about 16 years.
It was she's lying, that's nothappening and we're still going
(20:06):
to deploy you and all the things.
And I pushed through no support.
So I was on deployments with nosupport, body hurting, like the
whole thing was a whole.
It was an entire how I had topause my tongue because
something bad almost came outcrap show.
It was a whole crap show of mejust trying to find support.
I think that my jealousy wasn'teven geared toward other sick
(20:31):
people.
My jealousy was actually gearedtoward the able-bodied ones
that just didn't see me like.
Me changing physically, mechanging mentally.
My jealousy was like but why isit me and not you?
I just want you to feel alittle bit of it so that you can
understand.
Over the last five years,though, that support looks
different, it's 100% not from aplace of jealousy, it is.
I have people that understandme and God's community is
(20:55):
everything.
Early in our diagnosis, we kindof isolate ourselves until we
find our people.
But I encourage people to findyour people, because the
isolation spirals you deeper,and that was what was happening
to me.
I was just spiraling deeper anddarker and deeper and darker
and then at one time I met Jesus, because I was still on the
(21:16):
spiral, you know, and it wasn'tuntil after that.
After the, you have to sit downwhere I sat with myself and said
what is this really over?
What are you really angry about?
Because at this point my rootwas that it's not that I
couldn't do things, it's thatthe things that I did before
look different in how I do themnow.
(21:37):
But I had to hit my literalrock bottom.
I had to hit the floor for meto slow down and go.
Okay, why is this reallybothering you?
Is it bothering you because youhave to do it a different way?
Or is it bothering you becauseyou genuinely can't do it?
And as I was going down thelist of things, I realized it
wasn't that I could notphysically do the things.
(21:58):
It's that my mind couldn't wrapits head around having to learn
how to do it.
They're here, guys.
Uh, it's that my mind couldn'twrap itself around learning how
to do it differently.
I was more so intimidated withthe new so I projected in anger
(22:18):
and I projected in jealousybecause I was so intimidated by
what my new life looked like,because it was so unknown.
It was like I don't know whattomorrow looks like.
And everything that I had seenvery similar to you, linnea, was
every group that I hadresearched.
It was like Debbie Downervillefor realsies.
I thought that I was on thebrink of death before I had
(22:40):
actually had the incident thatmade me meet Jesus.
I thought I wasn't going to beable to walk or run or play
volleyball.
And my providers didn't make iteasier, because when they give
you the information, they kindof word vomit a whole bunch of
words.
But then go deal with this.
Now for me, because I was anurse I hear it and I
immediately went to the worstcase scenario because I treated
(23:02):
patients that were the worstcase scenario, so I knew how bad
it could be.
I never got to see how good itcould be, but I always treated
how bad it could be.
And so now I'm on the side ofhow good it could be.
And it really did change when mymindset changed, because your
body keeps a score and you'reholding all the stress.
I was bottling and the more Ibottled, the more I hurt, the
(23:25):
more I spiral, the more Iisolated.
It wasn't until my mindsetchanged because I was around
people that understood and Ifelt safe to go.
Hey, I'm not okay, guys.
And it wasn't a get over it orI don't understand what the big
deal is.
It was those comments like oh,can't you just push through it?
Actually I can't.
My body told me I can't.
(23:45):
It's like they were at onepoint hearing it but not
applying it.
They were like, oh, this isjust a one-time thing and you'll
be fine next week.
And they would ask the samequestion and I would still feel
unsupported because the weekchanged, my conditions didn't,
but I was no longer angry orjealous or whatever.
It became more about educationfor me.
(24:06):
No, my circumstances didn'tchange and here's why it's
probably never going to change.
Will it improve?
Yes, will the diagnosis go away?
No, so will you see me likethis?
Sometimes?
Absolutely, and I need you tobe okay with that.
And the more people became okaywith me going I need you to be
okay with this because and themore people became okay with me
going I need you to be okay withthis because I can't change it
the better my mind was and thebetter my body started to feel.
(24:27):
But real quick to tell somebodyto sit with you, take five
minutes deep breathe, tap, dosomething, but sit with you and
love you through it, because youteach other people how to love
you and how to show up for youby how you love yourself and how
you show up for yourself.
Boundaries Didn't have them.
Things oh, I'm off cusp againDidn't have them before I got
(24:48):
sick.
And I got sick, sick andisolated.
Then I started havingboundaries.
My no was my no.
I can't do it, I don't want to.
Just no is a complete sentence,but that is yeah, my story was
trash.
It was trash.
16 years of trash, wow, wow.
Speaker 2 (25:04):
You said a word too that really kind of resonated
with me was anger.
You know, I think you know,when I first got sick that anger
was there.
It was just why me right, whyam I 32 years old?
I'm not able to do the thingsplay tennis, do the softball
things that I used to do?
I was just so angry.
(25:24):
I think we all go through thoseperiods of grieving who we were
right.
I mean, we all talk about itand I don't think we talk enough
about that grief, becausesometimes those little peaks of
grief are still sticking with us, right, and they still come up
and we still have to processthem.
And they still come up and westill have to process them.
But we're getting better aswe're building our resilience to
(25:45):
better navigate through ourjourneys.
That anger is tough and I knowhow hard it is to process and
get out from that mindset that,okay, there are people out there
who can support us and who canguide us and who can empower us
to do the right things and, toyou know, keep going in our
(26:06):
journey.
So anger is huge and I'm gladyou said that, but that's quite,
quite a story and I think weall have our stories that are
very similar, right, it's justhaving to.
I think it's just the importanceof communicating them, right?
I think so many of us reallyneed to come out and share your
story.
You know, tell your story, nomatter how small, how big.
(26:27):
I think it's so such anempowerful, a powerful tool for
the healing process for us andthen to help others and who can
resonate and build up from thatas well, just like we all have.
You know, we all listen toother stories that have
encouraged us and empowered usand inspired us.
It's important to keep theawareness going, and I'm so glad
(26:49):
that my Spanish Sisters is hereand you know you girls are just
doing an amazing, amazing jobat doing just that and sharing
the awareness, telling thestories, having the fun.
You know you have to have fun.
We have to have good laughs,right, Laughter is good medicine
, so we have to have all thethings.
So thanks, girls.
Speaker 1 (27:10):
What is one tip or piece of advice that you would
leave with someone that is newlydiagnosed?
Speaker 2 (27:18):
Well, for me on the topic, it would be don't compare
yourself to those out thereright now.
No comparisons.
Focus on yourself.
Focus on what's working for you, what is not working for you,
focus on your healing journeyfor now.
Listen to those who inspire you, but don't go down the
scrolling.
Don't go down that spiral ofscrolling and comparing yourself
(27:41):
, because you're very vulnerableright now.
You're very scared, you'reuncertain and you need to
surround yourself with thepeople who do really get it and
have been right where you are.
Speaker 3 (27:52):
I think my tip would be to take a pause.
I love telling people to take apause.
Take a pause where you are.
You have to understand itbefore other people can
understand it.
So handle yourself with carewhile you're trying to
understand what just happened toyou, how your life may change,
(28:14):
but don't go down the rabbithole of Google, and WebMD will
give you all the things.
If you're going to research,research from reputable sites,
but give yourself a time limitto research.
Don't spend all day researching, because you will come across
the stuff that you're lookingfor and you're not.
If you're going down the rabbithole of research, the majority
(28:37):
of the time people are notlooking for the positive
outcomes.
When they're going down therabbit hole of research, you're
going to come across the thingthat you were searching for.
The worst case scenario.
Ask yourself did you reallywant to know what is not
happening to you, so that you'renot planning your life around
what the worst case scenario is?
Because in the right now moment, acknowledge your right now.
(28:58):
Right now, that's not you, andright now you can still do
phenomenal things and your bodyis still allowing you to do
those things.
We allow our mind to change ourbelief system and our abilities,
because we got this thing andthe thing had a lot of letters
and probably not not a lot ofvowels, but it had a lot of
letters that, in the form of adiagnosis, and we go.
(29:20):
That means I have to stop.
We immediately feel like, or gothrough life initially as if
our bodies can't still do thethings it was doing 15 minutes
before we got the diagnosis.
It's just that quick howquickly the mindset changes
after you hear the thing andyou've gone down the rabbit hole
.
You quickly erase the fact thatall the way up until you got
the diagnosis, you were doingall of these things and then we
(29:44):
spiral.
I can't do, because Google saidand this is possibly going to
be my outcome but 15 minutesbefore you walked into that
doctor's office, you had done alot of phenomenal things in a
body that didn't play so nicewith you.
Love on.
You Pause in a moment and sitin that, understanding that your
body can still do some amazingthings.
Some amazing things, and it'snot going to look the same, but
(30:05):
it doesn't make it any lessbeautiful.
Speaker 4 (30:08):
I don't even know what to add, because they
covered everything.
I was kind of thinking about,like the research thing going
down the rabbit hole.
I'm telling you that's what Idid because I had nobody that I
knew in my life that had anychronic illness.
So I literally didn't knowwhere to go and I did start
(30:31):
going down the rabbit hole andit took me to some very, very
dark spots, very dark spaces,for longer than they should have
.
I should have been there, but Ialso think you have to.
This is something Jen's told meever since I've met her.
I need to learn to give myselfgrace.
You need to learn to giveyourself grace.
(30:51):
If all you did was get up out ofbed and two meals, three meals
then you accomplished something.
If all you did was get up anddo one load of laundry, you did
something.
Today, I think we forget, whenwe're sick, those little pieces.
Just getting out of bed, even,and moving to a couch and laying
(31:12):
down.
You got up.
That's a start.
That's a start and it's okay.
It's okay just to move from thebed to a chair, it's okay.
But don't just know you're notalone, even though you feel like
it.
We are out here.
We're this community, thesewomen right here on this screen.
We are out here and there'smore like us.
(31:33):
There's more like us that willcheer you on on your worst day
and until I met Jen, just likeAndy, I had the biggest
cheerleader.
She has always been one of mybiggest cheerleaders, besides my
husband and my children and mybest friend Susan, but that was
four cheerleaders.
Finding Jen brought me to awhole cheerleading squad Like
(31:56):
it's a whole squad now cheeringme on.
Even at my lowest moments I seeyou doing something and it's
like I feel like they postedthat for me, but in really, you
guys posted it for everybodylike me that needed it at the
moment.
So don't forget, you're notalone in this journey and we
love you, no matter if we've metyou or not.
We got your back, that's all,sorry, we certainly do.
Speaker 1 (32:18):
So.
My piece of advice is actuallyone little sneak peek out of the
book, and it's let it go Neverruin a good day by thinking
about a bad yesterday.
That's brilliant, I love it.
I think so often we get caughtup in that.
Yes, we do.
Speaker 2 (32:36):
We certainly do.
I love that.
I can't wait to get my hands onthis book.
Okay, do you ship to?
Speaker 1 (32:41):
Portugal.
For you, I would do anything.
Yeah, do you get?
Speaker 2 (32:46):
Amazon.
We use Spain's Amazon.
Speaker 4 (32:50):
We can find out.
If not, one of us will shipsomething to you.
We don't care how long it takes.
Speaker 2 (32:56):
I encourage everybody out there as well to get your
hands on this amazing journal.
I know it's going to bewonderful and such a great tool
to take on your journey.
So congratulations again,Linnea, on this beautiful
journal.
Yes, I love it.
Speaker 4 (33:12):
I'm excited for Jen's because it's coming soon.
Newly chronically ill peopleare going to get their have this
information and they're goingto be able to start this journey
a little bit smoother becauseof her book.
I can't wait to put it in thehands of people I know that just
(33:33):
got newly diagnosed.
I just can't wait for it Withmy journal too, ooh bundle,
bundle package.
Speaker 2 (33:42):
Oh my gosh, I love it .
Speaker 4 (33:47):
Mindset.
Speaker 2 (33:48):
Yeah, yeah, yeah, we're authors, jen.
Yeah, that's so awesome.
I'm actually working on mysecond collaboration right now
with the last publications on myuh around my journey with
myositis once again is onresilience.
So, yeah, looking forward, yay,yes, yeah.
Speaker 1 (34:04):
Yes, I have one last thing.
I want to remind people tocompete in kindness.
I know that sounds crazy.
Compete in kindness instead ofcompeting in suffering.
So let's compete in who can bethe most uplifting.
We don't need to worry aboutbeing the best advocate or the
strongest supporter, but be thekindest person.
Be the kindest person you canbe in the room.
(34:25):
At the end of the day, theSpoonie community is stronger
together.
So how about we celebrate eachother's wins, the big and the
small, because every stepforward for one of us is a big
step for every single one of us.
Speaker 2 (34:43):
Amen to that sister I love you.
Speaker 1 (34:45):
I love you guys, we have to do this.
I love our community Me too.
I suppose we have to end, yeah.
Speaker 4 (34:53):
We'll have to have her on again.
Speaker 1 (34:54):
Yes, yes for sure, let's make a list of all the
topics.
Yes, until next time, don'tforget your spirit.
Welcome back to another episode of my Spoonie
Sisters.
And today you've got Andy Byers, linnea Knisley, angelique
Ingram and, of course myself,jen Weaver, and we are going to
talk about competition.
Is it healthy?
Ooh, I feel like that's aloaded question Big time, even
in the chronic illness community, we have the sneaky thing that
(00:23):
wants to come on in and takeover our hearts, our minds and
our brains Competition Peopletrying to get the spot, trying
to get the blog post, trying toget the feature.
Ouch, because there's room forall of us, there's spaces for us
to share and to work togetherand to support each other,
because, at the end of the day,that's our goal is to help the
(00:44):
community and support each other, or at least that's what it
should be.
Speaker 2 (00:49):
What are your thoughts?
Absolutely.
I think that comparison in sucha way is healthy because we
want to.
We look up to a lot of thosepeople that we see out there,
like I'm inspired by you guys.
I take that as motivation formyself to want to show up more,
to want to do things.
But if I was to sit here andsay, oh my God, linnea just came
(01:09):
out with this journal, thisamazing journal, and I suck,
that could really, if I spiraldown that spiral, that could
really bring me down to anegative space where I won't
show up and where I won't do thethings that I want to do, where
I won't make the messages thatI want to share with the
community.
So you know, I thinkcompetition is healthy, but it
(01:30):
can also be very, very unhealthy, depending on where your
mindset is and I think it's allaround the mindset, right, girls
?
I think it's just.
It depends on where you're atin your space and how secure you
are with what you're wanting todo with your work and how you
want to show up.
Speaker 3 (01:48):
I think sometimes we confuse the two of inspiration
and comparison and they're notinterchangeable.
So I like that.
Angelique mentioned you guys insuch and such inspires, right,
and then we choose sometimes togo from inspiration to
comparison, but they're notinterchangeable.
We are inspired by a person andthen we compare all of our, all
(02:11):
of the things that we may havedone similarly.
That didn't play out the same,because we took the inspiration
as the blueprint versus takingthe inspiration for what it was,
as this inspired me toauthentically show up as myself,
not as myself in someone else'sexpectation or not as myself in
(02:36):
someone else's box or process,and I think it gets mixed up so
much that it becomes very catty.
I'm very much so inspired by allof you, ladies, but not in a
way that would make me go.
Let me then tear you down, orlet me say that I saw what you
did, but I can do it better.
I think that's where we flippedit in a way that is unhealthy
(02:57):
and toxic, when we take theinspiration and go but I can do
that better.
Where comparison comes in, Isee what you did, but I can do
that better, versus whencomparison comes in, I see what
you did, but I can do thatbetter versus.
I see what you did and Iappreciate that.
Can you show me how you did it,or do you mind sharing so that
we can grow?
We play this game ofgatekeeping where the
information dies with us, andthat shouldn't be the case
(03:20):
either.
Speaker 1 (03:21):
Right, right, yeah, gatekeeping.
You threw that word out there,I did, I did.
I'm kind of feeling guiltyright now and I know we're
having a very seriousconversation, but I'm going to
bring a little bit of humor inthere, because it was brought to
my attention.
Angelique, I wish you wouldhave been on this call.
I was just having a chat withyou know, andy and Linnea and
(03:42):
doing my hair, no big deal.
I was called out forgatekeeping a curling iron Is
that right?
A curling iron of all things?
I know, I know it's crazy, wow,but there's other things we
gatekeep as well.
You know, sometimes things likea curling iron.
It didn't even occur to us.
But there's other tools andgifts that people have that
(04:02):
they're afraid to share becausethey don't want people toshining
them.
Right, there's plenty of roomfor all of us.
Speaker 2 (04:08):
Absolutely, Absolutely, and we show up for
different people as well.
You know who.
You know.
Andy's community is differentthan Linnea's and mine's
different from yours, Jen, andyou know we just connect.
I think that's the beauty ofthe Spoonie Sisters community is
that we all come from different, diverse backgrounds.
We all come from differentwalks of life and you know we're
(04:31):
different ages and we canexpand our awareness, send our
messages, however we choose todo it, inspire each other,
continue to empower each other,but we're all doing it in such a
way that creates even moreengagement, right, and really
just reaching the people thatrelate to us, because everyone
relates differently, right.
(04:51):
So I think, with thecompetition again, I think it's
around the mindset and how youare and where you are in that
space.
Speaker 4 (04:59):
I would agree.
I know personally for me I hada moment in my journey where I
didn't get on social media quiteas much and if I got on there I
tried to watch things thatweren't in our community because
I got in a headspace that Ifelt I was being hard on myself
(05:21):
because I wasn't able to do whatother people were doing with
the same disease.
And sometimes early on in ourjourneys we think medicine,
everything that we do for ourbodies.
When we first get diagnosed, weare all different.
Everybody's disease actsdifferent.
But sometimes when you're newlydiagnosed, newly in your
(05:41):
journey, you don't realize thatsome of those people you see on
the screen are not showing 24hours of what their life is like
.
They're showing the good stuff.
I think as newly diagnosedpeople you don't realize that
because you're so caught up andso overwhelmed with everything
that the doctor just gave youthat you're seeing.
(06:02):
Oh, that person has RA on thescreen.
Why am I not able to do that?
Why am I not able to go bikeriding for an hour?
Why am I not able to do thosethings that they're doing?
And it's because we get in ourheads that the disease is the
same for everybody.
I think we need to share more,especially with our newly
(06:24):
diagnosed people, that it's nota competition in our community.
Everybody's journey iscompletely different, and I
think that's something we reallyneed to push a little bit more.
Speaker 1 (06:37):
I agree so much.
I'm looking at three women thatI love so, so much.
I look up to each of you indifferent ways.
You bring so much to my life,into the life of others, I
couldn't even dream of feelinglike I'm in competition with you
.
I want to cheer you on, I wantto be your cheerleader, I want
to see you do big, great things,and if there's some kind of
(06:58):
knowledge or tool or gift that Ican help you with, I'm going to
do it.
If you need me to make agraphic for you, I'm probably
going to do it, because thatseems like the right thing to do
, I guess.
Speaker 3 (07:07):
It's because you like to tinker.
Just be honest you like totinker.
Speaker 2 (07:12):
I do.
Speaker 3 (07:12):
That is why you're our.
Speaker 4 (07:13):
Tinkerbell.
Speaker 2 (07:14):
Nothing wrong with tinkering.
Speaker 4 (07:18):
Yes, she's our Tinkerbell.
Speaker 2 (07:20):
Yeah.
Speaker 1 (07:21):
I love it.
I love that.
That is my new nickname.
At the end of the day, that'swhat I do.
I want to see what I can do tohelp, support you in the best
way that I can, and maybe it isby tinkering and making
something for you.
Right, right we love yourtinkering.
Speaker 4 (07:40):
She tinkered for me this morning and she made me the
cutest Like.
She tinkered for me thismorning and she made me the
cutest post for April Fool's.
And I'm just like that girl.
She's back at tinkering.
She's off vacation, she's backand I missed it.
I missed getting things whereshe's tinkering going.
What do you think?
What do you?
So, as much as we tease herabout it, it's her way of
(08:02):
showing love to her friends.
It's her way of supporting herfriends and cheering you on to
be as successful as possible.
Speaker 2 (08:08):
That is her gift to you, absolutely, and it brings
her joy Exactly, and joy to usso.
Thank you so much.
We each have our own thing thatbrings us joy that we want to
share with our communities, andwe want to support our
communities with and from whatyou were saying too, linnea.
We all know we've all been rockbottom in our chronic illnesses
(08:31):
and I can understand and relateto that person who might be
listening now, thinking, goingthrough all the guilt, going
through the shame, going throughthe comparisons and feeling
like they're being left out orwhatnot, because when I was
first diagnosed withdermatomyositis in 2002, I
(08:51):
thought my world was crumbling.
I thought I didn't know whatwas happening to me.
All I knew was that I couldn'twalk, I couldn't eat food, I was
in a wheelchair before mydiagnosis came around.
So I was scared as hell.
I was just in such a darkperiod in my life and I know how
easy it is to sit there in painand not be able to do the
(09:14):
things that you're so used todoing.
And looking at these storiesand looking at these adventures
that people with chronicillnesses are taking, you know
that are a little bit more aheadin their journeys, but it's so
hard not to go down that spiral,and so I think for that person,
you know.
I just want to say keep thehope, have that hope, lean onto
(09:37):
your faith, lean onto the beliefthat you will rise up and that
you will get to that point whereyou're going to start sharing
your story and it might not beright now, but you, that you
will get to that point whereyou're going to start sharing
your story, and it might not beright now, but you are going to
get to that place where we are,where we're being able to
support the community and sharethe experiences that we need to
share.
And everybody is different, asyou said.
(09:58):
You know, we're all different.
We're all at different stagesin our chronic illnesses.
I sometimes feel guilty, evennow.
As you know, I'm a volunteerwith MSU and I'm one of the
volunteers that is in a betterplace with my myositis.
You know I have it managed andthere's so many others in the
community that are stillstruggling and it's very, very
(10:18):
hard to show up sometimesbecause I start to feel that
guilt, but it's it's.
It's so important to let it gobecause at the same time, I'm
giving them hope that one daythey're going to be in my, in my
shoes and they're going tostart walking my shoes in my
shoes as well.
It's, it's a.
It's a tough place to be.
It's a tough place to be.
Speaker 1 (10:40):
I think that's one thing that's beautiful about you
is you started your journeyback in 2002, but look how far
you've come and that's amazing.
And so, therefore, you canshare everything that you've
learned, everything that'sworked for you, everything
that's helped you.
You can share that within thecommunity and you're someone
that people can aspire to belike, and I hope you always
(11:05):
remember that it's okay to showup.
It's okay to show up even ifyou're doing better than others,
because, at the end of the day,if we're comparing our journey
to each other, yes, it can beeasy to do, but we need that
person to look up to.
We need that person to give ushope, and you're the person that
gives hope.
Speaker 2 (11:21):
And each one of us do it in our own unique ways, and
I love that.
Speaker 3 (11:25):
Indeed.
So, I have a question for you,ladies.
Ooh, ooh Right, I have aquestion.
It's a heavy hitter, right.
Yeah, how do you navigate yourperhaps feelings of jealousy,
especially like early on indiagnosis?
How did you navigate yourfeelings of jealousy toward the
other person with the samecondition that was doing things
(11:47):
that you couldn't do?
I struggled with that.
That's a good question, Istruggled with that for a very
long time.
Like we have the same diagnosis, why are you doing cartwheels
and I'm not doing cartwheels?
but, I was sitting in a space of.
I am very much so jealous thatyour body still does the things.
My body can't do the things.
(12:07):
So what kind of things did youguys do to navigate that?
Speaker 1 (12:12):
I can start if you don't mind.
Okay, my example is I knew alady.
We were starting a new church.
We had only been there a fewmonths when I woke up one day
with my knee, causing all thatpain, and before you know it,
all my joints were hurting,right.
Yeah, what I found out was thiswoman, she had RA, and I got
(12:34):
joyful because I thought okay, Ihave someone that can tell me
all the things she's going totell me, what can help control
this pain.
She can give me all the advice.
Well, it wasn't quite like thatshe was kind of a little more
abrasive.
She wasn't someone I feltcomfortable going to and I've
actually talked with my daughterabout this recently.
She just was not the kind ofperson that you could
comfortably talk to and shewould point you in the direction
(12:54):
you need to go, and so thatkind of made me angry and I kept
thinking why is she doing somuch better than I am?
I am struggling to even walkand she's out there playing
softball and doing all kinds ofcrazy things.
What I had to remind myself wasshe was diagnosed years ahead
of me.
She had tried all the differentthings.
(13:16):
She had found a combination ofmedication that helped her feel
the way she felt, and so,unfortunately, I had no one to
give me advice in the beginning.
I had no one to help reframe mymindset.
I unfortunately had to do thatall on my own, and I'm glad I
figured it out.
But that's why I do what I dois because I want to help white
people in a direction and helppeople to remember their life is
(13:40):
not over.
So that's my example.
I don't know if that's reallyan answer.
Speaker 2 (13:45):
That's good and I think it's very similar and
parallel to mine, because Ididn't have MSU.
You know, 20 plus years ago,you know MSU wasn't around, so
there was no one there withmyositis to help me and guide me
through anything of it.
It was all just brand new to me.
Tma was around, but they weremore on the research side of
things and they didn't reallyhave that great of support
(14:07):
groups at that time.
But I had to go down, I had togo spiral down.
I had no choice that.
I had to feel the uncertaintyof my myositis and I had to go
down that spiral in order to,okay, one day wake up and say
I'm going to beat this.
You know, I'm going to listento my friends who are around me
(14:32):
and being encouraging, wantingto take me out, but I just
refused to go out, even in awheelchair.
I think by doing that built moreresilience in myself and as I
started a couple of years later,as I started to respond well to
the medications that they weregiving me, I started to come out
from that.
But I think that just lettingyourself I started to come out
from that.
But I think that just lettingyourself, allowing yourself to
(14:55):
feel the sadness.
The depression is what I callit.
It was pretty much what I wasin is a depression.
I had to build from that and itwasn't easy.
I think what truly brought methrough that was when I decided
to take some holistic courses onmindfulness practice, on
(15:16):
mindset excuse me and around allthe alternative care modalities
that I really found fascinating.
And once I was able to kind ofget into that spectrum of care
because at the time before I gotsick I was actually on the PA
list to go to the PomonaPhysician Assistant Program.
(15:36):
And once I got sick and startedgoing in and out of hospitals, I
decided that hospitals was notwhere I wanted to be.
I didn't want to be in medicine, I needed to be somewhere else
where I can help the communitybut in a more holistic way.
And that's when I foundmindfulness practice and all
these different modalities thatI got certified in and licensed
(15:56):
in.
But it really helped me to seeand open myself up to letting go
of all of that guilt and theshame, and it's always a
practice.
I still struggle, you know, aswe all do.
You know we struggle with guiltand shame and insecurities and
things like that.
But I'm in a better place nowwhere these kinds of tools can
help me along the way, andknowing that I have these tools
(16:20):
and communities like my Spooniesisters and MSU now, it's really
all just kind of helped mebuild the resilience.
I think we're all kind oflearning our ways through our
illnesses through these kinds ofcommunities and there are more
and more and they're encouragingfor us to spread the awareness
to other people and to those whoare newly diagnosed.
(16:41):
So I think for me really, justgoing back, I had to go to hit
that rock bottom in that mindsetway and go through all the
emotions before actually openingmyself up to the.
Speaker 4 (16:54):
When I was first diagnosed, there wasn't
Instagram, tiktok, anything, itwas just Facebook.
I found a Facebook group and Ireally enjoyed it, but I
realized in my journey it wasdepressing me because it was
constant.
I don't want to say complaining, because people were just
(17:14):
asking for help, but every postwas about how bad they were
doing.
As much as I cheered people onand talked to them as much as I
could, it was starting to affectme.
Moving forward, getting out ofthat space of thinking about how
bad I am.
Once I moved out of that spaceof thinking about how bad I am,
(17:37):
once I moved out of that spaceand I found more chronically ill
people, more people with RA, Ifound the people that were doing
all those things I wasn't doing.
I'm on a walker, I'm on a cane.
I needed out of that negativespace of just constantly gosh is
that going to happen to me?
Because that's what I wasstarting to do to myself in that
(17:57):
group.
That person's going throughthis with RA.
Could it happen?
Could I end up in the hospitalfor months like she did, and so
I had to get out of there for mymindset?
But then I was in this middle ofnot feeling I fit in anywhere.
And then I got jealous of thoseseeing those videos of people
going on these great vacationsand hiking castles and doing all
(18:21):
these things that right now Icould not do.
I had to remind myself that Iseen a video of somebody and she
talked about her journey, andshe talked about the beginning
of her journey.
It all clicked and it was like,wow, so I can get there.
I'm in the middle, I'm almostthere.
It might take me longer than ittook them, but I fight that
(18:45):
feeling all the time and withinthe last six months it feels
like that feeling's gettingsmaller and smaller.
Where I don't feel like thattowards anybody, because now I'm
watching and going.
Look at them.
Look what they just did becauseof RA, even despite RA.
Look what they just did.
So that's where my mindset isnow.
(19:05):
Do I get discouraged?
Absolutely.
Am I jealous?
No, I'm cheering them onbecause they did it.
They did it and I'll get there.
I'll get there, I'll hike thosehigh cast, so that that's just.
Speaker 2 (19:20):
I love it.
I love it and you, Andy, for me.
Speaker 3 (19:24):
Well, see, that's the thing it's going to take you on
a journey.
I didn't actually start feelingsupported until a few years
back when I met Jen beingdiagnosed.
There's nobody that wanted totalk about it in the military
and I was in the boots when mydiagnosis started happening.
And I was in the boots when mydiagnosis started happening and
so for me, I was my.
(19:44):
My anger and jealousy were handin hand because I had people
also in uniform telling me thatI was faking.
But it's because they didn'tknow what was going on and they
hadn't done their research andthey just assumed that I didn't
want to do PT or I didn't wantto come to work Not that I
physically can't do those thingsanymore and that went on for
about 16 years.
It was she's lying, that's nothappening and we're still going
(20:06):
to deploy you and all the things.
And I pushed through no support.
So I was on deployments with nosupport, body hurting, like the
whole thing was a whole.
It was an entire how I had topause my tongue because
something bad almost came outcrap show.
It was a whole crap show of mejust trying to find support.
I think that my jealousy wasn'teven geared toward other sick
(20:31):
people.
My jealousy was actually gearedtoward the able-bodied ones
that just didn't see me like.
Me changing physically, mechanging mentally.
My jealousy was like but why isit me and not you?
I just want you to feel alittle bit of it so that you can
understand.
Over the last five years,though, that support looks
different, it's 100% not from aplace of jealousy, it is.
I have people that understandme and God's community is
(20:55):
everything.
Early in our diagnosis, we kindof isolate ourselves until we
find our people.
But I encourage people to findyour people, because the
isolation spirals you deeper,and that was what was happening
to me.
I was just spiraling deeper anddarker and deeper and darker
and then at one time I met Jesus, because I was still on the
(21:16):
spiral, you know, and it wasn'tuntil after that.
After the, you have to sit downwhere I sat with myself and said
what is this really over?
What are you really angry about?
Because at this point my rootwas that it's not that I
couldn't do things, it's thatthe things that I did before
look different in how I do themnow.
(21:37):
But I had to hit my literalrock bottom.
I had to hit the floor for meto slow down and go.
Okay, why is this reallybothering you?
Is it bothering you because youhave to do it a different way?
Or is it bothering you becauseyou genuinely can't do it?
And as I was going down thelist of things, I realized it
wasn't that I could notphysically do the things.
(21:58):
It's that my mind couldn't wrapits head around having to learn
how to do it.
They're here, guys.
Uh, it's that my mind couldn'twrap itself around learning how
to do it differently.
I was more so intimidated withthe new so I projected in anger
(22:18):
and I projected in jealousybecause I was so intimidated by
what my new life looked like,because it was so unknown.
It was like I don't know whattomorrow looks like.
And everything that I had seenvery similar to you, linnea, was
every group that I hadresearched.
It was like Debbie Downervillefor realsies.
I thought that I was on thebrink of death before I had
(22:40):
actually had the incident thatmade me meet Jesus.
I thought I wasn't going to beable to walk or run or play
volleyball.
And my providers didn't make iteasier, because when they give
you the information, they kindof word vomit a whole bunch of
words.
But then go deal with this.
Now for me, because I was anurse I hear it and I
immediately went to the worstcase scenario because I treated
(23:02):
patients that were the worstcase scenario, so I knew how bad
it could be.
I never got to see how good itcould be, but I always treated
how bad it could be.
And so now I'm on the side ofhow good it could be.
And it really did change when mymindset changed, because your
body keeps a score and you'reholding all the stress.
I was bottling and the more Ibottled, the more I hurt, the
(23:25):
more I spiral, the more Iisolated.
It wasn't until my mindsetchanged because I was around
people that understood and Ifelt safe to go.
Hey, I'm not okay, guys.
And it wasn't a get over it orI don't understand what the big
deal is.
It was those comments like oh,can't you just push through it?
Actually I can't.
My body told me I can't.
(23:45):
It's like they were at onepoint hearing it but not
applying it.
They were like, oh, this isjust a one-time thing and you'll
be fine next week.
And they would ask the samequestion and I would still feel
unsupported because the weekchanged, my conditions didn't,
but I was no longer angry orjealous or whatever.
It became more about educationfor me.
(24:06):
No, my circumstances didn'tchange and here's why it's
probably never going to change.
Will it improve?
Yes, will the diagnosis go away?
No, so will you see me likethis?
Sometimes?
Absolutely, and I need you tobe okay with that.
And the more people became okaywith me going I need you to be
okay with this because and themore people became okay with me
going I need you to be okay withthis because I can't change it
the better my mind was and thebetter my body started to feel.
(24:27):
But real quick to tell somebodyto sit with you, take five
minutes deep breathe, tap, dosomething, but sit with you and
love you through it, because youteach other people how to love
you and how to show up for youby how you love yourself and how
you show up for yourself.
Boundaries Didn't have them.
Things oh, I'm off cusp againDidn't have them before I got
(24:48):
sick.
And I got sick, sick andisolated.
Then I started havingboundaries.
My no was my no.
I can't do it, I don't want to.
Just no is a complete sentence,but that is yeah, my story was
trash.
It was trash.
16 years of trash, wow, wow.
Speaker 2 (25:04):
You said a word too that really kind of resonated
with me was anger.
You know, I think you know,when I first got sick that anger
was there.
It was just why me right, whyam I 32 years old?
I'm not able to do the thingsplay tennis, do the softball
things that I used to do?
I was just so angry.
(25:24):
I think we all go through thoseperiods of grieving who we were
right.
I mean, we all talk about itand I don't think we talk enough
about that grief, becausesometimes those little peaks of
grief are still sticking with us, right, and they still come up
and we still have to processthem.
And they still come up and westill have to process them.
But we're getting better aswe're building our resilience to
(25:45):
better navigate through ourjourneys.
That anger is tough and I knowhow hard it is to process and
get out from that mindset that,okay, there are people out there
who can support us and who canguide us and who can empower us
to do the right things and, toyou know, keep going in our
(26:06):
journey.
So anger is huge and I'm gladyou said that, but that's quite,
quite a story and I think weall have our stories that are
very similar, right, it's justhaving to.
I think it's just the importanceof communicating them, right?
I think so many of us reallyneed to come out and share your
story.
You know, tell your story, nomatter how small, how big.
(26:27):
I think it's so such anempowerful, a powerful tool for
the healing process for us andthen to help others and who can
resonate and build up from thatas well, just like we all have.
You know, we all listen toother stories that have
encouraged us and empowered usand inspired us.
It's important to keep theawareness going, and I'm so glad
(26:49):
that my Spanish Sisters is hereand you know you girls are just
doing an amazing, amazing jobat doing just that and sharing
the awareness, telling thestories, having the fun.
You know you have to have fun.
We have to have good laughs,right, Laughter is good medicine
, so we have to have all thethings.
So thanks, girls.
Speaker 1 (27:10):
What is one tip or piece of advice that you would
leave with someone that is newlydiagnosed?
Speaker 2 (27:18):
Well, for me on the topic, it would be don't compare
yourself to those out thereright now.
No comparisons.
Focus on yourself.
Focus on what's working for you, what is not working for you,
focus on your healing journeyfor now.
Listen to those who inspire you, but don't go down the
scrolling.
Don't go down that spiral ofscrolling and comparing yourself
(27:41):
, because you're very vulnerableright now.
You're very scared, you'reuncertain and you need to
surround yourself with thepeople who do really get it and
have been right where you are.
Speaker 3 (27:52):
I think my tip would be to take a pause.
I love telling people to take apause.
Take a pause where you are.
You have to understand itbefore other people can
understand it.
So handle yourself with carewhile you're trying to
understand what just happened toyou, how your life may change,
(28:14):
but don't go down the rabbithole of Google, and WebMD will
give you all the things.
If you're going to research,research from reputable sites,
but give yourself a time limitto research.
Don't spend all day researching, because you will come across
the stuff that you're lookingfor and you're not.
If you're going down the rabbithole of research, the majority
(28:37):
of the time people are notlooking for the positive
outcomes.
When they're going down therabbit hole of research, you're
going to come across the thingthat you were searching for.
The worst case scenario.
Ask yourself did you reallywant to know what is not
happening to you, so that you'renot planning your life around
what the worst case scenario is?
Because in the right now moment, acknowledge your right now.
(28:58):
Right now, that's not you, andright now you can still do
phenomenal things and your bodyis still allowing you to do
those things.
We allow our mind to change ourbelief system and our abilities,
because we got this thing andthe thing had a lot of letters
and probably not not a lot ofvowels, but it had a lot of
letters that, in the form of adiagnosis, and we go.
(29:20):
That means I have to stop.
We immediately feel like, or gothrough life initially as if
our bodies can't still do thethings it was doing 15 minutes
before we got the diagnosis.
It's just that quick howquickly the mindset changes
after you hear the thing andyou've gone down the rabbit hole
.
You quickly erase the fact thatall the way up until you got
the diagnosis, you were doingall of these things and then we
(29:44):
spiral.
I can't do, because Google saidand this is possibly going to
be my outcome but 15 minutesbefore you walked into that
doctor's office, you had done alot of phenomenal things in a
body that didn't play so nicewith you.
Love on.
You Pause in a moment and sitin that, understanding that your
body can still do some amazingthings.
Some amazing things, and it'snot going to look the same, but
(30:05):
it doesn't make it any lessbeautiful.
Speaker 4 (30:08):
I don't even know what to add, because they
covered everything.
I was kind of thinking about,like the research thing going
down the rabbit hole.
I'm telling you that's what Idid because I had nobody that I
knew in my life that had anychronic illness.
So I literally didn't knowwhere to go and I did start
(30:31):
going down the rabbit hole andit took me to some very, very
dark spots, very dark spaces,for longer than they should have
.
I should have been there, but Ialso think you have to.
This is something Jen's told meever since I've met her.
I need to learn to give myselfgrace.
You need to learn to giveyourself grace.
(30:51):
If all you did was get up out ofbed and two meals, three meals
then you accomplished something.
If all you did was get up anddo one load of laundry, you did
something.
Today, I think we forget, whenwe're sick, those little pieces.
Just getting out of bed, even,and moving to a couch and laying
(31:12):
down.
You got up.
That's a start.
That's a start and it's okay.
It's okay just to move from thebed to a chair, it's okay.
But don't just know you're notalone, even though you feel like
it.
We are out here.
We're this community, thesewomen right here on this screen.
We are out here and there'smore like us.
(31:33):
There's more like us that willcheer you on on your worst day
and until I met Jen, just likeAndy, I had the biggest
cheerleader.
She has always been one of mybiggest cheerleaders, besides my
husband and my children and mybest friend Susan, but that was
four cheerleaders.
Finding Jen brought me to awhole cheerleading squad Like
(31:56):
it's a whole squad now cheeringme on.
Even at my lowest moments I seeyou doing something and it's
like I feel like they postedthat for me, but in really, you
guys posted it for everybodylike me that needed it at the
moment.
So don't forget, you're notalone in this journey and we
love you, no matter if we've metyou or not.
We got your back, that's all,sorry, we certainly do.
Speaker 1 (32:18):
So.
My piece of advice is actuallyone little sneak peek out of the
book, and it's let it go Neverruin a good day by thinking
about a bad yesterday.
That's brilliant, I love it.
I think so often we get caughtup in that.
Yes, we do.
Speaker 2 (32:36):
We certainly do.
I love that.
I can't wait to get my hands onthis book.
Okay, do you ship to?
Speaker 1 (32:41):
Portugal.
For you, I would do anything.
Yeah, do you get?
Speaker 2 (32:46):
Amazon.
We use Spain's Amazon.
Speaker 4 (32:50):
We can find out.
If not, one of us will shipsomething to you.
We don't care how long it takes.
Speaker 2 (32:56):
I encourage everybody out there as well to get your
hands on this amazing journal.
I know it's going to bewonderful and such a great tool
to take on your journey.
So congratulations again,Linnea, on this beautiful
journal.
Yes, I love it.
Speaker 4 (33:12):
I'm excited for Jen's because it's coming soon.
Newly chronically ill peopleare going to get their have this
information and they're goingto be able to start this journey
a little bit smoother becauseof her book.
I can't wait to put it in thehands of people I know that just
(33:33):
got newly diagnosed.
I just can't wait for it Withmy journal too, ooh bundle,
bundle package.
Speaker 2 (33:42):
Oh my gosh, I love it .
Speaker 4 (33:47):
Mindset.
Speaker 2 (33:48):
Yeah, yeah, yeah, we're authors, jen.
Yeah, that's so awesome.
I'm actually working on mysecond collaboration right now
with the last publications on myuh around my journey with
myositis once again is onresilience.
So, yeah, looking forward, yay,yes, yeah.
Speaker 1 (34:04):
Yes, I have one last thing.
I want to remind people tocompete in kindness.
I know that sounds crazy.
Compete in kindness instead ofcompeting in suffering.
So let's compete in who can bethe most uplifting.
We don't need to worry aboutbeing the best advocate or the
strongest supporter, but be thekindest person.
Be the kindest person you canbe in the room.
(34:25):
At the end of the day, theSpoonie community is stronger
together.
So how about we celebrate eachother's wins, the big and the
small, because every stepforward for one of us is a big
step for every single one of us.
Speaker 2 (34:43):
Amen to that sister I love you.
Speaker 1 (34:45):
I love you guys, we have to do this.
I love our community Me too.
I suppose we have to end, yeah.
Speaker 4 (34:53):
We'll have to have her on again.
Speaker 1 (34:54):
Yes, yes for sure, let's make a list of all the
topics.
Yes, until next time, don'tforget your spirit.
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