February 7, 2025 • 43 mins
Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf on one side, reveals the significance of concise, clear communication with healthcare providers. Meanwhile, Megan, a fitness coach with rheumatoid arthritis, shares how she defies limitations to pursue her passion.
We tackle the often invisible nature of chronic illnesses and the misconceptions they breed. Through poignant anecdotes and actionable strategies, our guests reveal the power of having a strong, succinct narrative to advocate for oneself. From navigating awkward gym encounters to educating others with grace, our conversation showcases the importance of being prepared with a well-crafted story. We even discuss the merits of using creative tools like business cards to reinforce these messages in everyday interactions.
Laughter and resilience take center stage as we discuss how humor can lighten the load of chronic illness. We emphasize self-care through affirmations and the healing power of a supportive community. Sharing personal stories and quotes, we remind listeners that strength and joy can be found within, even amidst life's toughest challenges. By the end of this episode, you'll feel empowered to embrace your journey and equipped with the tools to communicate it effectively, fostering understanding and connection in the process.
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.
Jen (00:00):
Welcome back to my Spoonie Sisters podcast.
Today, I'm joined by anincredible panel of powerhouse
women.
Each of these inspiringindividuals brings their own
unique perspectives andexperiences in the chronic
illness space.
Together, we're diving into atopic that's crucial for many of
(00:20):
us the power of crafting anelevator pitch for our health
stories.
Whether it's explaining yourcondition to new health care
providers, advocating foryourself in the workplace or
connecting with someone new inyour life, having a clear,
concise way to share your storycan make all the difference.
We'll explore why having anelevator pitch is important,
(00:43):
what key elements to include andhow to tailor it for different
situations.
Plus, our amazing Spooniesisters will share their
favorite tips for creating onethat feels authentic and
empowering.
Hi ladies, hello, hi, hello.
Thank you all for joining today.
I'm going to call on each ofyou, one by one.
I'm going to start with you,allie.
(01:03):
Allie, do you feel like youhave an elevator pitch put
together?
Andi (01:06):
You know, I think I do.
I think so.
I mean, I've been talking aboutmy chronic illness for what?
16 years now, so I probably canthrow one together quickly.
Yeah, look like for you.
Would you like me to say it?
Absolutely Okay, okay, guys,don't come for me because I am
literally going to pull this outof nowhere.
But yeah, so my name is AliDiGiacomo.
It is a hard name to say, butmy name is Ali DiGiacomo.
(01:28):
I was diagnosed with juvenilerheumatoid arthritis at the age
of 15.
It is an inflammatory chronicillness.
It's not to be confused withosteoarthritis, with old knee
syndrome, you know, but I havebeen dealing with this for 16
years.
I like to call myself thearthritis auntie, and it has
changed my life for the better.
(01:48):
I became a personal trainerbecause of it and I tried to
prove to other spoonies that wecan move our bodies in a fun,
safe way, regardless oflimitation, and I also bring
awareness online as well.
So that is me in a nutshell,and, as hard as it is, I am
grateful for the community thatit has brought me, because all
of my closest friends struggleas well.
(02:10):
So that's me.
Jen (02:10):
I can look for something inspiring.
If I'm having a rough day, Ican look for Allie and watch her
drinking coffee and shaking herass.
She's going to motivate me andshe's going to crack me up along
the way as well.
(02:30):
Allie, thank you.
I love your elevator pitch.
Andy.
Tell us yours.
I bet it's single.
Ali (02:37):
So my elevator pitch is full of dark humor, but it's my
story, so it's true.
I tend to tell people hey, I'mAndy, I am blind and deaf.
One time I met Jesus.
I have arthritis, I have MS, Ihave lupus, I have a lot of
things that don't define me, butI don't look sick.
I can probably skate circlesaround you.
(02:58):
It took me forever to get mydiagnosis and my job is to make
sure it doesn't take you foreverto get yours.
When I'm in doctor's offices Igo.
I know that I have to tell youthese things, that you probably
didn't look at my record, so letme give you the cliff notes.
I am blind, I am deaf, we havedone all of these things.
I am a veteran and these thingsprobably led to the reason why
I am blind and deaf now and Iwould prefer to not go through
(03:20):
another 16 year circle.
So I'll give you some time toreview the things that you need
to review and we can reconvenewhere disappointment is.
In some resolution I'mtypically straightforward, but I
do lead with I am blind anddeaf.
So if I go home, can you pleaserepeat that?
Can you talk to me in a waywhere you were talking to me and
not at me, and I appreciatethat as well, because I don't
(03:43):
look stereotypically deaf and Idon't look stereotypically blind
.
I spent a lot of my day readinglips.
Jen (03:50):
That's exactly it.
None of us would ever know.
I didn't know for the longesttime, wouldn't have had a clue.
Andy, what I love about you is,if I am ever having a super
anxious, horrible day, all Ihave to do is talk to you and
within five minutes I'm at fiveminutes, I'm at ease, I'm
comfortable, I'm calm.
I don't know what it is, butshe needs to have like I don't
know your own podcast of calmand wellness.
(04:13):
I don't know.
We all need that in our livesand that's what Andy brings to
my life.
Megan, I am so excited to hearyour all day.
Yeah okay.
Linnea (04:22):
So hello am megan.
I have had rheumatoid arthritisfor about nine years and
rheumatoid arthritis is anautoimmune disease.
It is not like your normal wearand tear arthritis, because I
feel like so.
So many people who don'tunderstand confuse the two, so I
(04:42):
usually throw that in there.
But overall, I am a fitnesscoach for people who struggle
with arthritis and chronic jointpain, because I had to pretty
much revamp my entire fitnessjourney when I was diagnosed and
had to really make it fit formy body, my needs, my
(05:03):
limitations.
My goal is to show people thatyou don't have to give up.
Jen (05:10):
If you guys have not checked it out, she did
powerlifting.
This girl is strong, as inmuscles strong, so yeah, go
check that out First.
Megan is my whole positivemindset guru.
I can't believe that it's beenlike a year and a half that
we've been doing that supportgroup.
Now it's crazy.
And there's Lenia Are you ready?
Megan (05:30):
Yeah, yeah, hello, my pitch.
When I go into a doctor,especially if it's a new doctor,
I tell them my name, Ipronounce my name, I say Lenia
as my first name and I say,nicely, the K is silent.
I explain my name because theywill butcher it.
I'm sure you ladies understandthat.
But I also tell them Istruggled with joint pain since
(05:51):
high school without a diagnosis,until I moved to Arizona at 30
years old.
I let them know there wereyears I didn't have any
diagnosis, I just was onprednisone a lot and I didn't
want that.
That was my first thing.
I told to tell them I explainedmy heart conditions.
If they don't know what RA is,I explain what it is, because I
have come across doctors thatdon't understand what it is.
(06:13):
But yeah, that's kind of.
I hope that answered.
I'm a little funky.
Jen (06:17):
That's okay.
You've got the flu.
We understand Just the factthat you share.
That is amazing Fun fact foryou.
Lenea was my first guest on thepodcast.
It was during that conversationthat we found out we both had
the exact allergic reactioncausing the pustular psoriasis.
Megan (06:34):
I thought I was like on this desert island out here,
until Jen walked in and told methat happened to me.
I realized I wasn't alone.
Jen (06:56):
My doctor was floored that I actually met somebody that it
had happened to.
She's made life a lot easier.
We put ourselves on an islandbecause then we can't get hurt
and it's like a safe place, butit's lonely too and we can't
live there.
I could easily go on a tangentand have us go there, but that's
not what we're here for.
We are here to give some tips.
Raise your hand if you want tojump in on this.
My first question is why do youthink it's important for people
(07:17):
with chronic illnesses to havean elevator pitch prepared to
share their health stories?
Ali (07:26):
Andy, I'm ready for you.
Okay, so there's severalreasons, right, but I think that
it's empowering.
I think that when you walk inowning your story and owning
your diagnosis, it's empowering.
It allows you to articulatewhat your body is going through
versus what they see of you,because you may not always look
sick, but I think that in havingthe elevator pitch and in
(07:47):
sharing your health story, aspersonal as it is, it helps
other people.
It contributes to their healing, it contributes to the
education of the provider that'sgoing to be treating the next
person.
But it is also a way for you toadvocate and continue to
advocate for you on your behalfand on the behalf of the people
that will follow you stilltrying to get their diagnosis.
(08:08):
I think it's super important.
I would much rather have theelevator pitch than people stare
and have questions that theydon't want to ask or come up
with their own conclusions orassumptions.
But especially kids, right,they want to know.
But I would much rather havethe conversation so you're
educated and you can become partof the super advocators.
Then you think it's somethingyou use that as a way to
(08:32):
belittle or hurt someone else'sceiling.
So I think that the sharing ofthe stories, especially from
people who don't look sick,makes the generation behind us a
little bit kinder with theirword choice and a little bit
more grateful that they canfunction in the bodies that they
have, even if it's for theright now moment, before they
hit their prime, you know.
Jen (08:50):
I agree.
Does anyone have anything tochime in on?
Andi (08:53):
I mean yes to everything Andy said oh my goodness.
But also, you're going to betalking about your chronic
illness a lot.
I've had it for 16 years and itcomes up all the time.
Like Andy said, it's veryimportant to have your elevator
pitch to explain it, because alot of chronic illness you can't
see, like invisible illness youcan't see.
So it's really important toeducate everybody and just get
(09:14):
it over with like right away,like this, this, this and this,
so that they don't have to youknow, like Andy said, ask
questions.
They can ask questions, that'sfine, but they don't have to
assume what's going on with you.
But yes, you're gonna betalking about it all the time at
the workplace with friends andfamily, on podcasts.
You're gonna be talking aboutit on social media at the gym.
(09:34):
So it's really important tohave it because it's gonna keep
improving and I bet you anybodyif you ask any Spoonie, they
probably already have theirelevator pitch because they are
so used to talking about theirchronic illness.
So it's great to just have itin your back pocket ready to go.
Jen (09:49):
I agree with both of you so much.
I think the first time I everheard anything about this kind
of thing was actually before Igot sick, and the reason I heard
about it was from mysister-in-law.
I think some of you know, but Idon't know if all of you do,
but my niece was born in 2009and she was terminally ill with
Tay-Sachs disease and as she gotolder she was deaf and blind
(10:11):
and my sister-in-law could notgo to a store without these
people coming up to her andsaying the stupidest things Talk
about foot and mouth, walkingup and being like poor dear, she
looks tired, you're wearing outyour poor baby.
No, actually she's deafblindand dying, but thanks for being
a jerk.
It got to the point where sheactually made a business card
(10:32):
telling people what Tay-Sachswas and about her daughter.
She would hand it out to peoplewhen people would come up and
say those stupid things and talkabout a change in the way they
talk to you after that, ifyou're not comfortable talking
about it, make a business card,make a flyer, make a handout,
whatever.
But do something.
Don't just stand there and letpeople talk to you like that.
I mean it.
(10:53):
Just it goes along with how I'malways telling you it's okay to
fire your doctor.
It's okay to just tell peoplewho to buzz off or educate them.
Take that moment to changetheir minds.
The educate them.
Take that moment to changetheir minds.
The next question I have foryou what has been your personal
experience in communicating yourhealth story and how has having
an elevator pitch helped you?
Who would like to talk?
(11:14):
Oh, Megan.
Linnea (11:15):
So honestly, I kind of like yes to everything that
everybody said in that lastquestion like hit the nail on
the head One hundred percent.
Said in that last question,like hit the nail on the head
100%.
I really wish that I would haveworked on having an elevator
pitch when I started going tothe gym again, Because it's when
you are young and you lookhealthy, because obviously the
(11:38):
RA is invisible, people reallyassume that you can do a lot
more than you can.
So whether I was training atthe gym and somebody made a
comment of me not doing as muchor not like working out with the
client, or if I got commentssaying, oh, you should be doing
this instead of that, or whyaren't you lifting heavier,
(11:59):
which is so frustrating?
Yes, Allie already knows what.
Jen (12:04):
I'm sorry, you were lifting like crazy.
So why in the world were theyasking why they could lift more?
Linnea (12:11):
I don't know.
Well, this more happened beforeI started lifting heavier, when
I was dealing with a ton ofpain and flaring.
I think that had something todo with it.
Well, it's kind of funny,because when I started lifting
heavier, I actually got an oldergentleman to come up to me and
tell me to lift lighter.
I don't know.
I don't know why people thinkthat they need to assert their
(12:32):
opinions regardless.
But I always tell them that Ihave rheumatoid arthritis and I
make sure to tell them that itis an autoimmune disease, that
way they don't confuse it withosteoarthritis, which happens
all the time, because then theystart saying oh well, this works
for me.
I have arthritis in my elbow orI have arthritis in my knee or
(12:53):
you know that kind of thing,yeah.
So I wanted to throw that outthere in case any of you can
relate, or because it's sofrustrating and that's where I
needed it the most.
Ali (13:04):
So yesterday I was at the gym and it was the same thing.
It was like the dumbestquestion ever.
And then they were like andyou're doing it wrong.
But then I watched them get onthe squat rack and you can't
functionally move your bodyweight.
So before I left the gym I waslike I walked past the rack
again.
First off, he had all of hisweights there, but he was having
(13:25):
a whole conversation withsomebody over by the lap pull
down.
And that just really poked thebear, because I'm trying to get
some gains and leave Right.
And so I go to the squat rack.
You're clearly not here.
You're clearly the jerk thatdidn't want to re-rack your
weights.
I don't care.
He says, oh, it might be alittle bit too heavy for you,
honey, right.
I said, oh, this little 45plate, that's cool.
One arm down, bam.
(13:46):
He's like I don't want you tohurt your back, john, you're not
functionally moving your bodycorrectly, but it's okay.
And he's like I guess youwatched a little Chloe Ting's
fitness or that Pope to bear youno more.
I said, wow, we're trying ittoday and I have time, so,
whatever, as he was saying thatone of my youth athletes, one of
(14:06):
my track athletes now incollege is across the gym.
It's like, coach, you good,comes across the gym, gives me a
hug.
He was with those idiots, right, but didn't know that I had
just had that conversation withthose idiots and then so they go
coach.
He was like, yeah, she's thereason I got into college.
She's strong, she's strong ashell.
You just don't know it.
Don't let the baggy hoodie andthe small, the timid voice and
(14:28):
the doe eyes, the Disney eyes,make you think that I cannot
pick up heavy stuff and put itdown, that I cannot fling you
across this gym with my legsMaybe not with my upper body,
but I can fling you through awall with these legs.
I don't look sick, I don't wearit as a label, I'm not like hey
, please pity me, I am a womanthat is trying to do the best he
can do in my body and preferyou to not be taking up my time
(14:51):
having a conversation by the lap.
Pull down, do better, do better, so you can be buffered because
you're not buff for real.
So that was my gym experienceyesterday.
Jen (14:59):
And Allie's over here excited and dancing and cheering
you on, and I'm over here going.
Wait, he called you honey.
There is nothing that pisses meoff more than somebody coming
up to me and calling mesweetheart or honey.
First of all, you don't know me, you're not my husband, you're
not family Back off, so let'snot start there.
That's not okay.
I'm not your honey and theydon't know us.
(15:20):
I'm sorry, but every single oneof you are extremely strong,
extremely strong inside and out.
You have something to chime in.
Megan (15:27):
I would, because I've had that experience.
But at a doctor's office I hadan orthopedic doctor tell me
that I was just overweight.
That was my only issue.
I did not have RA, I did nothave psoriasis.
He told me all my issues wasbecause of my weight, which at
the time, the doctor I was onrheumatologist had put me on a
(15:49):
ton of steroids, which if youknow anything about prednisone,
you know how they like and I wasnot getting better.
I was getting worse.
To have your doctor tell you, Iwalked out of there in tears, I
do have to say.
My primary fired him and he wasno longer in his office any
longer because of the way hetreated me, because he goes.
That girl has been strugglingfor years and you just sat her
(16:12):
back because of your negativity.
But that's the same thing weget out in public too, and it
was hard for me to come overthat because it was a doctor
that said it, a doctor thataccused me that it was all my
own fault.
That can affect you on how youtalk to people.
I didn't tell people for thelongest time when they would
make a comment about myarthritis If they said, oh yeah,
(16:34):
I've got that arthritis too.
Like I didn't say nothing untilI started on Instagram and I
found all you ladies.
Andy Allie, especially, was oneof the first ones I found and
she liked her positivity and I'mwell, I can do that too.
It really changed, and beingaround others like you makes a
huge difference.
Especially it helps you buildup your elevator story too.
(16:56):
But it gave me the courage totell everybody now even doctors
that tell me it's my fault.
I don't let them walk over meanymore.
I use that elevator speech I'vecome up with and I didn't know
that's what it was called, butit makes a difference having it
in my pocket.
Jen (17:13):
Like you guys said, I couldn't have said it any better
than any of you.
So my next question and this isa really important one is what
are the key elements that youbelieve every health story
elevator pitch needs to include?
I know you all have a top three.
Okay, andy, you're ready.
Ali (17:30):
Freaking love this question when I read it.
I freaking love this questionbecause I feel like all of the
elements are super important,right, so the brief description
of what's going on, but insimple terms, because not
everybody's going to understandit at the level that you
understand it, how it affectsyou personally, how it may
affect your personality, so yourspecific, unique experience,
(17:53):
not your cousins, not Johnnydown the street who had
arthritis in his elbow.
But then also the touch ofpositivity and resilient,
because people here sick andautomatically go to the I pity
you.
Look, your elevator speechshould always have I am
resilient, and here's a positiveaspect.
And then it should always havepurpose.
(18:14):
What was the purpose of yousharing it?
So, ending your story with?
I decided to share this withyou because I wanted you to be
more educated or because I'madvocating where I wanted us to
be able to connect.
But having those elements makesit less daunting to one, want to
share your story.
Two, easier for people to bereceptive to hearing and seeing
(18:34):
you beyond your diagnosis.
Hey, he has this, but she coulddo all these things instead of
you have this.
That means you can't do thisanymore because I got tired of
that and I'm like hold on, Ihave this, but I can also do
blah, blah, blah, blah, blah.
So your elevation pitch shouldbe I have this, but, and then
sprinkle your rays of sunshineand resilience.
(18:55):
Make it as dark or dark, humoror positive as you want, but be
sure to highlight yourresilience, because nobody's in
these shoes but you, and it'stough to walk around in a body
that fights itself all day.
Jen (19:09):
Absolutely.
And look at how many amazingpeople in our community and what
they're doing and they stillare chronically ill.
We've got professional dancers,We've got ballerinas All of you
doing all this coaching,lifting weights.
I wanted to do roller derby.
I kind of wish I still had, butmy husband was afraid I'd kill
myself or break somethingimportant.
(19:31):
But still we can do all theseamazing things.
Who's in our way?
We are in our way.
Linnea (19:36):
I can't know how to necessarily tell the instructor
(19:59):
that they do have theselimitations that exist and they
just kind of, you know, wantthat instructor to know which
yes, you should always do that,but they don't want the
instructor to think that, youknow, oh, you probably shouldn't
be doing anything or, you know,or just taking it way too easy
on them.
Jen (20:15):
So that's kind of similar to how I tell them to tell their
in-person fitness instructorsjust focusing on what you are
able to do, even though you dohave this condition or these
conditions, yeah, and it's okayto go into the class and tell
them that I've gone into yogaand pilates and said, hey,
anything where you want me to beon all fours, that's's going to
hurt.
My shoulders are a mess, nothanks, but I can do all the
(20:37):
other stuff.
So just if you have ideas onhow to adapt, please give them
to me.
And it's okay to say that If Ihave questions, I know I can ask
any of you also.
You're going to give me greattips.
It's great.
Andi (20:48):
Anyone else want to chime in.
I like everything everyone saidI always talk about and I love
adding positivity and dark humorinto my elevator pitch, like I
always talk about how I cope atthe end, like how I cope with
dark humor and I make funnyvideos on it.
But also I love to say I justneed to modify life, like I
modify at the gym, like I modifydaily things.
So, yeah, I talk about how Ihave to just modify everything
(21:11):
that I do.
It's just I'm telling.
I like how Andy said tellpeople why you're telling people
this.
It's always.
I'm like I'm telling you thisbecause I've taken many fitness
classes where they didn't offermodifications.
And it's another reason why Ibecame a trainer, because we all
kind of have to modify life andyou can't just like judge a
book by its cover.
Baby, we got to modify.
So I just love adding that inthere as well.
Jen (21:35):
I want to have you think something over and mull it over
in your mind If there's anyquotes that you've either heard
or that you've come up with onyour own that you would want to
use to inspire someone.
So just kind of mull that overas we discuss question number
four how can someone make theirpitch concise yet impactful,
especially when the details ofchronic illness can feel complex
(21:56):
?
Ali (21:56):
I know that's a biggie.
Jen (21:58):
And I threw two things at you and I think to make it
impactful it means choosing yourwords wisely.
It doesn't need to be a longspeech, it can be two sentences.
Just make sure you have all theimportant information in there
and we can make it lookdifferent for different kinds of
people.
What I say to my family isgoing to be something different
than what I say to a completestranger.
What would you think issomething that makes it concise
(22:21):
and impactful?
Any tips for somebody, let'ssay, concise and impactful.
Ali (22:27):
I think it's important to focus on what's relevant in the
right now moment In order tomake it impactful.
You don't want to overwhelmthem with all of the thing, so
pick the thing that is the mostrelevant in the right now moment
.
It can be overwhelming for theear hearing it, where we list
every symptom, every diagnosisand everything that we go
through in our daily lives.
(22:47):
And I didn't always understandthat they go the blank.
Look, it's because half of thestuff they're unfamiliar with.
So, focusing on what's mostrelevant in the now and how they
can help you in the right nowmoment removes so much
frustration from both parties.
You frame your thought in a waywhere you can highlight both
the struggle and the strength,so that it is not she's having
(23:10):
he or she's having a pity party,or please pity me for the lack
of better words.
I am struggling with this, butI'm also doing this and you can
be part of the strength thathelps me continue to be able to
do this.
So for me, I kind of tellpeople like I have this
autoimmune disorder thing goingon and I got some neurological
(23:32):
things going on.
I will have days where itimpacts my mobility.
I will have days where itimpacts my energy levels.
I will have days where itdefinitely impacts my sensory
abilities.
However, I can still do all ofthese things and on the days
that it affects me, I just needyou to adapt and just be willing
to pivot when I have to pivot.
So it's not a big scene and it'snot oh no, what happened, but
(23:55):
it's to offer them another wayto understand, without the
overwhelm Because I'm big on, Idon't want anybody to be
overwhelmed and I think whenwe're chronically ill we tend to
not want to share because wedon't want to overwhelm the ears
that has to hear what we'resharing.
But we can share it in a waythat is digestible and
bite-sized pieces and still getthe help that we need and make
(24:16):
the friends along the way thatcan help us along our healing
journey and support us.
Just bird feeding, right.
We want to tell them, but wecan tell them without all of the
emotional word vomit that theydon't understand.
Jen (24:28):
I think that's wonderful and start somewhere.
Make a list of those impactfulwords, those strong words that
you think are important.
Make a list, start there andthen, as you work on it, think
about the different dynamics,the different people that you're
gonna walk around and talk toin your day, and come up with a
couple sentences for each oneand if you have to write it down
(24:49):
, keep it with you, practice.
Megan (24:51):
Anyone else.
I was thinking of a tip whenshe was talking about talking to
just anybody your family,whatever.
When you're talking to yourdoctor, make that list that you
were not talking about.
But I want to build on thatwhere you write out your
elevator notes on your piece ofpaper, on a notepad.
Write your questions out indetail, because I know my
(25:13):
rheumatologist.
When I come in with my notepadhe knows I mean business and
we're going to get right down toit.
I feel like I have noticed thatmy appointments go faster and I
get everything answered.
I walk out of there going okay,we've got a game plan.
I know what I need to do.
If I'm struggling.
I tell him look, I have X, yand Z I want to do and I
(25:34):
physically cannot get there withthe medication I'm on.
I need help or suggestions onhow to get there.
I always go in with something Iwant to do.
So he knows that I'm motivatedand I'm not just in there
wasting his time.
And I guess that comes back tothose other doctors that have
gaslighted me so bad that I overmaybe share, but he seems to
(25:57):
respond to it.
So I think my best tip foranybody is making a list and
you'll eventually get to where,like all of us, we've been doing
this for so many years we don'tneed our list.
I still do it because I getbrain fog and I forget.
I just to make sure I don'tforget, and make that list.
I'll even write down my notesfor my elevator if it's a new
(26:17):
doctor, so I don't forget totell him something that's really
important, like my heart issuesI'm having.
Like that is important becausewe can't give me any medicine
that's going to cause my bloodpressure worse.
Jen (26:27):
So that would be my I actually have one more tip too,
because there's a lot of us inthe community that do advocating
, I think.
Yes, I have a business cardbecause of the podcast that I
hand out.
But what's wrong with having abusiness card if you do advocacy
work, because sometimes you aregoing to meet people that
they're like oh, I want toconnect with you more, or oh,
(26:49):
I've got this project orwhatever.
There's so many oohs out therethat you're not going to expect
Make a business card, have a QRcode on the back or your phone
number or your email or whateverit is you want to give them.
It doesn't hurt to have that.
Andi (27:01):
I second that because for someone who brings awareness
online Also, if you don't wantto get detailed about what you
have and what you struggle with,it's really good.
I usually give people my socialmedia and it explains it all on
there.
You can even give like somebodyelse's social media to somebody
, like hey, at the end of yourelevator pitch.
If you want to understand moreabout this, you can follow this
person, explain it all.
(27:22):
I usually lead people to myInstagram if I don't want to go
into detail and all I have to dois go, look and they'll see all
the medications I've been on,what it does to me, how it
affects me, blah, blah, blah,blah, blah blah.
So I love that giving out likeyour business card.
I have like a QR code on myphone and I just they can scan
it and get to my socials.
Jen (27:38):
Yeah, and I guess there's key chains that you can get to.
I haven't gone that far, butyou know there's key chains
where you can have a QR code onit.
But okay, so our last questioncan you share any strategies or
tips for practicing andimplementing the elevator pitch
for everyday situations?
I mean, I feel like we kind oftalked about that, but does
anyone have anything to add tothat?
Ali (27:59):
I just want to know how Allie came to the conclusion
that I'm going to just relay itwith dark humor.
I'm just I'm curious because Ijust met someone else who does
dark humor like me.
So what was your catalyst thatsays I'm going to start
explaining this with dark humor,Because when I was trying to do
a bubbly you didn't get it?
Andi (28:16):
I love this, so it's actually my coping mechanism.
So, comedy I love making peoplelaugh and whenever I'm in pain,
especially with my chronicillness, most likely I'll make a
reel about it to make myselflaugh, and the darker the better
, because what we have is dark,it's not fun.
No-transcript.
(28:57):
Oh, she's, you know, lookingfor attention, wants you to pity
her.
Blah, blah, blah.
My Instagram would be very dark.
So, in order for me to cope andin order to educate others and
also make other spoonies laughthrough the pain you know,
because we don't do that, thatit's not easy to laugh through
the pain, but just to take asecond to make fun of ourselves,
like that's what I do I makefun of this chronic illness to
(29:18):
help myself cope, to make otherspoonies laugh for a second and
also to educate people on whatit's like to go through this.
So, yeah, that's how I got intoit that was me, that was me.
Ali (29:28):
I kind of slide in that one time I met jesus, or yeah, I
saw that with this eye and I'llbe pointing to the blind eye and
they're like wait, yeah, Iheard what you said, but are you
pointing to the deaf ear?
And so it throws people off.
They're like are you wearingheadphones in both ears?
Yep, but you can't hear outthat ear.
You're right, but this is sothat I double can't hear you.
But I did.
I love that.
I love that you find the silverlining, because I know that it
(29:50):
can get dark and if we can'tlaugh at ourselves and with
people as dark as it can get, itcan spiral.
So I'm glad that I have youguys.
So thanks.
Jen (30:00):
Likewise, and so Annie, megan and Linnea.
Did you guys ever see, was itlike two years ago now, allie?
You know, we gotta bring it up,we bring it up all the time
right when she had the video ofher crying and someone wrote an
article about her and severalothers, and they called you a
teenager.
Is that you that was?
Andi (30:19):
that was?
Yeah, that was me.
I was the very first picture.
At the top there was a redheadtoo, and she's.
Ali (30:25):
There was a.
There was a redhead, they didit on tiktok.
Andi (30:28):
That was you that was my tiktok, yes, but they called me
a teenager.
So I was like that's the firstthing I said when my friend,
who's also a Spoonie we were ata conference in front of a bunch
of doctors, when we found outabout that article, she brought
it to my attention and I waslike they think I'm a teenager,
I'm in my face.
But yeah, no, it was sad thethings that they said about us.
But that's the thing.
I post one video, one video.
(30:50):
That's not a funny video andit's me crying because I was
going through depression, I wasin pain and I had to inject.
I had to stab myself with theneedle and I was just like I
have.
I have to do this with mycommunity.
So I put my camera on, becausewhen I inject and I'm alone, I
don't want to feel like I'malone.
So I throw my camera on becauseit makes me feel like I'm with
all of you.
And so I threw my camera on, Iposted it and then it gets
(31:11):
picked up by a magazine andCandace Owens.
I was like the one time.
Jen (31:15):
But you know, yeah, yeah, Nothing about like turning on
your TikTok or Instagram andfinding out people are lying
about you.
But hey way to look at it onthe bright side is that they
called you a teenager whenyou're in your thirties.
Andi (31:25):
You know none of us were teenagers.
There were multiple girls inthat article and not one of us
was a teenager.
Like come on, but yeah, it was.
We had to bring awareness to it.
We didn't want to like sharethe article, but we did have to
bring awareness because they areattacking kids, they're
attacking teenagers sick.
Like that's disgusting.
Like they're attacking sickteenagers and preventing people
(31:46):
from sharing their story,preventing teenagers from
sharing their story in fear thatthey're going to think that
others believe that they're justdoing it for attention.
Like I never brought up the factthat I had a chronic illness in
my teenage years it wasn'tuntil I was 25 because I didn't
want people to think I want themto pity me or that everything
Andy was saying like I'm notgoing to be able to do things,
(32:07):
or I don't want to hear thatyou're so young.
So for people to make anarticle about that and now
teenagers are going to be infear of sharing their journey,
their life, like it's not, likethey're exaggerating it, making
it worse.
So we did have to bringawareness about that for those
teenagers that they should nothold back.
They should share their storyand not be afraid of what some
old adults in England becausethis was an English story are
(32:29):
writing about us.
But yeah, they said that we'reall faking it and a lot of the
pictures and videos that theytook were us injecting or us at
the emergency room, which isvery sick and it's absolutely
disgusting to me that they woulddo that, especially thinking
that you're teenagers.
Jen (32:44):
Because, I'm sorry, I have lived with anxiety and panic
attacks since I was 12 years old.
I hid them.
I did not talk about it, I hidit.
It was my deep, dark secret.
Because that's what we do whenyou're young you don't want
anyone to know there's somethingwrong with you, you just want
to fit in, that's all.
You want To have articles likethat come out.
(33:05):
It's absolutely disgusting.
I guess what boggles my mindeven more is that they thought
they were attacking teenagers.
What made that?
Okay, come on, do better.
And he says it all the time Dobetter.
Andi (33:17):
Disgusting, yeah, do better.
But honestly, yeah, I didn'ttell anybody about my R.
I used to tell people I had aknee injury and people didn't
know until 10 years after I gotdiagnosed that I had a R.
Like when I made my Instagram,people from home were like you
had this for 10 years and youdidn't tell anybody.
Jen (33:32):
I was like yeah, no, I'm going to circle back now.
Have you thought about it?
Do you have a quote, whether itbe somebody else's or your own,
something that you say all thetime, or something that you
share with others?
Linnea (33:42):
Megan, yes, okay, first of all, can I touch the last
subject really really fast,because it was horrifying seeing
that article, first of all, butthen second of all, that is why
, when I was 18, I didn't tellanybody about RA, where I tried
not to unless I absolutely hadto, because there were people
(34:02):
saying in school that weresaying that I was faking an
injury and all of these things.
I wanted to hide it as much aspossible.
I'm really glad that you wereable to bring awareness to it,
without necessarily promotingthe article, but letting
teenagers know that it's okay toexpress yourself and find
community that way.
(34:23):
But with the quote, mine'sreally cliche and I apologize
for it, but it is so true and Ifind that it is like something
that I tell myself all the time,and that is you are so much
stronger than you think you are,because every time I think that
I can't do something or thatI'm not going to be able to do
(34:44):
something, I end up exceedingwhat I expect myself to do.
So yeah, that is my quote,absolutely lifting, mar Lifting
marathons K's.
Jen (34:53):
I don't know you do the dang things I tried.
Ali (34:59):
My quote is you are not your illness.
Your illness may be a part ofyour story, but it doesn't
define your worth or yourstrength.
Some days you will conquermountains and other days you
will simply breathe.
Those are both victories.
You okay with it.
Megan (35:13):
I love it.
I'm going to push this back somaybe you can see I have all
these pictures up here and there.
You are loved, you areempowered.
My daughter got me all thesepositive sayings when I was
going through depression reallybad and she goes mom, you just
need to remember.
So I put them up recentlybecause I redid the office.
And so there you are forgiving,you are capable, you are
(35:36):
confident.
I swear I now walk through here, through my little office now,
and I will read one of those aday, especially if I'm
struggling with something youknow like feeling not capable of
doing something, I will grabthe capable one.
And those are my quotes.
They're not really quotes, butI think you find your own
affirmations that you can saythat motivates you.
(35:58):
I think that's what's reallyimportant and she did a really
good job finding these.
Jen (36:02):
I love that she's always looking out for you.
What a good daughter she is.
Megan (36:06):
I know she was on the phone with me when you were
texting me because she had tocall and check on me.
She was going to get me intothe doctor today.
Jen (36:14):
See, I'm telling you you've had a good one.
Megan (36:17):
She works for my primary, by the way, ladies, so she has
a direct line.
I love that's my little thing.
Andi (36:47):
All right, allie, you're not going to win.
You're not going to win.
I may be struggling right now,but I'm going to do something to
make myself happy, becausebetter days have to be ahead.
Monday, I was in bed the entireday.
Today, slaying, baby slaying.
So those days are ahead.
Just look forward to them, baby.
It's true, it's really, reallytrue.
Jen (37:04):
There are always, always, better days ahead.
And for some reason and I couldbe wrong, but, allie, are you
the one that last year, when thenew year happened, that your
word of the year was?
Andi (37:14):
adventure.
I think that was me like twoyears ago.
Yes, it was.
Yeah, yeah, yeah, I was goingon adventures every day, even if
it's small.
Jen (37:22):
Yeah, and so last year I decided to focus on adventure
awaits, because I really lovedthat you did that and I thought,
okay, adventure needs to beready for me, it awaits.
And so I wanted to make lastyear a year of adventures, and
this year I guess I'm going tosay that again because I've got
two kids getting married thisyear, you guys, but I do have
(37:43):
some quotes for you.
One of them I heard somewhereand I loved it, and then the
other are two that I find myselfseeing to people constantly.
So the one I heard I wish Iknew where I heard it from but
it says you cannot chasehappiness, you have to find it
where you are.
I wish I could remember whosaid it or where it came from,
but I was like, okay, and then,of course, the ones from me be
(38:04):
who you needed when you wereyounger.
Ali (38:06):
That one right there.
That one right there.
Be who you need, who you neededwhen you were younger.
Jen (38:12):
Yes, jenny, that one right there, it's why I do all the
things I do.
It's why I show up for myself,for everyone else, because I
needed this, I needed this group.
I needed me to be who I am whenI was younger and I didn't have
it, and so, therefore, be thatnow and be that for others.
And then my other one is I havethe choice to let life happen
(38:35):
to me or be part of it.
I mean, we do.
We have that choice everysingle day.
So we want to watch our days goby while everybody else is
having their adventures andliving their life and we're at
home in bed feeling sorry forourselves.
No, ma'am, it's okay if I havethat from time to time.
I'm going to have that fromtime to time.
Nia last year had a really hardyear and, girl, you keep showing
(38:57):
up for yourself.
You do it all the time.
You show up for yourself and beproud of you, because this is
our year.
I'm telling all of you rightnow this is our year and we are
going to show up and we're goingto kill it, just saying Thank
you for being here.
This was amazing.
I was so excited to bring ahandful of my favorite people
all into one room together.
Ali (39:18):
Thank you for having me Thank you.
Jen (39:22):
Is there anything that you're going to leave us with?
Is there any that you're goingto leave us with?
Ali (39:27):
So be you, unapologetically , you, you're already enough on
every day that ends, and why.
Whatever it is you do next isgoing to be great.
Just don't know what's on theother side of I'm scared.
So today, take the one step,the faith of a mustard seed, to
do the thing that you werescared of, because joy awaits.
We don't really have to find it, we just have to pause long
(39:49):
enough to actually see it andadmire it, because it's always
around us.
I love it, I love it.
Andi (39:54):
Okay, I got chills, goodness, I got chills.
Everything Andy says I'm overhere, like, oh, I got chills,
like, yes, I just want to say,if you're chronically ill and
listening to this, find yourSpoonie community, find your
friends, because just talkingwith you guys brings me so much
joy and I didn't have anybody,any friends, any family members,
anybody with a chronic illnessgrowing up, which is why I never
talked about it.
(40:14):
But when you find your peopleor in your community and you're
able to vent, it's so important.
Please, maybe vent.
Don't keep it in.
But when you're able to ventand talk to people who get it,
it just warms your heart.
So please, please, please, finda friend who has your chronic
illness, is on the same meds asyou, you know who gets it, and
just reach out to them onlineand make a friend.
Jen (40:34):
Don't be afraid to make a friend.
When I first joined thecommunity, I looked at people
like Allie or Sheryl Crow or anyof the people that were big in
the community and still are.
I looked at you like, ooh,they're famous in the community.
I'm just little old me.
They're never going to talk tome.
Look at it now.
Look at it.
I know you're not helpingpeople, allie, you were like my
(40:55):
superhero.
I know I wish, but you knowwhat?
In our community there arequite a few people that people
consider famous and we're alwayslike, oh, they're never going
to reply to me.
Andi (41:06):
No, my DMs are caught up.
If anybody wants to be a newfriend, See exactly.
Jen (41:14):
I happen to know, if you are listening, that every single
person that has been speakingtoday they're going to answer
you.
They will show up for you, sodon't be afraid to reach out.
Ok, I have kept you all longenough.
Thank you for your time and toour listeners.
We'll see you next time.
Welcome back to my Spoonie Sisters podcast.
Today, I'm joined by anincredible panel of powerhouse
women.
Each of these inspiringindividuals brings their own
unique perspectives andexperiences in the chronic
illness space.
Together, we're diving into atopic that's crucial for many of
(00:20):
us the power of crafting anelevator pitch for our health
stories.
Whether it's explaining yourcondition to new health care
providers, advocating foryourself in the workplace or
connecting with someone new inyour life, having a clear,
concise way to share your storycan make all the difference.
We'll explore why having anelevator pitch is important,
(00:43):
what key elements to include andhow to tailor it for different
situations.
Plus, our amazing Spooniesisters will share their
favorite tips for creating onethat feels authentic and
empowering.
Hi ladies, hello, hi, hello.
Thank you all for joining today.
I'm going to call on each ofyou, one by one.
I'm going to start with you,allie.
(01:03):
Allie, do you feel like youhave an elevator pitch put
together?
Andi (01:06):
You know, I think I do.
I think so.
I mean, I've been talking aboutmy chronic illness for what?
16 years now, so I probably canthrow one together quickly.
Yeah, look like for you.
Would you like me to say it?
Absolutely Okay, okay, guys,don't come for me because I am
literally going to pull this outof nowhere.
But yeah, so my name is AliDiGiacomo.
It is a hard name to say, butmy name is Ali DiGiacomo.
(01:28):
I was diagnosed with juvenilerheumatoid arthritis at the age
of 15.
It is an inflammatory chronicillness.
It's not to be confused withosteoarthritis, with old knee
syndrome, you know, but I havebeen dealing with this for 16
years.
I like to call myself thearthritis auntie, and it has
changed my life for the better.
(01:48):
I became a personal trainerbecause of it and I tried to
prove to other spoonies that wecan move our bodies in a fun,
safe way, regardless oflimitation, and I also bring
awareness online as well.
So that is me in a nutshell,and, as hard as it is, I am
grateful for the community thatit has brought me, because all
of my closest friends struggleas well.
(02:10):
So that's me.
Jen (02:10):
I can look for something inspiring.
If I'm having a rough day, Ican look for Allie and watch her
drinking coffee and shaking herass.
She's going to motivate me andshe's going to crack me up along
the way as well.
(02:30):
Allie, thank you.
I love your elevator pitch.
Andy.
Tell us yours.
I bet it's single.
Ali (02:37):
So my elevator pitch is full of dark humor, but it's my
story, so it's true.
I tend to tell people hey, I'mAndy, I am blind and deaf.
One time I met Jesus.
I have arthritis, I have MS, Ihave lupus, I have a lot of
things that don't define me, butI don't look sick.
I can probably skate circlesaround you.
(02:58):
It took me forever to get mydiagnosis and my job is to make
sure it doesn't take you foreverto get yours.
When I'm in doctor's offices Igo.
I know that I have to tell youthese things, that you probably
didn't look at my record, so letme give you the cliff notes.
I am blind, I am deaf, we havedone all of these things.
I am a veteran and these thingsprobably led to the reason why
I am blind and deaf now and Iwould prefer to not go through
(03:20):
another 16 year circle.
So I'll give you some time toreview the things that you need
to review and we can reconvenewhere disappointment is.
In some resolution I'mtypically straightforward, but I
do lead with I am blind anddeaf.
So if I go home, can you pleaserepeat that?
Can you talk to me in a waywhere you were talking to me and
not at me, and I appreciatethat as well, because I don't
(03:43):
look stereotypically deaf and Idon't look stereotypically blind
.
I spent a lot of my day readinglips.
Jen (03:50):
That's exactly it.
None of us would ever know.
I didn't know for the longesttime, wouldn't have had a clue.
Andy, what I love about you is,if I am ever having a super
anxious, horrible day, all Ihave to do is talk to you and
within five minutes I'm at fiveminutes, I'm at ease, I'm
comfortable, I'm calm.
I don't know what it is, butshe needs to have like I don't
know your own podcast of calmand wellness.
(04:13):
I don't know.
We all need that in our livesand that's what Andy brings to
my life.
Megan, I am so excited to hearyour all day.
Yeah okay.
Linnea (04:22):
So hello am megan.
I have had rheumatoid arthritisfor about nine years and
rheumatoid arthritis is anautoimmune disease.
It is not like your normal wearand tear arthritis, because I
feel like so.
So many people who don'tunderstand confuse the two, so I
(04:42):
usually throw that in there.
But overall, I am a fitnesscoach for people who struggle
with arthritis and chronic jointpain, because I had to pretty
much revamp my entire fitnessjourney when I was diagnosed and
had to really make it fit formy body, my needs, my
(05:03):
limitations.
My goal is to show people thatyou don't have to give up.
Jen (05:10):
If you guys have not checked it out, she did
powerlifting.
This girl is strong, as inmuscles strong, so yeah, go
check that out First.
Megan is my whole positivemindset guru.
I can't believe that it's beenlike a year and a half that
we've been doing that supportgroup.
Now it's crazy.
And there's Lenia Are you ready?
Megan (05:30):
Yeah, yeah, hello, my pitch.
When I go into a doctor,especially if it's a new doctor,
I tell them my name, Ipronounce my name, I say Lenia
as my first name and I say,nicely, the K is silent.
I explain my name because theywill butcher it.
I'm sure you ladies understandthat.
But I also tell them Istruggled with joint pain since
(05:51):
high school without a diagnosis,until I moved to Arizona at 30
years old.
I let them know there wereyears I didn't have any
diagnosis, I just was onprednisone a lot and I didn't
want that.
That was my first thing.
I told to tell them I explainedmy heart conditions.
If they don't know what RA is,I explain what it is, because I
have come across doctors thatdon't understand what it is.
(06:13):
But yeah, that's kind of.
I hope that answered.
I'm a little funky.
Jen (06:17):
That's okay.
You've got the flu.
We understand Just the factthat you share.
That is amazing Fun fact foryou.
Lenea was my first guest on thepodcast.
It was during that conversationthat we found out we both had
the exact allergic reactioncausing the pustular psoriasis.
Megan (06:34):
I thought I was like on this desert island out here,
until Jen walked in and told methat happened to me.
I realized I wasn't alone.
Jen (06:56):
My doctor was floored that I actually met somebody that it
had happened to.
She's made life a lot easier.
We put ourselves on an islandbecause then we can't get hurt
and it's like a safe place, butit's lonely too and we can't
live there.
I could easily go on a tangentand have us go there, but that's
not what we're here for.
We are here to give some tips.
Raise your hand if you want tojump in on this.
My first question is why do youthink it's important for people
(07:17):
with chronic illnesses to havean elevator pitch prepared to
share their health stories?
Ali (07:26):
Andy, I'm ready for you.
Okay, so there's severalreasons, right, but I think that
it's empowering.
I think that when you walk inowning your story and owning
your diagnosis, it's empowering.
It allows you to articulatewhat your body is going through
versus what they see of you,because you may not always look
sick, but I think that in havingthe elevator pitch and in
(07:47):
sharing your health story, aspersonal as it is, it helps
other people.
It contributes to their healing, it contributes to the
education of the provider that'sgoing to be treating the next
person.
But it is also a way for you toadvocate and continue to
advocate for you on your behalfand on the behalf of the people
that will follow you stilltrying to get their diagnosis.
(08:08):
I think it's super important.
I would much rather have theelevator pitch than people stare
and have questions that theydon't want to ask or come up
with their own conclusions orassumptions.
But especially kids, right,they want to know.
But I would much rather havethe conversation so you're
educated and you can become partof the super advocators.
Then you think it's somethingyou use that as a way to
(08:32):
belittle or hurt someone else'sceiling.
So I think that the sharing ofthe stories, especially from
people who don't look sick,makes the generation behind us a
little bit kinder with theirword choice and a little bit
more grateful that they canfunction in the bodies that they
have, even if it's for theright now moment, before they
hit their prime, you know.
Jen (08:50):
I agree.
Does anyone have anything tochime in on?
Andi (08:53):
I mean yes to everything Andy said oh my goodness.
But also, you're going to betalking about your chronic
illness a lot.
I've had it for 16 years and itcomes up all the time.
Like Andy said, it's veryimportant to have your elevator
pitch to explain it, because alot of chronic illness you can't
see, like invisible illness youcan't see.
So it's really important toeducate everybody and just get
(09:14):
it over with like right away,like this, this, this and this,
so that they don't have to youknow, like Andy said, ask
questions.
They can ask questions, that'sfine, but they don't have to
assume what's going on with you.
But yes, you're gonna betalking about it all the time at
the workplace with friends andfamily, on podcasts.
You're gonna be talking aboutit on social media at the gym.
(09:34):
So it's really important tohave it because it's gonna keep
improving and I bet you anybodyif you ask any Spoonie, they
probably already have theirelevator pitch because they are
so used to talking about theirchronic illness.
So it's great to just have itin your back pocket ready to go.
Jen (09:49):
I agree with both of you so much.
I think the first time I everheard anything about this kind
of thing was actually before Igot sick, and the reason I heard
about it was from mysister-in-law.
I think some of you know, but Idon't know if all of you do,
but my niece was born in 2009and she was terminally ill with
Tay-Sachs disease and as she gotolder she was deaf and blind
(10:11):
and my sister-in-law could notgo to a store without these
people coming up to her andsaying the stupidest things Talk
about foot and mouth, walkingup and being like poor dear, she
looks tired, you're wearing outyour poor baby.
No, actually she's deafblindand dying, but thanks for being
a jerk.
It got to the point where sheactually made a business card
(10:32):
telling people what Tay-Sachswas and about her daughter.
She would hand it out to peoplewhen people would come up and
say those stupid things and talkabout a change in the way they
talk to you after that, ifyou're not comfortable talking
about it, make a business card,make a flyer, make a handout,
whatever.
But do something.
Don't just stand there and letpeople talk to you like that.
I mean it.
(10:53):
Just it goes along with how I'malways telling you it's okay to
fire your doctor.
It's okay to just tell peoplewho to buzz off or educate them.
Take that moment to changetheir minds.
The educate them.
Take that moment to changetheir minds.
The next question I have foryou what has been your personal
experience in communicating yourhealth story and how has having
an elevator pitch helped you?
Who would like to talk?
(11:14):
Oh, Megan.
Linnea (11:15):
So honestly, I kind of like yes to everything that
everybody said in that lastquestion like hit the nail on
the head One hundred percent.
Said in that last question,like hit the nail on the head
100%.
I really wish that I would haveworked on having an elevator
pitch when I started going tothe gym again, Because it's when
you are young and you lookhealthy, because obviously the
(11:38):
RA is invisible, people reallyassume that you can do a lot
more than you can.
So whether I was training atthe gym and somebody made a
comment of me not doing as muchor not like working out with the
client, or if I got commentssaying, oh, you should be doing
this instead of that, or whyaren't you lifting heavier,
(11:59):
which is so frustrating?
Yes, Allie already knows what.
Jen (12:04):
I'm sorry, you were lifting like crazy.
So why in the world were theyasking why they could lift more?
Linnea (12:11):
I don't know.
Well, this more happened beforeI started lifting heavier, when
I was dealing with a ton ofpain and flaring.
I think that had something todo with it.
Well, it's kind of funny,because when I started lifting
heavier, I actually got an oldergentleman to come up to me and
tell me to lift lighter.
I don't know.
I don't know why people thinkthat they need to assert their
(12:32):
opinions regardless.
But I always tell them that Ihave rheumatoid arthritis and I
make sure to tell them that itis an autoimmune disease, that
way they don't confuse it withosteoarthritis, which happens
all the time, because then theystart saying oh well, this works
for me.
I have arthritis in my elbow orI have arthritis in my knee or
(12:53):
you know that kind of thing,yeah.
So I wanted to throw that outthere in case any of you can
relate, or because it's sofrustrating and that's where I
needed it the most.
Ali (13:04):
So yesterday I was at the gym and it was the same thing.
It was like the dumbestquestion ever.
And then they were like andyou're doing it wrong.
But then I watched them get onthe squat rack and you can't
functionally move your bodyweight.
So before I left the gym I waslike I walked past the rack
again.
First off, he had all of hisweights there, but he was having
(13:25):
a whole conversation withsomebody over by the lap pull
down.
And that just really poked thebear, because I'm trying to get
some gains and leave Right.
And so I go to the squat rack.
You're clearly not here.
You're clearly the jerk thatdidn't want to re-rack your
weights.
I don't care.
He says, oh, it might be alittle bit too heavy for you,
honey, right.
I said, oh, this little 45plate, that's cool.
One arm down, bam.
(13:46):
He's like I don't want you tohurt your back, john, you're not
functionally moving your bodycorrectly, but it's okay.
And he's like I guess youwatched a little Chloe Ting's
fitness or that Pope to bear youno more.
I said, wow, we're trying ittoday and I have time, so,
whatever, as he was saying thatone of my youth athletes, one of
(14:06):
my track athletes now incollege is across the gym.
It's like, coach, you good,comes across the gym, gives me a
hug.
He was with those idiots, right, but didn't know that I had
just had that conversation withthose idiots and then so they go
coach.
He was like, yeah, she's thereason I got into college.
She's strong, she's strong ashell.
You just don't know it.
Don't let the baggy hoodie andthe small, the timid voice and
(14:28):
the doe eyes, the Disney eyes,make you think that I cannot
pick up heavy stuff and put itdown, that I cannot fling you
across this gym with my legsMaybe not with my upper body,
but I can fling you through awall with these legs.
I don't look sick, I don't wearit as a label, I'm not like hey
, please pity me, I am a womanthat is trying to do the best he
can do in my body and preferyou to not be taking up my time
(14:51):
having a conversation by the lap.
Pull down, do better, do better, so you can be buffered because
you're not buff for real.
So that was my gym experienceyesterday.
Jen (14:59):
And Allie's over here excited and dancing and cheering
you on, and I'm over here going.
Wait, he called you honey.
There is nothing that pisses meoff more than somebody coming
up to me and calling mesweetheart or honey.
First of all, you don't know me, you're not my husband, you're
not family Back off, so let'snot start there.
That's not okay.
I'm not your honey and theydon't know us.
(15:20):
I'm sorry, but every single oneof you are extremely strong,
extremely strong inside and out.
You have something to chime in.
Megan (15:27):
I would, because I've had that experience.
But at a doctor's office I hadan orthopedic doctor tell me
that I was just overweight.
That was my only issue.
I did not have RA, I did nothave psoriasis.
He told me all my issues wasbecause of my weight, which at
the time, the doctor I was onrheumatologist had put me on a
(15:49):
ton of steroids, which if youknow anything about prednisone,
you know how they like and I wasnot getting better.
I was getting worse.
To have your doctor tell you, Iwalked out of there in tears, I
do have to say.
My primary fired him and he wasno longer in his office any
longer because of the way hetreated me, because he goes.
That girl has been strugglingfor years and you just sat her
(16:12):
back because of your negativity.
But that's the same thing weget out in public too, and it
was hard for me to come overthat because it was a doctor
that said it, a doctor thataccused me that it was all my
own fault.
That can affect you on how youtalk to people.
I didn't tell people for thelongest time when they would
make a comment about myarthritis If they said, oh yeah,
(16:34):
I've got that arthritis too.
Like I didn't say nothing untilI started on Instagram and I
found all you ladies.
Andy Allie, especially, was oneof the first ones I found and
she liked her positivity and I'mwell, I can do that too.
It really changed, and beingaround others like you makes a
huge difference.
Especially it helps you buildup your elevator story too.
(16:56):
But it gave me the courage totell everybody now even doctors
that tell me it's my fault.
I don't let them walk over meanymore.
I use that elevator speech I'vecome up with and I didn't know
that's what it was called, butit makes a difference having it
in my pocket.
Jen (17:13):
Like you guys said, I couldn't have said it any better
than any of you.
So my next question and this isa really important one is what
are the key elements that youbelieve every health story
elevator pitch needs to include?
I know you all have a top three.
Okay, andy, you're ready.
Ali (17:30):
Freaking love this question when I read it.
I freaking love this questionbecause I feel like all of the
elements are super important,right, so the brief description
of what's going on, but insimple terms, because not
everybody's going to understandit at the level that you
understand it, how it affectsyou personally, how it may
affect your personality, so yourspecific, unique experience,
(17:53):
not your cousins, not Johnnydown the street who had
arthritis in his elbow.
But then also the touch ofpositivity and resilient,
because people here sick andautomatically go to the I pity
you.
Look, your elevator speechshould always have I am
resilient, and here's a positiveaspect.
And then it should always havepurpose.
(18:14):
What was the purpose of yousharing it?
So, ending your story with?
I decided to share this withyou because I wanted you to be
more educated or because I'madvocating where I wanted us to
be able to connect.
But having those elements makesit less daunting to one, want to
share your story.
Two, easier for people to bereceptive to hearing and seeing
(18:34):
you beyond your diagnosis.
Hey, he has this, but she coulddo all these things instead of
you have this.
That means you can't do thisanymore because I got tired of
that and I'm like hold on, Ihave this, but I can also do
blah, blah, blah, blah, blah.
So your elevation pitch shouldbe I have this, but, and then
sprinkle your rays of sunshineand resilience.
(18:55):
Make it as dark or dark, humoror positive as you want, but be
sure to highlight yourresilience, because nobody's in
these shoes but you, and it'stough to walk around in a body
that fights itself all day.
Jen (19:09):
Absolutely.
And look at how many amazingpeople in our community and what
they're doing and they stillare chronically ill.
We've got professional dancers,We've got ballerinas All of you
doing all this coaching,lifting weights.
I wanted to do roller derby.
I kind of wish I still had, butmy husband was afraid I'd kill
myself or break somethingimportant.
(19:31):
But still we can do all theseamazing things.
Who's in our way?
We are in our way.
Linnea (19:36):
I can't know how to necessarily tell the instructor
(19:59):
that they do have theselimitations that exist and they
just kind of, you know, wantthat instructor to know which
yes, you should always do that,but they don't want the
instructor to think that, youknow, oh, you probably shouldn't
be doing anything or, you know,or just taking it way too easy
on them.
Jen (20:15):
So that's kind of similar to how I tell them to tell their
in-person fitness instructorsjust focusing on what you are
able to do, even though you dohave this condition or these
conditions, yeah, and it's okayto go into the class and tell
them that I've gone into yogaand pilates and said, hey,
anything where you want me to beon all fours, that's's going to
hurt.
My shoulders are a mess, nothanks, but I can do all the
(20:37):
other stuff.
So just if you have ideas onhow to adapt, please give them
to me.
And it's okay to say that If Ihave questions, I know I can ask
any of you also.
You're going to give me greattips.
It's great.
Andi (20:48):
Anyone else want to chime in.
I like everything everyone saidI always talk about and I love
adding positivity and dark humorinto my elevator pitch, like I
always talk about how I cope atthe end, like how I cope with
dark humor and I make funnyvideos on it.
But also I love to say I justneed to modify life, like I
modify at the gym, like I modifydaily things.
So, yeah, I talk about how Ihave to just modify everything
(21:11):
that I do.
It's just I'm telling.
I like how Andy said tellpeople why you're telling people
this.
It's always.
I'm like I'm telling you thisbecause I've taken many fitness
classes where they didn't offermodifications.
And it's another reason why Ibecame a trainer, because we all
kind of have to modify life andyou can't just like judge a
book by its cover.
Baby, we got to modify.
So I just love adding that inthere as well.
Jen (21:35):
I want to have you think something over and mull it over
in your mind If there's anyquotes that you've either heard
or that you've come up with onyour own that you would want to
use to inspire someone.
So just kind of mull that overas we discuss question number
four how can someone make theirpitch concise yet impactful,
especially when the details ofchronic illness can feel complex
(21:56):
?
Ali (21:56):
I know that's a biggie.
Jen (21:58):
And I threw two things at you and I think to make it
impactful it means choosing yourwords wisely.
It doesn't need to be a longspeech, it can be two sentences.
Just make sure you have all theimportant information in there
and we can make it lookdifferent for different kinds of
people.
What I say to my family isgoing to be something different
than what I say to a completestranger.
What would you think issomething that makes it concise
(22:21):
and impactful?
Any tips for somebody, let'ssay, concise and impactful.
Ali (22:27):
I think it's important to focus on what's relevant in the
right now moment In order tomake it impactful.
You don't want to overwhelmthem with all of the thing, so
pick the thing that is the mostrelevant in the right now moment
.
It can be overwhelming for theear hearing it, where we list
every symptom, every diagnosisand everything that we go
through in our daily lives.
(22:47):
And I didn't always understandthat they go the blank.
Look, it's because half of thestuff they're unfamiliar with.
So, focusing on what's mostrelevant in the now and how they
can help you in the right nowmoment removes so much
frustration from both parties.
You frame your thought in a waywhere you can highlight both
the struggle and the strength,so that it is not she's having
(23:10):
he or she's having a pity party,or please pity me for the lack
of better words.
I am struggling with this, butI'm also doing this and you can
be part of the strength thathelps me continue to be able to
do this.
So for me, I kind of tellpeople like I have this
autoimmune disorder thing goingon and I got some neurological
(23:32):
things going on.
I will have days where itimpacts my mobility.
I will have days where itimpacts my energy levels.
I will have days where itdefinitely impacts my sensory
abilities.
However, I can still do all ofthese things and on the days
that it affects me, I just needyou to adapt and just be willing
to pivot when I have to pivot.
So it's not a big scene and it'snot oh no, what happened, but
(23:55):
it's to offer them another wayto understand, without the
overwhelm Because I'm big on, Idon't want anybody to be
overwhelmed and I think whenwe're chronically ill we tend to
not want to share because wedon't want to overwhelm the ears
that has to hear what we'resharing.
But we can share it in a waythat is digestible and
bite-sized pieces and still getthe help that we need and make
(24:16):
the friends along the way thatcan help us along our healing
journey and support us.
Just bird feeding, right.
We want to tell them, but wecan tell them without all of the
emotional word vomit that theydon't understand.
Jen (24:28):
I think that's wonderful and start somewhere.
Make a list of those impactfulwords, those strong words that
you think are important.
Make a list, start there andthen, as you work on it, think
about the different dynamics,the different people that you're
gonna walk around and talk toin your day, and come up with a
couple sentences for each oneand if you have to write it down
(24:49):
, keep it with you, practice.
Megan (24:51):
Anyone else.
I was thinking of a tip whenshe was talking about talking to
just anybody your family,whatever.
When you're talking to yourdoctor, make that list that you
were not talking about.
But I want to build on thatwhere you write out your
elevator notes on your piece ofpaper, on a notepad.
Write your questions out indetail, because I know my
(25:13):
rheumatologist.
When I come in with my notepadhe knows I mean business and
we're going to get right down toit.
I feel like I have noticed thatmy appointments go faster and I
get everything answered.
I walk out of there going okay,we've got a game plan.
I know what I need to do.
If I'm struggling.
I tell him look, I have X, yand Z I want to do and I
(25:34):
physically cannot get there withthe medication I'm on.
I need help or suggestions onhow to get there.
I always go in with something Iwant to do.
So he knows that I'm motivatedand I'm not just in there
wasting his time.
And I guess that comes back tothose other doctors that have
gaslighted me so bad that I overmaybe share, but he seems to
(25:57):
respond to it.
So I think my best tip foranybody is making a list and
you'll eventually get to where,like all of us, we've been doing
this for so many years we don'tneed our list.
I still do it because I getbrain fog and I forget.
I just to make sure I don'tforget, and make that list.
I'll even write down my notesfor my elevator if it's a new
(26:17):
doctor, so I don't forget totell him something that's really
important, like my heart issuesI'm having.
Like that is important becausewe can't give me any medicine
that's going to cause my bloodpressure worse.
Jen (26:27):
So that would be my I actually have one more tip too,
because there's a lot of us inthe community that do advocating
, I think.
Yes, I have a business cardbecause of the podcast that I
hand out.
But what's wrong with having abusiness card if you do advocacy
work, because sometimes you aregoing to meet people that
they're like oh, I want toconnect with you more, or oh,
(26:49):
I've got this project orwhatever.
There's so many oohs out therethat you're not going to expect
Make a business card, have a QRcode on the back or your phone
number or your email or whateverit is you want to give them.
It doesn't hurt to have that.
Andi (27:01):
I second that because for someone who brings awareness
online Also, if you don't wantto get detailed about what you
have and what you struggle with,it's really good.
I usually give people my socialmedia and it explains it all on
there.
You can even give like somebodyelse's social media to somebody
, like hey, at the end of yourelevator pitch.
If you want to understand moreabout this, you can follow this
person, explain it all.
(27:22):
I usually lead people to myInstagram if I don't want to go
into detail and all I have to dois go, look and they'll see all
the medications I've been on,what it does to me, how it
affects me, blah, blah, blah,blah, blah blah.
So I love that giving out likeyour business card.
I have like a QR code on myphone and I just they can scan
it and get to my socials.
Jen (27:38):
Yeah, and I guess there's key chains that you can get to.
I haven't gone that far, butyou know there's key chains
where you can have a QR code onit.
But okay, so our last questioncan you share any strategies or
tips for practicing andimplementing the elevator pitch
for everyday situations?
I mean, I feel like we kind oftalked about that, but does
anyone have anything to add tothat?
Ali (27:59):
I just want to know how Allie came to the conclusion
that I'm going to just relay itwith dark humor.
I'm just I'm curious because Ijust met someone else who does
dark humor like me.
So what was your catalyst thatsays I'm going to start
explaining this with dark humor,Because when I was trying to do
a bubbly you didn't get it?
Andi (28:16):
I love this, so it's actually my coping mechanism.
So, comedy I love making peoplelaugh and whenever I'm in pain,
especially with my chronicillness, most likely I'll make a
reel about it to make myselflaugh, and the darker the better
, because what we have is dark,it's not fun.
No-transcript.
(28:57):
Oh, she's, you know, lookingfor attention, wants you to pity
her.
Blah, blah, blah.
My Instagram would be very dark.
So, in order for me to cope andin order to educate others and
also make other spoonies laughthrough the pain you know,
because we don't do that, thatit's not easy to laugh through
the pain, but just to take asecond to make fun of ourselves,
like that's what I do I makefun of this chronic illness to
(29:18):
help myself cope, to make otherspoonies laugh for a second and
also to educate people on whatit's like to go through this.
So, yeah, that's how I got intoit that was me, that was me.
Ali (29:28):
I kind of slide in that one time I met jesus, or yeah, I
saw that with this eye and I'llbe pointing to the blind eye and
they're like wait, yeah, Iheard what you said, but are you
pointing to the deaf ear?
And so it throws people off.
They're like are you wearingheadphones in both ears?
Yep, but you can't hear outthat ear.
You're right, but this is sothat I double can't hear you.
But I did.
I love that.
I love that you find the silverlining, because I know that it
(29:50):
can get dark and if we can'tlaugh at ourselves and with
people as dark as it can get, itcan spiral.
So I'm glad that I have youguys.
So thanks.
Jen (30:00):
Likewise, and so Annie, megan and Linnea.
Did you guys ever see, was itlike two years ago now, allie?
You know, we gotta bring it up,we bring it up all the time
right when she had the video ofher crying and someone wrote an
article about her and severalothers, and they called you a
teenager.
Is that you that was?
Andi (30:19):
that was?
Yeah, that was me.
I was the very first picture.
At the top there was a redheadtoo, and she's.
Ali (30:25):
There was a.
There was a redhead, they didit on tiktok.
Andi (30:28):
That was you that was my tiktok, yes, but they called me
a teenager.
So I was like that's the firstthing I said when my friend,
who's also a Spoonie we were ata conference in front of a bunch
of doctors, when we found outabout that article, she brought
it to my attention and I waslike they think I'm a teenager,
I'm in my face.
But yeah, no, it was sad thethings that they said about us.
But that's the thing.
I post one video, one video.
(30:50):
That's not a funny video andit's me crying because I was
going through depression, I wasin pain and I had to inject.
I had to stab myself with theneedle and I was just like I
have.
I have to do this with mycommunity.
So I put my camera on, becausewhen I inject and I'm alone, I
don't want to feel like I'malone.
So I throw my camera on becauseit makes me feel like I'm with
all of you.
And so I threw my camera on, Iposted it and then it gets
(31:11):
picked up by a magazine andCandace Owens.
I was like the one time.
Jen (31:15):
But you know, yeah, yeah, Nothing about like turning on
your TikTok or Instagram andfinding out people are lying
about you.
But hey way to look at it onthe bright side is that they
called you a teenager whenyou're in your thirties.
Andi (31:25):
You know none of us were teenagers.
There were multiple girls inthat article and not one of us
was a teenager.
Like come on, but yeah, it was.
We had to bring awareness to it.
We didn't want to like sharethe article, but we did have to
bring awareness because they areattacking kids, they're
attacking teenagers sick.
Like that's disgusting.
Like they're attacking sickteenagers and preventing people
(31:46):
from sharing their story,preventing teenagers from
sharing their story in fear thatthey're going to think that
others believe that they're justdoing it for attention.
Like I never brought up the factthat I had a chronic illness in
my teenage years it wasn'tuntil I was 25 because I didn't
want people to think I want themto pity me or that everything
Andy was saying like I'm notgoing to be able to do things,
(32:07):
or I don't want to hear thatyou're so young.
So for people to make anarticle about that and now
teenagers are going to be infear of sharing their journey,
their life, like it's not, likethey're exaggerating it, making
it worse.
So we did have to bringawareness about that for those
teenagers that they should nothold back.
They should share their storyand not be afraid of what some
old adults in England becausethis was an English story are
(32:29):
writing about us.
But yeah, they said that we'reall faking it and a lot of the
pictures and videos that theytook were us injecting or us at
the emergency room, which isvery sick and it's absolutely
disgusting to me that they woulddo that, especially thinking
that you're teenagers.
Jen (32:44):
Because, I'm sorry, I have lived with anxiety and panic
attacks since I was 12 years old.
I hid them.
I did not talk about it, I hidit.
It was my deep, dark secret.
Because that's what we do whenyou're young you don't want
anyone to know there's somethingwrong with you, you just want
to fit in, that's all.
You want To have articles likethat come out.
(33:05):
It's absolutely disgusting.
I guess what boggles my mindeven more is that they thought
they were attacking teenagers.
What made that?
Okay, come on, do better.
And he says it all the time Dobetter.
Andi (33:17):
Disgusting, yeah, do better.
But honestly, yeah, I didn'ttell anybody about my R.
I used to tell people I had aknee injury and people didn't
know until 10 years after I gotdiagnosed that I had a R.
Like when I made my Instagram,people from home were like you
had this for 10 years and youdidn't tell anybody.
Jen (33:32):
I was like yeah, no, I'm going to circle back now.
Have you thought about it?
Do you have a quote, whether itbe somebody else's or your own,
something that you say all thetime, or something that you
share with others?
Linnea (33:42):
Megan, yes, okay, first of all, can I touch the last
subject really really fast,because it was horrifying seeing
that article, first of all, butthen second of all, that is why
, when I was 18, I didn't tellanybody about RA, where I tried
not to unless I absolutely hadto, because there were people
(34:02):
saying in school that weresaying that I was faking an
injury and all of these things.
I wanted to hide it as much aspossible.
I'm really glad that you wereable to bring awareness to it,
without necessarily promotingthe article, but letting
teenagers know that it's okay toexpress yourself and find
community that way.
(34:23):
But with the quote, mine'sreally cliche and I apologize
for it, but it is so true and Ifind that it is like something
that I tell myself all the time,and that is you are so much
stronger than you think you are,because every time I think that
I can't do something or thatI'm not going to be able to do
(34:44):
something, I end up exceedingwhat I expect myself to do.
So yeah, that is my quote,absolutely lifting, mar Lifting
marathons K's.
Jen (34:53):
I don't know you do the dang things I tried.
Ali (34:59):
My quote is you are not your illness.
Your illness may be a part ofyour story, but it doesn't
define your worth or yourstrength.
Some days you will conquermountains and other days you
will simply breathe.
Those are both victories.
You okay with it.
Megan (35:13):
I love it.
I'm going to push this back somaybe you can see I have all
these pictures up here and there.
You are loved, you areempowered.
My daughter got me all thesepositive sayings when I was
going through depression reallybad and she goes mom, you just
need to remember.
So I put them up recentlybecause I redid the office.
And so there you are forgiving,you are capable, you are
(35:36):
confident.
I swear I now walk through here, through my little office now,
and I will read one of those aday, especially if I'm
struggling with something youknow like feeling not capable of
doing something, I will grabthe capable one.
And those are my quotes.
They're not really quotes, butI think you find your own
affirmations that you can saythat motivates you.
(35:58):
I think that's what's reallyimportant and she did a really
good job finding these.
Jen (36:02):
I love that she's always looking out for you.
What a good daughter she is.
Megan (36:06):
I know she was on the phone with me when you were
texting me because she had tocall and check on me.
She was going to get me intothe doctor today.
Jen (36:14):
See, I'm telling you you've had a good one.
Megan (36:17):
She works for my primary, by the way, ladies, so she has
a direct line.
I love that's my little thing.
Andi (36:47):
All right, allie, you're not going to win.
You're not going to win.
I may be struggling right now,but I'm going to do something to
make myself happy, becausebetter days have to be ahead.
Monday, I was in bed the entireday.
Today, slaying, baby slaying.
So those days are ahead.
Just look forward to them, baby.
It's true, it's really, reallytrue.
Jen (37:04):
There are always, always, better days ahead.
And for some reason and I couldbe wrong, but, allie, are you
the one that last year, when thenew year happened, that your
word of the year was?
Andi (37:14):
adventure.
I think that was me like twoyears ago.
Yes, it was.
Yeah, yeah, yeah, I was goingon adventures every day, even if
it's small.
Jen (37:22):
Yeah, and so last year I decided to focus on adventure
awaits, because I really lovedthat you did that and I thought,
okay, adventure needs to beready for me, it awaits.
And so I wanted to make lastyear a year of adventures, and
this year I guess I'm going tosay that again because I've got
two kids getting married thisyear, you guys, but I do have
(37:43):
some quotes for you.
One of them I heard somewhereand I loved it, and then the
other are two that I find myselfseeing to people constantly.
So the one I heard I wish Iknew where I heard it from but
it says you cannot chasehappiness, you have to find it
where you are.
I wish I could remember whosaid it or where it came from,
but I was like, okay, and then,of course, the ones from me be
(38:04):
who you needed when you wereyounger.
Ali (38:06):
That one right there.
That one right there.
Be who you need, who you neededwhen you were younger.
Jen (38:12):
Yes, jenny, that one right there, it's why I do all the
things I do.
It's why I show up for myself,for everyone else, because I
needed this, I needed this group.
I needed me to be who I am whenI was younger and I didn't have
it, and so, therefore, be thatnow and be that for others.
And then my other one is I havethe choice to let life happen
(38:35):
to me or be part of it.
I mean, we do.
We have that choice everysingle day.
So we want to watch our days goby while everybody else is
having their adventures andliving their life and we're at
home in bed feeling sorry forourselves.
No, ma'am, it's okay if I havethat from time to time.
I'm going to have that fromtime to time.
Nia last year had a really hardyear and, girl, you keep showing
(38:57):
up for yourself.
You do it all the time.
You show up for yourself and beproud of you, because this is
our year.
I'm telling all of you rightnow this is our year and we are
going to show up and we're goingto kill it, just saying Thank
you for being here.
This was amazing.
I was so excited to bring ahandful of my favorite people
all into one room together.
Ali (39:18):
Thank you for having me Thank you.
Jen (39:22):
Is there anything that you're going to leave us with?
Is there any that you're goingto leave us with?
Ali (39:27):
So be you, unapologetically , you, you're already enough on
every day that ends, and why.
Whatever it is you do next isgoing to be great.
Just don't know what's on theother side of I'm scared.
So today, take the one step,the faith of a mustard seed, to
do the thing that you werescared of, because joy awaits.
We don't really have to find it, we just have to pause long
(39:49):
enough to actually see it andadmire it, because it's always
around us.
I love it, I love it.
Andi (39:54):
Okay, I got chills, goodness, I got chills.
Everything Andy says I'm overhere, like, oh, I got chills,
like, yes, I just want to say,if you're chronically ill and
listening to this, find yourSpoonie community, find your
friends, because just talkingwith you guys brings me so much
joy and I didn't have anybody,any friends, any family members,
anybody with a chronic illnessgrowing up, which is why I never
talked about it.
(40:14):
But when you find your peopleor in your community and you're
able to vent, it's so important.
Please, maybe vent.
Don't keep it in.
But when you're able to ventand talk to people who get it,
it just warms your heart.
So please, please, please, finda friend who has your chronic
illness, is on the same meds asyou, you know who gets it, and
just reach out to them onlineand make a friend.
Jen (40:34):
Don't be afraid to make a friend.
When I first joined thecommunity, I looked at people
like Allie or Sheryl Crow or anyof the people that were big in
the community and still are.
I looked at you like, ooh,they're famous in the community.
I'm just little old me.
They're never going to talk tome.
Look at it now.
Look at it.
I know you're not helpingpeople, allie, you were like my
(40:55):
superhero.
I know I wish, but you knowwhat?
In our community there arequite a few people that people
consider famous and we're alwayslike, oh, they're never going
to reply to me.
Andi (41:06):
No, my DMs are caught up.
If anybody wants to be a newfriend, See exactly.
Jen (41:14):
I happen to know, if you are listening, that every single
person that has been speakingtoday they're going to answer
you.
They will show up for you, sodon't be afraid to reach out.
Ok, I have kept you all longenough.
Thank you for your time and toour listeners.
We'll see you next time.
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