Becoming a Leading Voice in Patient Advocacy with Kristal Kent

Episode Transcript
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(00:04):
This limit typical, there's something wrongand that's where that self empowerment health accuracy
piece comes in. Just to getthere, you can have to go through
the gamut of learning and connect famewith people and entities. They're going to
help you be able to do thatself advocacying and figure out, you know,
is this something of a norm oris this nothing? Cue music Places

(00:32):
and everybody Places. We're starting inthree two. Welcome to the Autoimmune Hour,
where we look at the rise ofautoimmune disorders. I've brought together top
experts that range from doctors, specialist, nutritionist, researchers, and even those
recovering from autoimmune to bring you thelatest, most up to date information about

(00:53):
autoimmunity on how to live your lifeuninterrupted. Thank you for joining us here
on the Autoimmune Hour with sharing sales. Always seek sound, legal, medical,
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(01:14):
now at Understanding autoimmune dot com.Now back to your host, Sharon Sailor.
Welcome everyone to the Autoimmune Hour.I'm Sharon Sailor from Sharonsailor dot Com
and I'm so excited to be herewith you on another brand new episode.
And you know I'm gonna apologize earlyfor the lighting. I'm not in our
home studio, I'm out on theroad, but I had the opportunity to

(01:36):
talk to Really, I'm someone I'ma huge fan of, Crystal Kent.
She's here with us again tonight.She's an Army vet living with bibromyalgia.
You might remember her story, butafter being medically discharged due to injuries,
she stayed on with her army unit, volunteering as a family readiness group leader,
which morphed into a supportive extension forboth soldiers and their families, and

(01:59):
from adult advocacy coordinating roles. Andthat's where she's taken her life into advocating
for her others and herself. It'sjust awesome to hear how much she gets
out there and really builds awareness andstarts a community consciousness about people living with
a variety of invisible illnesses. Andso welcome, Crystal, thanks for being

(02:21):
on the show. It's so goodto see you again. Like Race,
thank you for having me again.I always enjoy being able to connect and
catch up with you. Yes,and I think we have to give everybody
fair warning that we run down rabbitholes. Okay, you'll never know what
we're gonna get when Crystal and Ichat, but I'm really excited. And
one of the things I wanted totalk about with you with fibromyalgia was that

(02:43):
oftentimes it's misunderstood how to categorize it. Sometimes people call it automne other times
call it neuro So why not cometo Crystal, who really does her research
on this kind of stuff. Howwould you talk about fibromyalgia? Someone said,
what is it? I actually wouldn'ttalk about it because I keep a

(03:04):
neutral opinion and not its due towhat research is out there or lack there.
What we do know is so whenyou look at TEX funded health centric
entities like this CDC or the NationalInstitutes of Health. The National Institutes are
in my age, for example,like they have housed under like the neurological

(03:25):
umbrella there. So think of itas medical conditions that are similar under particular
stub might in this case neurological,and it's housed under there. But we've
been not assigned like a room,so we're kind of in the lobby.
So they know it's neurological in nature, and there's a lot of intricacies and

(03:51):
fascinating things happening in the central nervoussystem, like the GLES cells haveing neural
inflammation in our brain, and inour brain the pain centers are a lit
up like a broken twenty four houryou know, driving diner sign. So
we know that it's ideology is neurological. What we don't know is the subtype.

(04:12):
And what I mean is it couldbe an autoimmune neurological condition kind of
like MS, which is an autoimmunedisease that is in effect of affecting and
attacking parts of the central nervous system. Or it could be a neurological disorder
like along the lines of epilepsy ormigraine disorder. There's some type of disruption

(04:36):
that's going between like the brain andthe body through the middle messenger of the
spinal cord. And then it couldbe a degenerative medical condition, a neurodegenitive
along the lines of Parkinson's. Andwhat happens is there's really a lack of
specific driven research that's targeted to kindof pinpoint what type of nerological stub type

(05:01):
medical condition fibromushit, so we donow neurological in majuor what kind of neurological
that is where the question lays,So what research is out there and not.
I'm based in the United States,so not just in the US,
but in other countries. We seeresearch come in that supports each subtype of

(05:23):
a neurological medical condition, and sowe're kind of like the jury's out.
So that's one of the reasons whyI do the advocacy I do, whether
or it's advocating more funding is appropriatedthrough these tax funded entities like the NIH
or private entities to do more targetedresearch because without knowing the root cause or

(05:49):
or that pinpoint of this is whereit starts in the neurological system, in
the long run, any treatments thatare developed are more likely than not going
to be as affected versus if wedid know that starting point in the central
nervous system with fiber. So mypersonal opinion is the jury's out. But

(06:10):
this is what we do know,and this is what we need. We
know it's inerlogical. We need morespecific driven research to pin it all down
and that's part of what you areso brave and strong and just I admire
your advocacy for getting out there andbuilding awareness. Now. I know this
month of May is Bibromyalgia Awareness Month, as well as many other awareness and

(06:32):
depth conditions. But talk a littlebit about your journey through fibromyalgia, because
oftentimes I hear from people and thisis going back decades when it really wasn't
taken seriously at first when it beganto hit on people's radar. The unfortunate
thing is, especially in different areasof the world, but still in the

(06:56):
US it's not taken as seriously.We are seeing narrative change a little bit,
but for myself it's a little bitconvoluted. But I actually wasn't officially
diagnosed until twenty fourteen. However,I was fortunate enough because I live outside
of Cleveland, Ohio, so Ihave access to many healthcare systems that are

(07:17):
world renowned, and I was ableto access specialists and I ended up seeing
a rheumatologist, of pain management doctorand neurologists all separ from each other,
and when they went through my timelineof symptoms and history of these weird nuances
like these weird medical nuances like wouldcrop up, like I'd have these weird

(07:40):
things happen medically and then it wouldgo away. And it really what it
was, it was fiber miles offlaring up and kind of in a sense
calming back down. What these threespecialists, independent of each other, traced
my symptoms going all the way backto August of two when I was still

(08:01):
in military, and those symptoms startedsubsequently after a military truck that I was
in crashed in a ditch and therewas something because I ended up being hospitalized
because my leg was all swown.It was like they're like, oh,
we think you have a blood clot. I'm like from a car accident,
like what. And even in thehospital, I was saying like, oh

(08:22):
man, my stomach just just killingme. Or I just am having like
these minute headaches, or I'd havelike a migram that would come on real
fast and kind of fade out,and just these symptoms that really weren't correlating
with what happened in this military truckaccident. And so when they all looked

(08:48):
at that timeline, it was fourteenyears before I was officially diagnosed. Wow,
And the sad thing is it's alittle bit better now in twenty twenty
four, some peopleeople are not havingto wait fourteen, fifteen, twenty years,
but there's still a long time frameand an average. And again this
is an average. It's not individualizedto everyone's personal experience with FIBERMILESA or any

(09:13):
other chronic illness for that matter.But we're looking at the average of a
three to five year kind of turnaroundof when a person is starting that journey
of figuring out what's wrong with themand getting that formal diagnosis of bibromle shut.
It reminds me so much of myown journey in a way. But
I don't have biber milesa. I'vebeen diagnosed with autoimmune conditions. And what's

(09:37):
fascinating to me is I call itmedical wack a mole where the symptom could
be quite severe for a fleeting momentof time or a little bit longer of
time. And it's almost like whenmy car rattles and I take it into
the mechanic and I say it's rattling, and they take it for a test
drive and they go, I don'thear a rattle. It was I almost

(09:58):
feel that way about some the symptomsthat pop up, stay, come and
go. Aren't there constantly, theyconsistently show up or something like that.
They can be really frustrating, Iknow from a patient perspective, but also
from a clinician's perspective, because intheir mind they must be checking off hundreds,
if not thousands of things. Itcould be as they're trying to work

(10:20):
their way down to the vinyl diagnosis, right. And this is why self
advocacy as a patient is so imperative, but also self education. So for
myself, there's times where to givea little bit of a backdrop here.
So like since Christmas, I've beensick. This is one of the fun

(10:43):
things about having a chronic illness.It's like when you get sick with something
communicable like a cold or the flu. It lingers in us for a long
time. I contracted RSB and thenI developed an air infection. Then I
developed a UTI and then pneumonia rebountsof pneumonia, and I'm still a little
bit under the weather and to spendyou know, five months when I'm in

(11:05):
those states. Though a lot oftimes when I advocate, because sometimes I'll
come in and I'll present ASMI andI'm like, sure, because I'm used
to being sick and I can functionsort of compared to someone who's never had
pneumonia or RSB. So I'll comein and I'll present, probably to a

(11:26):
provider as having mild to moderate symptoms, but I know it's severe. It's
just one of those things you builda tolerance. I'm like, look,
I don't come to the doctor forthese type of things, Like I try
not to come because I already seeso many doctors. But the other thing
is when i have to go ater or urging care, I'm setting myself
up to be exposed to other illnessestoo, So there is a safety reason

(11:48):
why I don't go unless if Ihave to go. But in those moments
too, there's times because I alsohave a couple of autoimmune conditions that tend
to be silent, and then alot at times, like when I'm sick
with pneumonia or something, my autoimmuneantibodies will flare up for other things and
I'll say, hey, can yourun a panel while I'm here? Because

(12:11):
I am diagnosed with AS which isa gala sing spondylitis and EDS, which
I can never pronounce. El Danalo'ssyndrome Stando syndrome. I'm not as knowledgeable
and you know, articulate as somepeople think I am. But those are
times where I know that those antibiotesare like Ana's will be really flared up.

(12:33):
So I'll ask them just so Ican get on the record and I'll
explain. I said, I'm suchan anomaly. And whenever, especially being
a veteran, and I go toa veteran a fair healthcare system, I'm
like seeing a new doctor every sixmonths. I said, this is just
tangibility because they don't ever catch itin the moment. But when I'm sick
like this, sit all flares upand then I just and then they're like

(12:54):
okay, and I'm like, I'mpaying for it, so it's or my
insurance whatever. So that's one ofthe interesting things too, and physical illnesses,
is that there's just times it doesn'tshow up. But when I have
a whole bunch of stuff going onall at once, and then everything is
like popping off like fireworks, andthen they're figuring out, okay, so
is it this or this or this? I said, it's all of it,

(13:16):
you know, it's all of itin its own way. But yeah,
and that's where it gets convoluted andconfusing for both providers and patients.
And that's why you have to becomeyour own expert, and you have to
understand that their healthcare systems and evenwell known licensed medical professionals like en text

(13:37):
funded health centric agencies like the CDC, there's stuff on fibermalsia is so outdate
and they even admit that, andit's just like, can you updated please,
Like we know this isn't correct andit's misleading because that's what patients and
providers use as a tool guidance,and if it's not up to date,
we are guiding them the wrong path. Right. So that's why it's so

(13:58):
important that you connect with people likethought leaders, those who have a research
background, who have a medical backgroundadvocacy Like I do have a research background,
I do have a lot of things, but I don't have all those
things. I'm not an expert everything. And that's when I reach out to
people within my space who are so. An example would be functional medicine.

(14:22):
I have a good knowledge about it, but definitely and not someone who should
speak on the topic. And thenI pull in those people to speak on
the topic and That's one of thethings is that knowing those people or those
entities to connect with or research.So as a patient, it's still going
to be confusing no matter how muchyou basically self learned, but you'll have

(14:46):
more knowledge. And knowledge is powerbecause it helps you self advocate in these
appointments, whether it's a regular appointmentor you have to go to the emergency
room. That's kind of the powerof the patient is empowering yourself. And
then what I do is put outinformation to help empower other patients, whether
they have fiber mails or some otherchronic condition. And one of the things

(15:09):
that came out of listening right nowwas actually two things came to my mind.
The first one was that as apatient, it's important for us to
notice the patterns, meaning if thisthen that is quite common, I'll use
overdo that day or whatever, thistype of symptom will happen, and I

(15:31):
think that's helpful to take note of. I don't like to dwell on what's
going on with me, but Ifound that my doctors appreciate that when I
notice these patterns, that allows themto be able to get more clear on
what's really going on on my day. To day life, but part of
that day to day that I wishpeople, including medical professionals, would understand,

(15:54):
like the crazy pain scale. Theysay on a zero to ten,
and I'm like, according to who? Because I have a friend a hangnail
as a ten, And yet mostpeople say, Shane, you have amazing
coping skills. And I'm like,I don't know what's the alternative. I
gotta get up, you know,I got to pay the bills. I

(16:14):
pose that question back to the provider. I said, are you asking me
what my pain is on one toten based on what a normal person's experience
is that doesn't live with chronic pain, or are you asking me from a
chronic pain perspective, because by fiveis someone else's eight, nine, ten.
And there's things that I've done,like I've injured myself and or I've

(16:37):
been sick before, I mean likepneumonia or something else. But because of
all my symptoms with my illness,initially I'll be like, oh, I'm
going in a flurro. I actuallytwenty sixteen attendant on my lower arm.
I actually I don't know the word. They'll say tear, but it wasn't

(16:59):
like it was torn. It basicallykind of lifted off the bone, and
I remember I was like, Icouldn't even pick up my puppy. When
I got to that point where Icouldn't pick up my puppy with that arm,
I was like, Oh, somethingelse is going on here. And
it was bothering me for a while, like maybe five weeks, because my
tolerance for pain is so high,and we learn with our chronic medical conditions

(17:22):
to find chronic illness hacks to helpus adapt around those kind of small hills
that crop up on our symptom radar. And so sometimes, and like I
said, I'm not perfect. SometimesI will be like, huh, feels
like I'm gonna go on a flareup. Or I'll be like I'm gonna
watch that for a while, orI'm gonna watch this and see what happens,

(17:45):
because sometimes something obscure will happen,or a symptom will get really wonky
out of nowhere. And then there'sbeen times like immediately within a couple of
days it goes back down to itsnormal pain level for me, not a
person that doesn't live in the kindof pain. So that's one of the
kind of catch all with individuals suchas ourselves is that there's times where we

(18:10):
kind of waited out because we're like, is this a Clara? And then
when we get to a point wherelike, oh this isn't a flare up,
like I better go get this checkedout. It's just always like this
juxtapost of what you're going to doand all this weird intersectionality between what our
ability is to tolerate our symptoms.Is it viral or is it pneumonia?

(18:30):
Or did I hurt myself and mypain levels are so high that my body
really can't recognize I have an injury. So again it goes back to self
education, and I love that youbrought up. I call it SID.
So I call it Symptom Identification Trackerwhere you're tracking your symptoms and I just
tell people, you know what ifyou can commit to thirty days, but

(18:52):
ninety days is better where you justdate it, You write the symptoms you're
having, the level, and thenlike anything you did with then let's say
twelve to seventy two hours before.So great example for me is irritable bol
syndrome. I had that, andthere are certain things I know if I
have it, my bowels are goingto be airful. So I know this,

(19:15):
But when I first started that journeyand Dinny, it was like everything.
And now I know, and there'sthings that I know are going to
cause my IBS to flare up,and I'm treating myself. I did that
recently. My cousin is moving toSan Diego. So we had dinner and
stuff, and I had stuff thatwas delicious, but my IBS was like,
oh no, and the flirt upand I lost the whole day and

(19:37):
a half. But I knew itwas going to happen, and I was
prepared where years ago I didn't knowbecause I wasn't tracking or creating a baseline
figuring out what my baseline was.I think that's important to know about yourself
because oftentimes I get a lot ofstrange symptoms that come and go, and
some of them could come and go, as I mentioned earlier, in a

(19:57):
matter of minutes, and I usedto think about, oh my goodness,
I could be having something totally unrelatedlike a heart attack and being ignoring some
of the symptoms just because oh,well, you know, yeah, it's
just another day of more fatigue thanyesterday or whatever. And I think it's

(20:17):
important to at least have some ofthose symptoms that are the most common for
you. So you know when thesymptoms outside of that box, or could
be outside of that box and reallyseek help. That's a I've always thought
about that. Oh Okay, whenwould I know when it's really time?
I don't want to wait through thepain so long that then it becomes an

(20:41):
absolute emergency. Well, and that'svery difficult, And you brought up heart
attack. So January eighteenth of twentytwenty three, I had heart attack.
And I don't fit the mold ofwho is identified as typically having a heart
attack because I'm younger. I meta healthy way. I am very conscious

(21:02):
of what I put in my body. I try to eat organic, non
GMO, preservative free, all thatkind of stuff. You know, kind
of nerdy that way. But becauseof having fibromalgia, and this will probably
parlay into another point, is wedevelop a lot of other medical conditions as
a result. And this is commonwith any chronic illness. So one common

(21:22):
condition that people with fibromalgia may developis Reynolds or Raynalds syndrome. And it's
this condition that affects your circulatory systemand it causes your blood vessels and arteries
to span some twitch or contract,including the ones in your heart, and
lo and behold, I was havingthese symptoms that were very familiar, kind

(21:45):
of you know familiar like whoa,my fatigue is really bad this morning,
and oh movie, I mean literally, And I was sitting there playing it
out in my head conce opinion likeokay, is this like a fibro thing
or something else going on? Andit wasn't. You know, the minute
I started feeling nauseated and then Igot sick, I was like, oh
yeah, this isn't it. Thisis completely different response compared to things that

(22:11):
are specific to five miles shop.And so I went to the emergency room
and lo and behold, they renounsyndrum caused the ordering my heart to spasm,
which constricted and that constricts the bloodflow and I had a heart attack.
But yeah, it's one of those. At first, I was like,
oh boy, I felt like Iwas trying to walk through sludge with

(22:32):
cement blocks on my feet. ButI felt that before and five romles of
play ups, so it's kind oflike again, that's why it's like,
you got to be an educated patient, but you also got to be like
hmm, this ain't right. Andit's always, you know, when in
doubt, get checked out. Andthat's what I did. And that's when
they were like, oh, youhad a heart attack. And I was
like, well, that's fantastic,and uh, I'm you know, obviously

(22:56):
being facetious, but I was kindof like, let's add one worth to
the list where I don't even meetwhat is considered the typical criteria that have
a heart attack. So yeah,and that's kind of also the danger of
having invisible illnesses and all these multiplethings going on inside your body and doctor

(23:18):
they have a hard time too.And again it goes back to being as
self educated as you can on howyour body is for you and how it
responds to things, but also understandingwhat your medical condition is, having a
good understanding on that. And sowhen you know something is really not right,

(23:40):
you're in a place where you cansay, I know this isn't right,
this isn't typical, there's something wrong. And that's where that self empowerment,
self advocacy piece comes in, becauseto get there, you can have
to go through the gamut of learningand connecting with people and entities. They're
going to help you be able todo that advocacy and figure out, you

(24:02):
know, is this something of anorm or is this nothing on? That's
a fun game. Guess what symptomit is today, Guess what issue it
is today. It's a fun game. And I'm sure you know you can
relate in your listeners. That's justkind of the life of chronic illnesses,
especially those are invisible. Oh absolutely. And with that, we need to

(24:26):
take a quick commercial break and whenwe come back, we'll talk more with
Crystal about invisible illnesses. And there'sa couple other topics I want to bring
up to because to everyone, Sostay tuned. We'll be right back.
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(26:07):
other is mine. Welcome Mile inmy shoes, Welcome all my shoes.
Well before you abused great size andaccused, Welcome Mile in my shoes.
Welcome back everyone to the Autoimune Hour. I'm sharing Sailor from Sharonsailor dot com

(26:30):
and I'm here with the amazing CrystalKent. She's a patient advocate, She's
a fibromyalgia warrior, as I liketo say, as well as one of
those who digs deep into all theresearch. And she is great at seeing
patterns and I love that she hassuch an open mind and the question what
if is really powerful. When Italk to her, I just noticed that
she's always asking, well, whatif? And I love that about her.

(26:55):
And by the way, May isa fiber Miles awareness month, and
so that's one of the reasons Isaid, hey, Crystal, come back
on. We've been talking about that. We've been talking about symptoms and how
I would say a large number ofpeople within visible illness, whether they're labeled
autoimmune or not, have amazing skills, coping skills, pain threshold skills,

(27:17):
other things like that that are wonderfulbecause they keep us moving and then they
have the darker side that they cankeep us from maybe seeking treatment quick enough
or being taken seriously any number ofthings. So that was fantastic. I
will have Crystal back to dive deeperinto that, but I want to talk
about some things about when someone says, okay, I really like the idea

(27:44):
Crystal's talking about the patient advocacy workthat she does. What are some tips
you have for somebody who says,I really want to take a stand here.
Advocacy is such a broad stroke.There's so many different things within both
awareness and advocacy, and a lotof people will say awareness is not actionable,

(28:07):
but that's not true, and Ican give a couple examples. I
don't agree with that. I thinkit is a stepping stone for advocacy,
and you need awareness in order foradvocacy to come to fruition. So the
first thing is figuring out a lotof people come to me and say I
want to start advocating, and I'mlike, okay, well, what are

(28:27):
you interested in? It is sucha huge space. There's room for everybody
and every little niche you could thinkof. We need someone right. A
good example of that would be menliving with invisible illnesses fiber malsion in particular,
or veterans. And that's a greatspace to be in because men as

(28:51):
a whole, when it comes toquite a few invisible illnesses like loops,
MSS, fibermiemalgia underrepresented. And Iknow for myself I try to promote awareness
as much as possible, But Idon't speak on behalf of men per se.
But what I do is I openmy space to them and share it

(29:12):
for them to share their stories.So the first thing I would say is
what is your niche? What areyou interested in? And you would be
surprised some things would not seem tobe advocacy. But I'm like, it
can be whatever you want it tobe. So I have a lot of
people that I know that are veryartistic, and I'm all about the arts.

(29:34):
I'm all about force therapy, I'mall about dog therapy and burnolin that
follows me. They're like, yes, we know Crystal, she loves dogs.
And I incorporate my dogs and thoseawareness and advocacy and initiatives and bend
no awareness box with me or veteranspecific events. And I will say art
therapy, art is a great thing. I said. They use art therapy

(29:55):
being different sectors of medical care,where like when patients have cancer or they're
getting chemo, or with children,and I'm like, art therapy is something
that is so needed. And I'veseen programs like at the VA where they've
had before COVID, they would havelike art therapy groups, and I was
like, why not then ask theveterans if they can have their art displayed

(30:22):
on the walls of the VA facilities. What a great artwork, and then
you save money on the administrative sideand not have to buy artwork because you
had veterans who made artwork on yourwalls. And then that's fiscally responsible and
believe or not that is a formof advocacy. It's kind of soft advocacy.
But that's the one thing. Lookingat advocacy, you could take whatever

(30:45):
you're passionate about. I say,what are your skill sets? What are
you passionate about outside of being apatient and trying to fix the system,
And let's look at it strategically andsee all the little layers that you can
start with. You know, youcould write, if you are a creative
writer, you could write a poetrybook about living with a chronic illness and

(31:10):
that can become a staple for somepeople like family members, friends, strangers,
or even colleagues or medical providers tohave a better understanding. So a
lot of people think advocacy. Yes, I do legislative advocacy. I do
be a policy advocacy. I dosystem to advocacy health care. But I
do a lot of you know thebig ones, right, But there's so
many other areas of advocacy that needto be filmed and whatever you're passionate about.

(31:37):
I know people I love dogs.A lot of people don't know I'm
a licensed animal psychologist. I ama certified dog trainer in can. I
behavior modification specialist, and so Ilove dogs. And one of the things
is dogs are incorporated in my awarenessinitiatives, in my advocacy initiatives because most
people they like animalsts. It's alsoa way to get fiber miles or other

(32:01):
issues impacting the fiber miles community orveteran community on people's radars who never would
have paid attention. They just solike, oh, cute puppy dogs,
and then they're like, oh,I just learned something, and it creates
a trickle down effect. So that'swhy I said, be creative. What
are your skill sets, what doyou like to do, and what can
you do? Not everybody can takeon those what we call the big guns,

(32:24):
you know, like the big andthat's okay, you don't need to,
but you never know what's going toturn out. The show started ten
years ago at twenty fourteen, andhere we are now with almost five hundred
episodes. And I just started afew shows to talk and learn more about

(32:45):
my condition and found out that therewas a big need and interest in it.
So like, oh interesting, justlike you said, oh cute puppy
So you never know. Now myfriends call it my irrational passion, and
I took that as a lovely badgeof honor. It's like here she asked,
keep on chugging ten years and fivehundred shows into it, So I

(33:07):
think it's fantastic. It doesn't haveto be that big goal out there.
My goal was not to do thisfor ten years. My goal was not
to do it for continual like fivehundred plus episodes. I intend to keep
doing it because I love doing itnow and I get nice information back,
like thank you that was helpful,thank you for bringing Crystal on the show.

(33:29):
That was helpful, thank you forbringing Sarah on the show. That
was helpful. And that's nice toknow that what you do is helpful and
what your irrational passion was has becomea platform of empowerment and showcasing advocates and
giving people the information even teaching themlike how they can be in the space.

(33:50):
And I'm telling you, I'm ahuge, huge supporter of optimizing social
media for awareness and advocacy. Huge, And some people they don't necessarily take
it seriously until they see the momentumI have built on certain things, or
getting legislative bills across you know theline. And I'm not saying I'm the

(34:10):
driving force behind all of them.Sometimes it's like across collaboration. Other times,
yes, it's myself and my team. But that's the other thing too,
is you can actually do so muchawareness and so much advocacy from the
comfort of you know your fed,even if you're not feeling well, by

(34:30):
utilizing social media, by sharing yourstory, by sharing some of the systemic
barriers you can tend with, bysharing ideas to alleviate some of those barriers,
and cultivating that conversation, and you'dbe surprised how many people will pay
attention. A lot will who donot have the illness or may not understand

(34:54):
what's going on. But I meanover the years, Oh, for me,
I spent ten years. I startedblogging under the fiber mileage of pain
chronicles in twenty fourteen, and thenthat parlayed into awareness pages on social media
platforms. And it will be whatyears it six years in November November eleventh,

(35:14):
which is veterans staying that I upstarted vettering voices were five miles young,
more advocacy and veteran in military specificsupports and resources. But ten years
ago, when I was just bloggingunder this penhandle name. I had no
idea, despite the fact that Ihad already decades of advocacy experience because I

(35:36):
worked in mental health, I workedin the intellectual disability fields human services,
and I just would if you wouldhave asked me ten years ago, would
I then where I am now?I would just said probably not from here
I am. So that's the wholething is, even if it doesn't make
sense to others, if it makessense to you, and a lot of

(35:59):
ways, were compelled to do thesethings, and you would be surprised when
you look back over your journey ofpromoting awareness and advocacy in your own way,
how far you have come. Andthat is the moral of the story.
You want to start an advocacy orpromoting awareness, figure out what areas

(36:19):
you want to focus on, figureout creative ways and use your passion to
engage in awareness in advocacy. Andit doesn't have to be leaps and balance.
It can be just a couple ofsteps at a time. It can
be amazing steps at a time.I have a friend who's enjoyed doing art,
and not art therapy, but justart sort of doodling while they were

(36:40):
in certain situations care situations, andthen they started making items out of it,
you know, like getting it printedonto tope bags and things like that.
They started a little side hustle.I even find that advocacy because people
are like, oh, here's someonewho like on the chart. Probably a

(37:02):
lot of people be going, wait, why are you doing that? Or
you shouldn't be doing that or somethinglike that, And I just think it's
wonderful that they're able to express themselvesthat way. So it doesn't have to
be, as you said, Ididn't start this to be world changing either,
but I'm glad it's been well receivedand that people are enjoying the information
we can bring. And all thoselittle things have a huge impact on the

(37:28):
road. So it's like someone who'sartistic making bags. There's the story behind
it. This is the reason whyI'm making the bags, right, So
there's that and then people know that, oh wow, right. And so
I know so many people who arecreated in my community, and so many
other playing music, write songs,painting strong. I'm not really a painter.

(37:51):
I mean abstract abstract would be inmy area of expertise if I was
painting, But like words, I'mreally good with the written word. And
I have had published creative writings orcreative writings and short stories published in the
past. But I see these peoplewith so many artistic skills and they create
these items like little paintings or jewelryor just whatnot, have you, and

(38:15):
then they sell it and they keepsome of the proceeds. But then like
each month the items they sell isdesignated for a cause or nonprofit, and
I'm like, so that's something toothat maybe you don't want to engage in
like serious, you know, legislativeadvocacy. But if you have these talents
and you're able to monetize them foryourself and then get back to a community,

(38:40):
then you're helping. Every little pennyhelps that organizations or that advocacy initiatives,
And so that makes you part ofthe process, that makes you part
of the team, that makes youpart of the building blocks that get us
from A to Z, because it'sa long process with advocacy. And that's
the other thing is that whatever youcan tribute is always enough, and it's

(39:00):
always more than enough. So dowhatever feels right for you in your own,
fun, creative way. I tryto be fun and creative because when
I do can be very boring,So to some people, I'd love it.
I love solving problems and breaking allthe systemic pieces down and going okay,
so if this plan doesn't work,let's come up with a plan abcd

(39:22):
it. I always have a varietyof plans in place for one issue,
because if it doesn't work that way, it will probably work on it.
So, yes, advocacy can beconfusing, it can be daunting, but
it doesn't have to be. Pickout what you want to do and make
it your own and don't care whatanyone has to say, because you'll be

(39:45):
successful when you're passionate with the typeof advocacy where you are involved in.
I think the passion really comes throughand that's the driving force. I was
talking to a young woman today andshe was talking about something that you I
was wanting to do, and youcould hear in her voice, even before
she has started her what somebody mightlabel true advocacy journey, you could hear

(40:08):
in her voice that it was herwhole demeanor changed, her voice pattern change
when she talked about this one thingthat she feels she wants the world to
know about and she thinks it's importantthat people are aware of and I was
just like, you go, you'renot alone. You go, this is
great. You could hear passion inpeople's voice when they're talking about what they

(40:30):
do, when what they love,you can it's contagious to me. When
you're around people like that that arepassionate about what they do, it just
seems to rub off on everybody aroundthem. It's an exchange of energy.
So for me, I love itin so many ways. I love the
challenges. I mean, I don'tlike the challenges, but I love the

(40:51):
challenges because they teach me something orthey make me think outside of the box
and be innovative. I love itbecause of the outcomes that I see,
and it's not right away. That'sespecially when you're dealing with policy advocacy.
Legislative advocacy. You can have abill that's signed in to loom, but

(41:15):
when it comes into effect and thenwhen it really is full blown in effect,
there's some time frame there. Butthe biggest thing at the end of
the day for me is it getsme every single time though too, because
you know, people thank me allthe time and it's such a weird space
and I'm like, why are youthinking me? Thank you for being here?

(41:36):
Thanks for reading my post, Thanksfor calling your congressional representative, Thanks
for supporting me. And it's justthe weird space. I struggle with impostor
syndem as well because of this.I just try to be me, and
you know, people can take meor leave me, it doesn't matter.
But what I can say is,at the end of the day, or

(41:58):
even end of the year, orat the end of the day game,
there will be that one person,but there'll be more when you see what
you do becomes transformative for someone elsethat at the end of the day.
No words, There is no words. There's no words to describe, like

(42:19):
the beautiful graciousness of someone being vulnerableand you've assisted them or supporting them some
way, and they brought you intothat space and you see a shift in
them and it's so indescribable. Butit's so gloriously beautiful to see those shifts
and people simply because you're sharing yourown story or you're sharing like I share.

(42:46):
I give updates every so often,not as often as I should.
Of the advocacy initiatives, I justput out one thus far in twenty twenty
four. What Utter Voices has beenworking on vetterent voices were bibra all that
stuff. It sounds really kind ofnerdy and awesome and like whoa, that's
like big time. Have you hidden? And at the end of the day,

(43:06):
it's like, yeah, I wantthese bills passed. Yeah I want
this policy changed or meant it.But the most important thing is the person.
And that's why I do it,because if you're not really focusing on
the outcomes and the impact as somepeople, For me, why are you
doing it? Like why are youthere? And like I said, there's

(43:28):
no way. I'm a very articulate, descriptive person. I cannot describe what
it's like to be able to observeand witness someone you've supported, or even
someone who has followed me or someonethat has decided to get into some awareness
and advocacy and just see that shit. And I'm not saying for the better,
but it's like the light is differentwith that person. It's there's no

(43:52):
vote. So at the end ofthe day, it's like, oh,
okay, yeah, that legislative billpass that I was supporting or called two
hundred Congress members, and then Isee this person. It's one person whose
mentality has changed, who is thenbrave and shared their raw story and vulnerable,

(44:12):
and then I see other people respondingto them that, at the end
of the day, is the mostvaluable, beautiful thing to be a part
of, to be a part of. I'm not of it, but they
allowed me the grace to open upto me, or to follow me,
or to reach out to me,and then I have the privilege of being

(44:37):
in their space for just a littlebit, being able to witness that.
And that's that's why, because it'samazing. I agree with you. The
feeling when someone says something about,you know, thank you for that show
it really helped me, or itchanged the way I view something, or
something like that, I'm well,thank you. It's it's indescribable when the

(44:59):
people or saying and then you goto yourself, oh well, I'm glad
I was able to be part ofa change, part of an awareness of
something. I'm driven by curiosity inmy life. I just am so curious.
So I love to put things togetherwhere oh, well, if you

(45:20):
did this and you did that,why haven't people done that before, because
it's obvious you would get something,you know, this other thing over here,
And I just think that's fantastic,and I agree with you that it's
indescribable when you realize that just evenwhat you might consider one small thing was
able to change someone's life in areally positive way. It's really wonderful to

(45:44):
know that they are going to beable to have a change of their life
that's important to them and then ableto walk in a different way. And
that's really important. And as mostpeople know, Crystal and I can talk
forever. We're down to the lastfew minutes. You brought up one comment
a little bit in passing that I'dlike to circle back on because I think

(46:05):
it's often misunderstood, and that wasabout men. I often hear fibro and
or autoimmune being a woman's disease,and I know that's not true, and
I feel like men should be betterrepresented in this because they are different,
They're going to have different experiences anddifferent life experiences with it. Can you

(46:25):
talk a little bit about that fibroand autoimmune aren't women's diseases well, specifically
like with fybermlgia, we often readhere see on social media, even though
it's well intended, people are promotingawareness or sharing information, but it's misdirected
information where it's a woman's illness.That's just statistically not true. There's actually

(46:50):
been research done that's published, youknow, on the CDC website, is
published through the National Institutes of Healthlooking at the problems of men suffering with
fibromugia within the community as a whole, and a couple of research studies found
that they were peer reviewed and whatnot, found that approxuately forty percent of fiber

(47:10):
maugion sufferers are men, and oneof the researchers, off the top of
my head, I can't recall hisname, but him and his team also
hypothesized that they thought it might evenbe a little bit higher due to men
under reporting or not reporting the diagnosisor being misdiagnosed with something else, and
they hypothesized that it could be closerto fifty percent. Until more specific research

(47:35):
is done on that, all Ican say is about forty percent. But
what I see is this constant narrativein medical settings, factors, offices,
on social media that it's a woman'sillness. And then I also see like
fellow advocates and awareness pages and bloggersperpetuating this falsehood. And then what happens
is we alien need a huge,huge portion of the community, and they're

(48:00):
not being represented. And so myselfinterestingly, when I'm just in a fibro
milsia specific space, yes there's alot of women there. But then if
I'm in the veterans space, guesswhat, I'm a minority, you know,
because there's only about two million womenveterans in the United States as a
whole. And when I'm looking atthe community of fiberminosia and looking at military

(48:23):
DoD contractors and veterans, there's waymore men in those spaces, and you
know, that's more of a populationratio thing. But what I do is,
yes, I will share the informationabout how it afflicts men, the
research, the percentage, but Ialso open my space up so that men

(48:46):
can can speak their truth, sharetheir story, discuss the inequities they contend
with being a man living with fibermiyolsia or another invisible illness. Another thing
is is that that we see aboutthirty percent of people with lupis are also
diagnosed with fiber malia. So I'veopened my platforms they have both men and

(49:07):
women with lupus that are diagnosed withfibermleshon and that's the whole thing about representation.
It's important to share the correct informationso that everybody within that particular community
is being recognized. But representation iswhere you're including them in those conversations.

(49:29):
And there's not enough that going on, not just with the fiber miles In
community, but a lot of communities. And so my whole thing is,
no, I share. I wantyou to share your story. I want
you to share your experience. Weneed to really break these misnom or stigmas
and stereotypes are absolutely not true andthe only way we can do that is

(49:50):
to put a face to it.And so that's that's when I do a
lot of interviews or I've created littlesmall like clips of informational video that are
representative. And one of the thingswith fibro Milesha that have done over the
years is that every so often I'llput together kind of like a teen video,
whether it's sharing information about fiber maleshawor sharing our experience. And one

(50:13):
of the things is I always haveforty percent of the participants in any particular
awareness video are men. I alsolyhave people they say fiber milesha and identified
respect or its runs in your families. So I include people that have multiple
generations of individuals in their family withfibromalsia. Research that's on children, they're

(50:37):
not really out there. We're seeingmore about juvenile fibro malsia, but not
the prevalence amongst children and teens andyoung adults. But what research is out
there. I try to represent themas well in some of the awareness videos
I've done in the past where I'vehad someone or two someone's under the age
of eighteen who have participated in thevideos. We're not just talking about the

(51:00):
numbers. You're seeing the numbers,and you're seeing, you know, the
representation of oh, forty to fortyfive percent of the participants on this project
or in this awareness video, we'rein fact men. And so that is
the other thing is you need tomake sure that we are putting out correct

(51:21):
information because while we meanwhile we couldbe inadvertently unknowingly creating more harm by perpetuating
false narratives about who has fibermalgia orany other chronic illness for that matter.
And we have to be cognizant,and we have to share platforms with everybody

(51:42):
within our community. So yes,put out information, create photomemes, write
a blog, do a video,write an article, but why not invite
a guest blogger on your site whois representatives of a group within your group,
or do a live video chat orpre recording or podcast when that would

(52:06):
have you. So yes, I'mreally really huge on representation, not just
with men and you know, peopleof color, representing people from other countries,
Native American or First Nation people.Because I am a descendant of Sue
and Lakota, and while I don'tever claim it, I know about some

(52:28):
of their inequities and barriers safe based, so I try to open my platforms
as much as possible to them aswell. And because at the end of
the day, it's not about me, it's about our community. So in
order for to be about the community, my space is open for anyone in
the community to share it with meat any point they feel comfortable to.

(52:49):
That's what I love about your passionfor all of this and your projects that
you have. I wanted to We'rejust out of time, but share with
us where we can find your planpatforms and I like the fibromilegia pain chronicles
on YouTube things like that. Sharewith us where we can find some of
this great information you and your teamput out. Sure. So the one

(53:10):
stap strap is I like to callit, or one place hub is my
website www dot Veteran Voices or fiveand Milesia and you can find social media
links there, but you can findme under my penhandle name the fiber MILESI
paining chronicles and YouTube, Instagram threads, Facebook, I'm on TikTok keeping it

(53:35):
really Crystal, and then Veteran Voicesfor Fibermalsia the website I'm on Facebook and
YouTube with that as well. Andthere's some intersectionality between the two. So
if you're following the fiber Milsha painingchronicles on one Hub, you'll see some
veteran stuff, and if you're followingme at Veteran Voices for fiber Milesha,
let's say on Facebook, you're gonnasee some stuff from the fiber Malsia pain

(53:58):
chronicles. So pick and you'll findme for pick both. Pick both to
show your support with a follow andthe like and a clap and a heart
here and there, and thank youso much, Crystal, thank you for
sharing the time. It's always goodto see you and to hear all of
your wisdom and share how important itis to advocate in our own way and

(54:20):
to choose your space and make ityours, just like you have with the
veterans. So everyone that's Crystal Kentto check her it out because she has
amazing information. And I love alot of the short videos she did a
while ago, just about a outof time. But I want to talk
about, are the ones that youdid, were the real short ones with

(54:40):
the people talking about invisible illness?Still available? Yeah, there are my
social media platforms and you too,and so yeah, those are available.
There's fiber Mals Awareness because it matters. There's chronic illness awareness because it matters,
Chronic pain awareness because it matters.There's the Team five informational series,
the Team five Roh Fun Awareness thatund'sof fun videos. So they're they're on

(55:04):
YouTube and Facebook and some on Instagramand a couple on TikTok. I manage
all the sites on my own,so when I get to it, I
get to it. But it's there, and once it's there, it's there
forever. So and the Pets videoand the Paus for Fibro video as well
came out this year, so wehad a bunch of people with Fibermalsia sent
me their photos of their pets thatsupport them, and I put little video

(55:29):
clips and we had cats, dogs, birds, horses. So pause for
five ro and pets for five rosout there now too fantastic, So everyone
be sure and support Crystal and Oliverteam anyway you can and join me next
week for another brand new episode.Enjoy the information provided on the auto Immune

(55:51):
Now We're Understanding Autoimmune and Life InterruptedRadio, including the websites Understanding Autoimmune dot
com and Life Interrupted Radio dot Complus social media is for educational purposes.
Own which you read, hear,and see on the auto Immune Hour.
Understanding Autoimmune and Life Interrupted Radio andits websites and other media outlets is based
on experience only. The information shouldnever be used for any legal, diagnostic
or treatment purposes.

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