May 12, 2025 • 30 mins
In this episode, we are talking about auto-immune disease. Autoimmune disease occurs when the immune system is overactive and attacks and damages the body's own tissues. May 9th is Autoimmune Arthritis Day, and it is also ME/CFS and Fibromyalgia International Awareness Day (May 12). ME stands for myologic encephalomyelitis, formerly known as chronic fatigue syndrome (CFS). It is a chronic, complex, neuroimmune disease that affects the quality of life of its' patients. Fibromyalgia is a chronic disorder characterized by pain stiffness and tenderness in the muscles of the neck shoulders back hips arms and legs, and there are many other symptoms as well. 80 percent of autoimmune diseases affect women.
Our expert today is Melissa Marquis, she is a nurse, author, and emergency management specialist. She has many years of experience in nursing, so when she started to not feel like herself, she started on a very long journey to diagnosis of her symptoms. She wrote a book about her experiences called, Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease. We talked about her long diagnosis that took 13 years. She emphasizes the importance of self-advocacy and support systems. Melissa's book aims to empower patients and families by providing practical advice and strategies. She talks about her daily struggles and how CT Paid Leave may be a great resource for her to use, as her disease is progressing. She says we should all be grateful for programs like these that helps patients and their caregivers.
You can buy Melissa Marqui's book online at Amazon: Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease: Marquis MS RN, Melissa: 9798891129184: Amazon.com: Books
For more information or to apply for benefits please go to: ctpaidleave.org
https://ctpaidleave.org/s/?language=en_US
https://www.facebook.com/CTPaidLeave
https://www.instagram.com/ctpaidleave/
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy Barrow (00:01):
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
May 9 is autoimmune arthritisday, and it is also me, CFS and
fibromyalgia internationalAwareness Day on May 12, and me
stands for myalgic encephalitis,formerly known as chronic
(00:42):
fatigue syndrome, known as CFS.
It's a chronic complex neuroimmune disease that affects the
quality of life of its patients.
And Fibromyalgia is a chronicdisorder characterized by pain
and stiffness and tenderness inthe muscles of the neck,
shoulders, back, hip, arms andlegs, and there are many other
symptoms as well. 80% ofautoimmune diseases affect
(01:04):
women. Melissa Marquis is anurse, author and emergency
management specialist. She hasmany years of experience in
nursing, so when she started notto feel quite like herself, she
started on a very long journeyto diagnosis of her symptoms,
and she wrote a book about herexperiences called Invisible, a
nurse turned patients resourceto living well with autoimmune
(01:26):
disease and Melissa, welcome tothe paid leave podcast. So happy
to have you here morning.
Melissa Marqu (01:31):
Nancy, thank you.
Nancy Barrow (01:31):
Well on Zoom, you look great. But how are you
feeling today Melissa?
Melissa Marquis (01:36):
Well I appreciate that. You know, today
is actually a pretty decent day,so I will take any decent day
over any bad day of the week. Soyeah, it's the last several
months have been quite difficultfor me. A lot of different
problems creeping up and newdiagnosed testing. But as I
(01:57):
said, you know, you got to takethe good days when you get them!
Nancy Barrow (01:59):
So why did you become a nurse?
Melissa Marquis (02:03):
From an early age as a child, I remember my
best friend and I, we livedacross the street from each
other, and we both wanted to bedoctors, probably from the age
of seven on, and we used to playwe had microscope kits, and we'd
play doctor, and we said, we'regoing to find a cure for cancer.
And so that kind of just stuckwith me all the way through
(02:24):
school. I was really engaged inthe sciences in school, you
know, really had an affinitytowards science and math and,
you know, all things body wise,you know, it's just really
intriguing. And so as I startedgetting ready to start looking
at colleges and really what Iwanted to do, you know, I
(02:44):
obviously had to make adecision, you know, do I go pre
med? Do I stick to a differentdiscipline within healthcare? So
I was looking at pre med. And mysenior year of high school, I
ended up with a knee injury fromyears of sports playing, and
needed to have surgery. Hadsurgery. Ended up having a post
op DVT, which is a blood clot inyour one of your deep veins. And
(03:09):
so I ended up in the hospitalright as applications were due
for colleges and all of this.
And so it just, it really kindof threw me a bit at that time.
And so I ended up applying foradmission to two different
physician assistant programs.
When I was in the hospital, Ihad already put the applications
(03:30):
in, and of course, the very highnumber of applicants, and so
they only accepted, like maybe20 students, 25 students per
year, so I didn't get into theschools that I had applied to.
And so sort of just stuck here.
It is end of February of mysenior year, and I have no
school to go to, you know, Ididn't have a backup that I was
interested in. And so I thought,well, shoot, and now I don't
(03:51):
know what to do with my life,yeah, and I didn't want to,
like, take a year off, so I justkind of took that opportunity in
as I was in the hospital, I justwatched all the staff just kind
of paying attention to what theydo for work. And I was sort of
drawn to nursing a little bit,and just said, Well, you know
what? I can easily do that, andthen I can always advance my
(04:12):
career beyond that, if I wantedto become a nurse practitioner
or get a doctorate. You knowthat field is really endless for
nursing. So that's the direction
Nancy Barrow (04:21):
It served you well for what you had to deal with.
I chose.
So why don't you tell me yourstory, Melissa, when did you
think that something was wrongwith you and you started your
own journey to figure out whatwas wrong with you and what were
your symptoms?
Melissa Marquis (04:34):
Yes, I was 30 years old then, so, you know,
had a fair amount of experienceand life lived to that point in
healthy all the way up to then,essentially overnight, I just
developed these new randomvascular type of symptoms with
some swelling in my hands and myfeet. I had Raynaud's
(04:56):
phenomenon, which is a conditionwhere your. Vessels in your
extremities, particularly yourhands, your feet. Sometimes it
can affect parts of your face aswell, where your blood vessels
constrict, and it reduces bloodflow, and it's usually in
response to, like cold stress,some type of trauma. And I had
experienced none of that, butyet here I am having these
(05:17):
symptoms on my hands and myfeet, and then I had some
additional skin related nodulesand painful swelling of my toes
and just very out of character.
So I sought care very quickly,and based on my own medical
information and knowledge tothat point, and you know,
different providers that I'veworked with over the years, I
asked a couple of my colleagueswhat they thought, and they
(05:40):
said, I think that might be arheumatological issue. And I
agreed. And so that's where Ifirst went. I just I asked for a
couple of referrals from somecolleagues, and started my
journey down that road andtrying to get to the bottom of
it. But yet, the first doctorsthat I saw essentially told me
that what I was experiencing atthe time, the symptoms that I
(06:02):
presented with, were in my feet,primarily, and they said, Oh,
well, it's just like frostbite,you know. Just keep your feet
warm and dry, watch to see ifanything else happens. But that
was basically it. And so I'mlike, but it's July, right?
Frostbite in July, like it justdidn't make sense to me. And I
thought that's and, you know,they did a very thorough exam.
(06:25):
They took loads and loads ofblood, and nothing really popped
up at that point. So it was veryearly. Whatever was causing it
was very, very early in itsprocess, so there wasn't much to
diagnose then. But I continued,and I sought out another
rheumatologist, and I stayedwith that doctor for good 10
years or so, seeing her aboutevery two to three months, she'd
(06:47):
take up to like 1314, vials ofblood every two months, doing
the full autoimmune diseasepanel on me, every test that
they know to man for autoimmunedisease, trying to figure out
what my symptoms are pointingtowards. And over that period of
time, I had developed more andmore symptoms outside of just
the Raynaud's and what was knownon the feet is called
(07:07):
chillblains. So aside from thosetwo issues, I started developing
joint pain, more skin relatedchanges. So my fingers became
tight, as I said. I had someswelling in my hands, you know,
just a number of other thingsthat just seemed, again, really
out of character. I couldn'tfigure out how they related to
one another, if they related toone another, and neither could
(07:28):
by doctors to that point. And soit probably wasn't until around
2017 when I started experiencingsome internal symptoms. So not
just external based symptoms andpain, but I was having some
difficulty with swallowing andreflux, and my esophagus would
spasm whenever I swallowed. Itwas very painful, and that,
(07:52):
again, was all very new to me. Idecided to change doctors at
that point to try to figure outwhat's what's going on. Like,
spend 10 years, we should havesomething now and, yeah, solid,
yeah, whatever this is, is aninternal now. It's a systemic
issue. So we had been talkingabout the idea of a diagnosis
called scleroderma, and it wassomething that had been on my
(08:15):
mind pretty much from almost dayone, once, once I had the ray
nodes and the tightness on thefingers, I knew exactly what it
was, but it just took a longtime to get docs to agree and
start, you know, reallyexploring that for a diagnosis
for me. So I, yet again, changeddoctors and found a physician
that was wonderful. She alsoagreed with me. She says, Yeah,
(08:38):
I think you do have symptoms ofscleroderma, but it's not fully
presented yet, so can't reallyofficially diagnose you, but she
said, I think you should getsome testing. Let's look at your
esophagus and your swallowing,and let's do all these different
tests, which I did. And then sherecommended going down to Yale,
which had a new sclerodermaprogram that was just starting
in 2018 and so ultimately,that's where I ended up getting
(09:02):
diagnosed with scleroderma, youknow, shortly after that, and
you know, have since continuedmy care there. I've got a lot, a
lot of doctors now. I've got alot of problems, unfortunately,
and it's continued. The diseasescontinue to progress. It's
affecting my heart, mostrecently, my lungs, my GI tract,
so there's, there's a lot goingon, and there's, unfortunately,
(09:23):
with many autoimmune disease,there's not a ton available for
treatment. It's kind of hit ormiss sometimes.
Nancy Barrow (09:32):
And some of the treatments can be worse than the
disease.
Melissa Marquis (09:35):
Yeah, for sure and some of these were. I had a
meeting last night, actually,with two of my physicians, based
on some recent tests that I'vehad, and trying to figure out,
at what point do I startimmunosuppression therapy, which
is kind of a mainstay treatmentfor autoimmune disease, because
at its core, autoimmune disease,no matter which type it is, is
(09:58):
an overactive. Immune system.
And so your body gets triggeredby some exposure to something,
whether it's a virus, aninfection, some sort of a
chemical exposure, or otherenvironmental exposure. And it
kind of can almost, sort of liketurn on a gene. It's almost like
a light switch turns on in yourbody and says, Oh, hey, your
cells now I'll look foreign. Solet's just go attack you. And so
(10:21):
the whole goal withimmunosuppressant therapy is to
reduce that overactive burdenthat your body has and try to
calm it down, and then hopefullyreduce the inflammation.
Nancy Barrow (10:34):
What was the most frustrating part of your journey
for you?
Melissa Marquis (10:39):
Not being believed. You know, I spent
many, many years, as I said, Ispent 10 years almost, with one
doctor. She knew I was a nurse.
She knew, you know, I asked herall the right questions all the
time, and I got dismissed a lot.
You know, she would answer someof the questions, talk around
them, sometimes just blatantlynot answer. You know, I can
(10:59):
understand that if you don'tknow. I mean, rheumatology is a
very difficult field to be inbecause there's often a lot of
unknowns. I'm just the type ofperson that I would much rather
appreciate you telling me,Listen, I don't know yet, or we
don't know yet. As a field, youknow, research hasn't advanced
that far. Tell me that, ratherthan just not answering the
questions, right? So I had a lotof that unfortunately, and I had
(11:20):
seen a physician at one pointjust before I went to Yale to
the Scleroderma program, I choseto go up to Boston, at one of
their major universities, totheir scleroderma program. And
so I brought all of my documentsthere, gave him everything, all
the tests and studies that havebeen up to done up to that date,
and he essentially looked at it,and he says, Okay, well, you're
(11:41):
obviously very detailed andorganized, and, you know, very
thorough, and, you know, puttingall of your stuff together, but
you're leading me down the pathof diagnosis that you want. You
know, I just, I stopped for aminute and it, it took a second
to register, because I've neverbeen spoken to like that before,
where somebody just blatantlycame out and said, you want this
(12:02):
like you're crying sick, inessence, is what he was telling
me. He was totally gaslightingme. I was so mad at him and so
angry. And he ended theappointment. He's like, Well,
I'm not changing your diagnosis.
That's not what you have. Youdon't have scleroderma. You
know, if you want, you know,Connecticut's not that far away.
You can continue to come uphere, like, once a year, and
we'll see if anything changes. Iwas like, No, yeah, absolutely
(12:23):
not. I'm not wasting my time onyou. I'm going to go somewhere
else where they do believe me.
And sure enough, I went to Yale,like, three months later, here I
am, yeah, scleroderma, with awhole host of other issues.
Nancy Barrow (12:35):
Being in the medical field, that must have
been really frustrating, becauseyou you're right, and to be
dismissed by someone.
Melissa Marquis (12:42):
Well I think, as any professional, you know,
when you're engaged in your ownfield with other professionals,
you expect that there's somelevel of camaraderie and
understanding, mutual respect,right, even if you're not at the
same level of that as thatperson might be. So you know,
Doctor has had way moreeducation than a nurse goes
through. But yet, don't dismisswhat I know. I know a lot, and I
(13:06):
know a lot of my body is workingand operating or not working, as
the case may be. And so like,yeah, it's extremely
frustrating. So I think for me,that was the hardest piece to
manage and to deal with. Andthen, you know, it translates
over. It's not just thehealthcare providers that
dismiss you. I mean, you said itat the start of the program, and
(13:27):
I know there was no intentionbehind it, but you said, Oh, you
look great, good. I'm glad thatI look great. I don't want to
not look great. But at the sametime, most days, I don't feel
great. And so it's living withautoimmune disease. They are
invisible, often, more oftenthan not, and so it's hard to
get that level of, I don't know,empathy or just general, basic
(13:50):
kindness from people if I can'tphysically do something, or if I
am having a really bad day and Ican't go to work and I'm missing
time, but then I go in the nextday, and I look like I do now. I
look totally fine. You start tohear things, you know, people
start to talk, or you start tohear, you know, gossip or what
have you where you seeexpressions on people's faces
(14:11):
like it hurts, you know, don'tthink it's done out of a
malintent or anything. I thinkit's just, you don't know what
somebody else is going through
Nancy Barrow (14:19):
Has it changed you as a nurse?
Melissa Marquis (14:21):
Yeah, for sure.
You know, I'm definitely moreempathetic. It's given me a new
appreciation for all the thingsthat my patients dealt with,
especially my chronic disease.
Patients that I used to takecare of.
Nancy Barrow (14:33):
Tell me about Invisible and nurse turned
patients resource to living wellwith autoimmune disease. When
did you decide I need to write abook about what I've been
through so I can help otherpeople. Or was that your
motivation?
Melissa Marquis (14:45):
Yeah, it was.
And it came up really suddenly.
I never really had anyintentions of writing, of being
an author. The idea sort ofpopped in my head about five
years ago of writing somethingi. Because I do like to journal,
and I like the process ofwriting. It's I find it
cathartic and, you know,whatever is going on, but never
(15:07):
really thought I had anything ofvalue or importance to say or to
share. You know, I'm not much ofa storyteller, so I knew it
wasn't going to be a novel. So,you know, just trying to, like,
way back in the recesses of mymind. You know, it's just a
fleeting thought one day, andthen several years later, I had
just finished reading my Bible,and I was just kind of praying,
just that, just this thoughtcame to me, and you know, it
(15:31):
felt very much like somethingfrom God just telling me, okay,
you do have something to say,and actually, this is what I
want you to write about. And so,no joke, within 30 minutes, I
had the entire book, thestructure of the book, outlined,
chapter by chapter. I had thetitle done like it was instant
and it could only come once Ihad received the diagnosis and
(15:54):
finally felt validated and seenand and that's what I needed,
having gone so long andstruggled so much with getting
the care that I needed,including the treatments that I
needed, and I knew how tonavigate the healthcare system
and how what to ask and who tosee, and I did all the right
(16:15):
things, and yet it still took meover 13 years, or around 13
years, to get Some sort of adiagnosis, and it's just like,
well, shoot, what do otherpeople do that have none of that
background that I have and maybedon't know that they can speak
up and ask questions and or feelcomfortable in doing so? And so
my main point with this book isto empower people to educate
(16:41):
them a little bit about whatautoimmune disease is, what it
does to the body, regardless ofwhich one it is. And then I use
a lot of examples from my ownjourney, tips and
recommendations, strategies,anything that I learned along
the way that can't be found byGoogle, you know. And I just, I
really longed for a singularresource that I could thumb
(17:03):
through when some new symptompopped up and I couldn't tell if
it was connected to this one orto what was what I was feeling
this day. And so I can put thattogether. You know, that's
pretty easy. So I, yeah, I hadthe whole thing sketched out. I
mean, I wrote the book inprobably about six months. It
took a year plus for it toactually go through the
(17:25):
publication process. The reallyvaluable portion of the book is
I do a lot of education on selfadvocacy and teaching people how
to be a better self advocate.
And if they can't do it, thenhow do they get somebody in
their corner, some familyfriend, somebody that they trust
and support, that supports them,that can stand in for them. And
(17:47):
so give a lot of recommendationson how to do that, and sharing
resources and such. And then Iactually interviewed my doctor
at one point to get aphysician's perspective on okay,
if you're newly diagnosed orgoing through the diagnosis work
up stages, okay, so you're goingto see the specialist for the
(18:09):
first time. Like, what'simportant from a physician
standpoint? What do you wish thepatient would bring or would
tell you about? So I felt thatthat was really important for
people to understand. And then Iinterviewed, I think it's four
or five patients that hadvarious autoimmune diseases.
Asked them the same set ofquestions on just living life
and how to live the most wellbalanced life as possible. You
(18:35):
know what? What are the go tothings that they use and or
employ to help them get the mostout of their life.
Nancy Barrow (18:44):
And have you gotten feedback from your book?
Have people read it and said,Hey, this really helped me?
Melissa Marquis (18:48):
Yeah I hear from a lot of people that have
read it, mostly people that Idon't know that find me you know
through different podcastinterviews and you know through
Facebook and different supportgroups that I'm on in online.
And you know, I get lots ofmessages indicating, oh my gosh,
it feels like you're talkingabout me, but also to me. And so
(19:11):
there's definitely that sense ofvalidation on the other on the
readers part, so they're seeingit, they're reading it, and
they're hearing, oh my gosh,this I'm not alone. There is
actually somebody else that wentthrough something so similar,
you know, yeah, she still hassome struggles, but she's still
doing it like and she's kind ofcome through, and she's, you
(19:32):
know, giving back and trying tohelp. And so it's, it's helpful
for me to hear that feedback,because it also validates me and
the thought that I had, youknow, kind of coming up through
all of this that, gee, I wishthere was this singular
resource. Well, now there is,and so I, I hope that it
(19:54):
continues to get shared, youknow, in mass. You know, really
would love it to. Go out to thegeneral population and the
public so that anybody it's notjust meant for patients. The
book is really meant foranybody. You don't even have to
have autoimmune disease, becausethe so much of the strategies
and the information contained init can translate to many other
(20:16):
diseases. And it's reallyhelpful for family members as
well, because I think oftenpatients, individuals that live
with these chronic diseases,their families, they don't they
don't understand again, unlessyou're living with it, and
you're in my shoes, you don'tknow it what it's like. You
(20:36):
don't know how hard it is on aday to day, or sometimes even
hour by hour basis. And so, youknow, I can tell you till I'm
blue in the face, but until youactually experience it
firsthand, it's really hard tograsp that. And so a lot of
family members, I think,obviously, really good
intentioned and want to helptheir loved ones as much as they
(20:57):
can, doing whatever they can.
But often, on our end, on thepatient side, we almost don't
know what to tell people that weneed. And I know that that, for
me is really challenging, like Idon't I don't generally need a
lot of physical help yet withthings, certainly I would
appreciate it. But, you know,I'm very strong, I'm
(21:19):
independent, and I just do whatI have to do and carry on. But I
get that question often, I wishthere was something I could do.
What could I do for you? And Idon't know what to tell people,
yeah, so, like, it's the book. Italk a lot about that within the
book, like, just be there, justto try to support them, no
(21:40):
matter how how it looks for thatperson, just do something nice.
Nancy Barrow (21:46):
Like, yeah, no, just get dinner, yeah. Bring
something
Melissa Marquis (21:51):
To the floor.
Like, yeah. That person doesn'thave to think about it.
Nancy Barrow (21:55):
You know, 80% of autoimmune diseases affect
women. Do you think that that'sa barrier for, you know, the
medical field, that they don'tknow a lot about it, and so they
just kind of say, oh, it's inyour head, or, you know, it's
not what you think it is. Youjust want that diagnosis. Do you
think there needs to be bettertraining, maybe in med schools?
Unknown (22:19):
I think there's a lot of components to this, you know,
it's something that they'restill studying. And you know,
that's a new statistic, or morerecent statistic, where 80% are
female, and they're just nowstarting to identify why. And
again, there's brand new studiescoming out that it may be linked
(22:39):
to the fact that women have 2xchromosomes versus men who have
one, and so we're already sortof doubly, sort of doubles our
risk, in a sense, you know, ifyou're just looking at it from
that standpoint alone. Butthere's other factors that go
into it, and women, I think,historically, have been
(23:03):
dismissed in a lot of areas ofour lives, not just physical
and, you know, from a medicalstandpoint, and especially from
the opposite sex. And so, youknow, a lot there's, there's a
lot of male physicians, and soas a female patient going to a
male and you're giving them veryvague symptoms that can be
attributed to a host of otherproblems, and often very simple
(23:28):
things, such as just beingtired. You know, it's that time
of your month, so you're alittle more tired, you're a
little more cranky, maybe whereyou have, you know, a few other
things going on. It's like,okay, well, so many of these
symptoms can be attributed to somany other things that it's
really hard to nail down. And soI think, unfortunately, a lot of
(23:49):
times, the default from peopleis saying, oh, yeah, you're just
blah, blah, blah, or you're justx, you know, you just need to,
like, take a day off, or just,you know, you need a mental
health day and, or, you know,maybe, do you have a counselor?
Maybe you should go talk tosomebody and, you know, so they
kind of dismiss it, or lump itinto this psychological side,
(24:12):
which, yeah, maybe there's acomponent to it, but that's
certainly not the entire reason.
That's not what brought themthere to you that day.
Nancy Barrow (24:19):
Right? That might be something that you have to
deal with because you have anautoimmune disease.
Melissa Marquis (24:24):
Yeah, yeah, for sure.
Nancy Barrow (24:25):
So, so let's talk about that. Has it affected your
mental health and well being andand have you sought out support
groups or mental healthservices?
Melissa Marquis (24:33):
100 % yes, yeah. I actually, I talked
that's probably that. And selfadvocacy are the two main topics
in the book, if you're diagnosedwith a chronic disease, you
really should be engaged withsomebody that you can speak to,
whether it's a counselor, atherapist, a best friend,
somebody in your life that youcan speak very honestly to and
(24:56):
share your feelings, andhopefully they can impart.
Wisdom and strategies to helpyou move through these,
especially, you know, like anillness like mine, where
there's, it's affecting theentire part of my body, like my
whole body is, is ultimatelyaffected by this, but it's not
all at the same time. And soit's, it's very much of a,
(25:21):
progressive Oh, okay, well, I,let's say, two years ago, I got
diagnosed with pancreatitis,dealt with that. Now I have
cardiac issues, trying to dealwith that, and then I have some
other GI issues. Like, it's justthis, it's a seesaw, it's back
and forth. And, you know, thisis just the new normal for me.
And again, it's part of thatacceptance piece as well. Like
(25:41):
you, yeah, you can't moveforward if you don't accept the
fact that your body's fighting.
Recently, though, I've needed totake I just recently took off a
little over two weeks of time todeal with some treatment,
medication, changes that we'redoing, and so I wanted to allow
my body complete rest fromeverything and not think about
(26:03):
work, not think about otherstressors that might impact how
that treatment is going to workon me. And so that's probably
something that I will likelyneed to incorporate. You know,
moving forward, unfortunately,as my disease progresses, it's
it's not going to get better.
And so I know that, and youknow, not necessarily okay with
(26:26):
it, but at least I recognizethat this is something that I'm
going to have to deal with. Andso, you know, I have short term
disability, I've got access tothe Paid Family Leave Act, or
the the Connecticut paid actleave. Let's get those, the
words mixed up there, but sojust having resources, FMLA,
obviously, is another avenue.
So, you know, I've got again,you know, the support from my
(26:51):
doctors and from my employersthat you know want me to use
those resources.
Nancy Barrow (26:59):
Yeah when we first initially talked I told you
about Connecticut Paid Leave andthat you can get up to 12 weeks
a year for your chronic healthconditions, which you can take
every calendar year, obviously,which you say you're not going
to get better. So you can takethem for surgeries or
hospitalizations or doctorvisits. And there's the big
block leave, where, if you didhave surgery and you need those
12 weeks to recover, you can, oryou could do intermittent leave.
(27:23):
You take a day here a day there,or reduce schedule leave, where
maybe you take every Tuesdayafternoon off for your mental
health or support group visits.
And how valuable are serviceslike Connecticut paid leave to
you and caregivers of someonewith an auto immune disease?
Melissa Marquis (27:38):
Yeah I think it's huge, because then you're
not worrying so much about well,especially if you're in a job
that doesn't offer you paid timeoff. If you're working part
time, like a lot of people are,many people that that have a
chronic disease don't have theability to work full time
anymore, and so if you don'thave that ability to take time
(28:02):
off and get paid for it. Havingthis as a backup to supplement
your income is huge.
Nancy Barrow (28:09):
yeah so it takes a stressor away from you, you
know.
Melissa Marquis (28:12):
Yeah for sure.
And so that's one less thingthat you have to worry about,
which then you can focus yourenergies more on getting better.
And so it's great for, like, yousaid, anybody that's going
through anything, yeah? And Ilove the the ability to be able
to use it if, if you're thecaregiver as well, like, that's
not, they don't often have thatas an option. Yeah, that's
(28:36):
great. It's wonderful to use itfor that. So yeah, we're, we're
grateful that we've got that asa resource.
Nancy Barrow (28:45):
You know that Connecticut Paid Leave is here
for you, so I know that you saidyou had to take two weeks off.
So make sure you start youraccount.
Melissa Marquis (28:54):
I was playing with it actually before we
started. So I'm gonna definitelyput in for a new application,
great and get started and justhave it ready to go for when I
Nancy Barrow (29:05):
Go on our website. Ctpaidleave.org. It's
need it.
very easy to do. So I hope thatwe can help you. I mean, really
give you some peace of mindwhile you're trying to heal. You
know, this chronic disease thatyou have, this autoimmune
disease that you have is is atough one, so you got to be kind
to yourself and use theseresources that are available for
you.
Melissa Marquis (29:23):
Yeah?
Absolutely. Thank you.
Nancy Barrow (29:25):
I want to thank you, Melissa Marquis for coming
on The Paid Leave Podcast andtelling your story and hopefully
being on here and having yourbook Ready may help someone on
their journey through anautoimmune disease, and that's
all you can hope for, right.
Melissa Marquis (29:39):
Absolutely, yeah, for sure.
Nancy Barrow (29:41):
I hope your health journey with autoimmune disease
is much easier, and I wish yougood health for your future.
Melissa Marquis (29:47):
Thank you. I appreciate that very much.
Nancy Barrow (29:50):
For more information or to apply for
benefits, please go toctpaidleave.org This has been
another edition of The PaidLeave Podcast. Please like and.
subscribe so you'll be notifiedabout new podcasts that become
available. Connecticut PaidLeave is a public act with a
personal purpose. I'm NancyBarrow, and thanks for
(30:10):
listening.
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
May 9 is autoimmune arthritisday, and it is also me, CFS and
fibromyalgia internationalAwareness Day on May 12, and me
stands for myalgic encephalitis,formerly known as chronic
(00:42):
fatigue syndrome, known as CFS.
It's a chronic complex neuroimmune disease that affects the
quality of life of its patients.
And Fibromyalgia is a chronicdisorder characterized by pain
and stiffness and tenderness inthe muscles of the neck,
shoulders, back, hip, arms andlegs, and there are many other
symptoms as well. 80% ofautoimmune diseases affect
(01:04):
women. Melissa Marquis is anurse, author and emergency
management specialist. She hasmany years of experience in
nursing, so when she started notto feel quite like herself, she
started on a very long journeyto diagnosis of her symptoms,
and she wrote a book about herexperiences called Invisible, a
nurse turned patients resourceto living well with autoimmune
(01:26):
disease and Melissa, welcome tothe paid leave podcast. So happy
to have you here morning.
Melissa Marqu (01:31):
Nancy, thank you.
Nancy Barrow (01:31):
Well on Zoom, you look great. But how are you
feeling today Melissa?
Melissa Marquis (01:36):
Well I appreciate that. You know, today
is actually a pretty decent day,so I will take any decent day
over any bad day of the week. Soyeah, it's the last several
months have been quite difficultfor me. A lot of different
problems creeping up and newdiagnosed testing. But as I
(01:57):
said, you know, you got to takethe good days when you get them!
Nancy Barrow (01:59):
So why did you become a nurse?
Melissa Marquis (02:03):
From an early age as a child, I remember my
best friend and I, we livedacross the street from each
other, and we both wanted to bedoctors, probably from the age
of seven on, and we used to playwe had microscope kits, and we'd
play doctor, and we said, we'regoing to find a cure for cancer.
And so that kind of just stuckwith me all the way through
(02:24):
school. I was really engaged inthe sciences in school, you
know, really had an affinitytowards science and math and,
you know, all things body wise,you know, it's just really
intriguing. And so as I startedgetting ready to start looking
at colleges and really what Iwanted to do, you know, I
(02:44):
obviously had to make adecision, you know, do I go pre
med? Do I stick to a differentdiscipline within healthcare? So
I was looking at pre med. And mysenior year of high school, I
ended up with a knee injury fromyears of sports playing, and
needed to have surgery. Hadsurgery. Ended up having a post
op DVT, which is a blood clot inyour one of your deep veins. And
(03:09):
so I ended up in the hospitalright as applications were due
for colleges and all of this.
And so it just, it really kindof threw me a bit at that time.
And so I ended up applying foradmission to two different
physician assistant programs.
When I was in the hospital, Ihad already put the applications
(03:30):
in, and of course, the very highnumber of applicants, and so
they only accepted, like maybe20 students, 25 students per
year, so I didn't get into theschools that I had applied to.
And so sort of just stuck here.
It is end of February of mysenior year, and I have no
school to go to, you know, Ididn't have a backup that I was
interested in. And so I thought,well, shoot, and now I don't
(03:51):
know what to do with my life,yeah, and I didn't want to,
like, take a year off, so I justkind of took that opportunity in
as I was in the hospital, I justwatched all the staff just kind
of paying attention to what theydo for work. And I was sort of
drawn to nursing a little bit,and just said, Well, you know
what? I can easily do that, andthen I can always advance my
(04:12):
career beyond that, if I wantedto become a nurse practitioner
or get a doctorate. You knowthat field is really endless for
nursing. So that's the direction
Nancy Barrow (04:21):
It served you well for what you had to deal with.
I chose.
So why don't you tell me yourstory, Melissa, when did you
think that something was wrongwith you and you started your
own journey to figure out whatwas wrong with you and what were
your symptoms?
Melissa Marquis (04:34):
Yes, I was 30 years old then, so, you know,
had a fair amount of experienceand life lived to that point in
healthy all the way up to then,essentially overnight, I just
developed these new randomvascular type of symptoms with
some swelling in my hands and myfeet. I had Raynaud's
(04:56):
phenomenon, which is a conditionwhere your. Vessels in your
extremities, particularly yourhands, your feet. Sometimes it
can affect parts of your face aswell, where your blood vessels
constrict, and it reduces bloodflow, and it's usually in
response to, like cold stress,some type of trauma. And I had
experienced none of that, butyet here I am having these
(05:17):
symptoms on my hands and myfeet, and then I had some
additional skin related nodulesand painful swelling of my toes
and just very out of character.
So I sought care very quickly,and based on my own medical
information and knowledge tothat point, and you know,
different providers that I'veworked with over the years, I
asked a couple of my colleagueswhat they thought, and they
(05:40):
said, I think that might be arheumatological issue. And I
agreed. And so that's where Ifirst went. I just I asked for a
couple of referrals from somecolleagues, and started my
journey down that road andtrying to get to the bottom of
it. But yet, the first doctorsthat I saw essentially told me
that what I was experiencing atthe time, the symptoms that I
(06:02):
presented with, were in my feet,primarily, and they said, Oh,
well, it's just like frostbite,you know. Just keep your feet
warm and dry, watch to see ifanything else happens. But that
was basically it. And so I'mlike, but it's July, right?
Frostbite in July, like it justdidn't make sense to me. And I
thought that's and, you know,they did a very thorough exam.
(06:25):
They took loads and loads ofblood, and nothing really popped
up at that point. So it was veryearly. Whatever was causing it
was very, very early in itsprocess, so there wasn't much to
diagnose then. But I continued,and I sought out another
rheumatologist, and I stayedwith that doctor for good 10
years or so, seeing her aboutevery two to three months, she'd
(06:47):
take up to like 1314, vials ofblood every two months, doing
the full autoimmune diseasepanel on me, every test that
they know to man for autoimmunedisease, trying to figure out
what my symptoms are pointingtowards. And over that period of
time, I had developed more andmore symptoms outside of just
the Raynaud's and what was knownon the feet is called
(07:07):
chillblains. So aside from thosetwo issues, I started developing
joint pain, more skin relatedchanges. So my fingers became
tight, as I said. I had someswelling in my hands, you know,
just a number of other thingsthat just seemed, again, really
out of character. I couldn'tfigure out how they related to
one another, if they related toone another, and neither could
(07:28):
by doctors to that point. And soit probably wasn't until around
2017 when I started experiencingsome internal symptoms. So not
just external based symptoms andpain, but I was having some
difficulty with swallowing andreflux, and my esophagus would
spasm whenever I swallowed. Itwas very painful, and that,
(07:52):
again, was all very new to me. Idecided to change doctors at
that point to try to figure outwhat's what's going on. Like,
spend 10 years, we should havesomething now and, yeah, solid,
yeah, whatever this is, is aninternal now. It's a systemic
issue. So we had been talkingabout the idea of a diagnosis
called scleroderma, and it wassomething that had been on my
(08:15):
mind pretty much from almost dayone, once, once I had the ray
nodes and the tightness on thefingers, I knew exactly what it
was, but it just took a longtime to get docs to agree and
start, you know, reallyexploring that for a diagnosis
for me. So I, yet again, changeddoctors and found a physician
that was wonderful. She alsoagreed with me. She says, Yeah,
(08:38):
I think you do have symptoms ofscleroderma, but it's not fully
presented yet, so can't reallyofficially diagnose you, but she
said, I think you should getsome testing. Let's look at your
esophagus and your swallowing,and let's do all these different
tests, which I did. And then sherecommended going down to Yale,
which had a new sclerodermaprogram that was just starting
in 2018 and so ultimately,that's where I ended up getting
(09:02):
diagnosed with scleroderma, youknow, shortly after that, and
you know, have since continuedmy care there. I've got a lot, a
lot of doctors now. I've got alot of problems, unfortunately,
and it's continued. The diseasescontinue to progress. It's
affecting my heart, mostrecently, my lungs, my GI tract,
so there's, there's a lot goingon, and there's, unfortunately,
(09:23):
with many autoimmune disease,there's not a ton available for
treatment. It's kind of hit ormiss sometimes.
Nancy Barrow (09:32):
And some of the treatments can be worse than the
disease.
Melissa Marquis (09:35):
Yeah, for sure and some of these were. I had a
meeting last night, actually,with two of my physicians, based
on some recent tests that I'vehad, and trying to figure out,
at what point do I startimmunosuppression therapy, which
is kind of a mainstay treatmentfor autoimmune disease, because
at its core, autoimmune disease,no matter which type it is, is
(09:58):
an overactive. Immune system.
And so your body gets triggeredby some exposure to something,
whether it's a virus, aninfection, some sort of a
chemical exposure, or otherenvironmental exposure. And it
kind of can almost, sort of liketurn on a gene. It's almost like
a light switch turns on in yourbody and says, Oh, hey, your
cells now I'll look foreign. Solet's just go attack you. And so
(10:21):
the whole goal withimmunosuppressant therapy is to
reduce that overactive burdenthat your body has and try to
calm it down, and then hopefullyreduce the inflammation.
Nancy Barrow (10:34):
What was the most frustrating part of your journey
for you?
Melissa Marquis (10:39):
Not being believed. You know, I spent
many, many years, as I said, Ispent 10 years almost, with one
doctor. She knew I was a nurse.
She knew, you know, I asked herall the right questions all the
time, and I got dismissed a lot.
You know, she would answer someof the questions, talk around
them, sometimes just blatantlynot answer. You know, I can
(10:59):
understand that if you don'tknow. I mean, rheumatology is a
very difficult field to be inbecause there's often a lot of
unknowns. I'm just the type ofperson that I would much rather
appreciate you telling me,Listen, I don't know yet, or we
don't know yet. As a field, youknow, research hasn't advanced
that far. Tell me that, ratherthan just not answering the
questions, right? So I had a lotof that unfortunately, and I had
(11:20):
seen a physician at one pointjust before I went to Yale to
the Scleroderma program, I choseto go up to Boston, at one of
their major universities, totheir scleroderma program. And
so I brought all of my documentsthere, gave him everything, all
the tests and studies that havebeen up to done up to that date,
and he essentially looked at it,and he says, Okay, well, you're
(11:41):
obviously very detailed andorganized, and, you know, very
thorough, and, you know, puttingall of your stuff together, but
you're leading me down the pathof diagnosis that you want. You
know, I just, I stopped for aminute and it, it took a second
to register, because I've neverbeen spoken to like that before,
where somebody just blatantlycame out and said, you want this
(12:02):
like you're crying sick, inessence, is what he was telling
me. He was totally gaslightingme. I was so mad at him and so
angry. And he ended theappointment. He's like, Well,
I'm not changing your diagnosis.
That's not what you have. Youdon't have scleroderma. You
know, if you want, you know,Connecticut's not that far away.
You can continue to come uphere, like, once a year, and
we'll see if anything changes. Iwas like, No, yeah, absolutely
(12:23):
not. I'm not wasting my time onyou. I'm going to go somewhere
else where they do believe me.
And sure enough, I went to Yale,like, three months later, here I
am, yeah, scleroderma, with awhole host of other issues.
Nancy Barrow (12:35):
Being in the medical field, that must have
been really frustrating, becauseyou you're right, and to be
dismissed by someone.
Melissa Marquis (12:42):
Well I think, as any professional, you know,
when you're engaged in your ownfield with other professionals,
you expect that there's somelevel of camaraderie and
understanding, mutual respect,right, even if you're not at the
same level of that as thatperson might be. So you know,
Doctor has had way moreeducation than a nurse goes
through. But yet, don't dismisswhat I know. I know a lot, and I
(13:06):
know a lot of my body is workingand operating or not working, as
the case may be. And so like,yeah, it's extremely
frustrating. So I think for me,that was the hardest piece to
manage and to deal with. Andthen, you know, it translates
over. It's not just thehealthcare providers that
dismiss you. I mean, you said itat the start of the program, and
(13:27):
I know there was no intentionbehind it, but you said, Oh, you
look great, good. I'm glad thatI look great. I don't want to
not look great. But at the sametime, most days, I don't feel
great. And so it's living withautoimmune disease. They are
invisible, often, more oftenthan not, and so it's hard to
get that level of, I don't know,empathy or just general, basic
(13:50):
kindness from people if I can'tphysically do something, or if I
am having a really bad day and Ican't go to work and I'm missing
time, but then I go in the nextday, and I look like I do now. I
look totally fine. You start tohear things, you know, people
start to talk, or you start tohear, you know, gossip or what
have you where you seeexpressions on people's faces
(14:11):
like it hurts, you know, don'tthink it's done out of a
malintent or anything. I thinkit's just, you don't know what
somebody else is going through
Nancy Barrow (14:19):
Has it changed you as a nurse?
Melissa Marquis (14:21):
Yeah, for sure.
You know, I'm definitely moreempathetic. It's given me a new
appreciation for all the thingsthat my patients dealt with,
especially my chronic disease.
Patients that I used to takecare of.
Nancy Barrow (14:33):
Tell me about Invisible and nurse turned
patients resource to living wellwith autoimmune disease. When
did you decide I need to write abook about what I've been
through so I can help otherpeople. Or was that your
motivation?
Melissa Marquis (14:45):
Yeah, it was.
And it came up really suddenly.
I never really had anyintentions of writing, of being
an author. The idea sort ofpopped in my head about five
years ago of writing somethingi. Because I do like to journal,
and I like the process ofwriting. It's I find it
cathartic and, you know,whatever is going on, but never
(15:07):
really thought I had anything ofvalue or importance to say or to
share. You know, I'm not much ofa storyteller, so I knew it
wasn't going to be a novel. So,you know, just trying to, like,
way back in the recesses of mymind. You know, it's just a
fleeting thought one day, andthen several years later, I had
just finished reading my Bible,and I was just kind of praying,
just that, just this thoughtcame to me, and you know, it
(15:31):
felt very much like somethingfrom God just telling me, okay,
you do have something to say,and actually, this is what I
want you to write about. And so,no joke, within 30 minutes, I
had the entire book, thestructure of the book, outlined,
chapter by chapter. I had thetitle done like it was instant
and it could only come once Ihad received the diagnosis and
(15:54):
finally felt validated and seenand and that's what I needed,
having gone so long andstruggled so much with getting
the care that I needed,including the treatments that I
needed, and I knew how tonavigate the healthcare system
and how what to ask and who tosee, and I did all the right
(16:15):
things, and yet it still took meover 13 years, or around 13
years, to get Some sort of adiagnosis, and it's just like,
well, shoot, what do otherpeople do that have none of that
background that I have and maybedon't know that they can speak
up and ask questions and or feelcomfortable in doing so? And so
my main point with this book isto empower people to educate
(16:41):
them a little bit about whatautoimmune disease is, what it
does to the body, regardless ofwhich one it is. And then I use
a lot of examples from my ownjourney, tips and
recommendations, strategies,anything that I learned along
the way that can't be found byGoogle, you know. And I just, I
really longed for a singularresource that I could thumb
(17:03):
through when some new symptompopped up and I couldn't tell if
it was connected to this one orto what was what I was feeling
this day. And so I can put thattogether. You know, that's
pretty easy. So I, yeah, I hadthe whole thing sketched out. I
mean, I wrote the book inprobably about six months. It
took a year plus for it toactually go through the
(17:25):
publication process. The reallyvaluable portion of the book is
I do a lot of education on selfadvocacy and teaching people how
to be a better self advocate.
And if they can't do it, thenhow do they get somebody in
their corner, some familyfriend, somebody that they trust
and support, that supports them,that can stand in for them. And
(17:47):
so give a lot of recommendationson how to do that, and sharing
resources and such. And then Iactually interviewed my doctor
at one point to get aphysician's perspective on okay,
if you're newly diagnosed orgoing through the diagnosis work
up stages, okay, so you're goingto see the specialist for the
(18:09):
first time. Like, what'simportant from a physician
standpoint? What do you wish thepatient would bring or would
tell you about? So I felt thatthat was really important for
people to understand. And then Iinterviewed, I think it's four
or five patients that hadvarious autoimmune diseases.
Asked them the same set ofquestions on just living life
and how to live the most wellbalanced life as possible. You
(18:35):
know what? What are the go tothings that they use and or
employ to help them get the mostout of their life.
Nancy Barrow (18:44):
And have you gotten feedback from your book?
Have people read it and said,Hey, this really helped me?
Melissa Marquis (18:48):
Yeah I hear from a lot of people that have
read it, mostly people that Idon't know that find me you know
through different podcastinterviews and you know through
Facebook and different supportgroups that I'm on in online.
And you know, I get lots ofmessages indicating, oh my gosh,
it feels like you're talkingabout me, but also to me. And so
(19:11):
there's definitely that sense ofvalidation on the other on the
readers part, so they're seeingit, they're reading it, and
they're hearing, oh my gosh,this I'm not alone. There is
actually somebody else that wentthrough something so similar,
you know, yeah, she still hassome struggles, but she's still
doing it like and she's kind ofcome through, and she's, you
(19:32):
know, giving back and trying tohelp. And so it's, it's helpful
for me to hear that feedback,because it also validates me and
the thought that I had, youknow, kind of coming up through
all of this that, gee, I wishthere was this singular
resource. Well, now there is,and so I, I hope that it
(19:54):
continues to get shared, youknow, in mass. You know, really
would love it to. Go out to thegeneral population and the
public so that anybody it's notjust meant for patients. The
book is really meant foranybody. You don't even have to
have autoimmune disease, becausethe so much of the strategies
and the information contained init can translate to many other
(20:16):
diseases. And it's reallyhelpful for family members as
well, because I think oftenpatients, individuals that live
with these chronic diseases,their families, they don't they
don't understand again, unlessyou're living with it, and
you're in my shoes, you don'tknow it what it's like. You
(20:36):
don't know how hard it is on aday to day, or sometimes even
hour by hour basis. And so, youknow, I can tell you till I'm
blue in the face, but until youactually experience it
firsthand, it's really hard tograsp that. And so a lot of
family members, I think,obviously, really good
intentioned and want to helptheir loved ones as much as they
(20:57):
can, doing whatever they can.
But often, on our end, on thepatient side, we almost don't
know what to tell people that weneed. And I know that that, for
me is really challenging, like Idon't I don't generally need a
lot of physical help yet withthings, certainly I would
appreciate it. But, you know,I'm very strong, I'm
(21:19):
independent, and I just do whatI have to do and carry on. But I
get that question often, I wishthere was something I could do.
What could I do for you? And Idon't know what to tell people,
yeah, so, like, it's the book. Italk a lot about that within the
book, like, just be there, justto try to support them, no
(21:40):
matter how how it looks for thatperson, just do something nice.
Nancy Barrow (21:46):
Like, yeah, no, just get dinner, yeah. Bring
something
Melissa Marquis (21:51):
To the floor.
Like, yeah. That person doesn'thave to think about it.
Nancy Barrow (21:55):
You know, 80% of autoimmune diseases affect
women. Do you think that that'sa barrier for, you know, the
medical field, that they don'tknow a lot about it, and so they
just kind of say, oh, it's inyour head, or, you know, it's
not what you think it is. Youjust want that diagnosis. Do you
think there needs to be bettertraining, maybe in med schools?
Unknown (22:19):
I think there's a lot of components to this, you know,
it's something that they'restill studying. And you know,
that's a new statistic, or morerecent statistic, where 80% are
female, and they're just nowstarting to identify why. And
again, there's brand new studiescoming out that it may be linked
(22:39):
to the fact that women have 2xchromosomes versus men who have
one, and so we're already sortof doubly, sort of doubles our
risk, in a sense, you know, ifyou're just looking at it from
that standpoint alone. Butthere's other factors that go
into it, and women, I think,historically, have been
(23:03):
dismissed in a lot of areas ofour lives, not just physical
and, you know, from a medicalstandpoint, and especially from
the opposite sex. And so, youknow, a lot there's, there's a
lot of male physicians, and soas a female patient going to a
male and you're giving them veryvague symptoms that can be
attributed to a host of otherproblems, and often very simple
(23:28):
things, such as just beingtired. You know, it's that time
of your month, so you're alittle more tired, you're a
little more cranky, maybe whereyou have, you know, a few other
things going on. It's like,okay, well, so many of these
symptoms can be attributed to somany other things that it's
really hard to nail down. And soI think, unfortunately, a lot of
(23:49):
times, the default from peopleis saying, oh, yeah, you're just
blah, blah, blah, or you're justx, you know, you just need to,
like, take a day off, or just,you know, you need a mental
health day and, or, you know,maybe, do you have a counselor?
Maybe you should go talk tosomebody and, you know, so they
kind of dismiss it, or lump itinto this psychological side,
(24:12):
which, yeah, maybe there's acomponent to it, but that's
certainly not the entire reason.
That's not what brought themthere to you that day.
Nancy Barrow (24:19):
Right? That might be something that you have to
deal with because you have anautoimmune disease.
Melissa Marquis (24:24):
Yeah, yeah, for sure.
Nancy Barrow (24:25):
So, so let's talk about that. Has it affected your
mental health and well being andand have you sought out support
groups or mental healthservices?
Melissa Marquis (24:33):
100 % yes, yeah. I actually, I talked
that's probably that. And selfadvocacy are the two main topics
in the book, if you're diagnosedwith a chronic disease, you
really should be engaged withsomebody that you can speak to,
whether it's a counselor, atherapist, a best friend,
somebody in your life that youcan speak very honestly to and
(24:56):
share your feelings, andhopefully they can impart.
Wisdom and strategies to helpyou move through these,
especially, you know, like anillness like mine, where
there's, it's affecting theentire part of my body, like my
whole body is, is ultimatelyaffected by this, but it's not
all at the same time. And soit's, it's very much of a,
(25:21):
progressive Oh, okay, well, I,let's say, two years ago, I got
diagnosed with pancreatitis,dealt with that. Now I have
cardiac issues, trying to dealwith that, and then I have some
other GI issues. Like, it's justthis, it's a seesaw, it's back
and forth. And, you know, thisis just the new normal for me.
And again, it's part of thatacceptance piece as well. Like
(25:41):
you, yeah, you can't moveforward if you don't accept the
fact that your body's fighting.
Recently, though, I've needed totake I just recently took off a
little over two weeks of time todeal with some treatment,
medication, changes that we'redoing, and so I wanted to allow
my body complete rest fromeverything and not think about
(26:03):
work, not think about otherstressors that might impact how
that treatment is going to workon me. And so that's probably
something that I will likelyneed to incorporate. You know,
moving forward, unfortunately,as my disease progresses, it's
it's not going to get better.
And so I know that, and youknow, not necessarily okay with
(26:26):
it, but at least I recognizethat this is something that I'm
going to have to deal with. Andso, you know, I have short term
disability, I've got access tothe Paid Family Leave Act, or
the the Connecticut paid actleave. Let's get those, the
words mixed up there, but sojust having resources, FMLA,
obviously, is another avenue.
So, you know, I've got again,you know, the support from my
(26:51):
doctors and from my employersthat you know want me to use
those resources.
Nancy Barrow (26:59):
Yeah when we first initially talked I told you
about Connecticut Paid Leave andthat you can get up to 12 weeks
a year for your chronic healthconditions, which you can take
every calendar year, obviously,which you say you're not going
to get better. So you can takethem for surgeries or
hospitalizations or doctorvisits. And there's the big
block leave, where, if you didhave surgery and you need those
12 weeks to recover, you can, oryou could do intermittent leave.
(27:23):
You take a day here a day there,or reduce schedule leave, where
maybe you take every Tuesdayafternoon off for your mental
health or support group visits.
And how valuable are serviceslike Connecticut paid leave to
you and caregivers of someonewith an auto immune disease?
Melissa Marquis (27:38):
Yeah I think it's huge, because then you're
not worrying so much about well,especially if you're in a job
that doesn't offer you paid timeoff. If you're working part
time, like a lot of people are,many people that that have a
chronic disease don't have theability to work full time
anymore, and so if you don'thave that ability to take time
(28:02):
off and get paid for it. Havingthis as a backup to supplement
your income is huge.
Nancy Barrow (28:09):
yeah so it takes a stressor away from you, you
know.
Melissa Marquis (28:12):
Yeah for sure.
And so that's one less thingthat you have to worry about,
which then you can focus yourenergies more on getting better.
And so it's great for, like, yousaid, anybody that's going
through anything, yeah? And Ilove the the ability to be able
to use it if, if you're thecaregiver as well, like, that's
not, they don't often have thatas an option. Yeah, that's
(28:36):
great. It's wonderful to use itfor that. So yeah, we're, we're
grateful that we've got that asa resource.
Nancy Barrow (28:45):
You know that Connecticut Paid Leave is here
for you, so I know that you saidyou had to take two weeks off.
So make sure you start youraccount.
Melissa Marquis (28:54):
I was playing with it actually before we
started. So I'm gonna definitelyput in for a new application,
great and get started and justhave it ready to go for when I
Nancy Barrow (29:05):
Go on our website. Ctpaidleave.org. It's
need it.
very easy to do. So I hope thatwe can help you. I mean, really
give you some peace of mindwhile you're trying to heal. You
know, this chronic disease thatyou have, this autoimmune
disease that you have is is atough one, so you got to be kind
to yourself and use theseresources that are available for
you.
Melissa Marquis (29:23):
Yeah?
Absolutely. Thank you.
Nancy Barrow (29:25):
I want to thank you, Melissa Marquis for coming
on The Paid Leave Podcast andtelling your story and hopefully
being on here and having yourbook Ready may help someone on
their journey through anautoimmune disease, and that's
all you can hope for, right.
Melissa Marquis (29:39):
Absolutely, yeah, for sure.
Nancy Barrow (29:41):
I hope your health journey with autoimmune disease
is much easier, and I wish yougood health for your future.
Melissa Marquis (29:47):
Thank you. I appreciate that very much.
Nancy Barrow (29:50):
For more information or to apply for
benefits, please go toctpaidleave.org This has been
another edition of The PaidLeave Podcast. Please like and.
subscribe so you'll be notifiedabout new podcasts that become
available. Connecticut PaidLeave is a public act with a
personal purpose. I'm NancyBarrow, and thanks for
(30:10):
listening.
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