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๐Ÿ™ƒ Show: Illness with Dina

March 6, 2020

y’all ready y’all ready y’all ready
y’all ready welcome to the Upside Down Smilie Show where we talk about real
life but we don’t take life too seriously and we hear the stories of
everyday people my name is Shereene and we have Dina here
and today we are talking about illness cue the intro so Dina is here and
she reached out to me and had all these great ideas so I’m going to have to have you
back Dina wanted to talk about illness and like the stigmas in
society in general but specifically the Indian community I think a lot of my
videos are kind of in that direction because that’s what we know we are
Indian Americans we are growing up with Indian parents and we have
Indian families what was your experience with your
illness I was diagnosed with systemic lupus
nephritis so which means that I have advanced kidney inflammation I was
actually diagnosed about 25 years ago so you were very young it’s been a minute
when I was first diagnosed certainly the focus
just trying to figure out what the heck is going on with me but you know once we
start figuring it out and you know kind of understand what was going on then
there was this whole basket of you know don’t talk about it don’t tell
people especially you know the family don’t tell Indians don’t talk about it
with your friends and you know just this hush-hush around it that came from
not only my parents but you know some of the other people in my family and
friends circle as well I feel like my first reaction is people don’t know a
lot about it and so it’s that fear of the unknown oh my gosh this is so
scary what do I say and so what is your experience been like I mean that
definitely exists there’s people that have no idea they’ve either
heard of it and have no idea it is or never heard of it on top of it
they think they know what it is they think I might be contagious like there’s
all kinds of things floating out there and then others who just feel
like they somehow need to say something to me to make me feel better or to fix
it or to that you know help me be positive about it and you
know really it’s none of those things it’s just you know kind of sit back and
support me as I maneuver my life and figure out what I need to do and
have you been open I’ve been very open from day one have people’s reactions just
been kind of awkward or I’ve experienced everything from you know I don’t want to
make it seem like it’s all been crazy or bad like I’ve incredible friends
and family that have been supportive from the start and and then others who
you know just really it’s been awkward or they aren’t quite sure what to say
you know some who’ve just you know decided that maybe they don’t want to
talk to me anymore and lost friends along the way
it’s all part of life the process
I don’t understand why people would think to just stop being friends with you I
think for some people like it’s too hard you know they want to take life
laid-back and easy and just being near me and knowing that I’m going through a
difficult time they’re afraid of saying the wrong thing or being you know
happy when I might not be happy that day whatever it might be and so it’s too hard
and you know for others it’s you know they just really feel they feel
helpless and they just really want to be able to make it better for
me and they can’t sometimes you know with illness especially chronic illness
you can’t keep up I miss out on
things because I might have to change plans because I don’t feel well
or I can’t make it to something and after a point there are some people
that they feel like it might be an excuse or they’re just tired
of asking if my answer is often no I won’t say consistently because
I try I push myself and I actually probably function a lot higher
if you will than a lot of people with chronic illness cuz I just you know
that’s how I choose to live my life and I want to be out there living my
life but I I try to meet my friends where they’re at and just hope for the
same back. I think that’s what I was thinking is we’re just
reciprocating what you would expect from from them and I think when people think
it’s hard because of what you’re going through you’re gonna go through
something in your life where you’re gonna need people that excuse where
you know you miss things you forget to invite people because maybe you’re not
seeing them as often but you have to be understanding and the people that you
really support are gonna be there for you when you need them people just want
to kind of take those easy friendships I think about high school,
college you have those easy friendships and then afterwards you have
to actually try and maintain those relationships I
understand people being uncomfortable I think we need to get more comfortable
with being uncomfortable absolutely and having conversations
absolutely I mean that’s what I’m doing right we need to get better about just
like ripping the band-aid off quickly and not avoiding those conversations
like maybe you tell them what’s going on with you and then you
don’t need any solutions you just be like you know I’m here to talk
I’m just here for you right and then you go do your homework
you can go and do some research and and figure out more information and
if you feel like you need more then maybe you go back to that person and ask
them because I’m sure they want to share right do you feel like you’re open to
sharing absolutely and you know my thing is it if if I share my story or my
experiences if there’s at least one person out there that feels like they
can then relate or they can come to me with whatever they might be facing or
a parent or loved one or sibling might be facing
then you know it’s made my journey not in vain and I can then be
impactful and you know for other people and I feel like that’s part of my
purpose I mean it’s what I decided for my career path
I actually work for the make-a-wish Foundation so I’ve
been there for about 19 years now and it’s clearly I love what I do and doing amazing
things so the perspective that I get to bring to the table in my
job is that if I can get up and get out of bed regardless of what I’m facing I’m
still ahead of the game because the children and families that we’re serving
and working with are facing much more difficult situations
and you’re a part of that story and a part of that process to bring them
joy and that’s a beautiful thing why our community is so hush-hush about
illness it’s like you’re tarnished you weren’t married at that point
right so are you going to be a suitable partner are families gonna
want to welcome you into their family I mean I think that’s definitely part of it you it was part of the
conversation with my family what if someone finds
out or what if they decide that wouldn’t be a possibility and you know for
me at the time certainly survival was the main priority I wasn’t even thinking about you know getting married at the
time how old were you at the time? I was 19 when I started having symptoms I was always about you
know I’ll meet the right person when I meet the right person and if that
person can you know accept me for everything I am just as I will for them
then it’ll be meant to be and I certainly didn’t wanna ever you
know consider being part of a family that would see that as you make me less
than in some way or tarnished or you know like unsuitable or whatever you
want to call it or less than perfect it’s one thing you can’t control it and if
it was something that you did to bring on to yourself it’s
already here so what can we do you met a great person
who is my extended family relative and they’re a great family
you guys have been together for a long time we have been married for 15 years and
just dating for three and a half prior to that for us having a
baby was a long path a long journey partly because I went through
chemotherapy twice associated with the lupus nephritis so and then the
Lupus alone kidney disease the medications like everything factored in
there was a strong probability and possibility that we maybe couldn’t have
our own children and fortunately Nitin knew that going into it so not
only did he meet me where I was and accept me for everything I
was and everything that I wasn’t he also accepted the fact that we
potentially may not have had our own children and is totally
still in it and that’s the kind of partner you want so you know we
went on the journey together and fortunately for us we were actually able
to have a child after many years and we now have an 18 month old baby
that’s beautiful you don’t need to know everything you don’t need to help them I
think all you can really offer is support and love and empathy
just understand that perspective wise everybody’s facing
something so it’s not just me you this is my whatever you want to call it
cross to bear but everybody has something and
kindness is the answer be kind and you don’t have to have
the answers for anybody you don’t have to fix anybody but
don’t run the other direction or try to solve their problems for them either
I think in general just being more patient with people understanding that what is
going on at home what is going on in their mind they don’t share everything
if you don’t have any kind of diagnosis that doesn’t mean you’re perfectly
healthy I look like a perfectly healthy person but you know
mentally I’ve gone through things right now I’m taking my physical health
more of a focus because as I get older I know that it’s just going to get more
challenging and I shouldn’t be huffing and puffing going up two flights of stairs
so I’m not perfect and no one’s perfect
right and so recognize that I’m sure your mom your parents were
thinking about no we don’t want everyone to be talking about you and that’s a way
of us protecting I think she’s kind of protect her child but think
about when you’re gossiping is it harmful it’s one thing to be
talking about something to be productive like let’s talk about this
you know talk about my videos I’d love you for guys talk about my videos and talk about
these topics because let’s have productive conversation but if we’re
just talking about it to this oh my goodness I wonder how she got it I
wonder how things are I wonder if something’s going on with her family
when you’re having those conversations would you want someone else to be
talking about you that way and check yourself we need to check ourselves a
little bit more I make mistakes every single day I’m trying to be more open
about my mistakes in a way that’s forgiving and giving myself grace
we all have room for improvement we could just be kinder thank you so much
for being here I really appreciate you for driving all the way out to Rogers
Park friggin most north side of Chicago from Bolingbrook
thank you so much for watching we do a video every single week
so when I release this video I’m gonna need you to get on Nitin’s Instagram
we’re gonna go live and I want people to come on and ask questions and really
make this a conversation not just between me and you not just in my
comments like let’s talk about this and continue the conversation so thank you
so much for watching

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