About Health Talk
Living with a chronic condition can feel isolating. Health Talk by Flowly was born from wanting to bring often isolated voices into the fold, and connecting different ideas, experiences, and tools to your own health journey. We talk to health practitioners and chronic health patients to deconstruct the chronic condition journey— from how many have managed the challenging diagnosis experience, to new tools and tips that might help you. We cover conditions including chronic pain, anxiety, autoimmune diseases, and more. Hosted by Celine, the founder of Flowly, this weekly podcast will dive into conversations with world class researchers, practitioners, and even more importantly, chronic condition warriors themselves.
You can also find Flowly Health Talk on Apple Podcast and Spotify.
In this episode, Celine chats with an amazing young chronic illness warrior from North Carolina. Bella McCray is an advocator for Lupus, a member of Autoimmune Sisters, and a Lupus patient herself. Bella shares her experience with Lupus, her diagnosis story, and even how her identity as a young Black woman has shaped how she’s had to manage an invisible illness.
*This transcript is auto-generated
Hi everyone, my name is Celine and I'm
the founder Flowly it's a mobile
platform for chronic pain and anxiety. As
some of you know Flowly teaches users to
control their heart rate and breathing
to better manage symptoms around pain
anxiety and even sleep. A lot of our
users say it's kind of like meditating
for people who have trouble meditating.
With Covid-19 and the necessary protests for
Black Lives Matter, we're a young team and
we're trying to figure out ways in which we
can better highlight underrepresented
voices in this community especially
because historically the health care
system has really abandoned and not
highlighted Black voices, women voices,
etc. That's why today I'm super excited
for the series and to start it off with
Bella. Bella is an amazing young chronic
illness advocate. She has Lupus but is
also an advocate for Lupus. She's a
member of Autoimmune Sisters and was
kind enough to join us today to share
her story with us. Thanks for being here Bella.
Thank you for having me. It's an honor. This is a
very good opportunity for me to share my
voice with others and I cannot wait.
So I want to just start kind of towards the
beginning of your story. I know that you
were diagnosed with Lupus while you're
pretty young. How old
were you when you first started
pretty young. How old
were you when you first started
experiencing symptoms and kind of what
was that journey up till your diagnosis?
it's started when I was actually before I was
in preschool at the time and my teacher
she always used to like massage my legs
as she was reading book
to me and she was talking my mom one day
about it and she was like well
Isabella's having you know sore legs and
I know she doesn't run or you know she's
not that active because I'm lactose
intolerant so I don't drink milk so I'm
kind of skinny at the time. My teeth were
brittle. I was kind of weak but I was
four years old so I'm still growing. We
went to the doctor, my pediatrician
in my hometown and she said it was
growing pains. So me being four and then
my mom explained it to me she was like
"Well when you grow, your bones grow and
it causes pain but you know, soon you'll
grow out of it." So fast forward to when I
was in the sixth grade I was I think 11
or 12 and I was going for my annual
checkup at the doctor
and she did my you know
checkup and everything and she's like
"Isabella, you're good. You look healthy
and everything." and then her daughter
stepped in and she's a doctor herself
and she stepped in the room and she was
looking at me strange and I was like
"What?" and she was like "Well your face
looks weird." and I'm like "What are you
talking about?" and she saw that my glance
were actually hanging down and I'm like
six eight inches of hair and my hair was
up at the time because it was hot and
had a narrow face so it was like a
little skinny face and she saw that my
glands were hanging down and she was
like very concerned so she referred me
to an ENT: Ears, Nose and Throat
doctor and he examined me and he did
some blood tests and the next day he
called back and he was like "Well, Ms.
McCray, this case is under my hands but I
would like to refer you to a colleague
of mine that works with the Levine
Children's Hospital which is my present
Rheumatologists today and actually we
saw him the next day and it was actually
a miracle because usually for
anyone to see a doctor at Levene's, it
takes up to three to four months and I
got to see the next day so that was
really incredible. So we saw him the next
day and you know, he examined me and he
did some blood tests and then he was
like "Well Ms. McCray, your daughter has
Lupus. And at the time I was still young
so I didn't know what it was. I thought
it was a common cold. I really didn't
know but my mom knew what it was and he
prescribed me one medication Prednisone
with steroids and in my past
I couldn't you know tie my shoe. I couldn't
take a shower like I wanted to
I couldn't run because I had you know sore
joints and sore muscles so next day
when I took the medicine, I could do all
these things. My mom's like "Man, it's a
miracle." you know and it was a miracle
actually cuz you know I was able to run
I could walk, I could tie my shoe but
then three years ago I had a my first
ever flare-up and I didn't
know how to handle that. I was young.
About lupus, cuz you know, just a disease.
So I looked it up online and I saw the
word, No cure. And that's when it you know
hit me that well, there's no cure for
this. I can die anytime, because of this.
Because there's no cure the only way
that I can manage this sickness is
if I take medications, if
I organize myself and I'm just a child
and you know I want to have fun but I
have to keep it up you know so I
don't have a flair for anything so
that was really hard for me so three
years ago I did have a flare-up and I
was home bound for five to seven months
I was in and out of the hospital at the
time when I went in I was 115. I weighed
115 and then when I got out I was 175 so
I was on pretty tough medications at that time.
Yeah and I know a lot of people
listening will themselves have
experience with Lupus but a lot of
people also will not. And you know for
people that aren't as familiar for your
flare-up with Lupus. What did that
manifest as? Like what were the
symptoms you're experiencing, what were
the challenges that affected you on a
daily basis?
Definitely. So you know
anyone can have sore joints, anyone
can have sore muscles you know they could
be fatigued. They get tired all day like
I have a fever
and those are one of the many symptoms
of Lupus. so Lupus is kind of tricky
to diagnose and you have to,
there's many tests that have to be
done in order to say, hey you do have
Lupus. So it's actually kind of hard to
be diagnosed but some of the symptoms I
did have was sore joints, sore
muscles. I had skin pigmentation because
of the Sun, so I was kind of allergic to
the Sun but I always had to wear
sunscreen as well. Trouble breathing at
time. I'd have fevers that came out of
nowhere. So yeah those are some of the
symptoms that people should be aware of
and that could affect them being diagnosed
Lupus.
So when you experience your first flare-up
3 years ago and you were a homebound
for several months, were you still at school
at the time? Because you're
diagnosed really young and I'm sure that
must have affected how you know your
classmates or teachers or family and
friends, their behavior around you or how
you are actually treated at school. What
was your experience like in relation to
growing up and your childhood and being
in a school environment.
I am a private
person people would like to say. I would
like to keep them myself you know
anything about me I like to keep myself
and at the time when I was having a
flare-up, I was out of school like a lot of
days. I mean, my friends were like
"Well Bella where are you at?" and I'm like
"Well I just don't feel good.
I'll be back the next day." But they know
it was two weeks I was out. I mean like
"You just don't feel good, like what's
happening?" and that's when I had to tell
everyone that I was on the hospital and
I had a flare-up. But I didn't say what
the disease was and it got around school
that I had cancer and that really sucked
because I do not have cancer. So I'd
make it known that I do have Lupus and
that Lupus was an autoimmune disease
where my immune system attacks itself
causing you know a lot of my major
organs to be affected by it. And I did
online schooling while I was in the hospital
but I got better. I had to go to a
physical therapy because I had to
relearn how to walk because of my
immobility with Lupus. So I did like
physical therapy and after that, I went
back to school and everyone was very
supportive. The teachers were
supportive, my friends were supportive.
They actually did a put on Purple Day
for me actually just to show their
support. The whole school. So that was
really great that impacted me a lot but
then I was bullied. And it got around
that I didn't have a weak immune
system and so they used to coughing my
face like cough around me just to pick on
me and that tore me down. I actually
suffered from depression because of that.
I've actually isolated from the class
and that situation was not handled
properly. I don't believe so. But that was
in the past and I'm moving forward.
I actually had to become a
self-advocate for myself because you
know this is happening to me. And so
it's affected me and I have to speak up
about this
How did you manage yourself like how did
you manage emotionally or
psychologically when you're being
bullied and I feel like there's
a double burden of your being bullied
which is hard for any child but then you
also have to educate people about like
what is Lupus and how it affects you and
then at the same time people are using
it against you. My emotions were all over
the place
and I was sad I felt betrayed I was
scared I felt like I was in a like a
tight space and I couldn't get out.
I know like there's people there
that watching me grow in how I made it
up hospital, how made it back to school
how strong I am and how experted I am but
then here are these bullies and
I have to deal with Lupus and how that
brought me down too so it was like a
psychological like warfare a little bit
because all these emotions were going on
and I had a blank space in my head like
everything was just happening all at
once so I had to I had to cope with it
but I had to get it under control
and I had to separate the good from the
bad positive from the negative and I
came back you know to reality and I said
hey I have lupus and this is not gonna
change you know all this negativity has
to stop so yeah. Which is harder said
than done it must be something you still
have to manage right? Yeah it is and it's
tough, believe me it's tough but you know
day by day is going to get better I know
it is. This kind of ties in to the other
part of your identity which is as a
young Black woman do you feel like it's
shaped that experience of just maybe
chronic illness in general or how you
interacted with doctors or nurses do you
feel like being a Black woman has or how
has that shaped it? Because I know
definitely you know statistically it has
affected a lot of people in the health
care system especially if you're Black
if you're a woman so in what ways has
that affected you?
I am a Black woman and I'm very
mature for my age people tell me that
all the time you know I'm organized
I'm structured I'm disciplined and I'm
educated and a society today you know
they stigmatize you know Black women as
the opposite of all those things you
know we're uneducated
we're not disciplined, out of control, all
these things and that is not true and
you know all these things I just listed
are the same exact things that I have to
deal with Lupus too. Not just me being
Black but Lupus as well. So they're all
you know ties in to me being organized
you know I have to organize my
medications. Me being structured. I have to
hold myself a certain way just to please
society and that's not right you know.
Is that or that I have to deal with
lupus but then I have to deal with me
being targeted because I'm a Black
women it's just you know not right. The
rates of Lupus in Black women are high
the factors of getting Lupus you know
some people say some researchers
say that is you know environmental
factors or it can be related to
medications many things like that or
it's because of your race which you know
the Black women we have a
high rate of getting lupus so I think
they do see me different but in a
positive way. Believe me in a positive
way because they want me to get better.
They want me to be in remission. They
want me to be better and to have my
Lupus under control. You're an advocate
for Lupus and you're on social media and
you share a lot of information or
resources and your own story and I
wonder that in your work as advocating
speaking out about Lupus do you see a
lot of people of color that are also
sharing their stories or do you feel
like the conversation might be dominated
by more White patients or patients
different from you. I actually do see
that you know I'm an influencer on
Instagram and me being you know
seventeen
I see a lot of people who advocate there
are White and I really don't see you
know any Black women you know advocating
so you know this year 2020 has been a
really big eye-opener for me because
I've been tagged in posts where I see
all these you know Black women who have
chronic illnesses, they're advocating for
Black Lives Matter, they're advocating
for their illness, they're advocating for
you know that part to impact people and
that has really inspired me to use my
voice not only for the chronic illness
community but for the Black Lives Matter
and that really encouraged me to
step out of my comfort zone and you
know educate people on these things
I think that's amazing and that's one of
the reasons why I really wanted to talk
to you because I think it's also
important to recognize the
intersectionality of these different
identities where you have like invisible
illness patients who struggle a lot on a
daily basis and then you have the Black
community and then to have the
intersection of both is something I
don't think it's talked a lot about
because your experiences are going to be
shaped by different parts of your
identity. One of the other questions some
of our community members might want to
know is today how do you manage your Lupus?
probably medications, physical
therapy, things like that, what are some
tools that you find really really
helpful for you on a daily basis?
Lupus is for me personally, a flare-up is
induced by stress like stress, stress, stress
everything is stress and what's going on
today
with the Black Lives Matter and my
family's Black and my brother's Black
and my father's Black and them being
targeted because of who they are and how
they look you know that stresses me out
a lot and I don't not only have to deal
with that I have to do it my lupus and
have to control it so I won't have a
flare-up
so I usually I meditate a lot I am a
Christian so I do read the Bible I limit
my time in the Sun the Sun can induce
stress so I do have to wear sunscreen
sometimes I have to know when the flare
is coming so I have to
like you said manage everything that you
know go through I have to make sure that
I do take my medications I
usually do not eat breakfast in the
morning so that's kind of tricky at
times. Always good enough sleep because
even though I usually take two hours you
know sleep every single day but I'm
still tired so I have to manage all
these things just to control my lupus
because I've been in remission for three
years now and I did not want to go back
to you know me being in the hospital and
have to go to the same exact thing over
again
what are your sort of plans for the
future looking forward? I am a rising
senior at my high school and my hometown
so the juniors and seniors there they
are able to take college classes at our
Community College so me being a rising
senior being 17 years old I am eligible
to take CNA classes which are Certified
Nursing Assistant classes so hopefully
when I do graduate high school I'll have
my CNA one and I hope to go back to that
exact Community College and register in
their nursing program which is two years
so after that I plan on working as a CNA
during that time when I'm in school
hopefully saving up you know money to
get a car or something and after I do
graduate from that Community College I
plan on working at Levine Children's
Hospitals I did mention earlier that I
was in the hospital there and just to
see you know the love of the nurses and
doctors and how they made me feel better
that's what I want to do you know for
someone else's child and so that's
really a passion of mine is to go back
and work there and then hopefully go to
an actual four-year college
that's freaking amazing that you're like
you're, you grew up in that
hospital and your thoughts of the future
go back to serving you know patients and
families in the hospital too. That's crazy
and that's amazing. Is there any
information or resources people you'd
like people to know about whether it's
to learn about Lupus,
educate people or maybe if for other
lupus patients resources that have been
helpful for you? Like I said I was 17
I am 17 and I target the
younger generation, so the adolescents
young adult category so usually if
people go online and look at Lupus.org
you know they have information that can
help you you know have research on this
how to live with lupus if you are a new
patient or newly diagnosed person with
lupus they have resources for you to get
involved how to donate how to be
advocate for yourself and actually three
years ago I went to a camp
it's called Victory Junction I'm it is
in Wrentham in North Carolina and they
it's a summer camp that helps children
with serious illnesses and honestly it
has impacted my life so so much they the
trishing that are faced with chronic
illnesses they experience you know fun
excitement and it's at no cost so for the
child or the parent and there's like
five hundred kids to go there each
summer so that is an amazing thing
and I've met you know kids my age we do
have lupus and have other autoimmune
diseases and Victory Juction makes you
feel like you know you are a person
without illness they don't you know say
"Hey Bella don't you have lupus?" no is it
"Hey Bella let's have fun" you know so
they don't see you as you know your
illness they see you as you and that is
made it really impact on my life I
become independent I've built more
self-esteem because of it and it's
really you know a part of me so Victory
Junction is a very good place for kids
to go. Bella, where can people find
you if they want to follow your story?
I am @bellamccray
on Instagram and also have a
Facebook Isabella McCray. Also if
you get a chance to check out Flowly I
always love also hearing specifically
from young patients and users
because you guys have a really different
perspective from some of the older users
that might be using it actually did the
intro I'm on day four now actually and I
was pretty nervous about this interview
today so I did. I think the
breathing techniques and that really
helped me a lot like seriously like I
feel my heart rate go down, the
stress and the anxiety was easing and
I'm like wow I did not know an app can
do this to me. That's awesome
Bella I really really appreciate you
being here even though I'm not a chronic
illness patient myself I think working
with them, one thing that I've started
to understand is that there's a common
thread across a lot of chronic illness
experiences but everybody's experience
especially how they got diagnosed the
first symptoms it's all very very
personal individual so any voice to add
to this you know mosaic of awesome
people in this community is just I think
is really really helpful Thank You Bella
Thank you for having me
