• Flowly

Health Talk 05 Navigating Invisible Illness as a Young Adult: conversations on Lupus & Black voices

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

Recent Post