December 5, 2022 • 30 mins
Suffering from inexplicable sores & excruciating pain since he was 5 years old, August searched to uncover what plagued so many years of his life and threatened his mobility. His dreams of a musical theater career quickly faded away as his condition worsened, so August decided to challenge the constant silencing of his symptoms and fight the cause of the irreversible physical damage.
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****** SPOILER ALERT BELOW ******
If you’re looking for more information on Behcet’s, you can check out the American Behcet’s Disease Association by heading to www.behcets.com. You can also find August Rocha on Instagram & TikTok @WithLoveAugust.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
You've been in so much pain that you're like, Wow,
I'm screaming, but it's not helping. What can I do?
What can I do? There's nothing I can do? And
sometimes there were some no two am moments where he's
just having a pan crisis and we needed to get
him anti pain medication. All the puzzles look different, right,
(00:26):
So each of these people are coming in not necessarily
with the same end picture, and so you're putting together
the pieces, but it's not always going to fit perfectly
into any sort of box. I thought my life didn't
have any meaning or didn't need to do anything. How
(00:48):
terrifying would it be to fight an unknown enemy, one
you didn't recognize and didn't see coming. What if that
enemy was coming from within a disease that even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren Bright Pacheco, and this is
symptomatic august ROACHA has an infectious personality that you immediately
(01:36):
pick up on, whether it be talking about musical theater,
Squish Mellows or Brandy Carlyle you can just hear the
joy in his voice. I love squishmallows. What's a squish mellow?
As squish mellow is a type of stuffed animal. I
think they're originally made for children, but of course they're
(01:58):
appropriate for people of all ages. They're just very comforting
and very soft, and so you can't see, but my
my setup here is covered in them, covered in them.
August has been through an extremely difficult and trying medical journey,
but approaches life with authenticity and openness. That's probably part
of why the community he's grown on social media has
(02:20):
resonated so deeply with those who share similar journeys. How
would you describe August to someone who's not met him.
I would describe him as a wonderfully passionate human being.
He just loves to help people. Now he has a
community of over a hundred thousand followers on TikTok, and
(02:42):
he is going above and beyond to try to share
his story and to use that to help educate and
trying to change the world for a better place. I
know that sounds clich but like it really is what
he's doing. That was August's partner, Christine, who has seen
how much of a struggle. Relatively simple, everyday things can
(03:02):
be for August because of his medical condition, but the
first signs of something being wrong started showing up when
he was just five years old, after being left in
a basket and an alley in China as a baby,
he was adopted by a family in Wisconsin. I categorized
my childhood as well sad, but a brilliant beginning because
(03:28):
I was given the gift of coming to America. It's
a big process, and it changes a person, and it
changes the way that we perceived the world. And so
that is how my life started, brand new to a
family and brand new to a country. August's brilliant beginning
was quickly challenged by the unexplained and painful symptoms he
(03:50):
began to develop when he was five years old. While
August was raised female, as he grew into adulthood, he
came to realize his gender identity was different the sex
he was assigned at birth, and eventually transitioned to mail.
That gives August a very unique perspective on his childhood symptoms.
I was in such extreme abdominal pain that I didn't
(04:15):
know what to do. You've been in so much pain
that you're like, wow, I'm I'm screaming, but it's not helping.
What can I do? And you know, being a child,
you know you don't know what's going on. I mean,
you don't know at any age, but my goodness a child.
(04:35):
I was freaking out. And my poor parents they looked
at me and they said, well, you know, at the time,
she she is probably going through some pre menstrual things
age five, I don't know, extreme abdominal pain that couldn't
be explained by what he ate or other environmental triggers.
August symptoms would only escalate when he hit puberty. My
(04:59):
mother there and I were very close at the time,
and she was with me when it happened. I was
actually at a dance conference. I was a dancer at
the time, and I immediately thought, oh, maybe there was
friction in my leotard or in my dance outfit or something,
and she said, no, I don't think that's it. We
(05:20):
have to go to the doctor now. And so I
had skin lesions, sores, and they're not in nice places
there in my agenda's So a lot of people were
asking questions about are you sexually active? And it was no.
I haven't been. I'm a young teenager, you know, I
(05:41):
don't go out, I don't do anything like. I haven't
done anything. And even if I had, why are you
blaming me? You know? So you were misdiagnosed as having
her piece at the age of twelve. Yeah, I was
thinking to myself, what did I do? What did I
do wrong? August was hit by a variety of complex emotions, confusion, isolation,
(06:06):
and even guilt. I don't know if I did process it,
to be honest, because everything moved so quickly. It wasn't
just oh, here these sores. The doctor thinks it's herpes.
How do you handle this? It was oh, the doctor
thinks it's herpes? What did you do? It was immediate,
(06:28):
the immediate shift of viewpoints and stigmatization of said symptoms surreal.
So how was that treated? It wasn't They gave me
light again for the top of it. Eventually, later in
further cases of the same symptoms, I would receive prednisone
(06:50):
for steroids, just a zapp it. But there was never
any real full solution. It was just a lot of
treating symptomatic things that would hopefully, hopefully someday go away,
but never really did. With none of the treatments working.
A part of August knew this diagnosis could not be correct.
But with all the guilt, internal self struggle and stigmatization,
(07:13):
August faced the consequences He couldn't rationalize wreak their own
havoc as his symptoms intensified. So the lesions started presenting
in your privates, but then they migrated to other areas
of your body. At what point did your parents then
realize that this isn't what they thought it was? Well,
(07:37):
pretty early on, because they realized they had made a mistake.
They realized that it wasn't herbies, and they realized that
they had gone down the wrong path of thinking. And
how did it come back? It came back as pain
crisis And that's what we called them. When I'm in
(07:58):
such severe pain and it comes done very quickly, this
severe pain, and it'll just knock me out. And it's
similar to our understanding of seizures in that you lose
all control of your bodily functions, You aren't able to
do much, and you start well, not convulsive, but there's
such pain that that you can kind of see it
(08:20):
zapping through my body. It's weird. It's weird. I don't
know how else to describe it. That it's terrible. And
I kept having those and of course they were written
off as hysteria. On top of the lesions and sores
all over his body, August abdominal pain from his childhood
had now progressed into a full blown pain crisis that
(08:42):
started to make it impossible for him to sustain a
normal life. As the symptoms continued to add up, there
seemed to be no true diagnosis in sight for August,
just an endless search in the dark for something that
felt beyond elusive. What are some other mis diagnoses that
were thrown at you. Let's see ovarian cysts, lots of
(09:06):
ovarian and uterine related diagnoses, none of which were correct.
At one time, they thought I had crones and klitis,
neither of which were true. There was never really like, oh,
this one diagnosis covers all of your symptoms. It was like,
(09:28):
it's got to be crone's plus another thing, because this
doesn't cover it. An associate professor and rheumatologists at Northwestern
dr Anicia Doua knows the struggle of finding a diagnosis
all too well. It sounds like you're putting together the
pieces of a jigsaw puzzle before you can get a
clear indication of what you're looking at. Yeah, and that
(09:50):
along with the fact that all of the puzzles look different, right,
so each of these people are coming in not necessarily
with the same end picture, and so you're putting it
together the pieces, but it's not always going to fit
perfectly into any sort of box, and that can lead
to frustration and other diagnoses, kind of filling in the
gaps before you can get to that final diagnosis. Still
(10:13):
on a long road to the right answers, August was
pursuing his dream, training to sing and dance on Broadway,
all while the pain crises continued to get worse. They
started to spread and cause him to be injured seemingly
all the time. The level of the pain increased, and
then of course there were swollen joints. I started dislocating things.
(10:35):
It was, you know, to the point where the doc
was like, well, if you'd just located anymore, we got
to do surgery. And I was a dancer, I was
a gymnast. By this time, I'm nineteen, I'm training to
be a musical theater professional in New York City, and
training in five in shields a day, you know, leotards,
which aren't great for general source. And my teachers are like,
(11:00):
why do you keep getting injured? What is happening to you?
And we didn't know. We couldn't figure it out. August
had dreamt of being on Broadway for such a long
time that he tied his identity to it, but it
just seemed his body couldn't keep up with his dreams.
When you stake your identity in what you do and
(11:22):
you lose that ability to do what you think is
your life's purpose, it's a deep heartbreak. But also it
takes a lot of your pride. It takes a lot
of your pride because you're realizing that, oh my gosh,
I'm not just my skills? Well who am I? What
(11:44):
does this make me? Now? Am I just a person
who is sick? Is that all I am? I just
wanted to dance, I just wanted to sing, and I
wanted to be happy. And it was a life full
of pain and suffering that I didn't under stand. August
was then hit with a pain crisis that would change
(12:04):
his life, one that would take away some of his
dreams but also move him closer to a final diagnosis
for what had been ailing him for over fifteen years.
Take me from nineteen year old August, full steam ahead,
pursuing dance and performing arts career to one year old August,
(12:28):
now bedridden and immobile. That must have been horrific that
time period, And just give me an idea of that progression.
It was so quick in such a strange way. What
(12:50):
happened was I had a pain crisis and I never
recovered from it. I ended up falling in the street.
My friends had to move me from you know, cars
that we're running in the streets this New York city,
(13:11):
so no one cares, you know, you know, and they're
pulling me through waving, you know, swerving cars and it's
you know, and they call the ambulance and they get
me to the hospital. And it's scary from being so
close to singing and dancing professionally to now almost a
(13:31):
mobile and bedridden. Practically overnight, August life was collapsing all
around him, with no clear direction to alter the course
of his symptoms. I was hospitalized when I was twenty one.
I had lost all ability to walk without mobility aids,
and I was covered in I think it was thirty
(13:56):
genital sores at the time. My joints were swollen, and
I was just like, it was so hard to move, Lauren,
it was so hard to move. I can't imagine how
grueling that must have been. So how long were you hospitalized?
I was hospitalized for a period of a couple of weeks,
(14:19):
maybe a month. The care was lovely from the nurses.
The nurses made the place. Because the doctors told me
that I was lying flat out. They sat me down,
both of them, with my parents, and they said, we
think your daughter is lying so psychosomatic, psychosomatic, psychosomatic, all
(14:41):
of it. You're not being able to walk, you're collapsing
in the street, your incredible pain, your sores, it's all
made up. They said, we'd like to refer you to
our psychology department because this shouldn't be happening. I experience
still a lot of medical gas lighting, a lot of
(15:02):
people telling me that I was hysterical or that my
symptoms were psychosomatic. And I experienced a lot of sexism
and racism. But I don't experience as much of that
now that I present. His masculine August's understanding nature always
came naturally to him. Looking back on a time when
(15:23):
his life was so often in the hands of others,
he could rationalize the doctor's limitations. But August faced many
dark years of isolation that would challenge his resilience and
self fortitude. I was bedridden for a period of almost
four years. It was heartbreaking, to say the least. To
(15:43):
go from dancing for hours upon hours every day to
not being able to get up and go to the
bathroom alone is a life shift that I'm not sure
anyone ever thinks still have to face. I lost pretty
(16:04):
much all of my friends, and so I basically was
living at home with my now ex husband, going to
doctor's appointments when I had them, but doing nothing, nothing
at all, because I thought my life didn't have any
meaning or didn't need to do anything. At this point,
when all hopes seemed lost, there came a light at
(16:26):
the end of the tunnel for August on his diagnosis journey.
He had finally been referred to a specialist who looked
at his symptoms from a different angle, who recognized what
he might be suffering from. I was so relieved to
have some sort of something, a word, a word, a
phrase to hold onto just something. We'll be right back
(16:50):
with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic,
a Medical Mystery Podcast. August Rocha had been suffering from
a mysterious disease since he was five years old. From
severe abdominal pain to sores and lesions all over his body.
(17:12):
August symptoms never seemed to get better with any of
the diagnoses or treatments he received. Desperate for hope, he
was finally referred to a rheumatologist who put the puzzle
pieces of his symptoms together in a way no one
had yet. They said, I think you should see this
doctor because you are a Chinese and she specializes in
Chinese medicine. I said, okay, fair enough. And I saw
(17:37):
this woman and she looked at my chart and she
looked at me, and she says, I know what you have.
And she told me I was probably diagnosed at the
end of age twenty one with the Chet's disease. It's
(18:00):
a rare form of vasculitis that causes inflammation in the
blood vessels, which are everywhere except for your eyes, and
you have to have sores. In addition, you have to
have sores that are either in your eyes your mouth
or your genitals, and you have to have them twice
in those three places in a twelvemonth period. I had
(18:24):
never heard of it. I had never seen the word.
I didn't know how to say it. When you heard that,
when you heard that the diagnosis, you heard the shots,
what went through your body? What went through your mind? Honestly, Lauren,
I was so relieved. I was so relieved to have
(18:45):
some sort of something, a word, a word, a phrase
to hold onto, just something. And I said, oh my gosh,
that's a I can google that. Right. It was like
Christmas in a weird way, because I realized, oh my gosh,
this is a path that I can follow, this is
(19:05):
something that I can research, this is something I can
learn about. But on the opposite side of that token,
it was, oh my god, I have a rare illness.
What is that mean. I've heard of them before, and
I've heard of, you know, the rare illness community, but
I didn't even know. I had no clue, no clue
where to start to look for community, to look for
(19:26):
people like me, that there were people like me. I mean,
I thought I was you know in sci fi movies
where they're like, I'm the last alien from this planet.
That's how I felt. I felt that way the disease
that had been robbing August of his autonomy and quality
of life finally had a name. With a name also
came a sense of relief and calm, knowing now what
(19:49):
he was up against. Here again is Dr Nisha Da
who heads up the Vasculita Center at Northwestern explaining more
about the chats. So Bishets is an autoimmune disorder and
we consider it as in the category under the umbrella
of the vasculinities. Autoimmune diseases are essentially when your immune system,
(20:11):
which should be fighting infections and viruses and all the
bad stuff, basically recognize as a part of your own
body as a problem and starts attacking it for whatever reason,
then eventually causing inflammation and damage to whatever part it is.
So Bisht is a variable vessel vasculitis essentially where different
sizes of the blood vessels in your body can be
(20:31):
inflamed and cause damage. And how difficult is it to
get a proper diagnosis for disease like bischets. It's different
things for different people. Different symptoms that start popping up
and and they kind of build on each other and eventually,
over time, hopefully they get to some sort of diagnosis
and recognition of what exactly is going on. But there
(20:52):
isn't one specific thing. We don't have one genetic mark
or we can check, or one lab test we can check,
or one thing we see under the microscope that's going
to give us a clear, definite diagnosis. It's really more
of a compilation of different clinical features that we think
about to try to piece them together to make the diagnosis. Now,
with a proper diagnosis, August not only felt relief in
(21:15):
the sense that he knew what illness he suffered from,
but also felt a sense of relief letting go of
the self blame. I just needed to know that I
wasn't the one who is causing the problems, that it
wasn't me, because in my mind all this time it was,
oh my gosh, I've been such a burden and I'm
(21:36):
thanking my life. You know, I'm taking down everyone with me.
But it wasn't true. I hadn't done anything. One thing
that is apparent from conversations with August and his partner,
Christine is that neither one sees the other as a burden,
regardless of medical circumstances. How and when did August share
(21:58):
his health struggles with you? And how difficult was that
for him to open up? It was a pretty like
natural conversation because early in our relationship he had to
flare up, so we just had to talk about it,
and so I learned what his symptoms are, how he
(22:18):
navigates those, and what he needs. So there's definitely a
lot of an educational time time for me to really
understand what's going on. But it was pretty seamless because
at the end of the day, you know, I was
seeing August in a lot of pain, and as his partner,
I want to do what I can to help him.
I've never met anyone that cares so deeply for others
(22:40):
and cares so deeply about their well being. And you know,
that's something so beautiful about our community, our transgender community
and also the rare disease community. We have so many loving,
caring people who want to make sure that we're okay.
And she's just one of those people. Yeah, a bright
(23:01):
light in each other's lives. August and Christine have learned
how to best support each other. August still needs assistance
from a walker or a wheelchair, to get around easily,
and even then still has stabilitating pain crises. Instead of
letting it overwhelm him, he's channeled the pain and trauma
this experience into activism for the disabled community, the adopted community,
(23:22):
the queer community, and of course the rare illness community.
I have to say, you really do radiate positivity and that,
particularly in light of the fact that you live with
chronic pain. How did you go through the process of
(23:44):
channeling your diagnosis into activism? Mm hmmm. That really started
in earnest when I realized that I wasn't alone and
that there are people just like me who are waiting
for answers, who are waiting to know that they're not,
(24:07):
you know, losing it, that they're not the problem, that
they're not the reason that their body is betraying them.
And I just want people to know that when they
see me and they listen to what I have to say,
that they are not alone. That there are so many
wonderful people out there who have experienced very similar, heartbreaking
(24:29):
things who know that pain and want to comfort you
and want to stand in solidarity with you and talk
about how okay we can move forward, Okay we can
heal these wounds. We can work to give you help
and give you healing, and we can work to move
towards a future that is brighter. Because that's what I
(24:51):
see for the rare disease community. Because of his openness
and genuine joy about life, August has built up over
a hundred thousand foll the words on TikTok, who are
now all part of a shared community. Even with all
the treatments and research being done on autoimmune diseases, Creating
this sense of community for patients is exactly the type
of thing Dr Dowa says makes an even bigger difference
(25:15):
in their lives. Finding forums where you can kind of
talk about your concerns and share that I think is
a really empowering thing for patients and and it's really
important for them getting better. Honestly, because you can treat
all the clinical symptoms, I can give you a bunch
of immune suppression, I can give you a bunch of
things to try to make you better. But in terms
of like holistic care and actually making someone live their
best life, you know, the drugs aren't going to be enough,
(25:38):
and so you need some other sorts of support and
ways to move forward and cope with some of the
stuff that's going to come up, whether or not it's
your disease flare or a side effect of the medicine,
or just how you feel. August roch A battled through pain, crises,
sores and lesions, overwhelming his body, being told it was
(25:58):
all in his head, being shamed for herpes diagnosis, having
to give up his dreams of a musical theater career,
and being bedridden all to finally have a proper diagnosis,
a treatment plan that is helping, and most importantly, a
community and partner that supports this stage in his journey
is inspiring. Makes me proud, and it just makes me
(26:21):
so happy because August is having an impact on people's
lives in a positive way. Like he's kind of like
a light in the darkness in a sense as as
I to describe, because like with his compassion and with
his love of people, he creates a safe space for
people to go to feel empowered, to forget a lot
(26:45):
of awfulness that's in the world. I say this probably
once a day to my girlfriend. Being queer is such
a gift. Being trans is such a gift, And when
you combine that with being disabled, you've got a wonderful
intersectionality of a human with vast understandings of the world
(27:07):
through lived experience, through community, and so there's someone out
there who knows what you're going through. Even if you're
the most trans, queer, diverse, intersectional person that exists, someone
out there sees you and goes a thank you, family,
(27:28):
I've found it. I'm not alone. You are never ever alone.
And in terms of advice that you would give someone
else who is struggling to find answers and a diagnosis
for what they're going through, what advice would you give them,
(27:49):
I would give the advice to be as kind to
yourself as you can. And that's a lot easier said
than done, of course. But my advice then goes for
eire to say, make sure that the people around you
are really supporting you, because I know that's a huge
job to experience all these things and beyond the lookout
(28:10):
for people who aren't caring for you. But if people
aren't caring for you, if people do not want to
believe you, if people do not want to see that
you are truly in pain, you do not need that
extra pain in your life. That is extra pain. You know,
if you're looking for more information on bishets, you can
check out the American Bishet's Disease Association by heading to
(28:32):
www dot Bischets dot com. That's b E h c
e t s dot com. My name is August Rocha.
I am a man who has been battling with this
diagnosis for over sixteen years and counting. But I'm a
(28:53):
Bishets warrior, and I'm happy to say it. This is
the season from the Alley of Symptomatic, so we just
wanted to thank all of our guests for sharing their
stories and thank all of you listeners for joining us
each week. We'll be back next year to explore more
stories of people who have battled unknown illnesses, searching for
(29:14):
diagnoses that baffled their doctors. My name is Athena Jeer Bollini.
I'm Naobi Ricks. My name is Kyle Thompson, Camrad Laws.
I'm in swan It Monica o'ka. My name is Shelby
Zach Dobeck. And when I was eleven years old, I
(29:35):
struggled for thirteen years, and I struggled with a medical
mystery for almost two decades. For fifteen years, I struggled
with disease and for nineteen years I struggled with a
disease that was misdiagnosed symptomatic. A Medical Mystery Podcast is
(29:55):
an original podcast from I Heart Radio. Are shows hosted
by me Lauren Bright Pacheco. Executive producers are Matt Romano
and myself. Our EP of post production is James Foster.
Our producers are Cierra Kaiser and John Irwin. M
You've been in so much pain that you're like, Wow,
I'm screaming, but it's not helping. What can I do?
What can I do? There's nothing I can do? And
sometimes there were some no two am moments where he's
just having a pan crisis and we needed to get
him anti pain medication. All the puzzles look different, right,
(00:26):
So each of these people are coming in not necessarily
with the same end picture, and so you're putting together
the pieces, but it's not always going to fit perfectly
into any sort of box. I thought my life didn't
have any meaning or didn't need to do anything. How
(00:48):
terrifying would it be to fight an unknown enemy, one
you didn't recognize and didn't see coming. What if that
enemy was coming from within a disease that even doctors
couldn't identify. Nearly half of all Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis. These
(01:12):
are their stories. I'm Lauren Bright Pacheco, and this is
symptomatic august ROACHA has an infectious personality that you immediately
(01:36):
pick up on, whether it be talking about musical theater,
Squish Mellows or Brandy Carlyle you can just hear the
joy in his voice. I love squishmallows. What's a squish mellow?
As squish mellow is a type of stuffed animal. I
think they're originally made for children, but of course they're
(01:58):
appropriate for people of all ages. They're just very comforting
and very soft, and so you can't see, but my
my setup here is covered in them, covered in them.
August has been through an extremely difficult and trying medical journey,
but approaches life with authenticity and openness. That's probably part
of why the community he's grown on social media has
(02:20):
resonated so deeply with those who share similar journeys. How
would you describe August to someone who's not met him.
I would describe him as a wonderfully passionate human being.
He just loves to help people. Now he has a
community of over a hundred thousand followers on TikTok, and
(02:42):
he is going above and beyond to try to share
his story and to use that to help educate and
trying to change the world for a better place. I
know that sounds clich but like it really is what
he's doing. That was August's partner, Christine, who has seen
how much of a struggle. Relatively simple, everyday things can
(03:02):
be for August because of his medical condition, but the
first signs of something being wrong started showing up when
he was just five years old, after being left in
a basket and an alley in China as a baby,
he was adopted by a family in Wisconsin. I categorized
my childhood as well sad, but a brilliant beginning because
(03:28):
I was given the gift of coming to America. It's
a big process, and it changes a person, and it
changes the way that we perceived the world. And so
that is how my life started, brand new to a
family and brand new to a country. August's brilliant beginning
was quickly challenged by the unexplained and painful symptoms he
(03:50):
began to develop when he was five years old. While
August was raised female, as he grew into adulthood, he
came to realize his gender identity was different the sex
he was assigned at birth, and eventually transitioned to mail.
That gives August a very unique perspective on his childhood symptoms.
I was in such extreme abdominal pain that I didn't
(04:15):
know what to do. You've been in so much pain
that you're like, wow, I'm I'm screaming, but it's not helping.
What can I do? And you know, being a child,
you know you don't know what's going on. I mean,
you don't know at any age, but my goodness a child.
(04:35):
I was freaking out. And my poor parents they looked
at me and they said, well, you know, at the time,
she she is probably going through some pre menstrual things
age five, I don't know, extreme abdominal pain that couldn't
be explained by what he ate or other environmental triggers.
August symptoms would only escalate when he hit puberty. My
(04:59):
mother there and I were very close at the time,
and she was with me when it happened. I was
actually at a dance conference. I was a dancer at
the time, and I immediately thought, oh, maybe there was
friction in my leotard or in my dance outfit or something,
and she said, no, I don't think that's it. We
(05:20):
have to go to the doctor now. And so I
had skin lesions, sores, and they're not in nice places
there in my agenda's So a lot of people were
asking questions about are you sexually active? And it was no.
I haven't been. I'm a young teenager, you know, I
(05:41):
don't go out, I don't do anything like. I haven't
done anything. And even if I had, why are you
blaming me? You know? So you were misdiagnosed as having
her piece at the age of twelve. Yeah, I was
thinking to myself, what did I do? What did I
do wrong? August was hit by a variety of complex emotions, confusion, isolation,
(06:06):
and even guilt. I don't know if I did process it,
to be honest, because everything moved so quickly. It wasn't
just oh, here these sores. The doctor thinks it's herpes.
How do you handle this? It was oh, the doctor
thinks it's herpes? What did you do? It was immediate,
(06:28):
the immediate shift of viewpoints and stigmatization of said symptoms surreal.
So how was that treated? It wasn't They gave me
light again for the top of it. Eventually, later in
further cases of the same symptoms, I would receive prednisone
(06:50):
for steroids, just a zapp it. But there was never
any real full solution. It was just a lot of
treating symptomatic things that would hopefully, hopefully someday go away,
but never really did. With none of the treatments working.
A part of August knew this diagnosis could not be correct.
But with all the guilt, internal self struggle and stigmatization,
(07:13):
August faced the consequences He couldn't rationalize wreak their own
havoc as his symptoms intensified. So the lesions started presenting
in your privates, but then they migrated to other areas
of your body. At what point did your parents then
realize that this isn't what they thought it was? Well,
(07:37):
pretty early on, because they realized they had made a mistake.
They realized that it wasn't herbies, and they realized that
they had gone down the wrong path of thinking. And
how did it come back? It came back as pain
crisis And that's what we called them. When I'm in
(07:58):
such severe pain and it comes done very quickly, this
severe pain, and it'll just knock me out. And it's
similar to our understanding of seizures in that you lose
all control of your bodily functions, You aren't able to
do much, and you start well, not convulsive, but there's
such pain that that you can kind of see it
(08:20):
zapping through my body. It's weird. It's weird. I don't
know how else to describe it. That it's terrible. And
I kept having those and of course they were written
off as hysteria. On top of the lesions and sores
all over his body, August abdominal pain from his childhood
had now progressed into a full blown pain crisis that
(08:42):
started to make it impossible for him to sustain a
normal life. As the symptoms continued to add up, there
seemed to be no true diagnosis in sight for August,
just an endless search in the dark for something that
felt beyond elusive. What are some other mis diagnoses that
were thrown at you. Let's see ovarian cysts, lots of
(09:06):
ovarian and uterine related diagnoses, none of which were correct.
At one time, they thought I had crones and klitis,
neither of which were true. There was never really like, oh,
this one diagnosis covers all of your symptoms. It was like,
(09:28):
it's got to be crone's plus another thing, because this
doesn't cover it. An associate professor and rheumatologists at Northwestern
dr Anicia Doua knows the struggle of finding a diagnosis
all too well. It sounds like you're putting together the
pieces of a jigsaw puzzle before you can get a
clear indication of what you're looking at. Yeah, and that
(09:50):
along with the fact that all of the puzzles look different, right,
so each of these people are coming in not necessarily
with the same end picture, and so you're putting it
together the pieces, but it's not always going to fit
perfectly into any sort of box, and that can lead
to frustration and other diagnoses, kind of filling in the
gaps before you can get to that final diagnosis. Still
(10:13):
on a long road to the right answers, August was
pursuing his dream, training to sing and dance on Broadway,
all while the pain crises continued to get worse. They
started to spread and cause him to be injured seemingly
all the time. The level of the pain increased, and
then of course there were swollen joints. I started dislocating things.
(10:35):
It was, you know, to the point where the doc
was like, well, if you'd just located anymore, we got
to do surgery. And I was a dancer, I was
a gymnast. By this time, I'm nineteen, I'm training to
be a musical theater professional in New York City, and
training in five in shields a day, you know, leotards,
which aren't great for general source. And my teachers are like,
(11:00):
why do you keep getting injured? What is happening to you?
And we didn't know. We couldn't figure it out. August
had dreamt of being on Broadway for such a long
time that he tied his identity to it, but it
just seemed his body couldn't keep up with his dreams.
When you stake your identity in what you do and
(11:22):
you lose that ability to do what you think is
your life's purpose, it's a deep heartbreak. But also it
takes a lot of your pride. It takes a lot
of your pride because you're realizing that, oh my gosh,
I'm not just my skills? Well who am I? What
(11:44):
does this make me? Now? Am I just a person
who is sick? Is that all I am? I just
wanted to dance, I just wanted to sing, and I
wanted to be happy. And it was a life full
of pain and suffering that I didn't under stand. August
was then hit with a pain crisis that would change
(12:04):
his life, one that would take away some of his
dreams but also move him closer to a final diagnosis
for what had been ailing him for over fifteen years.
Take me from nineteen year old August, full steam ahead,
pursuing dance and performing arts career to one year old August,
(12:28):
now bedridden and immobile. That must have been horrific that
time period, And just give me an idea of that progression.
It was so quick in such a strange way. What
(12:50):
happened was I had a pain crisis and I never
recovered from it. I ended up falling in the street.
My friends had to move me from you know, cars
that we're running in the streets this New York city,
(13:11):
so no one cares, you know, you know, and they're
pulling me through waving, you know, swerving cars and it's
you know, and they call the ambulance and they get
me to the hospital. And it's scary from being so
close to singing and dancing professionally to now almost a
(13:31):
mobile and bedridden. Practically overnight, August life was collapsing all
around him, with no clear direction to alter the course
of his symptoms. I was hospitalized when I was twenty one.
I had lost all ability to walk without mobility aids,
and I was covered in I think it was thirty
(13:56):
genital sores at the time. My joints were swollen, and
I was just like, it was so hard to move, Lauren,
it was so hard to move. I can't imagine how
grueling that must have been. So how long were you hospitalized?
I was hospitalized for a period of a couple of weeks,
(14:19):
maybe a month. The care was lovely from the nurses.
The nurses made the place. Because the doctors told me
that I was lying flat out. They sat me down,
both of them, with my parents, and they said, we
think your daughter is lying so psychosomatic, psychosomatic, psychosomatic, all
(14:41):
of it. You're not being able to walk, you're collapsing
in the street, your incredible pain, your sores, it's all
made up. They said, we'd like to refer you to
our psychology department because this shouldn't be happening. I experience
still a lot of medical gas lighting, a lot of
(15:02):
people telling me that I was hysterical or that my
symptoms were psychosomatic. And I experienced a lot of sexism
and racism. But I don't experience as much of that
now that I present. His masculine August's understanding nature always
came naturally to him. Looking back on a time when
(15:23):
his life was so often in the hands of others,
he could rationalize the doctor's limitations. But August faced many
dark years of isolation that would challenge his resilience and
self fortitude. I was bedridden for a period of almost
four years. It was heartbreaking, to say the least. To
(15:43):
go from dancing for hours upon hours every day to
not being able to get up and go to the
bathroom alone is a life shift that I'm not sure
anyone ever thinks still have to face. I lost pretty
(16:04):
much all of my friends, and so I basically was
living at home with my now ex husband, going to
doctor's appointments when I had them, but doing nothing, nothing
at all, because I thought my life didn't have any
meaning or didn't need to do anything. At this point,
when all hopes seemed lost, there came a light at
(16:26):
the end of the tunnel for August on his diagnosis journey.
He had finally been referred to a specialist who looked
at his symptoms from a different angle, who recognized what
he might be suffering from. I was so relieved to
have some sort of something, a word, a word, a
phrase to hold onto just something. We'll be right back
(16:50):
with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic,
a Medical Mystery Podcast. August Rocha had been suffering from
a mysterious disease since he was five years old. From
severe abdominal pain to sores and lesions all over his body.
(17:12):
August symptoms never seemed to get better with any of
the diagnoses or treatments he received. Desperate for hope, he
was finally referred to a rheumatologist who put the puzzle
pieces of his symptoms together in a way no one
had yet. They said, I think you should see this
doctor because you are a Chinese and she specializes in
Chinese medicine. I said, okay, fair enough. And I saw
(17:37):
this woman and she looked at my chart and she
looked at me, and she says, I know what you have.
And she told me I was probably diagnosed at the
end of age twenty one with the Chet's disease. It's
(18:00):
a rare form of vasculitis that causes inflammation in the
blood vessels, which are everywhere except for your eyes, and
you have to have sores. In addition, you have to
have sores that are either in your eyes your mouth
or your genitals, and you have to have them twice
in those three places in a twelvemonth period. I had
(18:24):
never heard of it. I had never seen the word.
I didn't know how to say it. When you heard that,
when you heard that the diagnosis, you heard the shots,
what went through your body? What went through your mind? Honestly, Lauren,
I was so relieved. I was so relieved to have
(18:45):
some sort of something, a word, a word, a phrase
to hold onto, just something. And I said, oh my gosh,
that's a I can google that. Right. It was like
Christmas in a weird way, because I realized, oh my gosh,
this is a path that I can follow, this is
(19:05):
something that I can research, this is something I can
learn about. But on the opposite side of that token,
it was, oh my god, I have a rare illness.
What is that mean. I've heard of them before, and
I've heard of, you know, the rare illness community, but
I didn't even know. I had no clue, no clue
where to start to look for community, to look for
(19:26):
people like me, that there were people like me. I mean,
I thought I was you know in sci fi movies
where they're like, I'm the last alien from this planet.
That's how I felt. I felt that way the disease
that had been robbing August of his autonomy and quality
of life finally had a name. With a name also
came a sense of relief and calm, knowing now what
(19:49):
he was up against. Here again is Dr Nisha Da
who heads up the Vasculita Center at Northwestern explaining more
about the chats. So Bishets is an autoimmune disorder and
we consider it as in the category under the umbrella
of the vasculinities. Autoimmune diseases are essentially when your immune system,
(20:11):
which should be fighting infections and viruses and all the
bad stuff, basically recognize as a part of your own
body as a problem and starts attacking it for whatever reason,
then eventually causing inflammation and damage to whatever part it is.
So Bisht is a variable vessel vasculitis essentially where different
sizes of the blood vessels in your body can be
(20:31):
inflamed and cause damage. And how difficult is it to
get a proper diagnosis for disease like bischets. It's different
things for different people. Different symptoms that start popping up
and and they kind of build on each other and eventually,
over time, hopefully they get to some sort of diagnosis
and recognition of what exactly is going on. But there
(20:52):
isn't one specific thing. We don't have one genetic mark
or we can check, or one lab test we can check,
or one thing we see under the microscope that's going
to give us a clear, definite diagnosis. It's really more
of a compilation of different clinical features that we think
about to try to piece them together to make the diagnosis. Now,
with a proper diagnosis, August not only felt relief in
(21:15):
the sense that he knew what illness he suffered from,
but also felt a sense of relief letting go of
the self blame. I just needed to know that I
wasn't the one who is causing the problems, that it
wasn't me, because in my mind all this time it was,
oh my gosh, I've been such a burden and I'm
(21:36):
thanking my life. You know, I'm taking down everyone with me.
But it wasn't true. I hadn't done anything. One thing
that is apparent from conversations with August and his partner,
Christine is that neither one sees the other as a burden,
regardless of medical circumstances. How and when did August share
(21:58):
his health struggles with you? And how difficult was that
for him to open up? It was a pretty like
natural conversation because early in our relationship he had to
flare up, so we just had to talk about it,
and so I learned what his symptoms are, how he
(22:18):
navigates those, and what he needs. So there's definitely a
lot of an educational time time for me to really
understand what's going on. But it was pretty seamless because
at the end of the day, you know, I was
seeing August in a lot of pain, and as his partner,
I want to do what I can to help him.
I've never met anyone that cares so deeply for others
(22:40):
and cares so deeply about their well being. And you know,
that's something so beautiful about our community, our transgender community
and also the rare disease community. We have so many loving,
caring people who want to make sure that we're okay.
And she's just one of those people. Yeah, a bright
(23:01):
light in each other's lives. August and Christine have learned
how to best support each other. August still needs assistance
from a walker or a wheelchair, to get around easily,
and even then still has stabilitating pain crises. Instead of
letting it overwhelm him, he's channeled the pain and trauma
this experience into activism for the disabled community, the adopted community,
(23:22):
the queer community, and of course the rare illness community.
I have to say, you really do radiate positivity and that,
particularly in light of the fact that you live with
chronic pain. How did you go through the process of
(23:44):
channeling your diagnosis into activism? Mm hmmm. That really started
in earnest when I realized that I wasn't alone and
that there are people just like me who are waiting
for answers, who are waiting to know that they're not,
(24:07):
you know, losing it, that they're not the problem, that
they're not the reason that their body is betraying them.
And I just want people to know that when they
see me and they listen to what I have to say,
that they are not alone. That there are so many
wonderful people out there who have experienced very similar, heartbreaking
(24:29):
things who know that pain and want to comfort you
and want to stand in solidarity with you and talk
about how okay we can move forward, Okay we can
heal these wounds. We can work to give you help
and give you healing, and we can work to move
towards a future that is brighter. Because that's what I
(24:51):
see for the rare disease community. Because of his openness
and genuine joy about life, August has built up over
a hundred thousand foll the words on TikTok, who are
now all part of a shared community. Even with all
the treatments and research being done on autoimmune diseases, Creating
this sense of community for patients is exactly the type
of thing Dr Dowa says makes an even bigger difference
(25:15):
in their lives. Finding forums where you can kind of
talk about your concerns and share that I think is
a really empowering thing for patients and and it's really
important for them getting better. Honestly, because you can treat
all the clinical symptoms, I can give you a bunch
of immune suppression, I can give you a bunch of
things to try to make you better. But in terms
of like holistic care and actually making someone live their
best life, you know, the drugs aren't going to be enough,
(25:38):
and so you need some other sorts of support and
ways to move forward and cope with some of the
stuff that's going to come up, whether or not it's
your disease flare or a side effect of the medicine,
or just how you feel. August roch A battled through pain, crises,
sores and lesions, overwhelming his body, being told it was
(25:58):
all in his head, being shamed for herpes diagnosis, having
to give up his dreams of a musical theater career,
and being bedridden all to finally have a proper diagnosis,
a treatment plan that is helping, and most importantly, a
community and partner that supports this stage in his journey
is inspiring. Makes me proud, and it just makes me
(26:21):
so happy because August is having an impact on people's
lives in a positive way. Like he's kind of like
a light in the darkness in a sense as as
I to describe, because like with his compassion and with
his love of people, he creates a safe space for
people to go to feel empowered, to forget a lot
(26:45):
of awfulness that's in the world. I say this probably
once a day to my girlfriend. Being queer is such
a gift. Being trans is such a gift, And when
you combine that with being disabled, you've got a wonderful
intersectionality of a human with vast understandings of the world
(27:07):
through lived experience, through community, and so there's someone out
there who knows what you're going through. Even if you're
the most trans, queer, diverse, intersectional person that exists, someone
out there sees you and goes a thank you, family,
(27:28):
I've found it. I'm not alone. You are never ever alone.
And in terms of advice that you would give someone
else who is struggling to find answers and a diagnosis
for what they're going through, what advice would you give them,
(27:49):
I would give the advice to be as kind to
yourself as you can. And that's a lot easier said
than done, of course. But my advice then goes for
eire to say, make sure that the people around you
are really supporting you, because I know that's a huge
job to experience all these things and beyond the lookout
(28:10):
for people who aren't caring for you. But if people
aren't caring for you, if people do not want to
believe you, if people do not want to see that
you are truly in pain, you do not need that
extra pain in your life. That is extra pain. You know,
if you're looking for more information on bishets, you can
check out the American Bishet's Disease Association by heading to
(28:32):
www dot Bischets dot com. That's b E h c
e t s dot com. My name is August Rocha.
I am a man who has been battling with this
diagnosis for over sixteen years and counting. But I'm a
(28:53):
Bishets warrior, and I'm happy to say it. This is
the season from the Alley of Symptomatic, so we just
wanted to thank all of our guests for sharing their
stories and thank all of you listeners for joining us
each week. We'll be back next year to explore more
stories of people who have battled unknown illnesses, searching for
(29:14):
diagnoses that baffled their doctors. My name is Athena Jeer Bollini.
I'm Naobi Ricks. My name is Kyle Thompson, Camrad Laws.
I'm in swan It Monica o'ka. My name is Shelby
Zach Dobeck. And when I was eleven years old, I
(29:35):
struggled for thirteen years, and I struggled with a medical
mystery for almost two decades. For fifteen years, I struggled
with disease and for nineteen years I struggled with a
disease that was misdiagnosed symptomatic. A Medical Mystery Podcast is
(29:55):
an original podcast from I Heart Radio. Are shows hosted
by me Lauren Bright Pacheco. Executive producers are Matt Romano
and myself. Our EP of post production is James Foster.
Our producers are Cierra Kaiser and John Irwin. M
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