They did an assessment. They said, well, you're
kinda you're a few points under depressed, so
you're not depressed. And then that was kinda
the end of it. They were like, well,
if you need some more help, you should
reach out. But I remember thinking, like, something
is still wrong. I need help. And and
so, like, it doesn't have to have a
name, but I still need support.
Welcome to Boundless Bee, the Hemophilia Bee podcast.
The podcast standing with you from a family
like yours, presented by the Coalition for Hemophilia
Bee in partnership with Balancing Life's Issues.
We often talk about the the physical side
of bleeding disorders, but today we're focusing on
the mental and emotional journey, grief, the questions,
the courage, and the importance of being seen
and supported. And to help us do that,
we have asked doctor Mosey Williams, licensed clinical
social worker at UCSF's
adult hemophilia treatment center, longtime advocate, speaker, and
community leader to join us today. Welcome to
the podcast, doctor Mosse. Hey. Thanks, Kai. Yeah.
It's wonderful to have you. Start with a
little bit of your background with hemophilia.
Just let our listeners know what your background
there is.
Sure. So I have, severe hemophilia a. Was
diagnosed shortly after birth, had a hematoma,
and found out
then, that I had hemophilia. And so first
one in my family, first child of my
mom that
we knew about. My mom was a carrier
is a carrier. So I'm 48 years old.
So treatment at that time, this late seventies,
cryoprecipitate,
so kinda born during the the HIV AIDS
hepatitis
epidemic. And so
it was just it was a scary time
for our community. I contracted hepatitis c through
treatment. I did not contract HIV.
But due to that time, there were periods
where we would not take
replacement treatment because of the fear of that.
So I remember
being young and having a bleed
and not having any factor and just
being I remember my mom just telling me,
lay down and just think of,
visualize being in a cold room with ice
and trying to, like, calm myself down because
of the fear of using the treatments at
the time. And so
to go from that
and then where treatments became more safe, and
then I developed an inhibitor,
which basically means the body fighting off
the factor treatment or the treatment for hemophilia
a, developing antibodies to that treatment. And so
as a result,
I ended up taking
factor
nine products or hemophilia b products. They didn't
have bypassing agents
at that time the way that they do
it currently.
And so that was my first exposure to
what hemophilia b was. And so these times
of uncertainty so it's like one thing. Okay.
Mhmm. Don't know what treatment's gonna work. And
that works, and all of a sudden, that's
not working. And then I have hep c,
and then then this treatment's not working. So
continually trying to find different things and finally
was able to tolerize,
meaning you find a a certain amount of
factor eight or he for hemophilia a that
I could use that my body would not
reject. And that was at around age 20.
Wow. So a lot of up and down
before that time.
And so
I can remember just being frustrated in and
out of the hospital and, honestly,
you know, kind of tired of it, not
really wanting to deal with it anymore.
And so I think from that
and having supportive people, supportive mentors, and medical
team, medical staff is what made me want
to go into being a hemophilia social worker
myself.
Yeah. Wow. I mean, thank you for sharing.
I know that is gonna be very familiar
to a lot of people, especially the the
emotional struggles. So can you talk to us
a little bit because this is your expertise,
like, this emotional journey that hemophilia patients kinda
go on. And can you take us back,
like, you know, what's that like as a
kid, right, when your mom's telling you to
lay lay still and and act like you're
in an ice bath,
to, like, the struggles in early adulthood to
what seemed like
not great news time and time again. Right?
Can you talk to us about what that
does to us as young people and how
we kind of, like, hold on to that
in our adult lives?
Yes.
I remember having bleeds and then not being
able to walk
and then not wanting to go to school
because I didn't wanna use crutches and I
didn't wanna be seen different because I had
gone before people you know, kids, so, you
know, they don't understand
differences sometimes and they'll make fun of you.
So I didn't wanna go. And it got
to a point where my parents, mom and
dad said, well, you have to go to
school because you can't keep missing school. Because,
you know, you can have crutches. You can
go. You can actually be there. It's just
the shame and the fear of going. Mhmm.
And so
through those kind of times, I eventually did
go back to school.
I lost confidence. My esteem was low because
I just felt like
I felt like an outsider.
Mhmm. I wasn't able to participate in activities.
Sports I loved growing up, but I always
was having bleeds, so I wasn't able to
participate as I woulda wanted to.
And so
going into college, and then I had a
really when I started to have more serious
bleeds, I really
became depressed.
And, I remember I had a job just
working at the dean's office, and they they
said, well, you know, you probably should talk
to somebody.
Mhmm. You probably should go to the counseling
center. And that was the first time I
went to counseling.
And I went,
and I found it helpful. And and this
kinda plays into the rest of,
the story is that they they did an
assessment. They said, well, you're kinda you're a
few points under depressed, so you're not depressed.
And then that was kinda the end of
it. They were like, well, if you need
some more help in the future, reach out.
But I remember thinking, like, something is still
wrong. Yeah. I need I need help. Right.
I need help. And and so, like, it
doesn't have to have a name, but I
still need support. Right. And and and so
that was something that kind of later in
life in terms of my own journey and
then trying to help others. Like, we don't
have to have a name for this, but
what kind of support can we give and
when we look forward to to get some
help?
Right. So you're you're saying that that moment
for you is kind of when you made
that decision to get into, like, more of
the social work side of things because you
knew there are people out there who need
help who aren't maybe necessarily, like, clinically
depressed or, like Right. Right. Defined by those
terms. Right. Or defined by those terms. Or
if it's if the, you know, clinicians we
all we make mistakes or they missed it.
It just didn't show up on that because
sometimes people will,
will minimize symptoms. And so, therefore, you know,
some things won't won't register. And so all
of that. All of that. Gotcha.
So, you know, I think when it comes
to, like, the physical
versus the kind of emotional, mental
piece of navigating hemophilia,
like, what are what are some basic tools
or practices that, you know, the our community,
those listening,
can maybe practice daily, in in a way
to better help better support their emotional emotional
I feel like one is connection,
and I think sometimes when things happen to
us, we tend to isolate.
You know, we may step back from others
because we're ashamed or afraid or embarrassed,
don't wanna be judged, or or whatever it
may be. But we have a strong oblivious
source community
of people who have been through
not necessarily the exact same thing, but similar
things and can relate and are looking
to support others, to be a mentor to
others, a a unk, aunt to auntie, father,
brother, cousin. They're looking to support others, and
they're looking for support.
And so there is something that you can
give in that way. I would say reaching
into community, community events. A tough one that's
kind of a two sided is gratitude because
the same time,
you know, we're angry at what has happened
to us.
Hard to be grateful sometimes. Right. Right. But
even in that, it's like, you know, I
have I'm still here. I have today. There
are certain things that I can do
that
other people are unable.
And I remember when I first had a
hip replacement, and I was in a senior's
water class trying to, you know, do rehab.
And I'm the only I was at the
time, I think I was 30, I think,
or late twenties.
And I remember there was a senior in
the class, and he said
he said to me, he said, I'm a
millionaire. He said, and I'd give it all
to be where you are.
Mhmm. You know? And I just hadn't thought
about it in that way, and I'm here
I am coming off of a replacement.
And just so the perspective perspective is is
something that
it may take some time to get there
in terms of gratitude, but there are some
things
that we do have that we may take
for granted just in in all of the
other the challenges that we deal with. I
know a big piece of what, this community
kinda navigates is is grief, right, and and
loss of loved ones and loss of
somebody maybe I saw at a meeting last
year, and they're not here anymore. So I
know you have a personal story around loss
and grief, and that really deepened your commitment
to this emotional piece of advocacy. Can you
can you talk to us about that?
Yes. I can remember growing up, and then
we were at
we would go to camp each year. And
then when the HIV, AIDS epidemic happened, all
of a sudden, every year, we would do
do our annual visit with our social worker,
me and my brother. I have a two
brothers with hemophilia. And, we would go and
talk to social work and look at all
the pictures from camp and say, how's they're
doing? How's this kid doing? And then,
you know, they say, oh, they're doing this.
And then all of a sudden, one year,
they all the kids we asked about were
no longer alive. They were gone. They had
passed away. And I remember looking at my
brother. We didn't really understand what was happening.
And and so having
that experience of losing people in our community
is traumatic.
I remember being in the hospital and my
friends coming to visit me, and feeling like
looking at me, having a tough time, and
then feeling that they might be next. And
so there's that fear and uncertainty.
How I came to be connected to the
hemophilia b community in a more formal way
was we had at a point in our
community,
we had some blood brothers who had died
by suicide, and I was asked to help
navigate a conversation around that. So I I
was able to just just hold a space
for others to talk about, you know, when
we have, you know, depressive symptoms and mood
changes and diff different things and and think
about, you know, maybe not being here anymore.
What would it be like if I didn't
have to go through this anymore? Mhmm. And
just having a conversation about it because research
tells us that talking about these things does
not increase the likelihood of committing suicide.
Right. But we're having thoughts, so we need
to normalize that that it's okay to think
about things because we don't know what to
do as humans. We're trying to figure out
how to cope,
but what we do after that is the
key. Yeah. And so, yeah, you you use
the the the word normalization. Right?
Creating forums and creating space for people to
feel vulnerable and and ask ask questions and
explain
explain how they're feeling amongst community, amongst people
who have shared experience. So but can we
talk a little bit about creating that space
for someone to say, I'm not okay? Can
you, like Mhmm. Maybe walk somebody through
if they're having that apprehension to be able
to say those words out loud to somebody?
Like, what what would you tell them?
I would start with
my own path,
sharing my own story of being being there
and having to to say that. And Mhmm.
And I think a key is,
identifying,
safe people that you can share with. Right.
You know, that may be able to handle
something like that. Mhmm. I can remember
going
I was working in the ER and then
had to witness children being taken away by
child protective services. You know, there was some
abuse in a home, and then the parent
had to have the kids removed. They didn't
know they're gonna be removed. The parent was
still seven months pregnant with another child, and
then it it was just a traumatic experience
to witness. And I remember breaking down after
that. Mhmm. And then I saw a friend
later that day, and he was like, how
are you doing? I was like, I'm struggling
right now. Yeah. You know? And but this
was somebody I could trust and talk to
about that. And so in setting this conversation
in a room talking about depression, talking about
suicide,
sharing my story, and then I as we
are in the room,
identifying that this is a safe space to
talk about these things. Right. And so then
everybody who's a part of this that chose
to be a part of the discussion
or the group or whatever whatever you
they can look around the room and see,
okay. This is somebody who who sees me,
and I can share with this person, whether
it's after this or during this session. Mhmm.
And so that's part of it too. It's
like,
you know, normalizing.
It's okay to feel
overwhelmed. It's okay to be frustrated, angry, depressed.
It's okay.
It's a part of life.
How do we respond to it is where
the work happens. Yeah. So, you know, finding
a loved one, a friend Mhmm. A community
member, you know, hemophilia b. Right? There's so
many opportunities for people in this community to
to come together and engage in this conversation.
But I think, you know, when it comes
to, like, speaking to a clinician or getting
mental health support, like, what are some warning
signs
that might mean I may I might need
to take this a step further and and
speak to a professional? I think and then
and as you like, you know, when we
think about clinicians, crisis lines are always available
to listen as well. Right? You know, like
988.
You know, we have
these outlets that that people that can handle
it. Because sometimes our family members
or friends can't handle hearing these things. I
think one thing one side for
people that may need additional support is if
we find ourselves telling the same story
to everyone.
You know?
And it seems like somebody might kinda be
stuck in a certain place. Mhmm. You know?
Because conversations may not be conversation that turns
into, like,
me sharing this that I've been through. Yeah.
And then I'm not able to hear
other parts of what other people are saying
because I'm stuck at this place. And that's
one sign I see. You know, in just
in talking with people, working with people, that
somebody might need additional support. If you hear,
you know, a tone, of of hopelessness
or or questioning, you know, kind of a
existential question about about life,
you know, wondering
someone's value
Mhmm. You know, what value they bring. Those
are, you know, times when you hear that
and you're think I I for me as
a clinician thinking, okay.
Let's look into more where where that's coming
from. Is that because of something that recently
happened?
You know, they did did we lose someone,
or is it has it been a long
time that we felt like this? Mhmm. Now
those are couple a couple things
that I I would look for and I
look to listen for in terms of seeing,
you know, how someone's doing and if if
additional support is needed. Yeah. Great. Well, you
know, thank you so much for your time,
and I know that you've you speak at
all kinds of coalition events. So, you know,
thank you again so much for for your
energy there. And I think, you know, if
we could wrap this up with, like, maybe
one thing, you know, somebody can keep in
mind that could support their own mental health
or the mental health of a loved one,
you know, what would that be?
I think,
like, we talked about normalizing these conversations.
And part of it is it's okay to
reach out and and and ask for support.
I I think as people with bleeding disorders,
we're used to doing that in terms of
our physical care. And so
we're used to getting support medically, getting things
handled, and understanding. But I think it can
be a scarier thing when it's something we're
not
used to. Like, wait a minute. I can't
there is no factor,
specifically, just generally speaking. Wait. I'm I'm feeling
this way, and there isn't I don't know
the path
right off to fix this. I don't know
how to deal with this. And so since
we can't see it, there can be a
tendency to, like, say, okay. I got this.
I don't have to worry about it. I
can I can handle this?
But
it's you know, the body is one unit.
The brain and body are together, the mind
body connection. We don't always see it that
way, but they're connected.
And then mood symptoms can impact, you know,
pain,
feelings,
and those kind of things as well. And
so I would just encourage somebody, you know,
we all have challenging times, and there is
a path for support
and help and treatment
with mental challenges just like there is with
physical challenges.
It looks different, but there is a path,
and we can help you to get.
Absolutely. Well, thank you again so much for
for such an awesome conversation. And listeners, just
a reminder that the 988
hotline is available. Mental health professionals are available
247,
so you can call if you are feel
like you need help or if a loved
one needs help. And and also don't forget
that you can go to hemo b dot
org and events to find community events near
you so that you can come together, have
the shared experience, and
share share your mental health journey with others
who who know exactly what you're feeling. So
this has been Boundless Bee, the Hemophilia Bee
Podcast, the podcast standing with you from a
family like yours presented by the Coalition for
Hemophilia Bee and in partnership with Balancing Life's
Issues. And doctor Mosse, thank you again for
for being here today. Thanks. Thank you. Have
a good day. Take care. Until next time,
everybody. Take care.
Thank you for listening to Boundless Bee, the
Hemophilia Bee podcast. The podcast standing with you
from a family like yours, presented by the
Coalition for Hemophilia Bee and in partnership with
Balancing Life's Issues. Produced by me, Kai. Got
an idea for the show? Send us an
email at podcast@hemob.org,
and don't forget to stay connected to your
community at hemo b dot org. Anything else
to add, Miles?