Hope Starts With Us: Stigma & Mental Health Equity

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In this episode of NAMI’s podcast, NAMI CEO Daniel H. Gillison Jr. talks with Dr. Devika Bhushan, Dr. Napoleon Higgins and Angelina Hudson about stigma and mental health equity.

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

 

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[background
music]

Devika
Bhushan: What serves to break that stigma down is to humanize our own
stories. It doesn’t mean you have to get up on a platform and say it out to
hundreds of people you don’t know.

Angelina
Hudson: Someone needs to deal with the stigma that is not from the outside
in, but from inside out. Sometimes we shame our own family member. We shame
ourselves.

Napoleon
Higgins: The way to get involved is to go where the people are at. Don’t
wait for them to show up to see you. You’ve got to step out of your comfort
zone. You’ve got to walk into places that you haven’t been seen, so that the
people in the community can be willing to come and see you.

Dan
Gillison: Welcome to "Hope Starts With Us," a podcast by NAMI,
the National Alliance on Mental Illness. I’m your host, Daniel H. Gillison,
Jr., NAMI’s CEO. We started this podcast because we believe that hope starts
with us.

Hope
starts with us talking about mental health. Hope starts with us making
information accessible. Hope starts with us providing resources and practical advice.
Hope starts with us sharing our stories. Hope starts with us breaking the
stigma.

If
you or a loved one is struggling with a mental health condition and have been
looking for hope, we made this podcast for you. Hope starts with all of us.
Hope is a collective. We hope that each episode, with each conversation, brings
you into that collective to know you are not alone.

Today,
I’m joined by Dr. Devika Bhushan, Dr. Napoleon Higgins, and Angelina Hudson to
talk about stigma and mental health equity. Dr. Bhushan is a pediatrician who
is passionate about equity. She has lived experience with bipolar disorder and
speaks about it publicly to help break stigma. Dr. Bhushan is a former Acting
California Surgeon General and a newly elected NAMI national board member.

Dr.
Higgins is a psychiatrist in the Houston area, as well as President and CEO of
Bay Pointe Behavioral Health. He is also a past President of the Black
Psychiatrists of America and past President of the Caucus of Black
Psychiatrists of the American Psychiatric Association.

Angelina
Hudson has been Executive Director of NAMI Greater Houston since 2022, where
she previously served as Vice President of Programs and Partnerships. She is
active in the Community Health Equity Alliance, a broad partnership spearheaded
by NAMI to improve access to mental health services for Black/African ancestry
adults living with serious mental illness.

Thank
you all so much for being with me today. While we’re now in the month of
August, July was Bebe Moore Campbell National Minority Mental Health Awareness
Month, a time to focus on how we can break down harmful stigmas and systematic
barriers that perpetuate mental health inequalities in communities of color.

Because
this is such an urgent and timely issue, not just now but every month of the
year, we wanted an opportunity to dive deeper into the causes of these
inequities and possible solutions. Today, only one in three Black adults with
mental illness receives treatment.

People
in the Black/African‑ancestry community are also less likely to receive
guideline‑consistent care, less frequently included in research, and more
likely to use emergency rooms or primary care rather than mental health
specialists.

These
inequities are both caused and compounded by deep‑rooted factors like
institutionalized racism, intergenerational trauma, and economic barriers. At
the same time, stigma and cultural attitudes can make finding solutions even
more complicated.

I’d
like to start by asking all three of you if you could talk a little bit about
stigma. What exactly is it? Why does it often disproportionately affect
communities of color? How does it impact mental health equity?

Devika:
There’s so much to say about this topic. I’m really, really privileged and
thankful to be joining in this conversation with my esteemed colleagues. I’ll
start us off by just saying I think stigma comes about because of something
that we don’t understand and therefore fear.

If
we take the example of epilepsy or seizures, back in the day where we didn’t
understand what caused seizures, they were hugely stigmatized and attributed to
causes like, for instance, spirits.

Now,
when we actually can pinpoint specifically where in the brain specific seizures
arise from, they are no longer stigmatized or feared because we have language
and an actual, pinpoint‑able reason for what they are all about and,
corollary, well‑honed treatments to be able to treat them.

Interestingly,
as seizures went from the domain of psychiatry to the domain of neurology,
where things are much more precise and knowable…

As
that as an example, communities of color are in a position where, often, the
way in which we experience mental illnesses can look quite different. It
becomes another reason for us to be discriminated against.

That
has led to the closeting of mental illness as well in communities of color.
I’ll pause there and see what my colleagues have to add.

Angelina:
I only have one thing to add to that. I often refer to stigma as the blame,
shame, and guilt. It’s the feeling that we have that deters us for reaching out
for help for anything. Most of all, mental health conditions because we taboo
them. We make them something that is either spiritual or demonic.

Because
what Dr. Bashan mentioned, we don’t understand them. Then we try to either pray
it away, wish it away. We look the other way and don’t reach out for help. My
message when I go out into the community is that education uncovers all of the
fear.

It
dispels the fear and anxiety that we have when we learn better. It’s hard for
many of our communities to believe that talking to someone for two and a half
hours, once a week for eight weeks, it’s going to make a difference.

It
makes the difference between life and death. It makes the difference between a
quality life and one that is shrouded in fear and disbelief, and sometimes
leads to what I call dual diagnosis. Where there’s not only the mental health
condition, but also the self‑medicating that goes with it.

I
use myself and my story as a poster child for what it means to have the right
type of information, the right support from the clinical community, and then
the support along the journey through NAMI, to make life a greater success or
at least the best life we can have.

Dan:
Then thank you very much both of you. We’ll go to Dr. Higgins next, but I want
to make sure I come back to you, Angelina, for you to share a little bit more
about your story because I think it’s very profound. In each one of us telling
our story, we help so many others from the standpoint of what your experience
has been.

You
mentioned the speaking to someone every two hours for eight weeks. I want to
come back to that. then Dr. Bhushan, you talked about the neurology. We’ll
examine that a little bit in this conversation. We’ll go to Dr. Higgins now.

Napoleon:
Exactly what Angelina and Dr. Bhushan has spoken to the issue of fear the issue
of a lack of understanding. Then also the issue of just a lack of education. I
know I was out at a community event this past week and at a black community
event.

I
was explaining an issue about depression and children. I had a book on that.
The person that walked by said, "I don’t want my kids to know about
depression." In the frustration, when I try to contain myself as a child
psychiatrist, I’m like kids face depression as well. They face anxiety as well.

Just
as Dr. Bhushan has spoken up, you can teach children about the mind, just like
you’ve got fingers and toes, your brain has parts to it and it can have pathology
as well. It’s the lack of education, lack of understanding, which I think helps
to drive this issue of stigma and fear in the community that…

We
have to really push and battle against that.

Dan:
Thank you for what you just shared in terms of the event that you just went to
Dr. Higgins and being a psychiatrist. We have this other item that we have in
the nomenclature called ACES, Adverse Childhood Experiences.

How
have you seen that from the standpoint of the examination of stigma, and the
realization of what a young person is navigating and experiencing?

Napoleon:
Definitely. With the ACES, which is a study referring to looking at, as it
states, at first childhood experiences, we clearly see that you have worse
outcomes, the more traumas that you go through.

Right
now, and now across the world, but right now in the black community, you’re
seeing an increased rate of depression, anxiety, and completed suicides from
the ages of five, all the way through young adulthood.

That’s
why it’s so important to make sure that we’re educating individuals about this,
but also make sure that we’re screening for it. Then I will go and say that
across the board, and this is for the world, we’re seeing anxiety and
depression higher in kids, and we’re looking at the trauma of what occurred
with COVID, where essentially the world was shut down.

It’s
difficult to understand as an adult, but imagine as a child, when you haven’t
seen that much life and all of a sudden life changed. I remember my daughter
said to us once, she said, "Dad, one day I went to school, came home from
spring break, and the world was completely different.

The
people I had grown up with, the people that I knew, the school, the schools
that I knew, because I’ve lived in the same area my first 16 years of my life,
all of a sudden, all of those people were missing.

"There
were no goodbyes. There was no prom. There was no signing of yearbooks. That
was no last day. There was no graduation. All of a sudden missing. You’re not
sure when the world will restart or if this is now permanent."

The
sense of loss and the sense of trauma can occur and people will say the kids
don’t know about depression. Kids don’t know about mental health. Whatever
happens inside the home happens to the child. No one’s paying attention to the
3‑year‑old, the 4‑year‑old, or the 15‑year‑old.

We’re
all paying attention to our own internal issues, but the issues of loss as far
as a grandparent, the issue of loss as far as what they had with school, but
also the issue of trauma. One out of four girls and one out of six young boys
will be sexually traumatized before the age of 18.

That’s
a lot of people that when you look at the ACEs study are going to have a
shortened lifespan because of the stress of that on their mental health. It’s
something that we cannot escape. We have to talk about it.

The
kids can have an understanding and arm themselves and recognize when there’s a
problem and know when there’s time to go and get help. We can teach this at a
very early age. You can teach start teaching this in kindergarten.

"This
is your head. There’s a brain inside. This is how it works. This is when it’s
good. This is when there’s a problem. If we started that early and made that a
part of our regular education nomenclature, I think that we could do a lot to
stop some of the stigma that is going on.

Dan:
Thank you so much. We’re going to segue to Dr. Bhushan now. Then this is just
an incredible conversation. Thank you for that. Dr. Higgins and Dr. Bhushan, as
I mentioned earlier, your own experience with stigma is a deeply personal one.

While
you were serving as Acting Surgeon General in California, you very publicly
disclosed that you live with bipolar disorder. Could you talk about how that
affected your own view of stigma, and anything it taught you about inequities
in what we casually say mental health systems?

Devika:
Yeah, absolutely. Big set of topics and happy to dive into those. One quick
corollary to what Dr. Higgins was mentioning around ACEs, as I was serving as
acting Surgeon General and then previously Chief Health Officer at the Office
of the California Surgeon General, one of the things that we put into place was
something called the ACEs Aware Initiative in California.

Which
really helps to transform the way in which we think about healing from
childhood trauma, right? We know, as Dr. Higgins was saying, that it’s two
thirds of the population who will end up having one of the conventional 10 ACEs,
like abuse or neglect, or growing up in a household with somebody with an
untreated mental illness or substance use disorder.

It’s
holistic, right? It can affect our physical health, it can affect your growth,
your development, your immune system, the ends of your chromosomes that are
called telomeres which then can affect how long you live.

The
equally important set of messages are that there is power to be had in knowing
what your story has been, and how then it can impact your health in the future
to be able to prevent those health impacts. Ranging from heart disease to
cancer.

We
know that re‑regulating your stress response using things like an anti‑inflammatory
diet, exercise, good sleep, mental health supports can really mean the
difference in preventing all of these outcomes that are given to us in terms of
the associations in the literature, but by no means are ACEs going to be
destiny.

There’s
a lot that we can do after we’ve had ACEs to relearn stress biology in our
bodies and in our brains, to prevent us from suffering those health
consequences at an early age. Then to transition a little bit to the stigma
question.

At
the point at which I decided to share my journey, it was August 2022. At that
point in the pandemic, as Dr. Higgins has alluded to, we had all gone through
something deeply traumatic together, and some of us had suffered more than
others.

It
felt like it was the right time to let people know my small part, in this
conversation. Number one, to let people know that they weren’t alone if they
were struggling through something really traumatic and difficult, and number
two, to let them know that there was a way forward that just like hypertension,
high blood pressure, diabetes, a thyroid condition.

A
chronic mental health condition is also extremely treatable and something with
which you can live and live well. As long as you’re careful about integrating
lifestyle changes and treatments into your day to day life, you can start to
think big and you can live out your dreams. I really wanted people to hear
that.

I’m
not the only person in the public eye with bipolar disorder, but I felt that it
was important to share my piece of it. Because I wanted people to know that you
can be in a public position like California’s Acting Surgeon General.

You
can aspire to being a parent. A caregiver, a partner. I’ve been with my partner
now for almost two decades and we’ve been through a lot of ups and downs
together, including when I was first diagnosed. The role that NAMI played in
that for us was really pivotal, really helping my husband understand how to
support me in those early years.

As
far as learning about the systems, I think that my lived experience was very
formative to who I became as a person, both professionally and personally. It
definitely shaped the lens with which I approached policymaking for the ACEs
aware initiative, for example.

When
we were thinking through the supports we needed to put into place for folks to
really heal from childhood trauma and all of its sequelae, and to be really
resilience focused and strengths based in the way that we were offering
interventions, referrals, and linkages.

As
somebody who’s been through the system, both as a pediatrician trying to make
sense of the different options for my patients who were suffering from
specifically mental health conditions, being unable to refer to psychiatry and
really having to learn a lot of the tools myself to support my patients.

Then
also as a patient, and subsequently a family member, really helping folks to
navigate the care system that is the mental health system. We know that there’s
many gaps. It can take months to years before somebody is hooked up with the
right kinds of treatment, before we get the right kinds of diagnoses.

My
diagnosis, my correct diagnosis of bipolar disorder took three years, and
that’s lucky, actually, for bipolar disorder. Bipolar II ends up having an 11‑year
gap between the first onset of symptoms and the correct diagnosis and set of
treatments being offered. That is much too long. We have a lot of work to do.

Dan:
Thank you very much, first of all, for your leadership. Your public and a very
profound leadership at the government level and then personally, your
authenticity and you sharing your story. It really is helping and will continue
to help so many.

August
of 2022 was an inflection point in terms of you providing us with a view into
your success and your success in your journey. I wanted to ask a question here.
You mentioned your husband and how NAMI helped. We began this by talking about,
"We need to do a better job in educating."

Is
there anything that you could share with us, Dr. Bhushan, about what NAMI did
in helping your husband as a family member that could help our audience with
the education that NAMI could possibly provide to them?

Devika:
It was pivotal. At the moment which I was diagnosed, so just briefly, that
three‑year period, essentially, consisted of me having symptoms of
depression, to begin with.

Because
I didn’t have a family history of bipolar disorder at the time and I didn’t
personally have my own history out of mania, hypomania, I was diagnosed with
unipolar depression or straight conventional depression and started on
antidepressants.

Which
end up meaning for the bipolar brain, basically, a dysregulation and activation
where you can become triggered to experience hypomania or mania, which is when
your brain is in an elevated state.

Essentially,
three years of lots of different kinds of antidepressants were in the mix, and
what at the time was being diagnosed as anxiety plus depression was actually
hypomania layered on top of depression induced by the antidepressants, 20
different antidepressants in that span of time.

Finally,
I was on three different activating medications that induced a manic episode.
Then suddenly, it was very clear that this was not anxiety. This was actually
hypomania now verging on mania. Now I had a bipolar spectrum diagnosis and
needed to be on mood stabilizers rather than antidepressants on their own.

When
we got that diagnosis, it was both a relief, but also it took us all by
surprise. For my husband who was not in medicine, I was in medical school at
the time. I’d studied these different models of how the brain can go awry.

For
him, it was really pivotal to hear from family members who have been through
that journey, to understand what does this diagnosis entail? What does it mean
when your loved one has a hypomanic period of time or a manic period of time,
when they may be doing and saying and believing things that you’ve never known
them to say and do or be or say? How do you deal in those moments?

Because
it’s a very different paradigm than depression, right? It’s a very different
set of experiences for family members, more so than even for the person who’s
experiencing it. Because the family members will live with the memories of
what’s happened during those periods, which might be fuzzy or nonexistent
really for someone who’s going through it themselves.

To
not only know specifically how to support me as I was coming through on that
unwell period, but also to hear from so many families that it is possible to
walk through this really stigmatized and difficult to hear diagnosis, and
emerge on the other side with tools and stories that will really help buffer
you from getting sick again, potentially in the future.

That
was really meaningful to him to be able to understand that from people who had
walked for decades alongside somebody who had the same illness, even though it
can look different, obviously, in every person’s life depending on who they are
and what’s going on for them.

Just
to gather that collective wisdom of a family members was really powerful. I
know Angelina has lived that same kind of an experience. I wonder if you have
anything that you’d like to share there.

Angelina:
Absolutely. To your question, Dan, how did NAMI help? It saved our lives. It
saved my mind as I was thinking about checking into Spring Shadows Glen, which
is no longer open. It also saved my marriage and my family.

During
the time that the pediatrician was really asking me to wait, at first, they
were like, "Give him another year. Let’s see if he’ll develop. You’re
comparing him to your daughter. Boys and girls are different." I really
knew at seven months that there was something really wrong. No one was
listening.

My
husband was saying there’s nothing wrong. My parents were saying there’s
nothing wrong, but I just knew it. Finally, the pediatrician said, "You
know what? I don’t have a lot of experience with this case. I’ll refer you to
someone that you think might be more specialized in treatment of children with
brain disorder."

I
didn’t know anything about mental health at that point. We were just thinking
that there was something wrong with the brain. I found out about NAMI because I
was going from school to school asking what type of programming they had for
students like my child.

I
would just go to the chair of these departments, and when they would show me
devices, interventions, or curricula, I would take pictures. One of the chairs
of the special ed department…My children were not old enough to be in these
programs yet. My son was four, but I was just so hungry for information.

He
said, "What are you doing?" I said, "Oh, you’ve caught me. I’m
trying to collect information to take back to my pediatrician because
something’s wrong. He doesn’t mimic me. He’s not developing." Then I
started researching on brain development. It was just a shot in the dark. I
didn’t know what I was doing.

Until
he said, I’m a NAMI teacher. We teach a class in Texas called Visions for
Tomorrow. That is now NAMI Basics across the country. He said, "If you and
your husband." and I’m like, "Oh, I’m I’ve given up on him."
Because my family was saying there’s nothing wrong with my child."

I
remember Holly Robinson Pete once said that she was ready to divorce her whole
family because they wouldn’t get with the program. That’s what I was going to
do. I was going to divorce my parents, my husband, my siblings, everyone,
because I knew that there were some answers.

In
my very first class of NAMI, they introduced the emotional stages of response
to trauma. The predictable, that was the first word. The predictable emotional
response. They explained that when families are dealing with one family member who
has some sort of mental health crisis or behavioral crisis, that many times the
family members will be at different levels of response.

I
had moved into the second level where I wanted to cope with it. I wanted to
face it. I was angry at the world. I wanted someone to give me answers. My
parents and my husband were still in phase one. They were in shock, they were
in crisis, they were in disbelief.

They
shared with me in that very first class, that if I just stick with it, they
would eventually move to the second and third stages, or we might cycle up and
down, back and forth, and begin to help one another, which is what happened.

Because
NAMI said that to me in the very first week, I felt like it saved everything.
I’m married 30 years now, and it’s because of that NAMI class. Because I really
felt an affront to my family, and I was in so much grief and pain that I was
pulling the children into myself.

It
was one year later after that first class, my second child was diagnosed, and
five years later, my third child. Now you would think I’d be running for the
hills and let’s change my name, and somebody else you can have these children.
The thought crossed my mind.

I
just kept going back to that same class. It’s funny how you can take a NAMI
class multiple times, but your ears hear something different. I’ve read
somewhere that relational trauma can only be healed relationally. That’s what
NAMI does.

You’re
in a group session, you’re with other families. My first class had 22 parents
in it, all different ages, but we were all hurting and desperate for answers.
The class taught us how to talk to not only our nucleus family, but they taught
us how to talk and explain what was going on to our extended family.

They
gave us American Psychological Journal entries that we could take, and share
with our pediatrician and say, "This is what I think I’m seeing. This is
what…" So we can open up a conversation that seemed more educated, for
lack of a better word. I took the class five times before I became a NAMI
member and then a NAMI teacher.

I
volunteered with NAMI for 10 years as a teacher and trainer before the local
affiliate hired staff. As soon as they opened the staff position, I applied for
it because I had been going to hospitals. I was trying to bridge, I felt that
no one ‑‑ I’m going to finish the sentence right now ‑‑
I felt that no one should go through what I went through.

I
was educated, two degrees, married, we had great insurance, and I couldn’t get
answers and I couldn’t get help for four, five, six years. I’m like, "Why
is it that I had to drive 40 miles to find a NAMI class? There were no classes
inside the loop of this huge metropolitan area."

I
started going to Mental Health America meetings and NAMI board meetings. I just
started rallying. I got on the advisory board for Texas Children’s Hospital who
I thought should have been the first people to give me the answers I found in
this NAMI class. I said, "Why aren’t you doing this?"

I
immediately moved into this advocacy role that led to my journey as a NAMI
affiliate staff member. I promote now the bio psycho social approach, right? I
do this in Latino and Black communities. My mother’s Latina. My father is
African American. My husband’s family is all African American.

When
the doctor, and Dr. Napoleon, you know this, when you first start with some
sort of neurological journey, they want you to do an inventory with your
family. They gave us these questions to go back and get our family history.

Surprise,
surprise, my husband’s family said, "Oh, you think it’s us? No, that’s her
people." Then we went to another reunion, and we went and talked, I think
it was around Thanksgiving time. We tried to talk to my family, and they said,
"We told you not to marry him. You married into that family, and now you
brought these illnesses into our family."

Of
course, it was in both families, undiagnosed, untreated. We had all kinds of
names for it. We had pet names for the loved ones that we loved. They kept
introducing themselves to us every time we saw them. There was a history there,
but it was not documented, and it was not called anything clinical. It was not
treated.

When
people couldn’t …