August 13, 2025 • 39 mins
This week we're bringing attention to a topic that doesn’t always get the space or care it deserves: the mental, emotional, and physical toll of living with a severe autoimmune condition. Joining me for this conversation is Dr. Martine Hackett, a public health expert and the host of the podcast "Untold Stories: Life with a Severe Autoimmune Condition". In her show, she shares her own experience navigating chronic illness while also holding space for others who live with conditions that are often invisible but deeply impactful. During our conversation we discussed the ways chronic illness intersects with race, gender, and health equity, and how all of that shows up in the body and mind. If you or someone you love is managing a chronic condition, this conversation is for you.
About the Podcast
The Therapy for Black Girls Podcast is a weekly conversation with Dr. Joy Harden Bradford, a licensed Psychologist in Atlanta, Georgia, about all things mental health, personal development, and all the small decisions we can make to become the best possible versions of ourselves.
Resources & Announcements
Did you know you can leave us a voice note with your questions for the podcast? If you have a question you'd like some feedback on, topics you'd like to hear covered, or want to suggest movies or books for us to review, drop us a message at memo.fm/therapyforblackgirls and let us know what’s on your mind. We just might share it on the podcast.
Grab your copy of Sisterhood Heals.
Where to Find Our Guest
Stay Connected
Join us in over on Patreon where we're building community through our chats, connecting at Sunday Night Check-Ins, and soaking in the wisdom from exclusive series like Ask Dr. Joy and So, My Therapist Said.
Is there a topic you'd like covered on the podcast? Submit it at therapyforblackgirls.com/mailbox.
If you're looking for a therapist in your area, check out the directory at https://www.therapyforblackgirls.com/directory.
Grab your copy of our guided affirmation and other TBG Merch at therapyforblackgirls.com/shop.
The hashtag for the podcast is #TBGinSession.
Make sure to follow us on social media:
Twitter: @therapy4bgirls
Instagram: @therapyforblackgirls
Facebook: @therapyforblackgirls
Our Production Team
Executive Producers: Dennison Bradford & Maya Cole Howard
Director of Podcast & Digital Content: Ellice Ellis
Producers: Tyree Rush & Ndeye Thioubou
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
Welcome to the Therapy for Black Girls Podcast, a weekly
conversation about mental health, personal development, and all the small
decisions we can make to become the best possible versions
of ourselves. I'm your host, doctor Joy hard and Bradford,
a licensed psychologist in Atlanta, Georgia. For more information or
(00:32):
to find a therapist in your area, visit our website
at Therapy for Blackgirls dot com. While I hope you
love listening to and learning from the podcast, it is
not meant to be a substitute for a relationship with
a licensed mental health professional. Hey, y'all, thanks so much
(00:57):
for joining me for session four twenty four of the
Therapy for Black Girl's podcast. We'll get right into our
conversation after a worry from our sponsors. Today, we're bringing
attention to a topic that doesn't always get the space
(01:17):
or care it deserves, the mental, emotional, and physical toll
of living with a severe autoimmune condition. Joining me is
doctor Martine Hackett, a public health expert. In the whosts
of the podcast Untold Stories Life with a severe autoimmune condition.
In her show, she shares her own experience navigating chronic
illness while also holding space for others who live with
(01:40):
conditions that are often invisible but deeply impactful. We're talking
about the ways chronic illness intersects with raised gender and
health equity, and how all of that shows up in
the body and mind. If you are someone you love
is managing a chronic condition, this conversation is for you.
If something resonates with you while in joining our conversation,
(02:01):
please share with us on social media using the hashtag
tpg in session, or join us over in our patreon
To talk more about the episode. You can join us
at community dot therapy for Blackgirls dot com. Here's our conversation.
Thank you so much for joining us today, doctor Haggi.
Speaker 2 (02:20):
Thank you so much, doctor Joy. This is such a
pleasure for having me on today. It's such an important
work that you do. Yeah.
Speaker 1 (02:27):
Likewise, so can you get us started by telling us
more about your background and what really encouraged you to
explore autoimmune disorders. Yeah.
Speaker 2 (02:35):
So, my background actually is in public health, specifically maternal
and child health and health equity, and I've shut my
career as a researcher an educator, advocate, including time working
at the New York City Department of Health, and I
saw their firsthand how health disparities play out in real communities,
and so my focus on autoimmune conditions actually was not
(02:55):
part of my original training or even my research agenda,
and as a public health professional, I really didn't get
any education about autoimmune conditions, and honestly, that kind of
makes sense from a traditional public health perspective, because these
are conditions that affect relatively small populations percentage of the
population compared to issues like diabetes or heart disease or
(03:16):
maternal mortality. But one of the things I've learned is
that this population is growing and there are really significant
patterns in who is affected. Women are disproportionately impacted by
autoimmune conditions. We're talking about seventy five to eighty percent
of cases occurring in women, and when you start looking
(03:38):
at specific conditions like lupus, racial disparities become impossible to ignore.
So I started hosting Untold Stories Life with a Severe
Autoimmune Condition in twenty twenty three, and that has been
an incredible education for me. Through interviewing people living with
these conditions, especially black women and black men, I've really
(04:01):
come to understand that this is absolutely a public health
issue and an equity issue that really hasn't received the
attention it deserves.
Speaker 1 (04:10):
Thank you for the background, doctor Hankin. And what is
your understanding of why the autoimmune conditions are growing?
Speaker 2 (04:18):
So part of the reason is we have increased attention
to it. It's the same reason why we see people
talking about autism, right Why is autism growing so much?
Part of it is that people are more aware that
these symptoms that they might be having might be connected
to other kinds of conditions and not just you're tired,
you're stressed out, You're just need to work out more
(04:40):
that these are really conditions that are legitimate. There are
also some people that talk about environmental triggers that might
also be a factor. So we're talking about microplastics or
other kinds of environmental concerns that might also sort of
make people who are predisposed to autoimmune conditions pushing them
over the edge.
Speaker 1 (05:02):
So I feel like racism is always the answer when
I ask this question, But are there other factors to
consider about why the black community is disproportionately impacted by
some autoimmune conditions?
Speaker 2 (05:12):
So I think, especially as I mentioned, since seventy five
to eighty five eighty percent are women who are affected
we're talking really specifically about black women being sort of
in the perfect storm of disparities. We're more likely to
develop certain autoimmune conditions, and we're also more likely to
be misdiagnosed and have our symptoms dismissed as being psychological
(05:33):
or and experienced delays in diagnosis. So there is definitely
documented bias where black women's pain is underestimated and our
symptoms are more likely to be attributed to stress or
lifestyle factors or our weight than a serious medical condition.
So studies have shown that women with lupus, for example,
are diagnosed later and have more severe organ damage by
(05:56):
the time they receive proper care. So we're also more
like to experience complications and have higher mortality rates. And
it's not because these diseases are worse for us, but
that delayed diagnosis and inadequate treatment play a very significant role.
Speaker 1 (06:12):
So can you help us under stand, doctor Hacket, like
what's going on in medical training or like, why is
it that it is so often misdiagnosed or not caught
until later and typically attributed to other kinds of concerns.
Speaker 2 (06:26):
Yeah, so I think that this again is connected to
other health issues that we see that disproportionately affect black women.
We think about training in medical school, I mentioned that
as a public health professional, I really had no training
when it came to the idea of autoimmune conditions. The
other thing is that autoimmune often presents as other kinds
(06:47):
of conditions. So fatigue, for example, is something that can
be attributed to many different concerns. And of course we
know as black women, as people who might be doing
a job and then a side job, and then a
fan and other family to work with. You just accept
that that's sort of the sort of natural state of things.
So again it's not to put the blame on the individual,
(07:08):
but it's to recognize that as health professionals, when someone
actually does come in to the physician to sort of
say I've been feeling tired but feeling worn down, they
are not going to immediately jump to autoimmune. Another reason
is because they're actually challenging to be able to diagnose.
Often with many of these conditions, there's not just like
(07:28):
one blood test you do or just check check check in,
then this is it. This is often why it takes
longer to diagnose. You might have to go to two
three doctors, a specialist to be able to diagnose it.
So I think it's a combination of just the medical
system not being paying attention to this as a growing issue,
the fact that the symptoms present as many different things,
(07:49):
and that the challenge isn't actually diagnosing it.
Speaker 1 (07:53):
Got it. Can you give us a definition of autoimmune conditions,
doctor Hackett? What are we talking about with this category?
Speaker 2 (07:59):
Sure? So autoimmune conditions occur when your immune system mistakenly
attacks your own healthy tissues instead of protecting you from threats.
So people talk about it as like your body's security
system getting confused and attacking the house that it's supposed
to PreTect. They're challenging to diagnose, like I said, because
(08:21):
of those symptoms that mimic other conditions and it can
look like stress or depression or other kind of common infections.
Autoimmune conditions also have what are called flares and remission,
so the symptoms can come and go. So people have
to connect the dots, right, So it's not just that
I'm tired during this time and then oh look I'm fine.
(08:41):
It's recognizing that there is a longer term of a
pattern of feeling of response, and so yeah, piecing together
those symptoms around autoimmune can be challenging.
Speaker 1 (08:52):
I would imagine that this has also become complicated or
more complicated in the face of COVID, right, because you know,
for so many times in the different strains have different
kinds of symptoms, right, So I would imagine that has
complicated the diagnostic factors.
Speaker 2 (09:05):
Of course, it might be familiar with long COVID too,
which is also similar in that people have been dismissed
with those symptoms that they present with brain fog, extreme fatigue,
muscle weakness. These are very similar to some of these
autoimmune conditions as well, but I think the thing that
they have in common is this desire to sort of
dismiss them as something legitimate.
Speaker 1 (09:28):
So you've already mentioned that lupus is probably one of
the more common autoimmune conditions that people know. Are there
others that are particularly impactful for black women.
Speaker 2 (09:37):
So we also know that rheumatoid arthritis, even though that
affects all populations, it's an autoimmune disease and it tends
to be more aggressive in black patients. And there are
also certain thyroid autoimmune conditions like hashimotos that also shows
a higher prevalence in our communities.
Speaker 1 (09:58):
And so specifically related to lop is. What is a
loopis and what kinds of concerns might people be wanting
to pay attention to their so.
Speaker 2 (10:05):
Lupus is an autoimmune disease that also, as I mentioned,
disproportionately affects women. It presents as persistent fatigue that doesn't
improve with rest, joint pain, swelling, especially in the hands
and feet, unexplained fevers, hair loss, and sensitivity to sunlight
are often the symptoms of lupus and can present with pain,
(10:29):
especially in the joints. And so again, these are symptoms
that might be considered for different kinds of diseases, but
lupus is an automne condition that does disproportionately affect black
women and has many of the symptoms that are similar
to other kinds of conditions.
Speaker 1 (10:48):
You know, given that you've already talked to doctor Heckett
about the idea that these symptoms can really mimic lots
of different things, what advice would you give to the
community about, like how to talk to your doctor about
this and really be an EVA give for years Olf.
Speaker 2 (11:01):
Yeah, it's so important because you really do have to
be your own best advocate to be able to get
this I think so many of us, you know, are
raised with this idea that the doctor knows everything, and
by the time you actually make it to the doctor,
you know, tell them how you feel, that they will
have this sort of magic key, right that will open
up a diagnosis in treatment. And so one of the
(11:22):
first things we have to realize is that doctors are
trying to figure it out, and especially for conditions like
this that might not have a blood test that easily
diagnoses it. So I would say the first thing is
to document everything. Keep a symptom diary with the dates,
the severity, how the symptoms are affecting your daily activities.
(11:43):
This becomes then sort of objective information that that's harder
to dismiss, right if you say, on the seventeenth at
five pm, this is what happened, and you know, you
continue to document those feelings or those experiences. That becomes
a really important tool in helping your physician diagnose you
and also recognize that you might need to bring somebody
(12:04):
with you into that appointment to help you as possibly
a witness, but also as an advocate. So that's also
something that again that's sadly in many conditions, that's something
that is probably generally good advice, but especially for like
conditions like this, where it's probably not going to be
just a one and done, you should ask for referrals
(12:25):
for specialists, and if that's denied, to be able to
ask for the medical reasoning and have that be documented
in your chart, and to be able to sort of say, like,
if I'm asking for this, why am I not getting
it right? And to have that rationale, like I said,
be documented. You want to also on your own look
for referrals for specialists and to see who in your
(12:47):
area there might be an academic research center nearby that
specializes in this. And then this is where a second
opinion is absolutely necessary in some cases to be able
to get that sort of outside perspective. To be able
to do that and ultimately right, you know your body
better than anyone, and so you have to trust your
instincts and not give up, which is hard because often
(13:10):
these conditions are extremely debilitating. But I would say that
that really has to be It is that you have
to be able to recognize that you know. And I
hear this from my guests on the podcast that say
you are the expert of your own experience.
Speaker 1 (13:25):
More from our conversation after the break and who actually
are the experts in terms of loops right, in terms
of like developing a treatment plan and working with you.
What kind of doctor is that we're looking for.
Speaker 2 (13:45):
So when it comes to dealing with your doctor, you
want to start with your primary care physician. This is
your first entry into again sort of getting your blood
tests or getting things possibly eliminated, right known things eliminated.
But if you are a eventually diagnosed with an autoimmune disease,
it can depend. When it comes to certain autoimmune conditions,
(14:07):
a rheumatologist might be the person that you get referred to,
and that's the primary person. For lupis, for example, would
be a rheumatologist and they are the ones dealing with
your joint pain, your rashes, other and your fatigue. There
are some other autommune conditions where a neurologist is your
main physician helping you or main specialists that's helping you
(14:28):
manage your conditions. But ultimately it starts with the primary
care provider and then ideally finding the right specialist to
help you manage your symptoms.
Speaker 1 (14:38):
And so you know, we talked about lupus, you talk
about RUBATOI on the riot is another autoimmune condition that
is also impacting the Black community, as my Athenia graviz,
so that I think is a newer one, maybe one
that people have not heard so much about. So can
you tell us about MG and what that collection of
symptoms looks like?
Speaker 2 (14:55):
Yeah, and I'll say I was also somebody who did
not know what MG was until I started posting this
podcast about it. And so Mycethena gravis is an autoimmune
condition where the antibodies attack the communication between the nerves
and the muscles, so it causes muscle weakness and that
doesn't improve with rest. And so it's something that can
(15:15):
look like a lot of other conditions, and it's tricky
because muscle weakness can, like I said, can fluctuate during
the day and affect different muscle groups. But early signs
usually include ocular around the eyes, so like drooping eyelids,
double vision. I've had several of the guests on the
podcast talk about an optomologist being the first person to
(15:37):
diagnose their mGy. But it also presents again in muscle
weakness around difficulty chewing and swallowing, and muscle weakness in
the legs when activities you previously were able to do.
All of a sudden you're like, oh wow, I really
can't do that anymore. It's not just because you're getting
older or whatever, but that's usually connected to the myasthenia.
Speaker 1 (15:57):
That's so interesting, And it sounds like, because what does
the symptoms all look very different? Like your entry into
having conversations about this will be very different depending on
the symptom. Right, So you mentioned optalmologists. You know, if
there are some stomach things, it could be your primary
care doctor or a guestro interrologist. So it sounds like
it could be lots of different entry points in that.
Is there like a team effort once you start talking
(16:20):
about these different symptoms that affect different parts of the body.
Speaker 2 (16:23):
Ideally there's a team effort onces the disease is diagnosed
and the condition is diagnosed, and I think that this
becomes the goal. And guess who's at the center of
the team. You are, right, and this becomes your and
again kind of not in some ways should not necessarily
be that way, right, because you're the one who is
experiencing the condition, but you are the one that is
(16:44):
ultimately bringing this to the medical community and having them
again go through that process to finally be able to
diagnose it. And once diagnosed, yes, of course you're going
to need those specialists who are the ones who you
might be seeing for treatments. And one thing I didn't
say before is that for most of these conditions, there
is not a cure, right that you're really what you're
(17:04):
doing is you're being able to manage the symptoms and
to perhaps go into remission, but really trying to just
manage day to day activities of daily life. And so
the team then would be your specialists giving your information
back to your primary care provider, having that in your
medical record. And this is true sadly for so many
(17:24):
other conditions, right, is that you have all these specialists,
but no one's talking to each other. So it's really
that idea that you need to be in the middle
to be able to bring together all of this different
information for more holistic care.
Speaker 1 (17:38):
So we know that there's a collection of symptoms, and
it sounds like you're keeping a journal in like a
log of your symptoms is important. Are there any particular
blood tests or lebs that positions would be using to
try to make a decision and a diagnosis around autoimmune conditions.
Speaker 2 (17:55):
Of course, the lab tests are one of the fundamental
ways that does happen, but as I mentioned before, it's
not usually one of the first ones that are even considered.
For LOOPIS, there are definitely different markers that doctors would
be looking for in a screening test. So they'd be
looking for an ANA, which is an anti nuclear antibody,
(18:18):
and you could be positive for that, but it doesn't
mean you're positive for LOOPIS because healthy people can have
this as well, which means even more specific tests after
that that are more closely related to LOOPUS. For MG,
they're also key tests for specific antibodies, but even there
there's about ten to fifteen percent of people with MG
are serial negative so might not present with those specific antibodies.
(18:41):
So yeah, the blood work can be really complex for
autoimmune conditions. You can have positive tests with no symptoms,
you can have clear symptoms and negative tests, and so
this is why these conditions are challenging to diagnose and
why people often feel frustrated with the testing process. But
ultimately I would say, you know, one thing that's important
to remember is that again thinking about who your doctor
(19:03):
is as like a person, right and as a professional,
is that they're using these tests to as a tool, right,
as a tool to be able to help them, but
they're not the whole story. You need to be able
to also present information about your symptoms, about the some
of those specifics in addition to those blood tests, and
again you're not imagining things because the blood test might
(19:25):
come negative.
Speaker 1 (19:26):
Right.
Speaker 2 (19:26):
This is again a recognition that it's going to be
a longer journey to be able to get that final diagnosis.
Speaker 1 (19:33):
You know, we've had other conversations on the podcast recently
about perimenopause and menopause symptoms, and I'm also reminded that
some of the symptoms you are talking about also mimic that,
so I could imagine that maybe you're an obgyn is
also a part of this care team as people are
trying to like suss out in like differential diagnoses, like
figuring out exactly what the concern is.
Speaker 2 (19:54):
And that's exhausting if you think about it, right, because
it's not like you just like roll up to you know,
your physician and get an appointment, right, I mean just
even getting appointments with these people, right, to be able
to do that, to have an opening, and then you're
coordinating all this information. Yeah, it's something that we recognize
that our health system is extremely disjointed and really not
putting the patient at the center.
Speaker 1 (20:16):
M hm. Is there anything you learned doing this work,
doctor Hackett, around like any genetic predispositions to autoimmune conditions,
any information there?
Speaker 2 (20:25):
Again, this is more on the anecdotal side. We have
had guests who have had family members who have had
some of the autoimmune conditions. There is research that does
talk about some of that preconditions. But I think another
thing that's important to think about with an autoimmune condition
is that you can sort of have a genetic preference,
shall we say, for that type of autoimmune condition. But
(20:46):
I don't know if you're familiar with the idea of
like epigenetics, which is this idea that our genetics loads
the gun, as they say, and the environment pulls the trigger.
So I think just because you might have a certain preference,
the conditions that surround you are also extremely important to
see whether or not that condition actually presents in as
one of those automune conditions.
Speaker 1 (21:08):
And I know so much of the conversation around autoimmune
conditions and managing them is typically around stress management. Can
you talk a little bit about the role that stress
pleads and you know, having some flare ups. Look, let's
just be real.
Speaker 2 (21:20):
Stress is a damaging factor for many conditions. We know
that again, particularly Black women can be more susceptible to
stress and stress in a way that is not expressed
but maybe just sort of taken in and just dealt
with as part of normal everyday life. But what's important
to know is that when we feel stress, even though
(21:41):
it can be like you can't put on a scale
and you can't look at it under a microscope, stress
has real physiological impact on our bodies. We know that
when we feel stress and our heart starts beating right,
or our temperature fluctuates, or we start perspirating right. The
idea is is that stress produces stress hormones, and those
(22:01):
stress hormones have an effect on our bodies. And again, sadly,
this is also connected to issues like maternal mortality. When
we think about hypertension is clearly related can clearly be
related to stress and the stress hormones that are produced.
So just as an overall stress is bad, right, I mean, look,
there are some stressors that can be healthy stressors as
(22:24):
long as they're not toxic and chronic So that being said, yeah,
managing stress is a key factor to being able to
prevent many different kinds of diseases and chronic diseases, and
so thinking about that as a just a general wellness
recommendation can really help you again hopefully delay the onset
(22:44):
of many different kinds of conditions.
Speaker 1 (22:47):
So you've already mentioned like how difficult the coordination of
like your care team, Like it sounds like this is
exalting on top of like the symptoms that you are
already experiencing because of a condition. What kinds of suppor
is important And maybe these stories that you've heard from
the podcast around like what kinds of things have really
been helpful in terms of support they've gotten from loved
(23:08):
ones and their care teams. That can really make a difference.
Speaker 2 (23:11):
So, as you mentioned, support from the medical team is
a primary one. You want people who will see you
as a whole person, right, you want not just this
collection of symptoms and so, but emotionally peer support is
absolutely valuable. One of the things that I constantly hear
on the podcast is the ability to connect with other
(23:32):
people who have your condition can be really who truly
understand what it daily means. To have an autoimmune condition
is extremely valuable because, as I mentioned earlier, in general,
in the population, these are fairly rare conditions, and so
you might not have a friend of a friend who
has that particular condition. But the communities that have sprout
(23:56):
up around these supporting people with these conditions can be
unbelievably valuable. They are great, again, like I said, just
for peer support, Hey, I'm dealing with this symptom. Hey
has anybody else felt this to advocacy as well? Many
of these organizations are very organized and are ones who
are right at the forefront for advocating, for research dollars,
(24:18):
for making this an issue that physicians need to be
aware of in their training, and the ability to sort
of bring attention to these conditions. So I would say
that peer support and the support of other people who
have similar conditions is absolutely valuable. M H.
Speaker 1 (24:35):
And are you aware of any organizations do you feel
like that have been a good resource for maybe some
of the guests that they've shared.
Speaker 2 (24:42):
Yeah, and so, thinking about some of the specific conditions
that we've already discussed, like lupus, there is the Lupus
Foundation of America that actually has specific support groups for
people of color. And there are also other clearing houses
for other organizations like Patients like Me, which is an
online platform where you can connect with other people that
(25:03):
have similar kinds of conditions. I don't know if you've
heard of the Spoon community in dealing with chronic illness,
and those are folks who are very much available online
and in social media, and those are for all kinds
of chronic conditions, and so those have been again just
very helpful to get people to on a day to
day basis with being able to have to deal with
(25:25):
what does it mean to live with these conditions? So
I would say more organized groups in terms of ones
that do advocacy and fundraising and research, but also groups
like I said on through social media that can really
just be that peer support seem to be really helpful.
Speaker 1 (25:42):
In fact, I could you mentioned that learning more about
autoimmune diseases has a bit of a detour kind of
in your training, and this is what you necessarily plan
for your career. What do you feel like learning more
about these conditions has done for you in terms of
how you approach public hell than maybe even your advocacy work.
Speaker 2 (25:59):
Yeah, thing that I honestly never expected to happen to me,
But I'm so grateful that it has because what it's
done is it really has addressed this an issue that
I don't have an autoimmune condition. I don't have close
family that have an autoimmune condition, so I can easily
feel like it's not that big of an issue.
Speaker 1 (26:21):
But when I've.
Speaker 2 (26:22):
Started to talk to people who have it, when I
start to understand what does it mean to not only
have an autoimmune condition, but to live with it, and
what impact does that have on your family, what impact
does that have on your community, That's when I started
to real and then what are these inequities that are
also here in dealing with diagnosing and treating these conditions.
(26:44):
That's where I saw this connection to the work that
I have done in the past, to the work of
the autoimmune community. So for me, I feel like this
has been a gift to be able to really sort
of see this group of people who are in many
cases having basically invisible disabilities, where people might not understand
why their voice might be affected, why they're not physically
(27:05):
able to do things even though they might look fine.
So I guess that all of this is to say
that this has been a real opportunity for me to
sort of be open to again a growing issue that's
affecting the population of populations that I care about.
Speaker 1 (27:22):
More. From our conversation after the break, you bring up
a really good point in terms of as being maybe
a little bit more of an invisible disability, And I
think that that brings additional challenges in terms of like
(27:42):
how to advocate for yourself. What suggestions would you offer
there for people to be able to continue to do that.
Speaker 2 (27:47):
Yeah, and I think that this is something that people
constantly struggle with. Because I can even think for myself
in my day to day life, I might also have
sort of feelings about I see somebody who's like parking
in the handicapped spot and they look fine.
Speaker 1 (27:59):
Right.
Speaker 2 (28:00):
It's about really educating us about this recognition that disability
is something that will likely affect almost all of us
at some point in our lives, and invisible or not.
As we age, as we are just exposed to other
kinds of conditions, this is likely something that will affect
us or somebody very close to us. So that's the
(28:20):
first thing, is to realize that this is not something
that happens to other people, and that we have to
also be aware that not only does this affect people,
but what are the sort of ways that we're able
to support people who have these disabilities? So I'm thinking
about things like, what about the people you work with?
What about people who are going through invisible disabilities? How
(28:41):
are we judging them? How are we maybe making sort
of jumping to conclusions we should be asking people? Right,
we should be open to being able to understand that
most everybody's going through something, and that to be able
to try to understand that and to be open to
that is important. So I think for me it's been
a real humbling experience to sort of recognize I was
(29:03):
bringing in a ton of assumptions when it comes to disability,
and those assumptions were wrong. And this has really been
an opportunity for me to recognize that, yeah, most people
are going through something and to be able to be
sensitive to that and to be empathetic is just has
changed really how I've approached the way I do my work.
Speaker 1 (29:24):
Given that we know that more of the black community
is being impacted by autoimmune conditions, specifically things like loopiz.
Are you aware of any research teams that are really
diving into this work and maybe what would you envision
for the future of public health to maybe step more
into it.
Speaker 2 (29:40):
So I'm not aware of the individual sort of groups
that are doing this, and I would hope that there
are more that are doing so, but I can say
that when it comes to public health, this is an
area that needs to have more attention drawn to it.
Of course, public health is going through a lot of
turmoil right now, right when it comes to funding and
dealing with things like vaccine. But here's the thing. Living
(30:02):
with an autoimmune condition is something that is not only growing,
but it's something that is disproportionately affecting populations in a
way that make us recognize that until we do pay
attention to them, people will not get the type of
treatment that they deserve and recognition, and so research, I
would argue, really needs to be sort of connected to
(30:25):
other chronic diseases and living with chronic diseases, but also
the recognition that the issue with autoimmune conditions are that
they are increasingly not recognized and so to be able
to have that research that, again from a public health perspective,
it's absolutely important to be able to put that within
a context of health equity of being able to address
(30:49):
this similarly as other issues like maternal mortality, and for
us to be able to recognize that it's not okay
to have people go through these conditions and through what
they have to do in a health system just to
get the care that they deserve.
Speaker 1 (31:05):
Thank you for that. I want to go back to
something that you mentioned earlier in our conversation around you know,
some of these symptoms kind of being misattributed to things
like diet and weight. You talk about like why that's
such a harmful and damaging narrative, especially when we're talking
about autoimmune condition.
Speaker 2 (31:20):
Absolutely, so we know that there is weight bias with
our clinicians. This is not only something that and again
there's weight bias with the whole population, So clinicians are
part of the population, so this is not something that's
particularly special to them. But I think one of the
things we've realized is that many of the narratives around
dealing with weight have to do with a lack of
(31:42):
self control or somebody just not doing the right thing,
or why don't you just listen? And I've heard this
from physicians, and it's an extremely damaging narrative because it
basically puts the responsibility on someone's ability to either listen
and do the right thing or to be that sort
of recault patient right, And to me, that is obviously
(32:05):
absolutely the wrong perspective. I think one of the things
we've seen with these GLP one drugs and other kinds
of drugs to be able to address diabetes and weight
is that, oh, it actually has some sort of component
that is connected to your brain and to hormones. And
the point is is that we have seen that that
narrative that has been pushed before around your self control
(32:27):
has shifted as we have you now new pharmaceuticals that
are able to address it, and in doing so that
sort of hopefully will also shift this idea of the
bias around weight. That sort of again means that people
don't get the kind of more in depth testing and
being taken seriously with their symptoms.
Speaker 1 (32:49):
So what would you say to someone, doctor Hackett, who
maybe has a new diagnosis of an autoimmune condition and
maybe struggling with how to make sense of all of this,
What kinds of things would you offer to them?
Speaker 2 (33:00):
So I think one of the key things in this
is definitely what I've heard through my people I've talked
to in the podcast is that managing an autoimmune condition
takes a village, so don't try to do it alone,
and don't feel guilty about needing support. Building your support
network is actually as important as taking your medicine, and
(33:22):
so asking for help is not a weakness in these conditions,
it's a strategy. Really, you're managing a complex medical condition
and while trying to live your life, raise your family,
and purdue your career, so that takes tremendous strength, and
so having a support system helps just makes you more effective.
So maybe that means you need to get extra help
(33:42):
with meal prep or cleaning your house or other things.
The idea is not to be afraid to be able
to ask for that and to be able to recognize
that this is what you need and deserve to be
able to manage a complex condition.
Speaker 1 (33:58):
Thank you, Dakna Heckett. I would imagine that podcaster was
also not on your job vision board. That's something that
you saw yourself doing likewise was not online. But it
is an interesting I think avenue when you think about
public health, about being able to share health information. Can
you talk to us about how you see this as
an avenue for public health and how do you balance
(34:21):
being personable and relatable with the conversation around like some
very jargon heavy kind of you know, clinical terms, like
what's the balance for you there?
Speaker 2 (34:30):
So I think for me, it's recognizing that people are
at the center of this, and people are at the
center of public health. And I think that often gets
dismissed in some ways when we think about statistics, when
we look at data, right, and we forget that there
are people attached to each one of those numbers. And
so I have always been interested in people's stories and
(34:53):
how people are understanding their perspectives on how they understand
their world. And so for me to be able to
talk to people and to understand their individual stories and
then to take their individual stories and connect it to
the sort of larger conditions that we see, I think
to me is a way to get people to really
(35:14):
sort of recognize that just because you're going through something
doesn't mean that you're wrong. You did something that was
some behavior that was inappropriate, but that can very often
be connected to the systems that we are living in.
And I think people don't see those systems until it
sometimes it's pointed out to them. And so for me, also,
I'm a sociologist too, so I think about things in
(35:37):
this way where it's our own experiences are often connected
to the experiences of others, and that's really where the
power comes from when we start to say that this
is not an individualized kind of failing, but that we
are part of something that has in many cases happened
to us, and that we need to be able to
(35:58):
reclaim our power, to be able to sort of say,
here are the ways that we are now demanding to
be able to address these issues. So to sort of
wrap it up, I would say, for me, I absolutely
see storytelling as a part of public health and a
part of what we need to do to just really
kind of increase our humanity and our connection and our
(36:19):
empathy to each other, which I think is really, in
my opinion, the way that we're going to solve many
of these issues that we are currently dealing with.
Speaker 1 (36:29):
I agree, Thank you for it. So what advice would
you give to eighteen year old future doctor Hackett?
Speaker 2 (36:36):
I probably give her the same advice I give myself today,
which is I have a quote here by my computer.
It says, the privilege of a lifetime is to become
who you truly are, and that's Carl Jung And I
think for me, it's really allowing yourself to recognize and
to realize and to explore and to understand who you
(36:57):
truly are. And how do you do that? I think
it comes from listening. I think it comes from listening
to yourself, listening to the messages that you're getting from
the universe and from others, and being able to discern
what are the things that are going to get you
(37:18):
to that very next step. So it's listening and being still,
but it's also recognizing that this is a process for
you to find out who you really are.
Speaker 1 (37:29):
And where can we stay connected with you? Doctor Hackett?
What is your website as well as any social media
channels you'd like to share?
Speaker 2 (37:35):
So my main social media is LinkedIn, which is perfectly fine.
So that's where you can find me a Martine Hackett
on LinkedIn. And I also have co founded an organization
called Birth Justice Warriors where we address black maternal and
infant mortality on Long Island, and that's Birth Justice Warriors
dot com.
Speaker 1 (37:57):
And where can we listen to the podcast?
Speaker 2 (37:59):
The podcast is avail where all podcasts are available. So
it's Untold Stories Life with a severe autoimmune condition. Perfect, well,
we should include all of that in our show notes.
Thank you so much for sending some time with you today,
doctor Hackett. I appreciate it, Doctor Troy, it was my pleasure.
Thank you.
Speaker 1 (38:17):
I'm so glad Doctor Hackett was able to join us
and share her insights and tips on advocacy with us
for this conversation, So learn more about her work, or
to check out untold stories Life with a severe autoimmune condition.
Be sure to visit the show notes at Therapy for
Blackgirls dot com slash Session four twenty four, and don't
forget to text this episode to two of your girls
right now and tell them to check it out. Did
(38:40):
you know that you could leave us a voicemail with
your questions or suggestions for the podcast. If you have
movies or books you like us to review, or have
thoughts about topics you like us to discuss, drop us
a message at Memo dot fm slash Therapy for Black
Girls and let us know what's on your mind. We
just might feature it on the podcast. If you're looking
for a therapist in your area, visit our therapist directory
(39:01):
at Therapy for Blackgirls dot com slash directory and don't
forget to follow us on Instagram at Therapy for Black Girls,
or join us over in our Patreon community at community
dot Therapy for Blackgirls dot com. This episode was produced
by Elise Ellis, Indechubu and Tyree Rush. Editing was done
by Dennison Bradford. Thank y'all so much for joining me
(39:22):
again this week. I look forward to continuing this conversation
with you all real soon. Take good care,
Welcome to the Therapy for Black Girls Podcast, a weekly
conversation about mental health, personal development, and all the small
decisions we can make to become the best possible versions
of ourselves. I'm your host, doctor Joy hard and Bradford,
a licensed psychologist in Atlanta, Georgia. For more information or
(00:32):
to find a therapist in your area, visit our website
at Therapy for Blackgirls dot com. While I hope you
love listening to and learning from the podcast, it is
not meant to be a substitute for a relationship with
a licensed mental health professional. Hey, y'all, thanks so much
(00:57):
for joining me for session four twenty four of the
Therapy for Black Girl's podcast. We'll get right into our
conversation after a worry from our sponsors. Today, we're bringing
attention to a topic that doesn't always get the space
(01:17):
or care it deserves, the mental, emotional, and physical toll
of living with a severe autoimmune condition. Joining me is
doctor Martine Hackett, a public health expert. In the whosts
of the podcast Untold Stories Life with a severe autoimmune condition.
In her show, she shares her own experience navigating chronic
illness while also holding space for others who live with
(01:40):
conditions that are often invisible but deeply impactful. We're talking
about the ways chronic illness intersects with raised gender and
health equity, and how all of that shows up in
the body and mind. If you are someone you love
is managing a chronic condition, this conversation is for you.
If something resonates with you while in joining our conversation,
(02:01):
please share with us on social media using the hashtag
tpg in session, or join us over in our patreon
To talk more about the episode. You can join us
at community dot therapy for Blackgirls dot com. Here's our conversation.
Thank you so much for joining us today, doctor Haggi.
Speaker 2 (02:20):
Thank you so much, doctor Joy. This is such a
pleasure for having me on today. It's such an important
work that you do. Yeah.
Speaker 1 (02:27):
Likewise, so can you get us started by telling us
more about your background and what really encouraged you to
explore autoimmune disorders. Yeah.
Speaker 2 (02:35):
So, my background actually is in public health, specifically maternal
and child health and health equity, and I've shut my
career as a researcher an educator, advocate, including time working
at the New York City Department of Health, and I
saw their firsthand how health disparities play out in real communities,
and so my focus on autoimmune conditions actually was not
(02:55):
part of my original training or even my research agenda,
and as a public health professional, I really didn't get
any education about autoimmune conditions, and honestly, that kind of
makes sense from a traditional public health perspective, because these
are conditions that affect relatively small populations percentage of the
population compared to issues like diabetes or heart disease or
(03:16):
maternal mortality. But one of the things I've learned is
that this population is growing and there are really significant
patterns in who is affected. Women are disproportionately impacted by
autoimmune conditions. We're talking about seventy five to eighty percent
of cases occurring in women, and when you start looking
(03:38):
at specific conditions like lupus, racial disparities become impossible to ignore.
So I started hosting Untold Stories Life with a Severe
Autoimmune Condition in twenty twenty three, and that has been
an incredible education for me. Through interviewing people living with
these conditions, especially black women and black men, I've really
(04:01):
come to understand that this is absolutely a public health
issue and an equity issue that really hasn't received the
attention it deserves.
Speaker 1 (04:10):
Thank you for the background, doctor Hankin. And what is
your understanding of why the autoimmune conditions are growing?
Speaker 2 (04:18):
So part of the reason is we have increased attention
to it. It's the same reason why we see people
talking about autism, right Why is autism growing so much?
Part of it is that people are more aware that
these symptoms that they might be having might be connected
to other kinds of conditions and not just you're tired,
you're stressed out, You're just need to work out more
(04:40):
that these are really conditions that are legitimate. There are
also some people that talk about environmental triggers that might
also be a factor. So we're talking about microplastics or
other kinds of environmental concerns that might also sort of
make people who are predisposed to autoimmune conditions pushing them
over the edge.
Speaker 1 (05:02):
So I feel like racism is always the answer when
I ask this question, But are there other factors to
consider about why the black community is disproportionately impacted by
some autoimmune conditions?
Speaker 2 (05:12):
So I think, especially as I mentioned, since seventy five
to eighty five eighty percent are women who are affected
we're talking really specifically about black women being sort of
in the perfect storm of disparities. We're more likely to
develop certain autoimmune conditions, and we're also more likely to
be misdiagnosed and have our symptoms dismissed as being psychological
(05:33):
or and experienced delays in diagnosis. So there is definitely
documented bias where black women's pain is underestimated and our
symptoms are more likely to be attributed to stress or
lifestyle factors or our weight than a serious medical condition.
So studies have shown that women with lupus, for example,
are diagnosed later and have more severe organ damage by
(05:56):
the time they receive proper care. So we're also more
like to experience complications and have higher mortality rates. And
it's not because these diseases are worse for us, but
that delayed diagnosis and inadequate treatment play a very significant role.
Speaker 1 (06:12):
So can you help us under stand, doctor Hacket, like
what's going on in medical training or like, why is
it that it is so often misdiagnosed or not caught
until later and typically attributed to other kinds of concerns.
Speaker 2 (06:26):
Yeah, so I think that this again is connected to
other health issues that we see that disproportionately affect black women.
We think about training in medical school, I mentioned that
as a public health professional, I really had no training
when it came to the idea of autoimmune conditions. The
other thing is that autoimmune often presents as other kinds
(06:47):
of conditions. So fatigue, for example, is something that can
be attributed to many different concerns. And of course we
know as black women, as people who might be doing
a job and then a side job, and then a
fan and other family to work with. You just accept
that that's sort of the sort of natural state of things.
So again it's not to put the blame on the individual,
(07:08):
but it's to recognize that as health professionals, when someone
actually does come in to the physician to sort of
say I've been feeling tired but feeling worn down, they
are not going to immediately jump to autoimmune. Another reason
is because they're actually challenging to be able to diagnose.
Often with many of these conditions, there's not just like
(07:28):
one blood test you do or just check check check in,
then this is it. This is often why it takes
longer to diagnose. You might have to go to two
three doctors, a specialist to be able to diagnose it.
So I think it's a combination of just the medical
system not being paying attention to this as a growing issue,
the fact that the symptoms present as many different things,
(07:49):
and that the challenge isn't actually diagnosing it.
Speaker 1 (07:53):
Got it. Can you give us a definition of autoimmune conditions,
doctor Hackett? What are we talking about with this category?
Speaker 2 (07:59):
Sure? So autoimmune conditions occur when your immune system mistakenly
attacks your own healthy tissues instead of protecting you from threats.
So people talk about it as like your body's security
system getting confused and attacking the house that it's supposed
to PreTect. They're challenging to diagnose, like I said, because
(08:21):
of those symptoms that mimic other conditions and it can
look like stress or depression or other kind of common infections.
Autoimmune conditions also have what are called flares and remission,
so the symptoms can come and go. So people have
to connect the dots, right, So it's not just that
I'm tired during this time and then oh look I'm fine.
(08:41):
It's recognizing that there is a longer term of a
pattern of feeling of response, and so yeah, piecing together
those symptoms around autoimmune can be challenging.
Speaker 1 (08:52):
I would imagine that this has also become complicated or
more complicated in the face of COVID, right, because you know,
for so many times in the different strains have different
kinds of symptoms, right, So I would imagine that has
complicated the diagnostic factors.
Speaker 2 (09:05):
Of course, it might be familiar with long COVID too,
which is also similar in that people have been dismissed
with those symptoms that they present with brain fog, extreme fatigue,
muscle weakness. These are very similar to some of these
autoimmune conditions as well, but I think the thing that
they have in common is this desire to sort of
dismiss them as something legitimate.
Speaker 1 (09:28):
So you've already mentioned that lupus is probably one of
the more common autoimmune conditions that people know. Are there
others that are particularly impactful for black women.
Speaker 2 (09:37):
So we also know that rheumatoid arthritis, even though that
affects all populations, it's an autoimmune disease and it tends
to be more aggressive in black patients. And there are
also certain thyroid autoimmune conditions like hashimotos that also shows
a higher prevalence in our communities.
Speaker 1 (09:58):
And so specifically related to lop is. What is a
loopis and what kinds of concerns might people be wanting
to pay attention to their so.
Speaker 2 (10:05):
Lupus is an autoimmune disease that also, as I mentioned,
disproportionately affects women. It presents as persistent fatigue that doesn't
improve with rest, joint pain, swelling, especially in the hands
and feet, unexplained fevers, hair loss, and sensitivity to sunlight
are often the symptoms of lupus and can present with pain,
(10:29):
especially in the joints. And so again, these are symptoms
that might be considered for different kinds of diseases, but
lupus is an automne condition that does disproportionately affect black
women and has many of the symptoms that are similar
to other kinds of conditions.
Speaker 1 (10:48):
You know, given that you've already talked to doctor Heckett
about the idea that these symptoms can really mimic lots
of different things, what advice would you give to the
community about, like how to talk to your doctor about
this and really be an EVA give for years Olf.
Speaker 2 (11:01):
Yeah, it's so important because you really do have to
be your own best advocate to be able to get
this I think so many of us, you know, are
raised with this idea that the doctor knows everything, and
by the time you actually make it to the doctor,
you know, tell them how you feel, that they will
have this sort of magic key, right that will open
up a diagnosis in treatment. And so one of the
(11:22):
first things we have to realize is that doctors are
trying to figure it out, and especially for conditions like
this that might not have a blood test that easily
diagnoses it. So I would say the first thing is
to document everything. Keep a symptom diary with the dates,
the severity, how the symptoms are affecting your daily activities.
(11:43):
This becomes then sort of objective information that that's harder
to dismiss, right if you say, on the seventeenth at
five pm, this is what happened, and you know, you
continue to document those feelings or those experiences. That becomes
a really important tool in helping your physician diagnose you
and also recognize that you might need to bring somebody
(12:04):
with you into that appointment to help you as possibly
a witness, but also as an advocate. So that's also
something that again that's sadly in many conditions, that's something
that is probably generally good advice, but especially for like
conditions like this, where it's probably not going to be
just a one and done, you should ask for referrals
(12:25):
for specialists, and if that's denied, to be able to
ask for the medical reasoning and have that be documented
in your chart, and to be able to sort of say, like,
if I'm asking for this, why am I not getting
it right? And to have that rationale, like I said,
be documented. You want to also on your own look
for referrals for specialists and to see who in your
(12:47):
area there might be an academic research center nearby that
specializes in this. And then this is where a second
opinion is absolutely necessary in some cases to be able
to get that sort of outside perspective. To be able
to do that and ultimately right, you know your body
better than anyone, and so you have to trust your
instincts and not give up, which is hard because often
(13:10):
these conditions are extremely debilitating. But I would say that
that really has to be It is that you have
to be able to recognize that you know. And I
hear this from my guests on the podcast that say
you are the expert of your own experience.
Speaker 1 (13:25):
More from our conversation after the break and who actually
are the experts in terms of loops right, in terms
of like developing a treatment plan and working with you.
What kind of doctor is that we're looking for.
Speaker 2 (13:45):
So when it comes to dealing with your doctor, you
want to start with your primary care physician. This is
your first entry into again sort of getting your blood
tests or getting things possibly eliminated, right known things eliminated.
But if you are a eventually diagnosed with an autoimmune disease,
it can depend. When it comes to certain autoimmune conditions,
(14:07):
a rheumatologist might be the person that you get referred to,
and that's the primary person. For lupis, for example, would
be a rheumatologist and they are the ones dealing with
your joint pain, your rashes, other and your fatigue. There
are some other autommune conditions where a neurologist is your
main physician helping you or main specialists that's helping you
(14:28):
manage your conditions. But ultimately it starts with the primary
care provider and then ideally finding the right specialist to
help you manage your symptoms.
Speaker 1 (14:38):
And so you know, we talked about lupus, you talk
about RUBATOI on the riot is another autoimmune condition that
is also impacting the Black community, as my Athenia graviz,
so that I think is a newer one, maybe one
that people have not heard so much about. So can
you tell us about MG and what that collection of
symptoms looks like?
Speaker 2 (14:55):
Yeah, and I'll say I was also somebody who did
not know what MG was until I started posting this
podcast about it. And so Mycethena gravis is an autoimmune
condition where the antibodies attack the communication between the nerves
and the muscles, so it causes muscle weakness and that
doesn't improve with rest. And so it's something that can
(15:15):
look like a lot of other conditions, and it's tricky
because muscle weakness can, like I said, can fluctuate during
the day and affect different muscle groups. But early signs
usually include ocular around the eyes, so like drooping eyelids,
double vision. I've had several of the guests on the
podcast talk about an optomologist being the first person to
(15:37):
diagnose their mGy. But it also presents again in muscle
weakness around difficulty chewing and swallowing, and muscle weakness in
the legs when activities you previously were able to do.
All of a sudden you're like, oh wow, I really
can't do that anymore. It's not just because you're getting
older or whatever, but that's usually connected to the myasthenia.
Speaker 1 (15:57):
That's so interesting, And it sounds like, because what does
the symptoms all look very different? Like your entry into
having conversations about this will be very different depending on
the symptom. Right, So you mentioned optalmologists. You know, if
there are some stomach things, it could be your primary
care doctor or a guestro interrologist. So it sounds like
it could be lots of different entry points in that.
Is there like a team effort once you start talking
(16:20):
about these different symptoms that affect different parts of the body.
Speaker 2 (16:23):
Ideally there's a team effort onces the disease is diagnosed
and the condition is diagnosed, and I think that this
becomes the goal. And guess who's at the center of
the team. You are, right, and this becomes your and
again kind of not in some ways should not necessarily
be that way, right, because you're the one who is
experiencing the condition, but you are the one that is
(16:44):
ultimately bringing this to the medical community and having them
again go through that process to finally be able to
diagnose it. And once diagnosed, yes, of course you're going
to need those specialists who are the ones who you
might be seeing for treatments. And one thing I didn't
say before is that for most of these conditions, there
is not a cure, right that you're really what you're
(17:04):
doing is you're being able to manage the symptoms and
to perhaps go into remission, but really trying to just
manage day to day activities of daily life. And so
the team then would be your specialists giving your information
back to your primary care provider, having that in your
medical record. And this is true sadly for so many
(17:24):
other conditions, right, is that you have all these specialists,
but no one's talking to each other. So it's really
that idea that you need to be in the middle
to be able to bring together all of this different
information for more holistic care.
Speaker 1 (17:38):
So we know that there's a collection of symptoms, and
it sounds like you're keeping a journal in like a
log of your symptoms is important. Are there any particular
blood tests or lebs that positions would be using to
try to make a decision and a diagnosis around autoimmune conditions.
Speaker 2 (17:55):
Of course, the lab tests are one of the fundamental
ways that does happen, but as I mentioned before, it's
not usually one of the first ones that are even considered.
For LOOPIS, there are definitely different markers that doctors would
be looking for in a screening test. So they'd be
looking for an ANA, which is an anti nuclear antibody,
(18:18):
and you could be positive for that, but it doesn't
mean you're positive for LOOPIS because healthy people can have
this as well, which means even more specific tests after
that that are more closely related to LOOPUS. For MG,
they're also key tests for specific antibodies, but even there
there's about ten to fifteen percent of people with MG
are serial negative so might not present with those specific antibodies.
(18:41):
So yeah, the blood work can be really complex for
autoimmune conditions. You can have positive tests with no symptoms,
you can have clear symptoms and negative tests, and so
this is why these conditions are challenging to diagnose and
why people often feel frustrated with the testing process. But
ultimately I would say, you know, one thing that's important
to remember is that again thinking about who your doctor
(19:03):
is as like a person, right and as a professional,
is that they're using these tests to as a tool, right,
as a tool to be able to help them, but
they're not the whole story. You need to be able
to also present information about your symptoms, about the some
of those specifics in addition to those blood tests, and
again you're not imagining things because the blood test might
(19:25):
come negative.
Speaker 1 (19:26):
Right.
Speaker 2 (19:26):
This is again a recognition that it's going to be
a longer journey to be able to get that final diagnosis.
Speaker 1 (19:33):
You know, we've had other conversations on the podcast recently
about perimenopause and menopause symptoms, and I'm also reminded that
some of the symptoms you are talking about also mimic that,
so I could imagine that maybe you're an obgyn is
also a part of this care team as people are
trying to like suss out in like differential diagnoses, like
figuring out exactly what the concern is.
Speaker 2 (19:54):
And that's exhausting if you think about it, right, because
it's not like you just like roll up to you know,
your physician and get an appointment, right, I mean just
even getting appointments with these people, right, to be able
to do that, to have an opening, and then you're
coordinating all this information. Yeah, it's something that we recognize
that our health system is extremely disjointed and really not
putting the patient at the center.
Speaker 1 (20:16):
M hm. Is there anything you learned doing this work,
doctor Hackett, around like any genetic predispositions to autoimmune conditions,
any information there?
Speaker 2 (20:25):
Again, this is more on the anecdotal side. We have
had guests who have had family members who have had
some of the autoimmune conditions. There is research that does
talk about some of that preconditions. But I think another
thing that's important to think about with an autoimmune condition
is that you can sort of have a genetic preference,
shall we say, for that type of autoimmune condition. But
(20:46):
I don't know if you're familiar with the idea of
like epigenetics, which is this idea that our genetics loads
the gun, as they say, and the environment pulls the trigger.
So I think just because you might have a certain preference,
the conditions that surround you are also extremely important to
see whether or not that condition actually presents in as
one of those automune conditions.
Speaker 1 (21:08):
And I know so much of the conversation around autoimmune
conditions and managing them is typically around stress management. Can
you talk a little bit about the role that stress
pleads and you know, having some flare ups. Look, let's
just be real.
Speaker 2 (21:20):
Stress is a damaging factor for many conditions. We know
that again, particularly Black women can be more susceptible to
stress and stress in a way that is not expressed
but maybe just sort of taken in and just dealt
with as part of normal everyday life. But what's important
to know is that when we feel stress, even though
(21:41):
it can be like you can't put on a scale
and you can't look at it under a microscope, stress
has real physiological impact on our bodies. We know that
when we feel stress and our heart starts beating right,
or our temperature fluctuates, or we start perspirating right. The
idea is is that stress produces stress hormones, and those
(22:01):
stress hormones have an effect on our bodies. And again, sadly,
this is also connected to issues like maternal mortality. When
we think about hypertension is clearly related can clearly be
related to stress and the stress hormones that are produced.
So just as an overall stress is bad, right, I mean, look,
there are some stressors that can be healthy stressors as
(22:24):
long as they're not toxic and chronic So that being said, yeah,
managing stress is a key factor to being able to
prevent many different kinds of diseases and chronic diseases, and
so thinking about that as a just a general wellness
recommendation can really help you again hopefully delay the onset
(22:44):
of many different kinds of conditions.
Speaker 1 (22:47):
So you've already mentioned like how difficult the coordination of
like your care team, Like it sounds like this is
exalting on top of like the symptoms that you are
already experiencing because of a condition. What kinds of suppor
is important And maybe these stories that you've heard from
the podcast around like what kinds of things have really
been helpful in terms of support they've gotten from loved
(23:08):
ones and their care teams. That can really make a difference.
Speaker 2 (23:11):
So, as you mentioned, support from the medical team is
a primary one. You want people who will see you
as a whole person, right, you want not just this
collection of symptoms and so, but emotionally peer support is
absolutely valuable. One of the things that I constantly hear
on the podcast is the ability to connect with other
(23:32):
people who have your condition can be really who truly
understand what it daily means. To have an autoimmune condition
is extremely valuable because, as I mentioned earlier, in general,
in the population, these are fairly rare conditions, and so
you might not have a friend of a friend who
has that particular condition. But the communities that have sprout
(23:56):
up around these supporting people with these conditions can be
unbelievably valuable. They are great, again, like I said, just
for peer support, Hey, I'm dealing with this symptom. Hey
has anybody else felt this to advocacy as well? Many
of these organizations are very organized and are ones who
are right at the forefront for advocating, for research dollars,
(24:18):
for making this an issue that physicians need to be
aware of in their training, and the ability to sort
of bring attention to these conditions. So I would say
that peer support and the support of other people who
have similar conditions is absolutely valuable. M H.
Speaker 1 (24:35):
And are you aware of any organizations do you feel
like that have been a good resource for maybe some
of the guests that they've shared.
Speaker 2 (24:42):
Yeah, and so, thinking about some of the specific conditions
that we've already discussed, like lupus, there is the Lupus
Foundation of America that actually has specific support groups for
people of color. And there are also other clearing houses
for other organizations like Patients like Me, which is an
online platform where you can connect with other people that
(25:03):
have similar kinds of conditions. I don't know if you've
heard of the Spoon community in dealing with chronic illness,
and those are folks who are very much available online
and in social media, and those are for all kinds
of chronic conditions, and so those have been again just
very helpful to get people to on a day to
day basis with being able to have to deal with
(25:25):
what does it mean to live with these conditions? So
I would say more organized groups in terms of ones
that do advocacy and fundraising and research, but also groups
like I said on through social media that can really
just be that peer support seem to be really helpful.
Speaker 1 (25:42):
In fact, I could you mentioned that learning more about
autoimmune diseases has a bit of a detour kind of
in your training, and this is what you necessarily plan
for your career. What do you feel like learning more
about these conditions has done for you in terms of
how you approach public hell than maybe even your advocacy work.
Speaker 2 (25:59):
Yeah, thing that I honestly never expected to happen to me,
But I'm so grateful that it has because what it's
done is it really has addressed this an issue that
I don't have an autoimmune condition. I don't have close
family that have an autoimmune condition, so I can easily
feel like it's not that big of an issue.
Speaker 1 (26:21):
But when I've.
Speaker 2 (26:22):
Started to talk to people who have it, when I
start to understand what does it mean to not only
have an autoimmune condition, but to live with it, and
what impact does that have on your family, what impact
does that have on your community, That's when I started
to real and then what are these inequities that are
also here in dealing with diagnosing and treating these conditions.
(26:44):
That's where I saw this connection to the work that
I have done in the past, to the work of
the autoimmune community. So for me, I feel like this
has been a gift to be able to really sort
of see this group of people who are in many
cases having basically invisible disabilities, where people might not understand
why their voice might be affected, why they're not physically
(27:05):
able to do things even though they might look fine.
So I guess that all of this is to say
that this has been a real opportunity for me to
sort of be open to again a growing issue that's
affecting the population of populations that I care about.
Speaker 1 (27:22):
More. From our conversation after the break, you bring up
a really good point in terms of as being maybe
a little bit more of an invisible disability, And I
think that that brings additional challenges in terms of like
(27:42):
how to advocate for yourself. What suggestions would you offer
there for people to be able to continue to do that.
Speaker 2 (27:47):
Yeah, and I think that this is something that people
constantly struggle with. Because I can even think for myself
in my day to day life, I might also have
sort of feelings about I see somebody who's like parking
in the handicapped spot and they look fine.
Speaker 1 (27:59):
Right.
Speaker 2 (28:00):
It's about really educating us about this recognition that disability
is something that will likely affect almost all of us
at some point in our lives, and invisible or not.
As we age, as we are just exposed to other
kinds of conditions, this is likely something that will affect
us or somebody very close to us. So that's the
(28:20):
first thing, is to realize that this is not something
that happens to other people, and that we have to
also be aware that not only does this affect people,
but what are the sort of ways that we're able
to support people who have these disabilities? So I'm thinking
about things like, what about the people you work with?
What about people who are going through invisible disabilities? How
(28:41):
are we judging them? How are we maybe making sort
of jumping to conclusions we should be asking people? Right,
we should be open to being able to understand that
most everybody's going through something, and that to be able
to try to understand that and to be open to
that is important. So I think for me it's been
a real humbling experience to sort of recognize I was
(29:03):
bringing in a ton of assumptions when it comes to disability,
and those assumptions were wrong. And this has really been
an opportunity for me to recognize that, yeah, most people
are going through something and to be able to be
sensitive to that and to be empathetic is just has
changed really how I've approached the way I do my work.
Speaker 1 (29:24):
Given that we know that more of the black community
is being impacted by autoimmune conditions, specifically things like loopiz.
Are you aware of any research teams that are really
diving into this work and maybe what would you envision
for the future of public health to maybe step more
into it.
Speaker 2 (29:40):
So I'm not aware of the individual sort of groups
that are doing this, and I would hope that there
are more that are doing so, but I can say
that when it comes to public health, this is an
area that needs to have more attention drawn to it.
Of course, public health is going through a lot of
turmoil right now, right when it comes to funding and
dealing with things like vaccine. But here's the thing. Living
(30:02):
with an autoimmune condition is something that is not only growing,
but it's something that is disproportionately affecting populations in a
way that make us recognize that until we do pay
attention to them, people will not get the type of
treatment that they deserve and recognition, and so research, I
would argue, really needs to be sort of connected to
(30:25):
other chronic diseases and living with chronic diseases, but also
the recognition that the issue with autoimmune conditions are that
they are increasingly not recognized and so to be able
to have that research that, again from a public health perspective,
it's absolutely important to be able to put that within
a context of health equity of being able to address
(30:49):
this similarly as other issues like maternal mortality, and for
us to be able to recognize that it's not okay
to have people go through these conditions and through what
they have to do in a health system just to
get the care that they deserve.
Speaker 1 (31:05):
Thank you for that. I want to go back to
something that you mentioned earlier in our conversation around you know,
some of these symptoms kind of being misattributed to things
like diet and weight. You talk about like why that's
such a harmful and damaging narrative, especially when we're talking
about autoimmune condition.
Speaker 2 (31:20):
Absolutely, so we know that there is weight bias with
our clinicians. This is not only something that and again
there's weight bias with the whole population, So clinicians are
part of the population, so this is not something that's
particularly special to them. But I think one of the
things we've realized is that many of the narratives around
dealing with weight have to do with a lack of
(31:42):
self control or somebody just not doing the right thing,
or why don't you just listen? And I've heard this
from physicians, and it's an extremely damaging narrative because it
basically puts the responsibility on someone's ability to either listen
and do the right thing or to be that sort
of recault patient right, And to me, that is obviously
(32:05):
absolutely the wrong perspective. I think one of the things
we've seen with these GLP one drugs and other kinds
of drugs to be able to address diabetes and weight
is that, oh, it actually has some sort of component
that is connected to your brain and to hormones. And
the point is is that we have seen that that
narrative that has been pushed before around your self control
(32:27):
has shifted as we have you now new pharmaceuticals that
are able to address it, and in doing so that
sort of hopefully will also shift this idea of the
bias around weight. That sort of again means that people
don't get the kind of more in depth testing and
being taken seriously with their symptoms.
Speaker 1 (32:49):
So what would you say to someone, doctor Hackett, who
maybe has a new diagnosis of an autoimmune condition and
maybe struggling with how to make sense of all of this,
What kinds of things would you offer to them?
Speaker 2 (33:00):
So I think one of the key things in this
is definitely what I've heard through my people I've talked
to in the podcast is that managing an autoimmune condition
takes a village, so don't try to do it alone,
and don't feel guilty about needing support. Building your support
network is actually as important as taking your medicine, and
(33:22):
so asking for help is not a weakness in these conditions,
it's a strategy. Really, you're managing a complex medical condition
and while trying to live your life, raise your family,
and purdue your career, so that takes tremendous strength, and
so having a support system helps just makes you more effective.
So maybe that means you need to get extra help
(33:42):
with meal prep or cleaning your house or other things.
The idea is not to be afraid to be able
to ask for that and to be able to recognize
that this is what you need and deserve to be
able to manage a complex condition.
Speaker 1 (33:58):
Thank you, Dakna Heckett. I would imagine that podcaster was
also not on your job vision board. That's something that
you saw yourself doing likewise was not online. But it
is an interesting I think avenue when you think about
public health, about being able to share health information. Can
you talk to us about how you see this as
an avenue for public health and how do you balance
(34:21):
being personable and relatable with the conversation around like some
very jargon heavy kind of you know, clinical terms, like
what's the balance for you there?
Speaker 2 (34:30):
So I think for me, it's recognizing that people are
at the center of this, and people are at the
center of public health. And I think that often gets
dismissed in some ways when we think about statistics, when
we look at data, right, and we forget that there
are people attached to each one of those numbers. And
so I have always been interested in people's stories and
(34:53):
how people are understanding their perspectives on how they understand
their world. And so for me to be able to
talk to people and to understand their individual stories and
then to take their individual stories and connect it to
the sort of larger conditions that we see, I think
to me is a way to get people to really
(35:14):
sort of recognize that just because you're going through something
doesn't mean that you're wrong. You did something that was
some behavior that was inappropriate, but that can very often
be connected to the systems that we are living in.
And I think people don't see those systems until it
sometimes it's pointed out to them. And so for me, also,
I'm a sociologist too, so I think about things in
(35:37):
this way where it's our own experiences are often connected
to the experiences of others, and that's really where the
power comes from when we start to say that this
is not an individualized kind of failing, but that we
are part of something that has in many cases happened
to us, and that we need to be able to
(35:58):
reclaim our power, to be able to sort of say,
here are the ways that we are now demanding to
be able to address these issues. So to sort of
wrap it up, I would say, for me, I absolutely
see storytelling as a part of public health and a
part of what we need to do to just really
kind of increase our humanity and our connection and our
(36:19):
empathy to each other, which I think is really, in
my opinion, the way that we're going to solve many
of these issues that we are currently dealing with.
Speaker 1 (36:29):
I agree, Thank you for it. So what advice would
you give to eighteen year old future doctor Hackett?
Speaker 2 (36:36):
I probably give her the same advice I give myself today,
which is I have a quote here by my computer.
It says, the privilege of a lifetime is to become
who you truly are, and that's Carl Jung And I
think for me, it's really allowing yourself to recognize and
to realize and to explore and to understand who you
(36:57):
truly are. And how do you do that? I think
it comes from listening. I think it comes from listening
to yourself, listening to the messages that you're getting from
the universe and from others, and being able to discern
what are the things that are going to get you
(37:18):
to that very next step. So it's listening and being still,
but it's also recognizing that this is a process for
you to find out who you really are.
Speaker 1 (37:29):
And where can we stay connected with you? Doctor Hackett?
What is your website as well as any social media
channels you'd like to share?
Speaker 2 (37:35):
So my main social media is LinkedIn, which is perfectly fine.
So that's where you can find me a Martine Hackett
on LinkedIn. And I also have co founded an organization
called Birth Justice Warriors where we address black maternal and
infant mortality on Long Island, and that's Birth Justice Warriors
dot com.
Speaker 1 (37:57):
And where can we listen to the podcast?
Speaker 2 (37:59):
The podcast is avail where all podcasts are available. So
it's Untold Stories Life with a severe autoimmune condition. Perfect, well,
we should include all of that in our show notes.
Thank you so much for sending some time with you today,
doctor Hackett. I appreciate it, Doctor Troy, it was my pleasure.
Thank you.
Speaker 1 (38:17):
I'm so glad Doctor Hackett was able to join us
and share her insights and tips on advocacy with us
for this conversation, So learn more about her work, or
to check out untold stories Life with a severe autoimmune condition.
Be sure to visit the show notes at Therapy for
Blackgirls dot com slash Session four twenty four, and don't
forget to text this episode to two of your girls
right now and tell them to check it out. Did
(38:40):
you know that you could leave us a voicemail with
your questions or suggestions for the podcast. If you have
movies or books you like us to review, or have
thoughts about topics you like us to discuss, drop us
a message at Memo dot fm slash Therapy for Black
Girls and let us know what's on your mind. We
just might feature it on the podcast. If you're looking
for a therapist in your area, visit our therapist directory
(39:01):
at Therapy for Blackgirls dot com slash directory and don't
forget to follow us on Instagram at Therapy for Black Girls,
or join us over in our Patreon community at community
dot Therapy for Blackgirls dot com. This episode was produced
by Elise Ellis, Indechubu and Tyree Rush. Editing was done
by Dennison Bradford. Thank y'all so much for joining me
(39:22):
again this week. I look forward to continuing this conversation
with you all real soon. Take good care,
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Law & Order: Criminal Justice System - Season 1 & Season 2
Season Two Out Now! Law & Order: Criminal Justice System tells the real stories behind the landmark cases that have shaped how the most dangerous and influential criminals in America are prosecuted. In its second season, the series tackles the threat of terrorism in the United States. From the rise of extremist political groups in the 60s to domestic lone wolves in the modern day, we explore how organizations like the FBI and Joint Terrorism Take Force have evolved to fight back against a multitude of terrorist threats.