Continuing our series highlighting Black voices in the #invisibleillness community, we are so excited to share our latest interview with Amanda Millie. Amanda is a lifestyle blogger, model, and actress. She has been diagnosed with Hashimoto’s and Lyme disease. In this interview, Amanda shares her story on getting her diagnosis as a Black, female patient and how she manages her chronic illness symptoms as a mother of two children.
Find more about Amanda Millie on Instagram and FB @mandsmilliebsite , Blog: AmandaMillie.com Some resources she recommends are:
Book “Hashmoto’s Protocol” by Isabella Wentz
Health Unlocked : Insta, FB, Twitter @HealthUnlocked
Lyme Disease Association : FB @LymeDiseaseAssociation / Twitter @LymeDiseaseLDA
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*This transcript is auto-generated
Hi everyone my name is Celine I'm the founder of Flowly we're a mobile app for
chronic pain and anxiety management as some of you know slowly teaches users
how to control their heart rate and their breathing to better manage their nervous system with everything that's going on with Covid 19 with the black lives matter movement we have been trying to figure out ways that we can stuff up and we wanted to take this opportunity to amplify black voices in the invisible illness community and so some of you might have seen our previous interviews in this series but today I'm super excited to introduce Amanda. Amanda is a lifestyle blogger model and actress living and working in London and Amanda is a chronic illness warrior and has been diagnosed with Hashimoto's and lyme disease she's joining us today to share her story and I'm really excited to have her. thanks for being here Amanda
thanks for having me
so I wanted to start sort of at the beginning of your journey with your chronic illness and maybe if you could share with people about you know when was the first time you experienced Hashimoto's or lyme disease symptoms and what was i journey like with those symptoms and then resulting in the diagnosis how long did that table was that
it was a really long journey for me from symptoms to diagnosis so i only really just slipped that most in 20 end of 2017 begin of 2018 so it's been about three years but i was experiencing a lot of symptoms for years so i was getting a lot of like chronic pain inflammation I had brain fog I constantly felt exhausted and I had no idea like why that was so I went from being a very active person to just not even being able to get out of bed in the morning from that there was like a lot of
back-and-forth it's like you know go to the doctor saying hey I think something's wrong you know like I'm having hot flashes in the middle of the night and I'm a
20-something year old woman so yeah I only know hot flashes from when I saw my mom go through menopause so I was like a little worried I mean my doctor said no no like you know it's it's probably nothing like we'll do some blood tests and check for diabetes and that Bassett from then because all my symptoms were not getting better I just seem to be getting worse and feeling like okay something is definitely wrong I'm going to the doctor I'm being told I'm okay but clearly I'm not physically mentally I just feel like really bad so it was a journey of actually having to
go outside of my doctor to try and get and go privately and then from that route try and go like to like functional medicine before I came full circle and found out that I had Hashimoto's and then once I found out Hashimoto's got on medication didn't get better so what is going on like I'm still so sick you know like it didn't make any sense to me then we'd like started investigating it more did more tests then I found out I had Lyme disease I would say I've been having symptoms late years but when I really active is that it noticing it was about 2015 being like all right wait I'm
not crazy there actually is something wrong with me took about three and a
half years
how many doctors did you have to see in that process
Oh oh my god so there was my own doctor and that didn't work out because he pretty much called me a hypochondriac hmm and then I try to go like private and even that was still like what I wasn't getting but kind of tests they weren't testing for the things that should have been testing for so it was literally just generic tests same as even with the Hashimoto's I know it might be a bad word we'll just test for TSH but that's
not the only marker that shows you know an autoimmune disease so even with that there's a lot of frustration okay now I'm like hemorrhaging all this money and
I think I went through about three or four doctors before I started going onto
forums and health forums and like yeah asking for help from people like if
anybody asks going through this there's a website specifically called shop I'm
not that was really really helpful and people were like right go to this person
they were doctor but the functional doctor and then I started to get answers
that's a story we hear all the time from all of our users that they have to go
through so many doctors before they get a diagnosis and we're gonna dive into
this even more later about how doctors just don't believe especially their female patients so my next question is you are the mother of two young children how did that change or kind of shape your experience with Hashimoto and limes like how did you start to manage both your symptoms while also being a mother sort of what's your takeaway from that
I think the biggest takeaway from when I got diagnosed because I went from being
a fully functioning very active person to just not being able to function and
get out of bed there's no being able to get through the day and having such
mental fog that you know I couldn't play with my kids I couldn't do the school
runs as normal I just did I came bed and I think it brought me full circle
because it actually made me want to get better for them for myself or for them
as well and it pushed me to look outside of just like what the doctors taught me you know like the doctors like okay take this medicine you should be fine and it's not really about clear cuts so I actually had to go within myself I had to
prioritize what's important for me so my life completely changed my social slope
has changed and my priority really just became me getting better so I can give
him a better quality of life and also just be able to be more present for my
kids were you diagnosed when you were pregnant with your youngest child or was the diagnosis come after you already had your children the diagnosis actually
came before I had my second child when my son came along he was that pregnancy was quite a surprise because to diagnosis we had wanted to try for
another child and I'd had I didn't I wasn't able it just wasn't happening I
wasn't getting pregnant you know and I think that also kind of
correlated with what was going on with like my diagnosis and my health so he
came along as it's just a beautiful surprise when we you know I'd kind of
given up on that and I knew that getting put those but it'd be really really hard
but then I was now at a point where I completely changed my diet I was trying to do a lot of things for myself to make myself better so like cutting out sugar
you know not eating any processed foods like trying to maintain my stress levels
you know that got into meditation and I really truly believe that that helped
and how do you feel like your identity as a black woman has shaped your
interactions with the healthcare system or even with doctors and nurses that
you've worked with um I don't think that the health care system is for black
women judging from my own personal experience because the the hurdles that
I had to jump through just to get a simple blood test it was like shocking
constantly not being believed when I'm going to the doctor no same book I think
there's one time and I had so much inflammation I almost had a hunchback
and I went to the doctor and was just like just take some painkillers you'll
be fine I started to think I was going crazy
that's initially how it was and the private health care wasn't any different
either it was literally me being told oh maybe you just have a low pain threshold
maybe you just need to relax a little bit and I'm like okay this is beyond
relaxing I'm I am suffering here and even when I had tests done I remember
the first first blood test
I got done privately my hormone Marcus
my thyroid markers were actually quite
low and I remember the doctor said me
yeah I know but they're not low enough
for me to treat you let's wait maybe in
about six months they'll get low enough
and then we'll treat you so I'm just
like if you can see there's a problem
show the prevention is better and I
didn't really think
there was anything racial about it I
just thought okay maybe that's just what
it is
but then I actually have a really good
friend who also got diagnosed with
Hashimoto's around the same time as me
but she is a white you know this woman
and she did not have the same experience
she went to her doctor and everything
just went smoothly and I don't know if
this is an isolated case but I
personally have not had good experiences
with being believed with I had to beg
for blood tests to be done like I had to
go there and it was only after my friend
had this test and I'd seen her blood
test but she said oh you should ask them
to test for this this so with the
information from her and her experience
I would then I was able to go not to my
doctor cuz he still said no I still have
to go and pay and get those tests done
and then go back to my doctor and say
see look this is what's going on so it's
been very frustrating I think the
biggest thing is just not being told
you're crazy
you know there's nothing wrong with you
not even being believed I don't even
have enough soot in the door where you
can actually be treated as a patient and
have the doctor actually do their job I
mean that's the basic of what they
should be doing I think it's so
incredibly important your story and your
experience because this is something
we've heard as I mentioned before time
and time again and so first of all women
are disproportionately affected by
chronic pain and a lot of chronic
illness conditions and especially women
of color and when you're talking about
these vulnerable populations already and
then they're also not being believed by
their doctors and general practitioners
in the health care system it's just
honestly just horrible like the amount
of effort that a lot of our patients
have to go through and our users on the
foley platform like they tell us
horrific stories is how many doctors
they have to convince people they have
to speak to and what I've learned is
that there is a resilience in the
invisible illness community because each
person while you have these common
threads across chronic illness
and this sort of experience everybody
has a very unique journey and but in
that journey the common theme I always
hear is that the person has to become
their own health advocate right like it
is the know single most important thing
is that you have to find sort of the
resilience in yourself to empower your
own voice to go and seek other doctors
or seek other health care systems or
private insurance and all this just so
that you can get you know the proper
diagnosis you're entitled to in the
first place how did you manage that and
how did you tell yourself like I'm not
crazy what I'm experiencing Israel and
yes people just don't understand or
they're refusing to understand how did
you you know empower yourself to do that
you know I feel like the change was
really drastic for me you know I was a
very very active person you know I was
like really into fitness and working out
and traveling and seeing my life and may
not even be able to do something as
simple as getting out of bed you know no
matter what my doctor was telling me I
knew that I wasn't crazy you know like
waking up in the middle of the night
drowning in my own sweat it was like
that's not normal so it I think you know
it's very it was very discouraging and I
think I definitely got depressed during
that those years just trying to get but
I knew that this wasn't normal
you know I knew that and I knew that my
this can't be in my life there's no way
that this is how it's going to be for me
I have two kids you know I need to be
there for them you know I want to be
able to play with my son I want to be
able to go to his recitals so
something's gotta give like what you say
when you become your own doctor I just
had to have that determination
resilience within me because I knew the
quality of life that I wanted to have
what are some tools that you used in
that journey or even now I help you on a
daily basis whether it's with your you
know mental health I know a lot of our
users have anxiety still manage
depression well what are some tools have
been helpful for you I would say the
maybe the two biggest thing that have
been really helpful in both managing my
pain and my mental well-being
the first has been my diet I completely
had to give my diet a total all the
whole cutting out sugar cutting out
processed foods and it actually really
did make a difference the second thing
was just really making time to like
meditate or do anything like to reduce
my stress levels so I was never like a
meditator before that or like even just
breathing you know I realized once I
started getting into that I didn't even
know how to be yeah that's crazy you
know that we're all just such shallow
breathers and like when I'll be told
take a deep breath I couldn't even do
that so introducing breath work and diet
has really really helped and when I fall
off sometimes you know it's like
Thanksgiving always Christmas and you go
to whatever you want I do feel it so
it's definitely become a way of life
understanding how to breathe is so
critical and that's you know basically
the core of all our work is trying to
get people to learn about their breath
because it's the key to managing your
unconscious system you mentioned like
I'm sure you're a very experienced at
breath work and that's one of the things
we're just trying to educate people on
and we teach people about their own
resonant frequency which is the breaths
per minute that each person has a
different rate and if you figure out
your rate it's the best way to control
your nervous system for your diet how
did you because each person is so
different I'm sure diets you know work
on different levels for each person but
how did you start to build your diet
structure and regimen was it through
forums you learned online did you work
with a dietician how did you guys start
to build that up for yourself it was a
mixture to be honest like I forums
helped a lot I'm not gonna lie because
it felt like I had to find a community
you know like I was just so alone and
even I didn't know what autoimmune
disease is where I'm before I had one or
two so even with most people like
friends or family around me they were
like what is Hashimoto's like what is
that nobody knows nobody knew so I felt
like I needed to find people who know
what I'm going to who can relate
and obviously with back then you share
resources I started looking up books and
Isabella whence is like really good or
writes a lot about Hashimoto's or the
Hashimoto's portable so I started
reading things and I tried a lot of
different things to find what works for
me and I realized that the biggest thing
for me I was quite addicted to sugar and
I had a lot of gut issues because of
that you know so that was the first
thing that had to go and then I think
once I removed the sugar and I got pasta
withdrawals after she was actually
really better to see that I felt better
and I was a little bit more clear-headed
definitely didn't happen overnight it
was definitely a process you know and
there are things that I've tried people
have told me try this and I tried it it
didn't work for me but sugar and
processed foods for me were like have
been the biggest change what are some
information resources or even groups
that you would recommend other people
maybe at the start of their autoimmune
disease journey that they look into
maybe maybe if it's specific to
Hashimoto's or even Lyme for both
Hashimoto's and lying there is an
international community called health
unlocked if you just go with health and
looked it will come up that to me was
such a source of strength and
inflammation there is other people
who've gone through what you've gone
through you can go and like say guys I'm
having this symptoms or if you like me
you're going through a process where
you've not you're not being believed by
a doctor they can help you so they can
point you may be in the direction of
where you can get private chats done
cost-effectively or they can help you
with how to actually go back to your
doctor and because they do have to give
you that care and get them to give you
the blood tests or whatever it needs to
happen so that's been a really really
great resource the Lyme disease
association is also really really good
if you want to know anything to do with
Lyme disease where you can get help all
those kind of big reading materials I
mentioned Isabella when it's Hashimoto's
protocol that's a really really good
book as well because she really goes
- how you can reverse your symptoms
through diet and mindfulness awesome so
my last question is how can people
follow you on your journey at any social
media websites my Instagram is at men's
movie ma and DSM iwl ie I also have a
blog which is Amanda millicom where I
blog about health lifestyle and anything
in between well I really appreciate you
being here with us Amanda I'm sure a lot
of people will resonate with your story
come back and join us anytime thanks for
being here
thank you for having me
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