Highlighting Black Invisible Illness Voices: Amanda Millie

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