September 21, 2025 • 36 mins
Beth Biss writes women's fiction that encourages and empowers women living with illness, sharing her personal journey from diagnosis to authorship through compelling characters and storylines.
• Beth became a writer after being a lifelong reader, first attempting to write in high school
• After a 35-year journey to get diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), Beth found little representation in fiction
• Beth's first book "Redolent" follows a college fashion student receiving a sight-threatening diagnosis
• Her second book "Radiant" focuses on an artist with ADHD navigating life challenges
• The books are part of a trilogy centered on female friendships and different chronic illnesses
• Writing has been therapeutic for Beth and offers readers three levels of engagement: escape, connection, and bibliotherapy
• Beth includes journaling prompts in her second book to encourage deeper reflection
• The conversation highlights how women are often dismissed in medical settings and face longer diagnostic journeys
• Beth emphasizes there's "no such thing as a normal brain" and everyone exists on a spectrum
• Accessibility features originally designed for disabilities (like closed captioning) now benefit everyone
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello everybody.
This is Steel Rose's podcast.
This podcast was created forwomen, by women, to elevate
women's voices.
I am very excited to introduceyou to our guest.
Today.
We have Beth Biss with us.
She lives in a small town inPennsylvania where she juggles
life as a reader, writer andmother.
She pours her energy intowriting women's fiction that
(00:20):
encourages and empowers womenliving with illness.
She is the author of two books,Radiant and Redolent, both
available now on Amazon.
Beth, welcome to the podcast.
Speaker 2 (00:30):
Thank you, it's so nice to be here.
Speaker 1 (00:32):
So, beth, I would love it if you shared a little
bit with the listeners about howwell I would love to hear your
story as to how you became anauthor, but I'm also very
interested in how you selectedthe genre that you're writing in
.
Speaker 2 (00:45):
Thanks, Well, I became a writer because I first
was a reader.
As a child, I read lots ofbooks.
The little town I live in had avery small library and very
little section for children andan even tinier section for teens
.
When I was a teenager, we hadone bookcase, the kind that
rotates.
(01:05):
You know that you see in thedrugstores.
Speaker 1 (01:07):
That was it.
Speaker 2 (01:08):
That was the teen section and even outside of the
teen section, and I rememberbeing excited when the teen
section went up because beforethat we didn't have a teen
section, so that library now hasa whole room dedicated to teens
.
So I'm feeling a little jealous.
So, like many authors, I read alot and when I was in high
(01:29):
school I wrote some things, whatseems to be obligatory angsty
poetry, which is terrible, whichwill never see light of day,
ever, ever.
But I also wrote some shortstories and I gave those to my
English teacher and she said youought to be an author.
And I'm like huh, well, yes, Iread lots of books and somebody
has to write them.
I don't know.
And then I put it out of mymind.
(01:50):
I had a goal.
I went to college, I wanted togo to psychology, and so that's
what I did.
I didn't think about it for awhile and I did a lot of writing
for myself.
I hope it improved.
It still is personal, it wasfor me.
But I did a lot of journalingand later that the sacred
covenant between me and myjournal got violated and someone
(02:12):
read it and I freaked out and Istopped writing completely.
And then after a while, when Iwas in my 40s, early 40s, I
started reading things and beinglike I'm not in these stories,
I'm not in these books and Iwanted to see myself in the
stories.
And then I finally found a bookwhere I thought this person
(02:33):
could almost be me.
So at that point I already hadmy diagnosis I have POTS.
I have a lot of brain fog,dizziness, confusion, things
like that.
And I was reading a story abouta man who had a traumatic brain
injury and the way the authorwas describing the symptoms I
was like this person is a lotlike me.
(02:53):
It was very exciting.
It was very exciting to feellike I finally could relate to
someone and to really go yes,you get it.
I mean, I know it wasn't real,but to feel like there's a story
out there that it felt like mystory was very exciting.
Fortunately for me, at the endof the book this man recovered
from his traumatic brain injury,which in reality may or may not
(03:15):
happen.
It doesn't always happen.
But I was upset and I threw thebook across the room Sorry,
library, I threw the librarybook across the room because I
no longer connected to thischaracter and after about a year
or so stewing over that, tryingto find another book that I
felt like I related to.
I thought I could write a story.
So I started writing storiesthen.
They weren't about people withan illness, though, they were
(03:37):
just stories I thought would beinteresting.
Tried to write a first book.
It did not go well.
I couldn't get to the end.
I didn't know what I was doing.
I got confused.
I gave it up.
A couple years later I triedagain and it was.
There were different methods forwriting a book and this
particular method didn't workfor me.
I thought I'd try it.
You gotta try it to know ifit's gonna work.
This woman was suggestingwriting in longhand, filling up
(04:00):
a paper spiral notebook.
I mean, if four of them filledup, that's enough material for a
novel.
Well, I enjoyed the process ofwriting all that out.
My handwriting was terrible.
Taking all those words I'dscribbled and getting them typed
into the computer I found I didnot like.
So that method didn't work forme.
But I tried to learn lots aboutwriting and learned about story
(04:25):
structure, character developmentand all kinds of things.
Unless you're a writer, youdon't really need to know, but I
learned about these things whenI started again, and this time
I had this question in my mindwhile I was in the shower.
I closed my eyes and I thoughtwhat would it be like to go
through a day without being ableto see things?
And so this little nugget of aquestion was something that I
(04:46):
thought there's a story in thissomehow.
And so that's where I got myfirst ideas for my first book,
redland, which I releasedSeptember 18th 1924.
And so in this story, the maincharacter is Sonia.
She is a college student withthis goal of being a fashion
designer.
This is her goal.
She wants to go into fashion,and she starts having trouble
(05:10):
seeing things and goes to anoptometrist.
It's a diagnosis that isheartbreaking for her, because
it means she will be losing hersight, maybe not completely.
Who knows how long it will taketo other things.
You just don't know.
You don't know Something willhappen, but the doctor couldn't
tell her how quickly.
The doctor couldn't tell herhow much she would lose.
The doctor couldn't tell her,would she eat?
(05:30):
Her color vision Forfashionists being able to see
color is pretty important.
So you know she's reeling fromthis.
What am I going to do?
How am I going to live withthis?
And so the rest of the story.
It's her figuring out how do Ilive with this, because it is
changing everything in my life.
Can I be a fashion designerwhen I'm losing my sight and I
(05:51):
don't know how quickly it'sgoing to happen?
I'm still in school.
She wasn't a designer yet.
She was still training for that.
And what does she do abouttelling people?
What did she do about makingaccommodations in her life?
What does she do aboutfulfilling her goals?
Is she going to have the samegoal or do her goals have to
change?
She also learned some thingsabout her mother and some things
(06:12):
about her own family that playinto how she decides to make
decisions about this.
I'll give those away, and Ithought I want to have something
else in the story about herSort of.
I didn't want to keep writingthat story.
I wanted something a littledifferent, and so this is where
I got the idea that I will writestories that are around
(06:34):
friendships and look at thethree different friends.
So I'm working on a trilogy, mysecond book.
It's on pre-order now, but itwill be released October 1st.
It's Radiant, and Radiant'smain character is Dani, and Dani
is an artist.
Dani also has ADHD.
Now, when the story starts,dani knows she has ADHD.
She's very aware that that'sher diagnosis.
(06:55):
She's aware.
But it really does challengethe way she lives and how she
chooses to do things and how shemanages to get things done.
So I thought I want to writeabout friends.
I want to write about anillness of some kind.
I clearly want the illness tobe different.
You want to read about the sameillness over and over and over?
It would be super fun.
So I have a different illness.
Speaker 1 (07:15):
I'm working on my third book already, which will
be about Lynn and her illness,so that we read it next year
know I, I wanna, I wanna justsay here I think it's really
important what you're doing here, because most stories will have
like a happy ending, like whenshe survived and she got the
love of her life and it's allgood, or she yeah, pregnancy was
(07:39):
uncomplicated, she's totallyfine.
And we know that this isunrealistic, like we know that
like the reality of it is.
Like there are people out herethat this is not their story and
the day to day they don't knowwhat's going to happen.
And I think shining a light onpeople that have to live with a
chronic illness or an illnessthat's, you know, told to them
(08:02):
like this is going to kill youat some point, like this is
going to end your life at somepoint.
It might not be directlyrelated, but it will be like a
symptom of something that gotaffected.
We have a family member livingwith a chronic illness and we're
seeing the end.
You know, we're starting to seelike the signs and that kind of
thing.
So I think this is huge,especially for women, who quite
(08:24):
often are dismissed for medicaland dismissed quite a bit, you
know, in, you know in medicalsettings, and I think that
taking that journey with them isgoing to be incredibly
impactful in your books, andeven if you don't have a chronic
illness, really I mean I feellike this is very impactful.
I also really love and I wantto say this too that you're
(08:47):
focusing for the angle ondeveloping the female
relationship.
Speaker 2 (08:51):
Yes, my focus is the friendship.
Yeah, the friendship is theimportant part.
So they may or may not have alove interest, they may or may
not have that relationship yet.
They may or may not.
Their family relationshipschange.
Sometimes they get better,sometimes they don't.
The point is, the friendshipsare there for them.
The friendships struggle.
Friendships go up and down.
(09:12):
So in the course of my story thewomen learn something.
The main thing is they learnsomething about themselves that
helps them.
There's some revelation theyhave.
Oh, I have to do thisdifferently.
I absolutely have to, becausethis illness is forcing that
upon me.
And what choices do I make?
And what, what?
What options do I have?
And then what choices do I makebased on that?
(09:34):
And sometimes the options don'tlook good and they choose the
lesser to evil.
Sometimes they're like I don'twant to do this.
There's something I want to doand I can't.
So what do I do Now that I'vebeen going after this thing over
here?
It's absolutely blocked from me.
How do I pick the pieces fromthere?
I personally have dysautonomia.
That's the umbrella term for anumber of illnesses I've been
(09:57):
diagnosed with.
Dysautonomia means adysfunction of the autonomic
nervous system.
So that basically means all thethings your body does, that you
don't have to think aboutBlinking digestion, heart rate,
blood pressure, breathing, tearproduction.
Speaker 1 (10:12):
Yeah, just things that happen naturally yeah.
Speaker 2 (10:16):
All those things can go wrong.
Now, for some people they allgo wrong all the time.
I mean, there are varyingdegrees for this.
So I have POTS, which isPostural Orthostatic Cardiac
Syndrome, which means I have ahard time when I stand up or I'm
exercising.
I have a hard time with myheart rate.
Pots will make your heart ratego up.
(10:36):
And you might think well, heartrate, well you know, not a big
deal.
However, the heart rate, whenyour heart rate goes up, your
body system is all reacting tothat.
The rest of your body thinks,oh, I'm either fleeing from
something or I'm exercising, andthe rest of your body systems
react accordingly, which is notfun.
I also have orthostatichypertension, which means when I
stand up or exercise, bloodpressure drops.
(10:59):
So yeah, those two are alsorelated.
If your blood pressure drops,your heart rate increases.
Speaker 1 (11:03):
To try, to balance it .
Oh my gosh yeah.
Speaker 2 (11:07):
And also I also have a problem with my blood vessels
not working correctly so thatthe blood will sink down to my
feet.
If it's at your feet, it's notin your brain.
If it's not in your brain,you're not thinking very well.
Speaker 1 (11:18):
And that's where brain fog comes in.
Speaker 2 (11:19):
That's what we're talking about yeah, yeah, yeah,
and then also have temperatureintolerance.
Your internal thermometer ispart of this autonomic nervous
system and for a long time, foryears, it was cold all the time,
cold, cold, cold, cold.
Didn't quite understand whyit's part of this constellation
of illnesses.
Now, these different problemsbrain fog, poor circulation,
(11:41):
having temperature intolerancethey show up in a lot of
different illnesses.
A lot of different chronicillnesses have those.
So it took me 35 years to get mydiagnosis and I've been asked
numerous times do you havechronic fatigue syndrome?
Do you have fibromyalgia?
Do you have to?
I'd say no, are you diagnosingme with that strange disease?
(12:02):
And they'll say no, no, no, Ican't diagnose you with that,
but you're going to be diagnosedwith.
I was never diagnosed with allthe various things people told
me I was going to be diagnosedwith.
So chronic illness is trickyfor women.
Fortunately, until the late 90smost women were not included.
Sorry, I'm saying that wrong.
(12:22):
In most studies of illnesseswomen were not included.
They did the studies that metand so they didn't really
understand illness in women andmost women more women than men
get a chronic illness.
It's just more prevalent amongwomen, and why they didn't see
women I don't understand,although the common explanation
was well because of themenstrual cycle, we didn't get
(12:45):
good data, so we excluded womento get better data.
Speaker 1 (12:49):
But it's like the data is almost like irrelevant.
You know I've talked about thisquite a bit because even you
know when products are beingdeveloped, medicines are being
developed, they're tested onmale subjects across the board,
like male animals, male mice youknow, like it's male subjects
across the board, because it'seasier to work with versus
having to deal with women andall our things, which, I must
(13:10):
say, the more I think about that, the more I say to myself I'm
like, wouldn't you want to, like, divide into it and really
dissect what is happening inwomen's bodies?
I mean, imagine and I'm goingto put my marketing hat on
Imagine, imagine the followingson women that a product would
(13:33):
get if we knew this was testedon women and we know that this
was developed purely for us.
And you know, even if it'sthings that are like information
that's being released to us,data that's being released to us
the amount of following thatwomen would do just to find an
answer.
I mean, beth, I have to ask you, how long did you have to wait
(13:56):
until you had a diagnosis?
Speaker 2 (13:58):
So I started having symptoms in 1985.
I got my diagnosis in 2018, 35years.
I spent 35 years going tovarious doctors saying I've got
these strange issues, notknowing to mention all of the
issues to any one doctor, but Imentioned different things, and
so I saw about four or fivedifferent cardiologists
(14:19):
concerned about things, and Isaw allergists, the GPs.
I ended up in the emergencyroom with stuff.
I just didn't know what wasgoing on, and so that's why I
got all these different notdiagnosis these different
suggestions.
Speaker 1 (14:32):
Suggestions of what we think it might be yeah.
Speaker 2 (14:35):
And I'd go to ask I'm not talking about that, and
they'd say, no, you actuallydon't have that.
And the way I got my diagnosis,funnily enough, was from
Facebook.
I was complaining, I wascomplaining, I am not surprised,
keep going.
Speaker 1 (14:48):
Yeah, I was complaining.
Speaker 2 (14:49):
I am anemic again.
I'm going back for infusionsagain, really concerned.
I'm tired, I'm dizzy, I'm sickof this.
I wish I knew what to do.
And I had a friend from mygraduate school write to me and
say you know what?
Some of these things youdescribed sound like something I
have.
Please call me.
And so I called her with Jadafor a while and she asked about
(15:11):
my symptoms and what was goingon, and she described what was
going on for her.
I said that sounds very similar.
She said, okay, I have POTS.
You need to talk to your doctorabout that.
So I went to my GP about thatand she had never heard of POTS.
She'd never heard of it.
Now, that was 2017.
I live in a small town, butyeah, she'd never heard of that.
(15:31):
I had no idea.
I had to look it up.
It was like, oh well, good,yeah, all these different things
, yeah, that could be.
Yeah.
I by then also, unfortunately,freaked myself out by Googling
it.
Speaker 1 (15:44):
Of course.
Of course I did Of course, assoon as you mentioned it, I
Googled it to see what it was.
Speaker 2 (15:50):
Yeah, Now at the time just what the algorithm was
doing.
At the time it freaked me outBecause the thing that came to
the top was the discussion inthe article about the form of
POTS.
That's fatal and I freaked out,I shut the laptop, I went away
and I thought about that about aweek later.
I'm like wait, wait, wait, wait, wait.
(16:10):
I've had these problems since1985.
Probably don't have the fatalone, because the fatal one.
Speaker 1 (16:16):
You die within five years of diagnosis.
I can't believe you've livedfor 35 years without an answer.
I'm like I'm still blown awayby the length of time.
I mean I shouldn't be because Ialready know the research,
because of what I do for aliving, like I already know the
barriers and I know how theability to diagnose was for
women.
But to hear you say it is likemind boggling.
Speaker 2 (16:36):
It's much better now?
Not much.
And I have to say, as much as Idon't like the fact that COVID
rocked the world I mean it shookus to our core Definitely it
really improved POTS research.
A lot of the people who arediagnosed with long COVID
actually have POTS.
That's what they have.
They have POTS, yeah.
(16:56):
So it's sort of beenquasi-reneved, as you know, long
COVID Because the people whohave long COVID sometimes
recover from it.
A slighter greater chance ofrecovering from that than if
you're diagnosed with POTSparticularly.
No one seems to know why thatis, but some people do recover
(17:17):
from POTS-like symptoms thatwere caused by COVID and that is
COVID, the virus, not thevaccine.
Speaker 1 (17:24):
Yeah, yeah, no, I knew what you meant.
Thank you for clarifying,though I have a question for you
, beth, since you went throughwhen did you start writing?
When did I start learning nowriting?
When did you?
Speaker 2 (17:31):
start writing?
When did I start learning?
Speaker 1 (17:33):
No writing.
When did you start writing yourbooks?
Speaker 2 (17:36):
I started writing in 2022.
Speaker 1 (17:38):
So my question to you here is you know I love that
you took something and I'm goingto say this every episode that
I have a guest, because all ofthe guests that come here I am
incredibly impressed with youtook something that happened to
you.
You recognized that there was agap and then you did something
about it.
Now I know my personal feelingson how writing impacts our
(18:01):
lives and our mental health andeverything about us, but I'm
curious to hear your thoughts onif the writing was almost
therapeutic in a way.
Speaker 2 (18:10):
Definitely.
The writing has definitely beentherapeutic for me.
I think it also offers anopportunity for readers for it
to be therapeutic as well.
I know that readers read for awide variety of reasons, and all
the reasons are valid.
Any reason you have for readingis a great reason to read.
But I sort of think about it inthree different levels.
Some people read to escape orget away and there are plenty of
(18:34):
things to escape from, butreading is a great way to get
away from whatever is going onin the world that you want to
get away from.
You can also use your readingto connect with other women.
I think book clubs arefantastic.
I think book clubs offeropportunity.
Different people suggest a book, and so that opens up your
reading experience.
(18:55):
It opens up your eyes to othergenres and authors, that sort of
thing.
The group might have a focus onauthors from a certain country,
or it might have a focus on acertain genre, I mean, so you
can really experience a widevariety of books you ordinarily
wouldn't do for yourself.
That's great.
That's an opportunity there.
(19:15):
Then there's also a level evendeeper than that, and I've been
learning about bibliotherapy.
I've been studying about it.
Now, I am not a psychiatrist,I'm not a psychologist, but it
interests me a lot that peoplecan use the journey that happens
in a book and it is even yourown life.
You can compare it, you couldtranslate, you could say what
(19:39):
did this character learn thatmaybe I could learn?
Or how did this character dealwith things that I think really
messed them up?
You can look at it positivelyor negatively, but taking that
character journey, taking whatthey've learned, taking how they
do things and applying it toyour own life, looking at your
own life and reflecting, doesthis person have a similar
(20:02):
childhood to what I have?
Have they learned from it?
Are they growing from it?
Do I need to learn somethingfrom that?
Or can I look at them and go,okay, I felt bad about my family
, but now I can see what theyhave is worse.
I mean, that's how I look atthem.
But sometimes you need to lookat yourself and go, okay, I'm
(20:24):
not that bad.
So I didn't include anyquestions in my first book, but
at the back of my second book,at the back of Radiant, I have
journaling questions.
Now you could use these in abook group.
You certainly could use it thatway, or you could take each
question and spend some time andreally dig into it and journal
about it.
But if you just want to readfor entertainment, please read
for entertainment few books.
Speaker 1 (20:46):
I was sharing with beth's listeners earlier that I
and I think you've all heard mesay I like to buy everyone's
books that come on the show so Ican read it and I want to hear
about it Once I get to talk tothe authors and I can hear your
backstory.
It's almost like I read thebook and then I can see you.
It's a very interesting thingfor me.
(21:06):
But some of the books that I'veread had such a deep impact on
me from, I mean, just anotherlevel, and I actually did do
pretty much exactly what youjust described where I.
One of the books was pertainingto this woman's menopause
journey and I'm in my early days, only 40, well, I'm turning 42,
(21:27):
I think, or 43.
I'm getting the further I gointo my 40s, the more I'm like I
don't really know what it is,but you know I'm, you know,
getting in there a little bit.
So I'm experiencing all theperimenopause bliss, if you will
, and I started journaling aboutit because I read this woman's
book and I saw her story and,while I'm not going through it
(21:49):
quite as violently as like shedid, it was also like what you
said, almost like an eye openingexperience for me to read it
and be like, wow, like that'sreally awful, and then it's also
making me more mindful, and theolder I get, the further I go
into this journey to be like,well, I'm noticing I'm starting
to lean more towards like stuffthat I don't want to experience,
(22:10):
this Like let me make sure Italk to a doctor, and it's like
it's helping me in that sense.
And then there was another bookthat I had read from one of the
women who came on the show.
It was historical fiction, butit was around the women's
movement, and reading that bookreally blew my mind as well and
I journaled quite a bit about itbecause it gave such a
(22:31):
different perspective and I wasable to read, like what it was
really like for young women inthe 60s, 70s and 80s and like
it's it explained to be honestwith you explained so much to me
that it made me thinkdifferently about my mom and
things that she said to me,because I was like, oh my god,
like this is what you werebrought up, thinking this is
(22:52):
what, how you were raised, andI'm over here like trying to
figure out, like why don't youunderstand what I'm saying?
Or why don't you understand myfeelings it's because it was a
whole different time, acompletely different era.
So that's like that is huge,and I think it's wonderful that
you put journal prompts in theback of your book, especially
for folks that are going throughchronic illnesses and having to
(23:13):
deal with this.
And it's the whole, their wholelifetime is going to be
affected by this.
I know several young peoplethat my children are friends
with that have already beendiagnosed with lifelong
illnesses and you know theparents are doing what they can
and they're making sure that thechildren are talking to people
and becoming adjusted.
And're making sure that thechildren are talking to people
and becoming adjusted and likemaking sure that they're helping
(23:36):
them through the journey,because this is, this is going
to be a big journey.
Speaker 2 (23:39):
Yeah, I know that.
So I will do different illnessfor each book.
For this one that's coming outRadiant, it's about ADHD, and so
I had to do, I had to doresearch, I had to do some
interviews.
Think about this, Of course.
What's your types of thecomputer?
You get stuff.
Speaker 1 (23:56):
Oh, I've been about it.
Speaker 2 (23:58):
A 4U page.
So my 4U feed was all kinds ofthings, all kinds of dirty,
spicy things, which made me stopand go.
Huh, oh, this kind of soundslike me.
Speaker 1 (24:10):
I know Huh.
Speaker 2 (24:12):
Oh, that kind of sounds like me.
I know, huh.
But also I recently wrote inthe news that I set up that my
aunt taught for the LincolnIntermediate Unit out in
Pennsylvania.
I don't know if this is anationwide thing, the Lincoln
Intermediate, I think it's justa Pennsylvania thing.
But it's a special designatedprogram for some specific
(24:33):
counties that give specialeducational assistance to all
those counties.
Some aunt didn't work for oneschool district, she worked for
many school districts, so theyall came together to put
children in the classroom and sothe population kind of changed
over the years.
She did some learning support,she did some learning disabled
(24:54):
support, she went intoneurological support.
She did some learning disabledsupport.
She went into neurologicalsupport, she did emotional
support.
So her classroom varied alittle bit over time.
But these were all kids with avariety of neuro-spiciness,
we'll say, and how much it wasvaried the program changed.
I mean, she did this for 29years so it varied from year to
(25:16):
year what population she wasserving in that classroom.
But I know that some of theseare not so cut and dried and
some of them so it's on aspectrum.
Do you have a little bit, do youhave a lot?
Yeah, my son is nervous by hisself.
I took him in multiple no twotimes.
I took him two times to betested for autism.
(25:36):
When I first took him in he wasthree.
At that point they were veryconcerned about what was his
language like.
How was his language learning?
Can he speak?
I'm like, well, yes, I mean,that's not what I was concerned
about.
He had been looking at three.
He'd already learned a hundredsight words.
I mean he was a bright littleboy, so the language component
(25:57):
wasn't the problem that I'veseen and they were teachers
specifically geared towarddealing with children who had
language difficulties.
And so I'm like, oh no, he'snot autistic.
No, definitely not.
Then later in third grade Ihave teachers coming and going.
We've got some problems.
He's doing some self-harming,he gets upset with something and
(26:18):
this isn't normal.
So I took him back and thispsychologist said if only you
brought him in six monthsearlier, because they just
changed the DSM.
They put out a new edition andthey changed the designation.
Like autism spectrum grew alittle bit, the different
classifications he were lookingfor changed.
(26:38):
They took away, was sort ofremoved as a diagnosis.
And the guy said if you broughtme a little bit earlier you'd
get the diagnosis of Asperger's,but not now.
I'm like so what is he?
He said let's just call himSpicy.
He's Spicy, one thing.
Speaker 1 (26:56):
You just said.
Let's just call him spicy.
Yeah, he's spicy.
One thing you just said.
One thing you just said I dowant to make clear for the
listeners and viewers that arewith us the guidelines that
doctors follow are updatedannually.
In some instances every fewyears, new guidelines are
released for diagnosis acrossall disease states.
You will hear like and theseare these organizations do this,
(27:17):
where and they have all the toptop doctors with them they come
out with new diagnosis andguidelines and that's actually
how things will shift, likeyou'll see.
Like, for example, I thinkthere's a stronger push now for
doctors to actually speak withpatients and sit and take time
with them, and there's a lot oforganizations that are coming
out with inpatient advocacygroups that will come out with.
(27:38):
You know, patient support toolsthat you can bring with you to
an appointment, gynecologyspecifically.
I know they have these things.
If you look up online like Ineed a patient support tool for
my appointment, I always forgetto ask questions they have all
these things available.
So you know you can use theinternet for this and find
something that will help guideyou.
Something, beth, I wanted to sayto you.
(27:58):
You probably saw this in yourresearch.
I was actually a littlesurprised to read this that
women majority of women will getdiagnosed with ADHD in their
adult life, during menopause.
Because and I was reading itrecently that it's like, because
of the shift in hormones andmenopause and because of
(28:19):
everything that your body goesthrough, you likely had a VHD
and figured coping mechanisms tobe able to deal with it your
whole life, but when you gothrough menopause you can no
longer use those copingmechanisms because your body,
your own brain, are starting toreally break down and change and
that veil starts to deteriorateand you can't use it anymore as
(28:40):
a support.
And I read that and I was likeI've never been diagnosed, never
really had like a problem withschoolwork, and you really won't
hear me complain about that,but I am heavily reliant on
making checklists for myself.
I have to write it down, andeven when I'm on phone calls, I
need to have checklists formyself.
I have to write it down andeven when I'm on phone calls, I
need to have notes generated forme.
I need to have everything inwriting in order for me to
(29:02):
really understand it.
And now I see it more and morethat I'm like really leaning on
these things.
I'm like I need them.
Speaker 2 (29:11):
The thing my research has really taught me is there's
no such thing as a normal brain.
The fact that we talk aboutnormal people is really a
disservice to people.
It doesn't matter what we'retalking about, whether it's
about your height or your weight, or your vision or your hearing
or the way your brain functions.
It's all on that bell curve.
(29:32):
Now, I know the bell curve, forsome people gives them hives
because they think about schoolbeing great on the bell curve.
Unfortunately, I know the bellcurve, for some people gives
them hives because they thinkabout school being great on the
bell curve, but unfortunately,that's where it is.
That's where life is.
Life happens on that bell curvethat the majority of people
happen at bigger parks.
That's where there's morepeople falling.
That's average.
That's not normal.
That's average.
Speaker 1 (29:53):
And you have higher and lower.
Speaker 2 (29:58):
You go out on the corners for the audience many
people.
So, yeah, we are somewhere onthat bell curve, if you think
about it that way, trying toteach Ives.
But my aunt, the one who taughtall these years at the LIU was
saying that everybody has adisability of some kind.
Everyone does of some kind.
Everybody has a disability ofsome kind.
Everyone does of some kind.
Does she happen to work withthe people who didn't know how
(30:19):
to mask it or didn't know how tohave some sort of adjustment
for it?
The people she worked with werethe ones who couldn't figure
out the coping mechanism.
Yeah, Everybody has somethingthey're struggling with, and to
have this notion that otherpeople aren't struggling and I'm
weird is just not true.
Speaker 1 (30:38):
It's not, you know, the most interesting.
One of the things that I foundvery interesting in this line of
thought you know, in schoolsystems now it you know can set
up for your kid if they'rehaving trouble, for IEPs, like
they get an individualizededucation plan.
And I remember when I wasgrowing up it was like maybe one
or two kids would get pulledfrom the class and they'd have
(30:58):
to go to a special you knowsituation, and I remember it was
kind of like I went to a reallysmall school so nobody got made
fun of in that way.
But I remember there was almostlike a you knew oh, they're not
smart, they're not smart, likethat's.
That was the oh they're notsmart, not smart, they need help
, like they can't do itthemselves.
And it was like look down onnow my children when the testing
(31:19):
came around and everything, andI was told you know, oh,
they're kind of like right there, they'll be okay, like leave
them in mainstream, advocatedfor like no, like I want them to
all get help now.
Because I reflected back when Iwas struggling, like deeply
struggling, in grammar schooland that struggle followed me
all the way to college for mathand then I ended up like having
(31:40):
to retake and take all thesesimple math courses just because
I never got the help.
So I advocated I wanted my kidsto get extra help.
Now, push them into it Likelet's go, like, let's get them
the proper tools.
That way they know how to dealwith this and they know how
their brain works.
And that's actually how I'vepresented it to them.
You're all learning differently.
Our brains are wireddifferently.
(32:00):
The way that you're processinginformation is going to be
different than your neighbor.
Because if you think about it,like even now as an adult, I
could be on a conference callwith 10 other professionals and
they're nine times out of 10,half of us hear one thing and
half of us hear another thing.
And the part that I think ismost fascinating about kids now
(32:20):
with IEPs and this when I wasgrowing up I said one or two
kids were getting fluxed fromthe class.
Now it's like half the class,half the class is going and
getting extra help.
There isn't a stigma thereanymore.
Speaker 2 (32:31):
That's what happens when we're more aware.
It's not that more people havethis problem.
It's when we're more aware.
It's not that more people havethis problem, it's that we're
more aware.
And also, this notion of thisis not a stigma.
This is just life.
There's no stigma in this atall.
Saying this is not how my brainworks is perfectly fine, like
the people who at some point Imean in my parents' age, people
(32:54):
who were punished for it with aleft hand.
Speaker 1 (32:57):
Yes, why?
Speaker 2 (32:59):
My mom used to tell me stories about that, that the
nuns would come around and beatthe head, and the fact that when
they stopped doing that, allthese people not all 10% the
number increased.
It had been 1%.
That when they let people dowhat is natural for them, it's
up to 10.
So it's not like left-handed isjust taking over the world,
(33:20):
it's not.
It's just when you let peoplelive what is comfortable for
them and use that left hand andhelp them work with it.
I mean, the world is built forreadies.
Yeah, oh yeah, absolutely.
But there are, yeah, Absolutely.
But there are ways to do thingsand there are lots of companies
(33:40):
that have developed tools tohelp things.
If you think about all thethings that at one point were
developed for disabilities, likeif you use closed captioning,
that's, for people who are hardof hearing or deaf, I love
closed captioning and I useclosed captioning all the time.
All of are hard of hearing ordeaf.
I love closed captioning.
I use closed captioning all thetime, all of the time I use it
(34:01):
all the time.
Speaker 1 (34:01):
I love it.
Speaker 2 (34:02):
The texting features that they've got.
Those will be used for peoplewho are hard of hearing as well.
All these different featuresthat we like.
Having the different kitchengadgets, I like the OXO tools
have big chunky handles.
Those were developed for peoplewith arthritis but they're very
popular.
Ergonomic things were handsdown.
Speaker 1 (34:20):
Ergonomic things.
Speaker 2 (34:21):
yep, they were originally designed for people
either with pyrosis or losingthe grip of arthritis.
Who couldn't grip well?
They were disability aids andnow they're super popular.
Speaker 1 (34:31):
Yeah, and it's interesting too, and actually
something that I do like is astep in the right direction is
that a lot of things, media isdeveloped and people with
disabilities are considered inthe development in a lot of it
of like, well, we want, we wantthis, everyone's a view, this,
we want everyone to be able toview and enjoy this like media
that we're putting out there,like, how can we make it
enjoyable for everybody?
(34:52):
Like, so we have the closedcaptions now and you have the
audio version and you havebecause you do want everyone to
be able to see these things.
You don't want anyone to beexcluded.
Beth, I think your books are soimportant for I mean, for
everyone.
Really, this is a bigger.
This is bigger than you know.
I know we're here and I alwayssay I want the women's voice to
(35:12):
be elevated because we needplatforms, we need more
platforms for that.
But this is such a big dealbecause there's so many people
suffering and they feel aloneand they feel isolated and this
is almost like showing them likethere is a community.
You're not alone in this, andespecially in the more rural
areas of New Jersey or, excuseme, in the United States you're
(35:33):
not going to have that manypeople.
You're not going to have a lotof people that are the same as
you Maybe no one is the same asyou and having being able to
have a book that you can look atand read and see yourself is so
incredibly important.
So thank you for doing whatyou're doing Absolutely, and
taking the time to do it.
I mean that's.
Speaker 2 (35:53):
Well, I have plans in the future for more books, more
ideas, more illnesses I want totouch on.
So you know I'm working on bookthree and that woman,
surprisingly enough, lives withPOTS.
Speaker 1 (36:05):
I'd like to read that one.
I'm very excited about thesebooks.
Listeners, I am going to linkBeth's website and I'm going to
link the books for Amazonthey're on Amazon right now into
the description so you cancheck them out as well.
Beth, thank you so much forbeing on with me today and
sharing your story.
Speaker 2 (36:22):
I'm so glad to talk to you this was a joy.
Speaker 1 (36:27):
Well, listeners and viewers, thank you so much for
hanging out with us today and wewill catch you on the next one.
Take care.
Hello everybody.
This is Steel Rose's podcast.
This podcast was created forwomen, by women, to elevate
women's voices.
I am very excited to introduceyou to our guest.
Today.
We have Beth Biss with us.
She lives in a small town inPennsylvania where she juggles
life as a reader, writer andmother.
She pours her energy intowriting women's fiction that
(00:20):
encourages and empowers womenliving with illness.
She is the author of two books,Radiant and Redolent, both
available now on Amazon.
Beth, welcome to the podcast.
Speaker 2 (00:30):
Thank you, it's so nice to be here.
Speaker 1 (00:32):
So, beth, I would love it if you shared a little
bit with the listeners about howwell I would love to hear your
story as to how you became anauthor, but I'm also very
interested in how you selectedthe genre that you're writing in
.
Speaker 2 (00:45):
Thanks, Well, I became a writer because I first
was a reader.
As a child, I read lots ofbooks.
The little town I live in had avery small library and very
little section for children andan even tinier section for teens
.
When I was a teenager, we hadone bookcase, the kind that
rotates.
(01:05):
You know that you see in thedrugstores.
Speaker 1 (01:07):
That was it.
Speaker 2 (01:08):
That was the teen section and even outside of the
teen section, and I rememberbeing excited when the teen
section went up because beforethat we didn't have a teen
section, so that library now hasa whole room dedicated to teens
.
So I'm feeling a little jealous.
So, like many authors, I read alot and when I was in high
(01:29):
school I wrote some things, whatseems to be obligatory angsty
poetry, which is terrible, whichwill never see light of day,
ever, ever.
But I also wrote some shortstories and I gave those to my
English teacher and she said youought to be an author.
And I'm like huh, well, yes, Iread lots of books and somebody
has to write them.
I don't know.
And then I put it out of mymind.
(01:50):
I had a goal.
I went to college, I wanted togo to psychology, and so that's
what I did.
I didn't think about it for awhile and I did a lot of writing
for myself.
I hope it improved.
It still is personal, it wasfor me.
But I did a lot of journalingand later that the sacred
covenant between me and myjournal got violated and someone
(02:12):
read it and I freaked out and Istopped writing completely.
And then after a while, when Iwas in my 40s, early 40s, I
started reading things and beinglike I'm not in these stories,
I'm not in these books and Iwanted to see myself in the
stories.
And then I finally found a bookwhere I thought this person
(02:33):
could almost be me.
So at that point I already hadmy diagnosis I have POTS.
I have a lot of brain fog,dizziness, confusion, things
like that.
And I was reading a story abouta man who had a traumatic brain
injury and the way the authorwas describing the symptoms I
was like this person is a lotlike me.
(02:53):
It was very exciting.
It was very exciting to feellike I finally could relate to
someone and to really go yes,you get it.
I mean, I know it wasn't real,but to feel like there's a story
out there that it felt like mystory was very exciting.
Fortunately for me, at the endof the book this man recovered
from his traumatic brain injury,which in reality may or may not
(03:15):
happen.
It doesn't always happen.
But I was upset and I threw thebook across the room Sorry,
library, I threw the librarybook across the room because I
no longer connected to thischaracter and after about a year
or so stewing over that, tryingto find another book that I
felt like I related to.
I thought I could write a story.
So I started writing storiesthen.
They weren't about people withan illness, though, they were
(03:37):
just stories I thought would beinteresting.
Tried to write a first book.
It did not go well.
I couldn't get to the end.
I didn't know what I was doing.
I got confused.
I gave it up.
A couple years later I triedagain and it was.
There were different methods forwriting a book and this
particular method didn't workfor me.
I thought I'd try it.
You gotta try it to know ifit's gonna work.
This woman was suggestingwriting in longhand, filling up
(04:00):
a paper spiral notebook.
I mean, if four of them filledup, that's enough material for a
novel.
Well, I enjoyed the process ofwriting all that out.
My handwriting was terrible.
Taking all those words I'dscribbled and getting them typed
into the computer I found I didnot like.
So that method didn't work forme.
But I tried to learn lots aboutwriting and learned about story
(04:25):
structure, character developmentand all kinds of things.
Unless you're a writer, youdon't really need to know, but I
learned about these things whenI started again, and this time
I had this question in my mindwhile I was in the shower.
I closed my eyes and I thoughtwhat would it be like to go
through a day without being ableto see things?
And so this little nugget of aquestion was something that I
(04:46):
thought there's a story in thissomehow.
And so that's where I got myfirst ideas for my first book,
redland, which I releasedSeptember 18th 1924.
And so in this story, the maincharacter is Sonia.
She is a college student withthis goal of being a fashion
designer.
This is her goal.
She wants to go into fashion,and she starts having trouble
(05:10):
seeing things and goes to anoptometrist.
It's a diagnosis that isheartbreaking for her, because
it means she will be losing hersight, maybe not completely.
Who knows how long it will taketo other things.
You just don't know.
You don't know Something willhappen, but the doctor couldn't
tell her how quickly.
The doctor couldn't tell herhow much she would lose.
The doctor couldn't tell her,would she eat?
(05:30):
Her color vision Forfashionists being able to see
color is pretty important.
So you know she's reeling fromthis.
What am I going to do?
How am I going to live withthis?
And so the rest of the story.
It's her figuring out how do Ilive with this, because it is
changing everything in my life.
Can I be a fashion designerwhen I'm losing my sight and I
(05:51):
don't know how quickly it'sgoing to happen?
I'm still in school.
She wasn't a designer yet.
She was still training for that.
And what does she do abouttelling people?
What did she do about makingaccommodations in her life?
What does she do aboutfulfilling her goals?
Is she going to have the samegoal or do her goals have to
change?
She also learned some thingsabout her mother and some things
(06:12):
about her own family that playinto how she decides to make
decisions about this.
I'll give those away, and Ithought I want to have something
else in the story about herSort of.
I didn't want to keep writingthat story.
I wanted something a littledifferent, and so this is where
I got the idea that I will writestories that are around
(06:34):
friendships and look at thethree different friends.
So I'm working on a trilogy, mysecond book.
It's on pre-order now, but itwill be released October 1st.
It's Radiant, and Radiant'smain character is Dani, and Dani
is an artist.
Dani also has ADHD.
Now, when the story starts,dani knows she has ADHD.
She's very aware that that'sher diagnosis.
(06:55):
She's aware.
But it really does challengethe way she lives and how she
chooses to do things and how shemanages to get things done.
So I thought I want to writeabout friends.
I want to write about anillness of some kind.
I clearly want the illness tobe different.
You want to read about the sameillness over and over and over?
It would be super fun.
So I have a different illness.
Speaker 1 (07:15):
I'm working on my third book already, which will
be about Lynn and her illness,so that we read it next year
know I, I wanna, I wanna justsay here I think it's really
important what you're doing here, because most stories will have
like a happy ending, like whenshe survived and she got the
love of her life and it's allgood, or she yeah, pregnancy was
(07:39):
uncomplicated, she's totallyfine.
And we know that this isunrealistic, like we know that
like the reality of it is.
Like there are people out herethat this is not their story and
the day to day they don't knowwhat's going to happen.
And I think shining a light onpeople that have to live with a
chronic illness or an illnessthat's, you know, told to them
(08:02):
like this is going to kill youat some point, like this is
going to end your life at somepoint.
It might not be directlyrelated, but it will be like a
symptom of something that gotaffected.
We have a family member livingwith a chronic illness and we're
seeing the end.
You know, we're starting to seelike the signs and that kind of
thing.
So I think this is huge,especially for women, who quite
(08:24):
often are dismissed for medicaland dismissed quite a bit, you
know, in, you know in medicalsettings, and I think that
taking that journey with them isgoing to be incredibly
impactful in your books, andeven if you don't have a chronic
illness, really I mean I feellike this is very impactful.
I also really love and I wantto say this too that you're
(08:47):
focusing for the angle ondeveloping the female
relationship.
Speaker 2 (08:51):
Yes, my focus is the friendship.
Yeah, the friendship is theimportant part.
So they may or may not have alove interest, they may or may
not have that relationship yet.
They may or may not.
Their family relationshipschange.
Sometimes they get better,sometimes they don't.
The point is, the friendshipsare there for them.
The friendships struggle.
Friendships go up and down.
(09:12):
So in the course of my story thewomen learn something.
The main thing is they learnsomething about themselves that
helps them.
There's some revelation theyhave.
Oh, I have to do thisdifferently.
I absolutely have to, becausethis illness is forcing that
upon me.
And what choices do I make?
And what, what?
What options do I have?
And then what choices do I makebased on that?
(09:34):
And sometimes the options don'tlook good and they choose the
lesser to evil.
Sometimes they're like I don'twant to do this.
There's something I want to doand I can't.
So what do I do Now that I'vebeen going after this thing over
here?
It's absolutely blocked from me.
How do I pick the pieces fromthere?
I personally have dysautonomia.
That's the umbrella term for anumber of illnesses I've been
(09:57):
diagnosed with.
Dysautonomia means adysfunction of the autonomic
nervous system.
So that basically means all thethings your body does, that you
don't have to think aboutBlinking digestion, heart rate,
blood pressure, breathing, tearproduction.
Speaker 1 (10:12):
Yeah, just things that happen naturally yeah.
Speaker 2 (10:16):
All those things can go wrong.
Now, for some people they allgo wrong all the time.
I mean, there are varyingdegrees for this.
So I have POTS, which isPostural Orthostatic Cardiac
Syndrome, which means I have ahard time when I stand up or I'm
exercising.
I have a hard time with myheart rate.
Pots will make your heart ratego up.
(10:36):
And you might think well, heartrate, well you know, not a big
deal.
However, the heart rate, whenyour heart rate goes up, your
body system is all reacting tothat.
The rest of your body thinks,oh, I'm either fleeing from
something or I'm exercising, andthe rest of your body systems
react accordingly, which is notfun.
I also have orthostatichypertension, which means when I
stand up or exercise, bloodpressure drops.
(10:59):
So yeah, those two are alsorelated.
If your blood pressure drops,your heart rate increases.
Speaker 1 (11:03):
To try, to balance it .
Oh my gosh yeah.
Speaker 2 (11:07):
And also I also have a problem with my blood vessels
not working correctly so thatthe blood will sink down to my
feet.
If it's at your feet, it's notin your brain.
If it's not in your brain,you're not thinking very well.
Speaker 1 (11:18):
And that's where brain fog comes in.
Speaker 2 (11:19):
That's what we're talking about yeah, yeah, yeah,
and then also have temperatureintolerance.
Your internal thermometer ispart of this autonomic nervous
system and for a long time, foryears, it was cold all the time,
cold, cold, cold, cold.
Didn't quite understand whyit's part of this constellation
of illnesses.
Now, these different problemsbrain fog, poor circulation,
(11:41):
having temperature intolerancethey show up in a lot of
different illnesses.
A lot of different chronicillnesses have those.
So it took me 35 years to get mydiagnosis and I've been asked
numerous times do you havechronic fatigue syndrome?
Do you have fibromyalgia?
Do you have to?
I'd say no, are you diagnosingme with that strange disease?
(12:02):
And they'll say no, no, no, Ican't diagnose you with that,
but you're going to be diagnosedwith.
I was never diagnosed with allthe various things people told
me I was going to be diagnosedwith.
So chronic illness is trickyfor women.
Fortunately, until the late 90smost women were not included.
Sorry, I'm saying that wrong.
(12:22):
In most studies of illnesseswomen were not included.
They did the studies that metand so they didn't really
understand illness in women andmost women more women than men
get a chronic illness.
It's just more prevalent amongwomen, and why they didn't see
women I don't understand,although the common explanation
was well because of themenstrual cycle, we didn't get
(12:45):
good data, so we excluded womento get better data.
Speaker 1 (12:49):
But it's like the data is almost like irrelevant.
You know I've talked about thisquite a bit because even you
know when products are beingdeveloped, medicines are being
developed, they're tested onmale subjects across the board,
like male animals, male mice youknow, like it's male subjects
across the board, because it'seasier to work with versus
having to deal with women andall our things, which, I must
(13:10):
say, the more I think about that, the more I say to myself I'm
like, wouldn't you want to, like, divide into it and really
dissect what is happening inwomen's bodies?
I mean, imagine and I'm goingto put my marketing hat on
Imagine, imagine the followingson women that a product would
(13:33):
get if we knew this was testedon women and we know that this
was developed purely for us.
And you know, even if it'sthings that are like information
that's being released to us,data that's being released to us
the amount of following thatwomen would do just to find an
answer.
I mean, beth, I have to ask you, how long did you have to wait
(13:56):
until you had a diagnosis?
Speaker 2 (13:58):
So I started having symptoms in 1985.
I got my diagnosis in 2018, 35years.
I spent 35 years going tovarious doctors saying I've got
these strange issues, notknowing to mention all of the
issues to any one doctor, but Imentioned different things, and
so I saw about four or fivedifferent cardiologists
(14:19):
concerned about things, and Isaw allergists, the GPs.
I ended up in the emergencyroom with stuff.
I just didn't know what wasgoing on, and so that's why I
got all these different notdiagnosis these different
suggestions.
Speaker 1 (14:32):
Suggestions of what we think it might be yeah.
Speaker 2 (14:35):
And I'd go to ask I'm not talking about that, and
they'd say, no, you actuallydon't have that.
And the way I got my diagnosis,funnily enough, was from
Facebook.
I was complaining, I wascomplaining, I am not surprised,
keep going.
Speaker 1 (14:48):
Yeah, I was complaining.
Speaker 2 (14:49):
I am anemic again.
I'm going back for infusionsagain, really concerned.
I'm tired, I'm dizzy, I'm sickof this.
I wish I knew what to do.
And I had a friend from mygraduate school write to me and
say you know what?
Some of these things youdescribed sound like something I
have.
Please call me.
And so I called her with Jadafor a while and she asked about
(15:11):
my symptoms and what was goingon, and she described what was
going on for her.
I said that sounds very similar.
She said, okay, I have POTS.
You need to talk to your doctorabout that.
So I went to my GP about thatand she had never heard of POTS.
She'd never heard of it.
Now, that was 2017.
I live in a small town, butyeah, she'd never heard of that.
(15:31):
I had no idea.
I had to look it up.
It was like, oh well, good,yeah, all these different things
, yeah, that could be.
Yeah.
I by then also, unfortunately,freaked myself out by Googling
it.
Speaker 1 (15:44):
Of course.
Of course I did Of course, assoon as you mentioned it, I
Googled it to see what it was.
Speaker 2 (15:50):
Yeah, Now at the time just what the algorithm was
doing.
At the time it freaked me outBecause the thing that came to
the top was the discussion inthe article about the form of
POTS.
That's fatal and I freaked out,I shut the laptop, I went away
and I thought about that about aweek later.
I'm like wait, wait, wait, wait, wait.
(16:10):
I've had these problems since1985.
Probably don't have the fatalone, because the fatal one.
Speaker 1 (16:16):
You die within five years of diagnosis.
I can't believe you've livedfor 35 years without an answer.
I'm like I'm still blown awayby the length of time.
I mean I shouldn't be because Ialready know the research,
because of what I do for aliving, like I already know the
barriers and I know how theability to diagnose was for
women.
But to hear you say it is likemind boggling.
Speaker 2 (16:36):
It's much better now?
Not much.
And I have to say, as much as Idon't like the fact that COVID
rocked the world I mean it shookus to our core Definitely it
really improved POTS research.
A lot of the people who arediagnosed with long COVID
actually have POTS.
That's what they have.
They have POTS, yeah.
(16:56):
So it's sort of beenquasi-reneved, as you know, long
COVID Because the people whohave long COVID sometimes
recover from it.
A slighter greater chance ofrecovering from that than if
you're diagnosed with POTSparticularly.
No one seems to know why thatis, but some people do recover
(17:17):
from POTS-like symptoms thatwere caused by COVID and that is
COVID, the virus, not thevaccine.
Speaker 1 (17:24):
Yeah, yeah, no, I knew what you meant.
Thank you for clarifying,though I have a question for you
, beth, since you went throughwhen did you start writing?
When did I start learning nowriting?
When did you?
Speaker 2 (17:31):
start writing?
When did I start learning?
Speaker 1 (17:33):
No writing.
When did you start writing yourbooks?
Speaker 2 (17:36):
I started writing in 2022.
Speaker 1 (17:38):
So my question to you here is you know I love that
you took something and I'm goingto say this every episode that
I have a guest, because all ofthe guests that come here I am
incredibly impressed with youtook something that happened to
you.
You recognized that there was agap and then you did something
about it.
Now I know my personal feelingson how writing impacts our
(18:01):
lives and our mental health andeverything about us, but I'm
curious to hear your thoughts onif the writing was almost
therapeutic in a way.
Speaker 2 (18:10):
Definitely.
The writing has definitely beentherapeutic for me.
I think it also offers anopportunity for readers for it
to be therapeutic as well.
I know that readers read for awide variety of reasons, and all
the reasons are valid.
Any reason you have for readingis a great reason to read.
But I sort of think about it inthree different levels.
Some people read to escape orget away and there are plenty of
(18:34):
things to escape from, butreading is a great way to get
away from whatever is going onin the world that you want to
get away from.
You can also use your readingto connect with other women.
I think book clubs arefantastic.
I think book clubs offeropportunity.
Different people suggest a book, and so that opens up your
reading experience.
(18:55):
It opens up your eyes to othergenres and authors, that sort of
thing.
The group might have a focus onauthors from a certain country,
or it might have a focus on acertain genre, I mean, so you
can really experience a widevariety of books you ordinarily
wouldn't do for yourself.
That's great.
That's an opportunity there.
(19:15):
Then there's also a level evendeeper than that, and I've been
learning about bibliotherapy.
I've been studying about it.
Now, I am not a psychiatrist,I'm not a psychologist, but it
interests me a lot that peoplecan use the journey that happens
in a book and it is even yourown life.
You can compare it, you couldtranslate, you could say what
(19:39):
did this character learn thatmaybe I could learn?
Or how did this character dealwith things that I think really
messed them up?
You can look at it positivelyor negatively, but taking that
character journey, taking whatthey've learned, taking how they
do things and applying it toyour own life, looking at your
own life and reflecting, doesthis person have a similar
(20:02):
childhood to what I have?
Have they learned from it?
Are they growing from it?
Do I need to learn somethingfrom that?
Or can I look at them and go,okay, I felt bad about my family
, but now I can see what theyhave is worse.
I mean, that's how I look atthem.
But sometimes you need to lookat yourself and go, okay, I'm
(20:24):
not that bad.
So I didn't include anyquestions in my first book, but
at the back of my second book,at the back of Radiant, I have
journaling questions.
Now you could use these in abook group.
You certainly could use it thatway, or you could take each
question and spend some time andreally dig into it and journal
about it.
But if you just want to readfor entertainment, please read
for entertainment few books.
Speaker 1 (20:46):
I was sharing with beth's listeners earlier that I
and I think you've all heard mesay I like to buy everyone's
books that come on the show so Ican read it and I want to hear
about it Once I get to talk tothe authors and I can hear your
backstory.
It's almost like I read thebook and then I can see you.
It's a very interesting thingfor me.
(21:06):
But some of the books that I'veread had such a deep impact on
me from, I mean, just anotherlevel, and I actually did do
pretty much exactly what youjust described where I.
One of the books was pertainingto this woman's menopause
journey and I'm in my early days, only 40, well, I'm turning 42,
(21:27):
I think, or 43.
I'm getting the further I gointo my 40s, the more I'm like I
don't really know what it is,but you know I'm, you know,
getting in there a little bit.
So I'm experiencing all theperimenopause bliss, if you will
, and I started journaling aboutit because I read this woman's
book and I saw her story and,while I'm not going through it
(21:49):
quite as violently as like shedid, it was also like what you
said, almost like an eye openingexperience for me to read it
and be like, wow, like that'sreally awful, and then it's also
making me more mindful, and theolder I get, the further I go
into this journey to be like,well, I'm noticing I'm starting
to lean more towards like stuffthat I don't want to experience,
(22:10):
this Like let me make sure Italk to a doctor, and it's like
it's helping me in that sense.
And then there was another bookthat I had read from one of the
women who came on the show.
It was historical fiction, butit was around the women's
movement, and reading that bookreally blew my mind as well and
I journaled quite a bit about itbecause it gave such a
(22:31):
different perspective and I wasable to read, like what it was
really like for young women inthe 60s, 70s and 80s and like
it's it explained to be honestwith you explained so much to me
that it made me thinkdifferently about my mom and
things that she said to me,because I was like, oh my god,
like this is what you werebrought up, thinking this is
(22:52):
what, how you were raised, andI'm over here like trying to
figure out, like why don't youunderstand what I'm saying?
Or why don't you understand myfeelings it's because it was a
whole different time, acompletely different era.
So that's like that is huge,and I think it's wonderful that
you put journal prompts in theback of your book, especially
for folks that are going throughchronic illnesses and having to
(23:13):
deal with this.
And it's the whole, their wholelifetime is going to be
affected by this.
I know several young peoplethat my children are friends
with that have already beendiagnosed with lifelong
illnesses and you know theparents are doing what they can
and they're making sure that thechildren are talking to people
and becoming adjusted.
And're making sure that thechildren are talking to people
and becoming adjusted and likemaking sure that they're helping
(23:36):
them through the journey,because this is, this is going
to be a big journey.
Speaker 2 (23:39):
Yeah, I know that.
So I will do different illnessfor each book.
For this one that's coming outRadiant, it's about ADHD, and so
I had to do, I had to doresearch, I had to do some
interviews.
Think about this, Of course.
What's your types of thecomputer?
You get stuff.
Speaker 1 (23:56):
Oh, I've been about it.
Speaker 2 (23:58):
A 4U page.
So my 4U feed was all kinds ofthings, all kinds of dirty,
spicy things, which made me stopand go.
Huh, oh, this kind of soundslike me.
Speaker 1 (24:10):
I know Huh.
Speaker 2 (24:12):
Oh, that kind of sounds like me.
I know, huh.
But also I recently wrote inthe news that I set up that my
aunt taught for the LincolnIntermediate Unit out in
Pennsylvania.
I don't know if this is anationwide thing, the Lincoln
Intermediate, I think it's justa Pennsylvania thing.
But it's a special designatedprogram for some specific
(24:33):
counties that give specialeducational assistance to all
those counties.
Some aunt didn't work for oneschool district, she worked for
many school districts, so theyall came together to put
children in the classroom and sothe population kind of changed
over the years.
She did some learning support,she did some learning disabled
(24:54):
support, she went intoneurological support.
She did some learning disabledsupport.
She went into neurologicalsupport, she did emotional
support.
So her classroom varied alittle bit over time.
But these were all kids with avariety of neuro-spiciness,
we'll say, and how much it wasvaried the program changed.
I mean, she did this for 29years so it varied from year to
(25:16):
year what population she wasserving in that classroom.
But I know that some of theseare not so cut and dried and
some of them so it's on aspectrum.
Do you have a little bit, do youhave a lot?
Yeah, my son is nervous by hisself.
I took him in multiple no twotimes.
I took him two times to betested for autism.
(25:36):
When I first took him in he wasthree.
At that point they were veryconcerned about what was his
language like.
How was his language learning?
Can he speak?
I'm like, well, yes, I mean,that's not what I was concerned
about.
He had been looking at three.
He'd already learned a hundredsight words.
I mean he was a bright littleboy, so the language component
(25:57):
wasn't the problem that I'veseen and they were teachers
specifically geared towarddealing with children who had
language difficulties.
And so I'm like, oh no, he'snot autistic.
No, definitely not.
Then later in third grade Ihave teachers coming and going.
We've got some problems.
He's doing some self-harming,he gets upset with something and
(26:18):
this isn't normal.
So I took him back and thispsychologist said if only you
brought him in six monthsearlier, because they just
changed the DSM.
They put out a new edition andthey changed the designation.
Like autism spectrum grew alittle bit, the different
classifications he were lookingfor changed.
(26:38):
They took away, was sort ofremoved as a diagnosis.
And the guy said if you broughtme a little bit earlier you'd
get the diagnosis of Asperger's,but not now.
I'm like so what is he?
He said let's just call himSpicy.
He's Spicy, one thing.
Speaker 1 (26:56):
You just said.
Let's just call him spicy.
Yeah, he's spicy.
One thing you just said.
One thing you just said I dowant to make clear for the
listeners and viewers that arewith us the guidelines that
doctors follow are updatedannually.
In some instances every fewyears, new guidelines are
released for diagnosis acrossall disease states.
You will hear like and theseare these organizations do this,
(27:17):
where and they have all the toptop doctors with them they come
out with new diagnosis andguidelines and that's actually
how things will shift, likeyou'll see.
Like, for example, I thinkthere's a stronger push now for
doctors to actually speak withpatients and sit and take time
with them, and there's a lot oforganizations that are coming
out with inpatient advocacygroups that will come out with.
(27:38):
You know, patient support toolsthat you can bring with you to
an appointment, gynecologyspecifically.
I know they have these things.
If you look up online like Ineed a patient support tool for
my appointment, I always forgetto ask questions they have all
these things available.
So you know you can use theinternet for this and find
something that will help guideyou.
Something, beth, I wanted to sayto you.
(27:58):
You probably saw this in yourresearch.
I was actually a littlesurprised to read this that
women majority of women will getdiagnosed with ADHD in their
adult life, during menopause.
Because and I was reading itrecently that it's like, because
of the shift in hormones andmenopause and because of
(28:19):
everything that your body goesthrough, you likely had a VHD
and figured coping mechanisms tobe able to deal with it your
whole life, but when you gothrough menopause you can no
longer use those copingmechanisms because your body,
your own brain, are starting toreally break down and change and
that veil starts to deteriorateand you can't use it anymore as
(28:40):
a support.
And I read that and I was likeI've never been diagnosed, never
really had like a problem withschoolwork, and you really won't
hear me complain about that,but I am heavily reliant on
making checklists for myself.
I have to write it down, andeven when I'm on phone calls, I
need to have checklists formyself.
I have to write it down andeven when I'm on phone calls, I
need to have notes generated forme.
I need to have everything inwriting in order for me to
(29:02):
really understand it.
And now I see it more and morethat I'm like really leaning on
these things.
I'm like I need them.
Speaker 2 (29:11):
The thing my research has really taught me is there's
no such thing as a normal brain.
The fact that we talk aboutnormal people is really a
disservice to people.
It doesn't matter what we'retalking about, whether it's
about your height or your weight, or your vision or your hearing
or the way your brain functions.
It's all on that bell curve.
(29:32):
Now, I know the bell curve, forsome people gives them hives
because they think about schoolbeing great on the bell curve.
Unfortunately, I know the bellcurve, for some people gives
them hives because they thinkabout school being great on the
bell curve, but unfortunately,that's where it is.
That's where life is.
Life happens on that bell curvethat the majority of people
happen at bigger parks.
That's where there's morepeople falling.
That's average.
That's not normal.
That's average.
Speaker 1 (29:53):
And you have higher and lower.
Speaker 2 (29:58):
You go out on the corners for the audience many
people.
So, yeah, we are somewhere onthat bell curve, if you think
about it that way, trying toteach Ives.
But my aunt, the one who taughtall these years at the LIU was
saying that everybody has adisability of some kind.
Everyone does of some kind.
Everybody has a disability ofsome kind.
Everyone does of some kind.
Does she happen to work withthe people who didn't know how
(30:19):
to mask it or didn't know how tohave some sort of adjustment
for it?
The people she worked with werethe ones who couldn't figure
out the coping mechanism.
Yeah, Everybody has somethingthey're struggling with, and to
have this notion that otherpeople aren't struggling and I'm
weird is just not true.
Speaker 1 (30:38):
It's not, you know, the most interesting.
One of the things that I foundvery interesting in this line of
thought you know, in schoolsystems now it you know can set
up for your kid if they'rehaving trouble, for IEPs, like
they get an individualizededucation plan.
And I remember when I wasgrowing up it was like maybe one
or two kids would get pulledfrom the class and they'd have
(30:58):
to go to a special you knowsituation, and I remember it was
kind of like I went to a reallysmall school so nobody got made
fun of in that way.
But I remember there was almostlike a you knew oh, they're not
smart, they're not smart, likethat's.
That was the oh they're notsmart, not smart, they need help
, like they can't do itthemselves.
And it was like look down onnow my children when the testing
(31:19):
came around and everything, andI was told you know, oh,
they're kind of like right there, they'll be okay, like leave
them in mainstream, advocatedfor like no, like I want them to
all get help now.
Because I reflected back when Iwas struggling, like deeply
struggling, in grammar schooland that struggle followed me
all the way to college for mathand then I ended up like having
(31:40):
to retake and take all thesesimple math courses just because
I never got the help.
So I advocated I wanted my kidsto get extra help.
Now, push them into it Likelet's go, like, let's get them
the proper tools.
That way they know how to dealwith this and they know how
their brain works.
And that's actually how I'vepresented it to them.
You're all learning differently.
Our brains are wireddifferently.
(32:00):
The way that you're processinginformation is going to be
different than your neighbor.
Because if you think about it,like even now as an adult, I
could be on a conference callwith 10 other professionals and
they're nine times out of 10,half of us hear one thing and
half of us hear another thing.
And the part that I think ismost fascinating about kids now
(32:20):
with IEPs and this when I wasgrowing up I said one or two
kids were getting fluxed fromthe class.
Now it's like half the class,half the class is going and
getting extra help.
There isn't a stigma thereanymore.
Speaker 2 (32:31):
That's what happens when we're more aware.
It's not that more people havethis problem.
It's when we're more aware.
It's not that more people havethis problem, it's that we're
more aware.
And also, this notion of thisis not a stigma.
This is just life.
There's no stigma in this atall.
Saying this is not how my brainworks is perfectly fine, like
the people who at some point Imean in my parents' age, people
(32:54):
who were punished for it with aleft hand.
Speaker 1 (32:57):
Yes, why?
Speaker 2 (32:59):
My mom used to tell me stories about that, that the
nuns would come around and beatthe head, and the fact that when
they stopped doing that, allthese people not all 10% the
number increased.
It had been 1%.
That when they let people dowhat is natural for them, it's
up to 10.
So it's not like left-handed isjust taking over the world,
(33:20):
it's not.
It's just when you let peoplelive what is comfortable for
them and use that left hand andhelp them work with it.
I mean, the world is built forreadies.
Yeah, oh yeah, absolutely.
But there are, yeah, Absolutely.
But there are ways to do thingsand there are lots of companies
(33:40):
that have developed tools tohelp things.
If you think about all thethings that at one point were
developed for disabilities, likeif you use closed captioning,
that's, for people who are hardof hearing or deaf, I love
closed captioning and I useclosed captioning all the time.
All of are hard of hearing ordeaf.
I love closed captioning.
I use closed captioning all thetime, all of the time I use it
(34:01):
all the time.
Speaker 1 (34:01):
I love it.
Speaker 2 (34:02):
The texting features that they've got.
Those will be used for peoplewho are hard of hearing as well.
All these different featuresthat we like.
Having the different kitchengadgets, I like the OXO tools
have big chunky handles.
Those were developed for peoplewith arthritis but they're very
popular.
Ergonomic things were handsdown.
Speaker 1 (34:20):
Ergonomic things.
Speaker 2 (34:21):
yep, they were originally designed for people
either with pyrosis or losingthe grip of arthritis.
Who couldn't grip well?
They were disability aids andnow they're super popular.
Speaker 1 (34:31):
Yeah, and it's interesting too, and actually
something that I do like is astep in the right direction is
that a lot of things, media isdeveloped and people with
disabilities are considered inthe development in a lot of it
of like, well, we want, we wantthis, everyone's a view, this,
we want everyone to be able toview and enjoy this like media
that we're putting out there,like, how can we make it
enjoyable for everybody?
(34:52):
Like, so we have the closedcaptions now and you have the
audio version and you havebecause you do want everyone to
be able to see these things.
You don't want anyone to beexcluded.
Beth, I think your books are soimportant for I mean, for
everyone.
Really, this is a bigger.
This is bigger than you know.
I know we're here and I alwayssay I want the women's voice to
(35:12):
be elevated because we needplatforms, we need more
platforms for that.
But this is such a big dealbecause there's so many people
suffering and they feel aloneand they feel isolated and this
is almost like showing them likethere is a community.
You're not alone in this, andespecially in the more rural
areas of New Jersey or, excuseme, in the United States you're
(35:33):
not going to have that manypeople.
You're not going to have a lotof people that are the same as
you Maybe no one is the same asyou and having being able to
have a book that you can look atand read and see yourself is so
incredibly important.
So thank you for doing whatyou're doing Absolutely, and
taking the time to do it.
I mean that's.
Speaker 2 (35:53):
Well, I have plans in the future for more books, more
ideas, more illnesses I want totouch on.
So you know I'm working on bookthree and that woman,
surprisingly enough, lives withPOTS.
Speaker 1 (36:05):
I'd like to read that one.
I'm very excited about thesebooks.
Listeners, I am going to linkBeth's website and I'm going to
link the books for Amazonthey're on Amazon right now into
the description so you cancheck them out as well.
Beth, thank you so much forbeing on with me today and
sharing your story.
Speaker 2 (36:22):
I'm so glad to talk to you this was a joy.
Speaker 1 (36:27):
Well, listeners and viewers, thank you so much for
hanging out with us today and wewill catch you on the next one.
Take care.
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