Hi guys, I'm Stevie
and I have been really suffering for about eight years
BUT my disability was with me from birth.
I'm gonna make a really long video later
detailing my journey and my chronic illness story
and, like, all of my symptoms since I was four
or like whatever.
For now, I am so f*cking happy
because I have a diagnosis to share with you guys.
*clears throat*
But first I want to say thank you to Disability Twitter
for literally saving my life.
Lol, "Disability Twitter."
Is that what you guys call yourselves? I don't know.
And also I want to say to all the disabled people watching this...
I'm new.
Please be nice to me.
I just got diagnosed like a week or two ago and
I'm trying to
learn everything about my body
and what the hell is going on in it.
And then I'm trying to learn how to communicate that to others.
I might f*ck up.
Sorry, be nice to me, please,
I love you, thank you so much.
You may be watching this because a friend
or a family member or a co-worker sent it to you
because they have my condition and they want you to
be able to know or understand or, you know,
they're just really tired of answering questions.
And if that's the case, my abled friend,
I have some things to tell you real quick.
*clears throat*
Invisible disabilities are real.
You cannot always tell by looking at someone
if they are sick, so stop assuming if someone is abled or disabled by looking at them!
Please, please, please, stop! Cuz look at me!
Don't assume what you can do to help them
or what they want from you - ask them.
And the last one?
Do not give unsolicited advice to people with disabilities!
If one more f*cking person tells me to try yoga,
imma twist them into a pretzel!
So, I got
*blows raspberry, clears throat*
I went to a geneticist and I got diagnosed with two things.
This is very YouTube-ery.
So bleh, bleh, blehblehbleh, bleh
I got diagnosed by a geneticist with two things.
Thing Number One is hypermobility ehlers-danlos syndrome
or EDS Type 3 or H.E.D.S or HEDS or
some people call it
hypermobility spectrum disorder, so HSD?
I don't f*cking know. I have HEDS. I have EDS.
"What f*ck is EDS?" you might be asking.
Ehlers-danlos syndrome is a genetic disorder
that affects all of my collagen.
And collagen is kind of like the glue that supports, like,
everything in your body. Skin, ligaments, muscles...
...organs, blood vessels... Everything.
So since my collagen is defective,
my ligaments and tendons are just, like, over-stretchy.
There are several different types of EDS and
everyone with EDS varies so differently in the types of
things that they have to overcome or deal with.
My type is type 3. It's called hypermobility type.
Even though, like, everyone with EDS is hypermobile
but I don't know why it's called that. Whatever.
So I have really soft skin.
Thank you very much.
A lot of you guys in the comments of my last video
pointed out all the bruises I had on my arm.
Like, half the comments were like, "Are you okay?"
And the answer is NO!
Basically, all my joints are too flexible
which sounds cool until you're in excruciating pain
every single day of your goddamn life
and doctors tell you that "you look fine" and
that you're "probably just depressed."
Can you f*cking tell that I'm really mad still?
But hey, at least I can do party tricks. Am I right? Am I right anyone?
All right.
That's the last time I'll ever do that.
And the second thing I was diagnosed with is called
POTS, which stands for
postural orthostatic tachycardia syndrome.
*mumbles* Popera orasadic crararara
This one is a comorbid disorder, meaning
two or more things that happen and often in the same person
because they're either related to or caused by each other or whatever.
Okay, so let's break that one down
because it sounds like a mouthful and it sounds confusing and it sounds scary
but it makes sense, I promise.
So "postural" refers to our posture or movement,
"orthostatic" means caused by being upright
so sitting up or standing
and "tachycardia" means
heartbeat that is a hundred beats per minute.
So meaning that when I stand up
my heartbeat races really fast.
So what the f*ck does that actually mean for my actual ass life?
EDS and POTS are kind of disorders that go hand-in-hand.
Like, almost everyone with EDS has POTS as well.
Okay, I'm gonna explain it like we're in science class.
Here we go. So the autonomic nervous system or ANS
controls everything in your body that is automatic.
Like, after you eat, you don't have to think about
digesting your food, right? Your body just does it.
It controls all kinds of things like heart rate, blood pressure, temperature...
...respiration and sweating and digestion...
... and tons of other stuff, like
regulating your body's response to stress
or fight-or-flight.
Nnnahhh, so many things!
So there are a ton of conditions where your ANS is f*ckd up, yo.
And the most common type of ANS f*ck-up is the one I have.
People that have it are commonly misdiagnosed with
panic attacks, chronic anxiety or chronic fatigue syndrome.
Ding ding ding!
"What the fox say?"
I've had so many misdiagnosises.
I thought I had panic attacks since I was in fifth grade
until I had an actual panic attack
on the Harry Potter ride at Universal Studios
when it shut down, and let me tell you -
I had NOT been having panic attacks since I was in fifth grade.
I thought I was dead. I thought I was dead.
Okay, so remember when I told you that EDS causes
all of the collagen in my body to be over-stretchy?
Well, guess what's in our blood vessels?
So basically my blood vessels are like, f*cked up,
I guess, and that's what regulates things like
temperature control, your blood pressure, and all tons of sh*t
All tons of sh*t? All KINDS of sh*t.
So, for example, when someone without POTS stands up,
blood pools into their abdomen and their legs, right?
Thanks, gravity.
P.S., f*ck gravity. If gravity would just, like, let up 10%,
UGH
That would make my life so much better.
Wait, isn't that what happens when you're on the top of a mountain?
I don't know science. I'm trying really hard.
Wait. Should I move to the top of a mountain?
Anyway, that's unrelated.
I think how it works is normally your blood vessels
should use their collagen to shrink a little bit
to cause your heart rate to bump up a little bit to
make sure you have enough blood pumping to your
heart and to your brain and not just your
blood pooling in your legs, basically.
My body - sometimes my blood vessels are like,
"We supposed to be trying to shrink but,
Nah.
So then less blood pumps back to my heart
and my brain, and that's a problem because
it causes some sh*t to happen.
Worst-case scenario, I faint and get a concussion
or hurt myself. Other things that happen:
fatigue, dizziness, palpitations, headache and
shoulder pain, nausea, shaking, puffy hands and feet,
breath-ness-less
*enunciates* breathlessness
or like digestive problems which sounds ridiculous
but I need to read more about it.
So, in summation, imma POTS-head
Thank you for listening to me talk for 12 minutes
just so I can make that joke. I don't even smoke weed.
Thank you for coming my TED talk.
Really like laughing and I love hearing jokes,
I like making jokes sometimes but they're never funny
but my chronic pain and fatigue have
really limited my ability to do my job
and my job is making videos for you guys.
P.S., I originally started making YouTube videos
because I was too sick to keep any other job.
Now, I have such a dope team that
is so amazing and helps me so much.
I have my manager, Dan, and I have my editor, Moonshine
and yesterday I hired an assistant slash medical caretaker that is gonna help me out day-to-day
and she is directly paid through Patreon donations.
Directly paid through Patreon donations.
Have you heard of patreon.com? Link in the description
If you become a patron, that would be so amazing
it would directly contribute to
my well-being and being able to make more videos.
Crossing my fingers for once a week videos
at some point.
Ugh, that would be amazing.
I hurt my hand. It cracked really bad when I did that.
Why is EDS so rude?
So click the link in description to check it out.
I send postcards to some of you
I send gift boxes in the mail to some of you.
There are lots of other cool perks, so check it out.
Thank you so much. Love you guys.
And I cannot make this video without
thanking some people that helped me so much
along the way of this diagnosis.
And if you could donate to their Patreon,
buy something from their merch store,
or even just follow them and watch their videos...
Oh, that would be so amazing. It means so much to me.
Also, they're all really hot and lovable and talented
so YOU'RE welcome?
The first one is Annie Elainey. The first time I met them,
they immediately knew what I had, but didn't say it,
cause unsolicited advice rules or something.
Through our friendship,
they gently and carefully and slowly
helped rid me of my internalized ableism and
gaslighting and personally realizing my illness
and helping me get a diagnosis and OH MY GOD,
where would I be without you Annie?
So buy their f*cking shirts because that's literally
their source of income and they're cool shirts
Also, they saved my life and my soul.
Jessica Kellgren-Fozard! Jessica's my literal mom
so I actually have to thank her for birthing me.
She also gently guided me to finding my diagnosis
with jokes and smiles and validation.
Her and her wife Claudia are perfect. Buy her merch.
And the third is Rachel, or HotPinkSun on YouTube
and like everything else I think?
Rachel has the exact same EDS type as me
and she also has POTS just like me.
And when I got my first bullsh*t diagnosis
from my asshole rhumatologist (?)
She made me feel so much better because
our stories are really similar
and she's always awake at 2:00 am
even though she's like a three- or four-hour time difference for me and
oh my god, she's great.
She always listens to me and answers my questions at 2:00 am. It's so sweet.
She has lots of videos about this condition
and they're really good and helpful,
so check them out if you want to know more!
Hi.
If you think that you may have what I have,
you have come so far already, then, probably.
I thought I would never figure out what was wrong.
I was gas-lit by doctors and nurses
and exes and friends for almost a decade.
So if any of this sounds familiar to you,
even if you have what I have or not,
I want you to know that I believe you
and one day, everyone else will, too.
EDS is considered a rare disease, but it's not rare.
It's not. People are not gonna like that I said that.
It's really underdiagnosed and it's bullsh*t
and no doctors know what it is. Let's fix that.
I'm gonna make a really long documentary
about my entire experience
and then do some fundraisers and then also try to sue
hotels or whatever for not being accessible.
I don't know. What I'm gonna do in my life?
Am I gonna be a disability activist now? Who knows?
Tell me in the comments. What should I do with my life? Thanks!
Oh, I also want to say - doctors are dickheads.
Trust your instincts and
if you have the energy,
remind them that they work for you.
See you guys next time,
in a sex ed video, now that I can finally breathe.
I love you so much. Bye!
That was Jake Paul, that would be my
pu-pu-pussy nation!
No, I don't know, what the f*ck am I doing?