Hi guys I'm Shelly, and welcome to The Disability Misconceptions Tag.
I'm just glad I got that on my mouth, because I've been practising it, for the last 5 minutes and it always come out as gibberish.
Hi, how are you guys? Welcome to the tag
This was made up by a wonderful woman named Nicola. Links to her down below,
I was tagged by the wonderful, gorgeous, genius woman, that is Emily from Fashioneysta
Links to her down below, and here and there and everywhere that YouTube will let me well they will let me.
I'm not bitter, it's fine.
This tag is going to be out the Misconceptions of Disability,
Because they, are a plenty and they happen quite a lot.
Question 1. What is your disability and how it does it affect you?
There is a saying that, "One does not just walk into Mordor"
On that note, there is also the saying that.
"One does not just have one, chronic illness"
If you get one, yeah tend to get a few.
And all of my chronic illnesses, develop into different kinds of disability.
The condensed version, I have EDS which stands for Ehlers-Danlos Syndrome.
Which makes me very floppy, and it means that my collagen breaks down a lot quicker than normal collagen.
I dislocate quite a lot, it also affects my skin. Meaning that it's very ,very thin and it tears very easily.
EDS also affects my internal organs, because the collagen is breaking down in my system, it's breaking down in my organs to.
Such as my stomach, my heart, so on and so forth....... so that's fun
My next chronic illness is, Endometriosis. That effects periods and reproduction.
I also have Dilated Cardiomyopathy, which is because of my EDS.
It basically means that my heart doesn't pump blood properly, one of the valves is just a bit........
bit lazy, which makes me knackered all the time.
Can give me chest pains and means I have to be on medication to regulate my blood and regulate my heart rate.
Then it's debatable, as to whether I still have ME
I was originally diagnosed with ME, when I was younger but now it seems to have formed into EDS.
Or, now they know more about EDS it has been re-diagnosed
So it's a whole vague as to whether I still have ME,
But ME stands for Myalgic Encephalomyelitis,
It makes you tired, it gives you symptoms like the flu.
It gives you digestive problems, it gives you cognitive problems.
Which is one of the reasons, why I can't explain it...
It's because, it slows down your brain and and it gives you, something called brain fog.
Where you just, you know what you're trying to say.... but you can't get out of your mouth.
That affects me quite a lot, it means that I'm hopeless at doing any kind of mental activity.
Talking to a camera, makes me confused
So just in forms of YouTube, my brain fog and my cognitive problems.
Mean that I will ramble for a very very long time. And I don't know if any of it is useable. I cannot find the words I'm looking for.
Question 2, What is the most common misconception, that you come up with against your disability?
Blimey, there's a list.......
That I can do stuff and I'll be okay
Any kind of physical, or mental activity. Takes a massive toll on me, and I don't tend to show that toll.
So when I turn up to things, and when I do things and when I sit here and have a conversation with my camera.
It looks like I'm okay.....I look like I'm okay right??? ish
I have make up on....... color in the hair, dressed.... all these things.
I look like I'm okay, and yet I'm not. I have a support on my wrists, holding them together.
I have fingers that look pretty, but they're actually just holding my fingers together.
I am in an extreme amount of pain, and the second this is over I will go back to bed, and be in pain.
So the most common misconception. is that people don't believe my illness because I can appear well, for a very short amount of time.
Under stimulants, again I'm on coffee and I shouldn't technically.....
My body shouldn't probably be on coffee. But if I wasn't on it, I wouldn't do anything
I make the choice to, make myself worse. So that I can have some kind of life, in between.
And the misconception is that, when I don't show up to family events.
When I don't show up to friends birthdays. When I don't interact with people.
It's because I'm choosing not to?
Because I'm being selfish, and because I'm being lazy.
I pay for it dramatically!
You don't see it, because I'm not showing you it.
Because I choose not to. Because it's a very vulnerable position. That I don't like to put myself in.
Question 3, Which misconception annoys you the most?
That I'm gonna get better!
I get this a lot lately.
I'm learning to deal with it, but I am NOT going to get better.
I am NOT going to suddenly get better enough to hold down a job get better
enough to go out into the world and be what is classed as a fully functioning
human this is me it's a chronic illness it's not going away
I have EDS which is the doTERRA t'v deteriorated two territory to
deteriorate if that word is there somewhere my life isn't gonna get better
so when people stand in front I mean go oh you just have to try a bit harder you
know you got all these things to look forward to you're just gonna get better
and then you're gonna get a job I'm gonna get a husband or a wife all right
start dating and you can't just live your life like this Oesterle you can't
stay like this this surely isn't going to be your life you're going to expand
and you're going to get better and move on well I'm not this is about as well as
I'm gonna get that will have a payback and then I will get worse again it is a
cycle and I am NOT going to magically just be well again I could spend a very
long time trying to explain to people that this is not going to happen that I
am NOT going to get better I'm seen as a pessimist and and somebody who's
defeating they're just like well you're not gonna get better if you think like
that I'm just like I don't think like that these are the facts this is the
illness I have you don't magically get better from EDS it's a genetic illness
I can't change my DNA that that just takes me a bit next question do you do
anything to combat these issues I'm doing it now yeah my channel this this
is my way of combating everything this is my way of standing up for myself and
and standing up against the misconceptions of illness
I am currently collecting moments of illness and I'm gonna try and put them
into a vlog to explain what happens to me
when I crash and very nervous to put that out but that will be my way of
combating the misconception that I'm okay it takes calm it takes knowledge to
sit down and combat misconceptions it takes energy takes a lot of energy and
also so that person has to want to listen
that person has to want to take it on board and not have their prejudice fill
their brain so much that they're just gonna wipe everything you say out of the
water and I've had a lot of those conversations where the person I'm
talking to just doesn't want to know they're not interested
they think they're correct and and that is it and and I have been beaten down
from that and so I don't always stand up for myself and I don't always try and
combat the misconceptions because I just don't have the energy there is a point
where you just have to stay no you have to step back for your own sanity and
just go you don't want to understand so I'm just gonna walk away and I have lost
friends and I have lost a lot of opportunities and people in my life
because of that I can't fight every battle I really really can't fight
everything I just don't have the strength to do next question what more
do you think can be done to tackle misconceptions about your disability on
a personal note teach doctors please I have been to I think is 10 specialists
and only one of them has ever recognized my illness I brought it to them and they
then and looked it up and kind of researched it and then oh yeah ok hang
on we may have a problem here the rest of them have just passed me as as
literally crazy I have been threatened with section so many so many so many
times because doctors have misunderstood and my illness and my disability and
thought I was lazy we won't get into that that that's a sore point but for
doctors to be taught about chronic illnesses that that would really really
be helpful I realize there is a Fault in the system a way to fix it would be to
be more visual being more out there put disabled people out there put people
with chronic illnesses out there and have authentic representation on TV of
social media in politics especially if they were disabled and chronicle people
in in politics who could fight for our causes and be more visual that would be
wonderful in all aspects in the corporate world as well so there will be
a slow change in we will be all over media and so people will be used to
seeing and used to hearing about new nurses and
and coming on board with it I understand that with chronic illness it's rather
difficult because you're too ill to work if you're an actor and you're trying to
show chronic illness it's not necessarily something that you can hire
a chronic ill at afford because maybe they are not well enough but with
disability you can hire a disabled actor you can
hire a disabled presenter you can show disability and illness authentically on
TV consult with disabled people consult with chronically ill people and ask them
how to authentically represent them I think it's important that we as disabled
and chronically ill people we have a vote we do have a vote and so if we vote
in people who represent us more hopefully there will be a very very very
very very very slow change this got very depressing didn't it anyway I got
sidetracked that was the disability misconception
tag I've talked for a very long time I hope I haven't bored you to death I need
to tag some people and pass it on oh god here we go this this is the brain fog I
had five people and now I've lost them so what I'm going to do is link them
down below and I walk tweet them and tell them that I'm tagging them I am
tagging you watching it if you would like to do the disability misconception
tag feel free you've been tagged by me I hope you guys are good and I will see
you guys soon after I say after a knot on the end of every video I really do
mean it I will now go get into bed and lie there for like a couple of hours if
not longer in the dark with some kind of painkiller usually for me it's it's a
distraction it's ASMR to try and and control the pain and I may not eat
because I'll be in so much pain or my body will not be able to digest food I
may not even be able to drink I may get a migraine all of these things
I am willing to put my body through so that I can do this because I enjoy doing
this but I don't show you that because it's not something that I feel
comfortable sharing yet but that is the misconception that I'm okay and that
carry on with my day I don't this is my day that was depressing when it see ya
bag that we are if the there are words I just can't get them
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