Hey guys!
So today's video is another Disability Discourse, and today I just want to have a casual chat
with you guys about what it's like growing up with a disability.
Sorry if I sound weird, by the way, I've been sick for like two weeks, yay immune suppressed!
And yeah, my voice is still recovering.
Anyway, so of course I'm going to be talking about my own experience growing up, and that
means I'll be talking about having an invisible disability, or at least relatively invisible,
and of course that's really different to growing up with a visible disability, and I'm also
talking about a chronic pain condition, which is obviously really different from a disability
that doesn't cause pain.
So the reason I say "relatively invisible", by the way, is because any medical person
could look at my hands and wrists and know that that's nor normal, but to the average
layperson I don't look like I'm disabled or in pain.
So the reason that I want to do this is that I personally feel like being disabled has
shaped who I grew up to be, and it has really changed a lot of aspects of my personality.
Obviously I can't say what I'd be like without a disability because I don't know that, but
I certainly feel like I've changed a lot for better and for worse for having a disability.
I think a lot of disabled people will feel the same way.
So I want to talk about some of the biggest changes that I think exist because of my disability,
and I'm hoping this will also be a chance for you guys to reflect on what has changed
for you, for better and for worse, and maybe talk to me about it.
I would love to hear what you think.
I'm really interested in what parts of me are just me growing up - I became disabled
at 12, so obviously I've grown up a lot since then, at least I really hope so! - and what
parts of that were shaped by having a chronic pain condition.
It's almost impossible to separate the two at this point for me, so I'm really interested
what your experiences are as other disabled people, so that I can kind of try and tease
those out from eachother and see what other disabled people think was shaped by their
disability versus their personality.
So yeah, it's something that really interests me and I hope that it interests you too, because
I'm going to ramble about it a lot!
So obviously because of the nature of this video there are going to be positive and negative
things in here.
I haven't really tried to catergorise anything or break things down into good and bad, I'm
just going to talk about them as I see them.
A lot of these things have good and bad components to them as well, so that makes it even harder
to categorise.
So I'm just gonna have a casual chat to you guys and we're gonna talk about everything
the way that I see it and hopefully that makes sense to you.
So one of the biggest changes and the one that I think I'm most grateful for is that
I think I have a lot more empathy now.
Of course some of that comes from growing up, I mean I was 12, like I said, when I got
diagnosed, and teenagers notoriously see things in black and white and don't have very much
space for shades of grey, so of course becoming an adult just means I automatically would
have had more empathy, disabled or not.
However, I really think that my disability has shaped the way that I look at other people
and how I'm able to relate to other people and their struggles.
I think especially being invisibly disabled means that I have a really hard time judging
people by their outward appearance, or judging books by their covers to use the cliché,
and that's just because I've had that happen to me so many times, and I'm sure that any
other invisibly disabled people or chronically ill people watching this, you've also had
that happen to you a million times.
People will judge you and see you as just lazy or lying or malingering, or whatever
it is.
That happens to you so often that it becomes very difficult for you to do that to other
people.
Whenever I look at someone I always try to think what their side of that interaction
might be.
So if someone is rude to me or whatever, I have a really hard time being like "ugh, they're
just a terrible person" I tend to think more along the lines of "well, what if something
was going on with them that day, what if they just got some really bad news" or I just try
to put myself in other people's shoes a lot because I know that a lot of people haven't
given me that courtesy and it's really been hard for me to deal with that.
So I think I have a lot more time for other people now than I used to and a lot more patience
with other people than I used to.
So that's been a really positive thing that has come out of being disabled.
I think also I am able to put myself in the shoes of people whose experience I will never
have.
So I'm gonna use racism as an example.
Obviously I've never experienced racism first hand, like ever, so I don't understand what
that feels like.
However because I've experienced a lot of ableism in my life and I've experienced a
lot of systemic dislike and systemic unpleasantness towards me and other people like me, it's
much easier for me to put myself in other people's shoes and sort of understand where
people are coming from when they're complaining about racism or when they're experiencing
racism.
So while I've never had that experience, just like a million other things I've never experienced,
I find it a lot easier to put myself in that position just because I have something to
relate it to.
And I know it shouldn't take me having something that I can relate it to in my life for me
to be able to understand and think about things that I haven't experienced, but it does make
it a lot easier, you know?
It makes it a lot easier if, when someone's talking about an experience that they've had,
you can be like "oh yeah, that does feel really terrible, I know what that feels like".
Does that make sense?
I hope that makes sense.
Anyway, I feel like it's helped me a lot to relate to other people, I feel like...did
you guys hear my shoulder click just then, by the way?
Hooollyyy cow, ouch.
Anyway, I feel like it's helped me relate to other people in ways that I couldn't before,
and I feel like I've become a much more kind and empathetic person because of being disabled.
I hope all that makes sense.
I feel like I just went off on like three different tangents at the same time.
The next thing I want to talk about is trust and friendship.
Now I'm not quite sure how far this one goes with visibly disabled people and I would love
to hear from you if you are visibly disabled and have some experience with this.
I am not, at least not most of the time.
I sometimes use a wheelchair and sometimes use a stick, but mostly I'm invisibly disabled.
Oh my god, can I stop going off on tangents for like two seconds please?
Um, so okay.
Like I said, I'm not quite sure how far this goes with visibly disabled people, but I would
love to hear from you if you have any experience with this.
Um, for me I find it really really hard to get close to people and trust them.
I have a handful of very close friends who I am so appreciative of and I just love to
the ends of the earth and would trust with anything, but it's very hard for me to get
to that point with people and I think a lot of that has to do with during intermediate
and high school I went through a whole lot of bullying and I was ostracised pretty badly,
in part due to my disability and in part just 'cause I'm a really awkward person now, I
was way more awkward when I was a kid, so just think of me now and then think like times
100.
It was bad.
But a lot of it was to do with my disability, because I often wasn't at school, I spent
a lot of time in hospital or just at home, too sick to come to school and I lost a lot
of friends through that.
A lot of my friends also thought it was embarrassing to be around someone who was kind of limping
or hobbling or just like tired all the time.
And that's really sad to think about now and now when I think about it I just think "well,
those weren't the right people for me and that's fine", but at the time when you're
young you feel like it's something that's wrong with you.
And I felt that way for a long time.
I also got accused of lying about being disabled for a really long time during high school
especially because you know, young people don't get sick like that, you know?
You know?
You know, you're too young to have that, you know?
Um, so that was also really hard for me and I've mentioned this in other videos, but for
a long time I just stopped telling people that I was disabled, I stopped telling people
that I had RA, I just didn't because I felt like people wouldn't believe me.
It's only fairly recently, in the last like four or five years that I've started telling
people again and being really open about it.
I feel like I've gone the opposite direction where I'm just like "nope, I'm telling everyone,
anyone who doesn't believe me isn't worth my time, I'm just gonna put it out there,
other people need to know".
I have a right to tell my story and talk about my life experience, and if other people don't
believe it or don't want to hear it then that's cool, that's their prerogative too.
Um...but...where was I going with this?
Oh my god, I am terrible today, I'm so sorry.
Uh, so where I was going with this is that during my initial diagnosis and then for several
years after I had a really really bad time with people that I trusted and people that
I told about my diagnosis who would just kind of ...talk mad shit basically, behind my back
and to my face even.
And that lasted a really long time and stopped me from making a lot of friends, and still
to this day I have this paranoia, this anxiety in my head that people who I tell, people
who I get close to will decide one day that I'm faking or dislike me or be embarrassed
to be seen with me.
Um, I know that's kind of ridiculous because I'm an adult and I make friends with other
adults now, and most adults aren't like that, but I think it's this ingrained thing where
it happened so often and it affected me so deeply that I have a really tough time making
close friends now, because I just don't trust people to not be horrible.
Which is an awful thing to say, because I think most people aren't horrible at all.
I think most people are great, but it's hard for me to translate that into getting close
to people just because I feel like everyone will hurt me eventually.
And I think a lot of that has to do with being disabled.
Prior to being disabled I did get bullied pretty badly, but it was mostly about things
where I'm just like, like I said I was just really awkward as a kid, and I think I would
have grown out of a lot of that.
But I can't grow out of my disability, so I feel like I'll always be stuck with this
fear that people will shun me or dislike me for my disability or for things related to
my disability.
Again, I hope all this makes sense.
I'm trying to do this in a more casual conversational kind of way and I feel like it's not working
out because I just a) cannot stay on topic, and then b) I just repeat myself a million
times, but hopefully you guys understand what I'm trying to say here.
So this next thing I'm gonna add in as another thing even though I think it technically should
probably go in the last category, but that is loyalty.
So as I mentioned, I don't have that many close friends, but the friends that I am close
with I am ride or die.
I am so so loyal to them, and I think that this has to do with the last point, like I
said, where these are the people that I trust and these are people who have proven to me
that they're amazing and understanding and so kind and so incredible and I would never
want to lose them and I just wanna help them as much as they've helped me, so I will help
them through anything, I will be there for them through anything, like these people are
so so important to me just because I don't trust very many people, so the ones I do trust,
I want to keep around and I want to make sure they're okay and like...like they've helped
me so much, and they don't even know that!
I try to tell them and they're like "what?
I'm just being a normal friend" and I'm like "no, you don't understand!
You're amazing!", like most people have just left or don't understand or don't remember
that I have a chronic illness or whatever it is.
These are the people who have been there through thick and thin for me even when they didn't
know it, and so I'm determined to pay that back somehow.
I will be loyal as hell, to the day I die I will be loyal to these people.
So the next thing I feel like has really changed for me since becoming disabled is my patience
level.
I used to be so so impatient, and in some areas I still am pretty impatient with things,
but becoming disabled, especially with chronic pain, really just forces you to be patient.
Like, you have no other option.
You're either patient or you're just going to kill yourself essentially.
I have a really good example of this from just recently which is that I have been sick
for like two weeks, as I just said, I'm immune suppressed, so when I get sick I get really
sick and I get sick for a really long time.
And I've essentially just had to be in bed for like a week straight because I can't do
anything else because I'm just so tired.
And there's nothing I can do about that, there's nothing anyone can do about that, it's just
something I have to accept and I just have to lie there and deal with it.
And I feel like that would have been so impossible for me as a non disabled person, like before
I was disabled I was...oh man, I was so impatient about everything, I wanted everything to be
done immediately, right now, it can't wait, nothing can ever wait.
Now I'm like, that can wait.
I can't do that right now.
That is not a priority.
I feel like I'm not only more patient with myself and physical things, but I feel like
I'm much more patient with other people as well, and I just understand much better, going
back to the empathy thing, I feel like I understand much better that other people have things
going on in their lives as well that are affecting them.
Sometimes I can't do things, sometimes other people can't do things.
It's just life.
So this next thing is something that's been fairly universal when I've talked to other
disabled people and that is that my disability has kind of forced me to have a more optimistic
or positive worldview.
Now I used to be a pretty...I don't want to say negative person, but I was certainly cynical
and quite pessimistic.
And I think a lot of abled people think that having a disability would make you more depressed
or more cynical or more sad and pessimistic, and that just isn't true.
Like sure it can make you sad and depressed sometimes, but I feel like for the vast majority
of disabled people that I've spoken to, our disabilities have forced us to be happier.
I think that's just because if you have like a degenerative illness or if you have a chronic
pain condition where you're likely to be in varying amounts of pain every day for the
rest of your life, you have to be positive about that because otherwise you're just done.
If you're going to be negative about it then you can't continue really, because there's
no real bright side.
So I feel like it's really forced me to be grateful for the small things in my life and
to look at the things I can do rather than the things that I can't do, and I couldn't
be more grateful for that.
I think that's one of my best qualities as a human being now and I don't think that would
have happened if I wasn't disabled because I think I would have just kept my regular
old worldview.
Perhaps it would have changed a little bit, I'm not sure, but I really do feel like i'm
a much more positive person now because I'm chronically ill.
And like I said, a lot of people that I've talked to with chronic illnesses and disabilities
feel the same way.
So yeah, let me know what you think about that in the comments below.
I would love to know how universal it is.
I certainly feel like it's like 99% of the disabled people I've talked to feel like they're
more optimistic because of their disability, so it's just this really interesting thing
that you wouldn't necessarily expect but that certainly seems to be a pretty common outcome.
The last thing I want to talk about is overachieving and I think this is something that's really
common with anyone with a disability, whether that is a mental illness or chronic illness
or whatever that might be, I feel like a lot of us think we need to achieve bigger and
better things in order to prove our worth, and I certainly feel that way.
Or...I'm trying to curb it a little bit now, but certainly for a long time I felt like
I needed to go above and beyond in everything to prove to myself and to other people that
I'm worth caring about.
Which sounds terrible.
But I think we're all fed this whole productivity equals worth or equals value thing for our
whole lives, like we're fed this "people who don't work are super lazy and terrible" or
"people who don't go to college are super terrible and lazy", like it's just this really
toxic horrible narrative that we're fed all the time, and so if you become disabled, suddenly
those things look potentially impossible for you.
Working full time might be impossible, going to university might be impossible, and because
you've been fed this line your whole life it's like...oh my god, now I have no value,
now I have no worth.
So you have to really push yourself super hard, usually too hard, to try and achieve
these things that other people have told you are important, that society has told you are
important, that are not nearly as important as your health.
I think this is something, like I said, that I'm trying to break down now and trying to
just live my life in a sustainable way, in a way that I feel good about, but for a really
long time I certainly fell into that trap of thinking like "I should just try harder,
I should just achieve more because otherwise I'm worthless, I really need to prove that
even though I'm disabled, I still have some kind of value to society", and the truth is
you have value because you're a human being.
You have value just by virtue of existing as a human in the world.
You're a valuable asset to the world, you don't have to earn money, you don't have to
go to university, you are valuable by being you.
And that's so hard to think because like I said, for our whole lives we're just fed this
story that there's only one way to be valuable and that's to be productive and that's absolutely
not true.
So I hope that I can break down some of that.
I hope that if you're watching this and you're thinking about your own worldview and you
think like that I hope you can break it down as well, because it's not worth risking your
health to..like to achieve these goals that are a) probably not realistic for you, or
might not be realistic for you, and b) are not even your goals!
They're the goals of someone else, so I encourage everyone to think really hard about what you
want in life and not what you've been told that you should want in life.
Hope that makes sense.
Okay so that is it for this growing up disabled video.
I realise this was even more rambly than my usual Disability Discourse videos.
I hope you guys don't mind that.
Like I said at the start, I wanted this to be more of a casual conversation with you
guys about your guys, and I'm hoping to hear about your experiences in the comments below.
So thank you so much for watching, as always, and I will catch you in the next one.
Peace!
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