Hello, lovely people.
The topic of today's video was chosen by the Kellgren-Fozard club members
in a community post that I accidentally posted to everyone first
because technology, OK? It's a little hard!
Clearly I just stepped through a wormhole from the 1940s and I am struggling.
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Today we're going to be talking about
It is a topic that I...
know better than I would wish to.
I feel like there is a massive divide in my life in how I
was treated by other people; how I felt about myself;
how I felt about the things around me
before and after diagnosis.
I have two genetic disabilities, but I was first diagnosed when I was seventeen.
So, for the years before that,
I just struggled.
And people thought I was lazy
and also that I couldn't concentrate on things
because I was going deaf, but they didn't know that.
They just thought that I was becoming a really bad student who refused to listen to anyone.
Also, I was super clumsy because I dropped everything
'cause these hands aren't great
I paralysed these things for a year and a half.
Some of that working stuff is just never coming back.
However, after diagnosis, I now had a thing that I could be like...
'I've got a thing!'
When I dropped something, people were like, 'It's just Jessica's thing.'
Which isn't to say that right now, with all these multiple diagnoses,
that you saw in the video that I just did with Claud
- which isn't to say that with all these, I don't get those feelings of guilt and shame
and just feeling really bad, like maybe I'm taking up resources that other people shouldn't be.
"Oh, God, I can't use my inability to do stuff as an excuse."
"I must work harder."
"I must work twice as hard as everyone else! I must work five times harder."
It's not a great idea.
'Cause then I, you know, tend to just overwork and then I make myself sicker.
And, even though I have a diagnosis and I see various consultants who are very fancy people,
and have all these like letters after their names,
and other doctors respect them greatly,
I still have to go through all those awful tests at the hospital that come back and are like, 'Oh, it's negative.'
'Oh, it's normal.'
'Oh, the results for this are blah, blah, blah, blah, blah.'
'There's nothing out of the ordinary.'
'We don't know what's wrong with you,' and I'm like, 'Well that's nice.'
But something is wrong, so
please keep looking.
[Sighing] And then of course there's the worry, you know, of the tenth time I cancel on a friend
'Am I just making excuses?'
'I mean, I do feel pretty tired, but...
I felt worse last week and I still went and did that thing.'
'Although I largely did that thing because someone's paying me to do that thing.'
'But no one's paying me to see my friend, but I should probably prioritise seeing my friend, right?'
'I mean, it's not like I need money so I can eat or anything.'
And is my friend going to think that I'm just really lazy and that I don't want to see them?
Because I really do want to see my friends.
I really do.
I miss my friends.
I miss friends.
I miss stuff.
And I don't want the people in my life to think that I don't want to be around them, because I do.
Of course I do.
I'd love to go and see my parents in Cornwall.
But they live in Cornwall, and that is an eight hour drive.
That's exhausting.
Come to me, parents.
But I suppose when it comes to guilt
and shame, they really are two very different things.
For me, guilt is a very personal thing.
That's how I feel. So, all those examples I just gave,
they make me feel guilty, because that's me turning on me
But shame, on the other hand, I would think of as
people outside
judging me.
So, when we drive up to the supermarket and we park in the disabled car parking space
because it's right there
next to the door, which cuts down on the amount of walking I have to do,
I guess people watching would be like, 'Oh, that girl seems fine,'
and I'm like, 'Well, by the time I'm finished walking around the supermarket, my legs have turned in like this.'
I don't know why they do this; they just do.
If I walk for too long, my feet suddenly... So then I end up walking like this as I walk back to the car.
But maybe people would just assume that that's just a funny walk I have.
And not related to any kind of disability.
And then Claud and I both lift stuff into the car together,
but maybe they don't notice that the only things that I lift into the car are like the
toilet rolls.
And maybe they're sat in their cars, judging me, and then I feel the shame.
So, yeah, that's what I think shame is.
Shame is the outside world
coming for you.
And it's especially easy to feel both of those things - the guilt and the shame -
when you're doing something like using a disabled parking space, or using equipment that is provided
for you.
One of the main divides here is obviously when it comes to disability equipment,
whether it's a mobility scooter or
knee braces, or
a disabled toilet.
You're using that to prevent yourself getting worse.
Like, you're already in pain.
But then sometimes I can feel really guilty about that, because I'm like, 'Well,
I'm not feeling that huge pain right now;
maybe there's someone who's at the same level of that huge pain right now.'
But that's not a great way to think.
Using things because they're preventative,
rather than being the person who is in the most extreme amount of pain
and is using them because they're already there
isn't an unequal balance.
It's just as valid to have to use something in order to prevent yourself from getting worse;
from injuring yourself
as it is to use it because you're already injured.
Some days I use crutches because I'm so super wobbly that I know if I try and walk just on my own little two feet,
I'm gonna fall over.
If you don't know, I have a condition that paralyses bits of me when they're injured.
It's ridiculous.
That is just as valid as someone who has broken their leg and is using crutches.
But again, I would say that my feeling there is less of guilt
and more of shame.
If we go back to the whole idea of what is guilt and what is shame,
- guilt being from within, shame being from outside -
I would say that when it comes to the guilt side of it,
I think I'm kind of OK with it now.
I definitely feel the guilt less.
I feel like I'm less crushed with the guilt of disability and thinking about, "Oh, my God, all the things I cannot do!"
Because I've realised that there are things that I CAN do.
So, yes, in my house,
my wife is the one who does the washing up
but I have great visual and spatial awareness, so I stack the dishwasher.
She just can't put things in the dishwasher.
I don't know why.
That girl has no spatial awareness.
There are ways that I take care of our little family -
My wife, the dogs, and I -
emotionally.
There are things that I do that no one else would be able to.
There are tasks that I perform that no one else can be there to do.
Even if it's just something like cuddling.
I'm really cuddly.
I'm quite squishy.
(What a way to describe yourself.
"Squishy.")
So I'm really cuddly.
I give cuddles, and no one else could.
Tit for tat, you know? If we're gonna be measuring stuff.
But then that brings me to another point, in that I've kind of learnt to stop measuring stuff.
The things that I do and the tasks that I perform
aren't inherently less worthy
than the things that able-bodied people do.
I make plans.
I can make a really good pin board.
Not on Pinterest, like a genuine, in-real-life pin board.
That isn't any less worthy
than the task that someone else provides by doing a call for me.
Equally, I have learn to stop putting people into hierarchies.
This is actually a lesson that I learnt ten years ago
when I was on a BBC show
called 'Britain's Missing Top Model',
in which they pitted disabled girls against each other in a modelling competition.
I mean, I don't know that you'd get away with that nowadays.
Think someone might have some issues.
It was a little labelist at times.
Yeah.
One of the main things that came out of the show was that people
- especially online afterwards - created hierarchies of
whose disability was worse and who therefore was more worthy,
and who deserves the top place.
Should it be the person with the worst disability or the person who's the best model?
Or the most personable person?
But what does that even mean?
"Worst disability"?
We're all different.
Things affect us all in different ways.
How can you say that, 'Oh, this one person has this conditon
and therefore their life is much worse than this other person
who has a condition that I guess is objectively lesser
from a medical standpoint?
But it affects their life so much more'?
But then, of course, how can we ignore the intersections of
which of these people has more money to begin with?
Because boy, does money play a factor when you have a disability.
And then we're gonna add in like...race
and gender and oh, my God.
You know?
People aren't just one thing. We're so many intersections; we're SO many different things.
It's just impossible to put anyone in a ladder
or some kind of pyramid of need
or hierarchy.
It's just A) not OK.
B) Not even possible.
So, yes, the person next to you in the hospital bed may have a condition that is more "well known"
And is considered to be "much worse" than your own condition
But by whom?
And does that mean that your own pain
and your own symptoms are any less worthy of being treated?
No!
You don't deserve pain, and you don't deserve to not be listened to.
Whether you have a diagnosis
or not,
you're still a valid human being.
Ruining my continuity, Matilda!
Always!
What is the point if we are all feeling guilty?
Let's free ourselves of that.
Let's free ourselves from looking around at, 'Oh, the other disabled people next to us'
and, 'Oh, these people have a diagnosis, but these people don't.'
Let's free ourselves from all of these judgements.
And hey, if you're finding that other people in the disabled community are giving you grief,
please bear in mind that it's most likely because of the ableism that they face every day from the outside world.
You don't need the weight of guilt, and you don't need the weight of shame
in your own soul.
It doesn't benefit anyone and it doesn't make you a better person to carry it around with you.
To those of you still searching for a diagnosis:
you will get there.
Even if it takes years...and years...and years!
There's always a light at the end of the tunnel.
And in the meantime,
I'm here for you.
Diagnosis or not,
you deserve inclusion.
I hope you've enjoyed today's video,
and that you've been able to take something from it.
Let me know your thoughts on guilt, shame, and living without a diagnosis in the comments down below.
Please share this video as well if there's someone in your life that you think is struggling with this issue.
And if you're new here, hi!
Lovely to meet you.
My name's Jessica, I make videos twice a week.
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