Name: The Guilt and Shame of Life without a Diagnosis [CC]
Uploaded: 2020-03-27T19:04:17.000Z
Duration: 11 min 27 s
Description: Thousands of YouTube videos with English-Chinese subtitles! Now you can learn to understand native speakers, expand your vocabulary, and improve your pronunciation...

The topic of today's video was chosen by the Kellgren-Fozard club members

Past simple

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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I feel like there is a massive divide in my life in how I

was treated by other people; how I felt about myself;

I have two genetic disabilities, but I was first diagnosed when I was seventeen.

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

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...

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 twice as hard as everyone else! I must work five times harder."

'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,

I still have to go through all those awful tests at the hospital that come back and are like, 'Oh, it's negative.'

'Oh, the results for this are blah, blah, blah, blah, blah.'

'We don't know what's wrong with you,' and I'm like, 'Well that's nice.'

[Sighing] And then of course there's the worry, you know, of the tenth time I cancel on a friend

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.

And I don't want the people in my life to think that I don't want to be around them, because 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.

and shame, they really are two very different things.

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

So, when we drive up to the supermarket and we park in the disabled car parking space

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

And maybe they're sat in their cars, judging me, and then I feel the shame.

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

One of the main divides here is obviously when it comes to disability equipment,

Subtitles ListPlay Video

The Guilt and Shame of Life without a Diagnosis [CC]

stuff

struggle

deserve

ruin