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  • - Hello, lovely people.

  • Just over a year ago, I made a video called

  • What Not to Say to a Disabled Person,

  • and now I'm following it up with

  • What Not to Say to Someone With a Chronic Illness

  • because, wow, do people say these things remarkably often.

  • I also have a What Not to Say to LGBTQ+ People video

  • because I tick a lot of boxes.

  • You may have been sent this video by someone

  • because you said one of these things.

  • If you're kind enough to have actually

  • then clicked through the link to this video,

  • then hi, hello.

  • You're obviously very well meaning

  • and had no bad intention behind saying the annoying thing,

  • but please do know that it was indeed annoying,

  • and that's what brought you here.

  • For a look at what you should say instead,

  • I suggest watching some of the various videos on my channel

  • and subscribing, which means I get paid more per video

  • because I really want to try Botox for migraines

  • and it's really expensive.

  • They inject your entire scalp, the whole thing.

  • On with the video.

  • So we're going to start with the number one

  • most annoying thing you can say

  • to a chronically ill person.

  • But you don't look sick.

  • I mean, you don't look like.

  • Calm down, Jessica.

  • Okay, okay.

  • Look, you meant that as a compliment.

  • You think that it boosts me to hear it,

  • but in actual fact, it really, really doesn't.

  • Getting the medical help you need when you look sick

  • is a struggle, so you can only imagine how hard it is

  • when we don't look like we need it

  • but we still very, very much do on the inside.

  • Because an illness is often invisible,

  • we're terrified that people don't believe we are unwell

  • and that it will snowball into us getting no help at all,

  • and eventually, we'll just be lying near a pavement,

  • dying while people step around us.

  • Sounds like an exaggeration.

  • Isn't.

  • When you say this, it sounds like speculation

  • instead of support.

  • You can tell me I look great,

  • and sure, I look good today,

  • but just don't bring my health into it.

  • (scoffs) I wish I had the time to nap.

  • (scoffs) I wish I didn't have to work.

  • And I wish I had the time to educate your arrogant ass

  • on why my life-altering illness

  • is more than just fun nap time

  • and that being unable to hold down a full-time job

  • hurts me at the very core of my being

  • because it makes me question my place in this earth.

  • But this isn't a TED Talk,

  • so perhaps try engaging your brain before speaking.

  • Oh, I get that too.

  • No, no, you really don't.

  • Telling someone whose life is controlled

  • by chronic fatigue to the extent

  • that they struggle to feed and dress themselves

  • that you occasionally get tired in the evenings

  • after a full working week and running around

  • after your five kids once you're home from the gym

  • is deeply insensitive.

  • What you're doing is pushing them

  • even further down the rungs of functioning human.

  • When people reply to my "I'm sorry if I forget.

  • "I have cognitive processing issues from brain damage,"

  • with, "Yeah, I'm really forgetful too,"

  • I do wonder where they get that pampered obliviousness from.

  • You need to get out more.

  • And you need to hush more.

  • Oh, it's all made up by Big Pharma.

  • Oh, well, that may be the case.

  • I may indeed be being slowly poisoned

  • by a global conglomerate, but I'm still feeling the symptoms

  • and that's what I need you to be sympathetic towards,

  • not just your conspiracy theories.

  • Just push through it.

  • Oh, just push yourself through that wall.

  • Oh, you can't?

  • Yeah, neither can I.

  • Oh, what's the cure?

  • You tell me because, if I knew,

  • I clearly wouldn't be making a video about chronic illness.

  • Are you getting enough sleep?

  • No, wait.

  • You sleep too much.

  • (snoring)

  • Oh, you could do it yesterday.

  • Why can't you do it today?

  • Because today is markedly different from yesterday

  • in that it is happening right this very moment

  • and it's not a rose-tinted vision

  • currently playing in your mind.

  • You're canceling on me again?

  • Hang on.

  • I'm canceling on myself.

  • I haven't left the house in a week

  • and I'm getting cabin fever.

  • You are merely on your lunch break from work.

  • Trust me, the person in this friendship

  • most looking forward to the chance of meeting up

  • with some human contact, some fresh air,

  • is definitely me.

  • Also, I alreadly have enough internalized guilt about this.

  • Calm yourself the heck down.

  • So please, let's reschedule.

  • This friendship is incredibly important to me,

  • as are all of my ties with the outside world.

  • Please don't leave me here to die alone.

  • Oh, well, you know, actually,

  • my friend was cured by (beeping).

  • Have you tried (beeping)?

  • Well, that's a dangerous-sounding

  • quack cure that I am in no way tempted to trifle with.

  • Except I am, because at this point

  • I'm so desperate I'll try literally anything.

  • You know, if you just got out more and exercised,

  • it would definitely help.

  • I'm currently pointing to a card that holds a video

  • about a thing called the PACE trial.

  • Watch that and then come back to me.

  • You're just stressed.

  • An audiologist once told me that my deafness

  • might be stress-related, and I was like,

  • well, then why can't I hear on holiday?

  • Why aren't I deafer, right, before I go on stage

  • to give a talk to 4,000 people?

  • If this is the case, can I please be prescribed

  • deep tissue massages on the NHS and have a maid

  • who follows me around at all times,

  • feeding me peeled grapes and fanning me

  • with a large fern?

  • He said no, the firm is non-negotiable.

  • Clearly he's not actually a good doctor.

  • You take way too many medications.

  • I agree, I'd like to take none.

  • Please talk to my body about that

  • and see what you can come up with together,

  • because clearly you've done your time at med school

  • and now have reached the level of professor,

  • meaning you know better than every doctor I've ever seen

  • and have simultaneously been shrinking yourself down

  • to micro-proportions so that you can live inside my body

  • for the last 20 years and have experienced

  • exactly what's going on inside me day-to-day.

  • Oh, oh, oh.

  • You don't actually know what you're talking about?

  • Color me surprised.

  • You have that because you ate too many blueberries?

  • Stared at a screen for too long?

  • Stood too close to a seal that one time?

  • Whatever weird idea you've got into your head

  • about why I have my illness, the correct answer is,

  • by the way, descended genetically from my parents,

  • don't tell me, just don't.

  • Also, don't lead with "because you,"

  • since that's clearly putting the onus on me

  • and saying that I did something, even accidentally,

  • that lead to my current problems.

  • You're saying, even in a roundabout way,

  • that I brought it on myself.

  • Are you the arsehole?

  • Yes, you're the arsehole.

  • And for our international audience, are you the asshole?

  • Yes, you're the asshole.

  • I haven't heard of that, is it real?

  • No Karen, I've been lying to you this whole time.

  • I'm not really super bendy, this is all an illusion.

  • Unfortunately, your boneheadedness is not.

  • I hope you get the help you need.

  • Have you considered positive thinking?

  • Have you considered not talking?

  • I think it would be for the best.

  • I mean, it could be worse, at least it's not cancer.

  • Thanks for jinxing me, I appreciate that.

  • I look forward to your presentation

  • on the hierarchy of disability and illness,

  • as decided by a completely healthy

  • and able-bodied person who has only the briefest

  • passing experience of being around people who struggle.

  • It's gonna be insightful.

  • Are you better yet?

  • No, no, no, no.

  • Go away.

  • Look, you probably meant kindly

  • but you're putting a great burden upon me by asking that.

  • Have you washed the dishes yet?

  • Did you phone your mother yet?

  • Why aren't you perfect yet?

  • I too would like to know why I'm not better yet.

  • I too would like to be in that place,

  • but I'm never going to be healthy

  • by the standards of society and I have to be okay with that,

  • because if I'm not, then I'm never going to be happy

  • with myself and the number one most important thing

  • when it comes to learning to live

  • with chronic illness is acceptance.

  • Yes, we're all warriors in our own special way

  • and yes, we can fight against illnesses,

  • but what we cannot do is fight against our own bodies

  • because if we do that,

  • we're just fighting against ourselves.

  • My hospital made me go to therapy when I was diagnosed

  • with a lifelong illness that was never going to get better.

  • She wasn't a great therapist.

  • At the time, she deeply annoyed me by saying

  • that it didn't matter

  • that all of my school friends had dumped me

  • because happiness cannot come from the outside,

  • it can only develop from within.

  • But even though that was a horribly insensitive thing

  • to say to a grieving child, she wasn't wrong.

  • You need to be okay with you first.

  • Having a chronic illness means that it is important

  • not only that we learn to manage our physical symptoms,

  • our emotional wellbeing and our mental health,

  • it also entails learning to take annoying comments

  • in the spirit in which they were meant,

  • with love and support, even if they're also arseholes.

  • Stay strong, my loves.

  • You've got this, and I'll see you in my next video.

  • (upbeat music)

- Hello, lovely people.

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