- 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)