Today we're discussing: 'how to tell if a disabled person is faking'

You can't.

[end music]

Ok, ok, ok… we're adults, we can discuss things. And actually, some of us aren't

adults- but in my experience it's the almost-adults who often have a better grasp of respecting

other people. So congratulations Gen Z, I look forward to you running the world.

- if we haven't ruined it by then…

Moving on from my ecological anxiety:

Am I looking my best right now? No.

Am I feeling my best right now? No.

Am I deeply offended by something I saw on Twitter? Always.

Unless you follow me on Instagram

- and if you don't why not? The link is in the description!

You probably won't realise that I spent last week in what became an 80 hour migraine.

It was… horrific. But at least last week's videos were pre-recorded!

God bless you, past me.

The pain started on Tuesday evening, by Wednesday morning I was continuously vomiting, unable

to stay awake, sit up or have any light around me. For 80 hours...

[blow air]

So that was awful.

We debated calling an ambulance, because when I'm really vomiting the only thing that

stops it is an antiemetic injection straight into my veins but that's not always the

most helpful thing because then the ambulance crew have to take me into hospital, which

is the WORST place to be with a migraine. It's so bright and harsh and there is no

access to drinks or medications because it takes four hours for anything you ask for

to arrive. And I really wish that was an exaggeration but no...

So hospital is the absolute last resort. Fortunately I married into a family of medical professionals

though so there are people we can call upon when we are in need.

Being ill that particular week was also sucky because I was meant to be going to a big event

on Wednesday evening to showcase all of the new content that will be coming out this year

on Sky TV because they just made me a Sky Ambassador and I've never been an ambassador

of anything so I was very much looking forward to how swanky that was going to be! Also I've

never had Sky. AND I was meant to be filming collabs with Hannah Witton on the Thursday.

AND I was just looking forward to living my life as a human who could think without extreme

pain.

But no. I did not get to have a fun week.

When I was finally able to look at a screen again I idly checked Twitter to find the headline

'Jameela Jamil accused of faking her illnesses'.

[crickets sfx]

- If you don't know, Jameela Jamil is a British actress, presenter and activist who

has Ehlers-Danlos Syndrome and number of comorbidities

(which is what you call diseases/conditions

that occur at the same time within one person and overlap or are linked).

Which is the thing I have. So that's great(!)

Really helped me to feel better(!)

Jameela was also struck by a car at the age of 17 which broke several of her bones and

damaged her spine and she was bed bound for a while afterwards.

I paralysed my arms at age 17 and because of that had a hospital procedure that went

wrong and left me bed bound for a while afterwards so...

[sarcastically] not that I'm taking this too personally or relating too much to something

that has nothing to do with me or anything.

An Instagram user had basically created a highlight thread that accused Jameela of lying

and faking her illnesses, going so far as to say she is suffering from Munchausen syndrome.

It's an incredibly long, detailed and rude deep dive that I'm not going to link you to because

reading it will only hurt your soul. Although some of the worst parts of this person's

accusations, including calling the diagnosis of Ehlers Danlos Syndrome or EDS a 'red

flag' for Munchausen's, have now been removed.

- which… yes. Because bullying one person you think is 'faking' a disability is

very different to systematically slamming an entire group of people. It's not much

better but at least you're this much less of an arsehole now.

In the past Jameela has spoken about having been born partially deaf and allergic to peanuts

and shellfish, being diagnosed with Ehlers Danlos at age 9, being highly allergic to

bees, being chased by bees, experiencing two car crashes and surviving cancer twice. According

to the Instagrammer this was just too many things to happen to one person and must therefore

be fake.

I mean it doesn't sound like that much to me.

Said the deaf girl with two genetic disorders that have led to a litany of accidents…

Also, in researching this video, I found out that the high incidence of cancer in those

with EDS which… In no way worries me about my future (!)

For those who don't know, Munchausen Syndrome is a mental disorder in which a person repeatedly

and deliberately acts as if he or she has a physical or mental illness when he or she

is not really sick. They can also make themselves ill by taking poisons or deliberately injuring

themselves. Their main intention is to be seen as being poorly so that other people

will care for them and they will be the centre of attention.

In no way is their behaviour linked to practical benefit, such as access to strong painkillers

or claiming disability benefits for financial gain, and if this IS their motivation then

they can't be diagnosed as having Munchausen or another factitious… I hope I said that

right Or another facticious disorder because, again,

it is in itself a mental illness.

It should also not be confused with Hypochondriasis or somatic illnesses, which is the expression

of mental phenomena as physical symptoms (eg. you worry so much about whether you're going

to have a heart attack that your body then gives you the symptoms of a heart attack)

because people with those conditions genuinely believe that they are ill

- and they are, they didn't MAKE those symptoms happen.

Whereas people with factitious disorders are aware that they are not actually unwell.

So why did this news upset me so much? Why did it hurt me?

Because even though I'd spent days fighting off the need to call an ambulance, even though

to me getting medical attention is actively repulsive, even though I have a genetic disability

that can be easily proven and seen…

[whisper] I'm still scared someone will say I'm faking.

Why do you think I was so nervous to make a video about my diagnosis having been changed?

I was diagnosed with a connective tissue disorder, I'm still diagnosed with a connective tissue

disorder… it's really a very marginal difference. But would having more than one

thing wrong with me mean people would think I was faking? Well... it's actually incredibly

common for people to have more than one illness or disability. Your body is a very delicate

system that's constantly balancing itself out, once one thing goes wrong it's common

for another to go too.

Plus EDS is EXACTLY the type of confusing connective tissue disorder that comes with

a whole load of symptoms like loose joints, muscle fatigue, growths, heart valve problems,

degenerative joint disease, chronic pain and, often, mast cell disease, which essentially

gives you allergic responses to a whole range of things but can be completely different

at different times based on inflammation and the levels of histamine.

It's a whole thing.

EDS sounds so weird but yet it's real. Disorderly collagen affects every system in your body.

One of the main reasons that Jameela was accused of 'faking' was because she said she was

born allergic to peanuts but grew out of it… which 20 to 25% of people with a peanut allergy

do anyway AND which is quite common with Mast Cell Disease.

I can eat gluten free bread some days.

And then the next day I can eat a slice from the same loaf and have a reaction.

Is that annoying? Yes

Do I wish it would stop? Yes.

I'm going to talk more about EDS in a video on Friday but let's break down 'how to

tell if a disabled person is faking':

- resist rolling your eyes.

Firstly, why do you care?

I get that disabled people are interesting, we're

generally fabulous and sassy, but we can't help it.

If the intention is that by weeding out 'fakers' it's stopping them from taking the place

of someone who 'actually needs it' then… no. That's… that's not how humans work.

There aren't a set number of disabled people allowed to be in society at any one time and

the rest of us are kept in a cage. You're not creating a positive and 'freeing'

someone. You're just perpetuating a negative.

And it's impossible to tell how ill or disabled someone is just by looking at them- even doctors

can't tell without running multiple tests. And often not even then! Take a look at the

comments on my 'I was misdiagnosed' video: so many people who were told by their doctor

that they were 'fine' only to find out later that they'd had cancer the whole time!

Or a genetic heart defect since birth but no doctor had ever listened to them!

See, if even doctors don't always get it right, how can a random stranger who has never

met someone, only seen them through the internet and put together a lot of third hand information?

Look, I get that maybe some of the things she's said are inconsistent but (A) EDS

is a remarkably inconsistent condition and (B) it's not that odd for two people witnessing

the same number of bees to remember it differently when one of those people is pretty chill about

bees and the other is deathly allergic and (C) most of these retellings are coming from

interviews and thus via different journalists and editors who will say things differently.

- also can we just discuss how brain fog is a thing? I can't remember precise things

about my own timeline and that gets better or worse based on how tired or in pain I am.

Being mean to 'fake' disabled people doesn't make you an ally or a hero to 'real' disabled

people.

Added to that, it's near impossible to get accurate facts from an interview. In one interview

Jamila spoke about being bed bound for two years and having to use a zimmer frame

- same, same.

But in another interview they recorded that she was bed bound for one year and had to

use a wheelchair.

This seemed to confuse her online attacker but I think we can all agree it's not that

complex, it's just two interviewers picking out the part of a story that is most interesting

to them.

I say that I was 'bed bound for two years' but obviously that doesn't mean it was consistently

awful [triumphant music] and then on day 730 I immediately stood up and was 100% better.

[beat]

It's like climbing a hill with ups and downs. The first year was the worst. During that

time I used both a wheelchair and a zimmer frame. Which of those aids you personally

find more interesting is likely what you'd pick up on when writing up a story.

I did an interview with Marie Claire magazine once and the interviewer asked what my favourite

alcoholic drink was. I explained that I can't drink alcohol because not only would it dangerously

interact with a pain killing medication I take in a life threatening manner but that

due to my connective tissue disorder my body has issues regulating my blood sugar levels

which are obviously affected by alcohol and thus I do the best for my body by feeding

it things that are beneficial and steering clear of anything that may harm it.

What was printed in the magazine?

“Jessica doesn't drink because she thinks her body is a temple”

- [baffled beat] wha….?

[beat]

Was that journalist okay?

Look, you cannot tell if a disabled or ill person is faking just by looking at them.

In fact many people who have a definite, verified, 100% blue tick disability

- which isn't something I really want to have to say

Even THOSE people face harassment for not looking disabled.

Now, you might say it's because disabilities are confusing. Unless you're in a wheelchair

because you're paralysed, it's apparently too complex for the average person to understand.

- which is a massive disservice to 'the average person' but please bear with me.

I have a disability that paralyses parts of my body for periods of time because my nerves

don't work very well so an injury numbs them. Sometimes I have to use a wheelchair

because I've paralysed my foot. One time I paralysed both legs from the knees down.

I was the disabled sign and people still gave me grief!

It's not uncommon. People drive up, park in the disabled bay, someone tells them off

for doing so and then looks astonished when said driver gets out of the car… and into

a wheelchair.

When my legs aren't too great or my energy is low and thus I'm out and about in my

wheelchair I get a cold dread at the thought of standing up from it in public. People are

always so interested! But… Some wheelchair users can walk. Sure, I mean not for long

periods of time, often it will hurt to do so or they're very wobbly or it does dangerous

things to their heart rate but… some wheelchair users CAN walk . Just because a wheelchair

user stands up from their wheelchair or walks does not mean that they are 'faking' the

need for their chair.

[Deep sigh] I know all of this.

But the thought that other people don't know this is what keeps me scared. I don't

know how to deal with harassment. I don't have a 'disabled' card that I can pull

out and shove in their face:

- “oh please excuse me while I go home and come back with my entire medical file of doctors

diagnosis letters and my DNA sequencing to show you my missing gene.”

And I shouldn't even think that because I shouldn't have to prove my disability

to anyone. I shouldn't have to prove anything to anyone. No one should. We should all just