Oh hello.
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
be decent human beings who try to be the best people we can be and think the best of others.
Of every £100 paid out by the British government in benefits only 75p is fraudulently claimed
(and that’s mainly because someone died but the system was too slow to react so still
sent them a payment). There is no epidemic of people faking disabilities.
Chill out.
The amount the government pays out is pitiful, going through the tests is humiliating and
not even people who are genuinely dying always get through.
As Jameela tweeted:
“Being gaslit about your health for entertainment is a very specific pain that a lot of people
with Ehlers Danlos and other invisible disabilities have to face every day by people who don’t
understand our vastly under-researched conditions.”
And if that’s you. Hey friend, you are ot alone, there are lots of other people out
there in the same boat. Equally feeling kind of afraid and kind of alone.
Look you can be mad at Jameela Jamil for whatever other
reason you like: you don’t like her acting?
Fine. Don’t like her feminism? Fine.
- Ah Lord, people who have disabilities aren’t immune from doing ‘bad things’
But if you tear someone down for disability related reasons then you need to recognise
that you’re hurting a lot of other people at the same time.
Besides, look, Munchausens might pop up in TV shows a lot but the incidence is only 1
in 50,000 or so and the incidence of Ehlers-Danlos is 1 in 5,000 so…
Pretty common for an uncommon thing really.
And thus we come to the end of the video. Subscribe to make sure you don’t miss my
next video, where we’ll be taking a closer look at Ehlers-Danlos Syndrome and maybe after
watching that this whole situation will make more sense to you.
See you then!