- Hello, lovely people.
Thank you to Skillshare for sponsoring this video.
More on them later.
And happy Disability Pride Month!
Yes, we have one too.
I can see you're surprised.
That's because no large corporations
have commercialized it yet.
They will.
If you follow certain accounts
on YouTube, TikTok, and Instagram,
then you're probably very aware
that it's Disability Pride Month,
to which I can only say, "Hi, friends."
One of the most common themes I see popping up
in comments though is, "I'm self-diagnosed.
Can I still be included?"
And if your first thought there was,
"How can someone self-diagnose their missing leg?"
then you really need to expand your idea
of what "disabled" means.
Because trust me, it's a lot more than that, pal.
A disability is any condition of the mind or body
that makes it more difficult for someone to do an activity
or interact with the world around them.
Thus, they have a limitation on their ability
to be independently active, i.e., without any kind of aid.
Yes, a Paralympian running
on running blades is still disabled.
And/or the person has a struggle in participating
in the things that are going on around them.
Which means that, yes, conditions that are not physical
also fall under the umbrella.
But you knew that, really.
One thing that nondisabled people do always seem surprised
by when meeting their first disabled person is
that we don't carry cards.
Not calling cards, although I'm all for bringing those back.
I mean that there isn't a registry of the disabled. (laughs)
We're not just born with a little tag on our toe
that says, "Card me."
To which the doctor goes, "Yup, add this one
to the registry," pops our name on it,
and then, you know, hands out a little card
that says, "Disabled.
Access to fancy bathrooms and parking spaces allowed.
Also, maybe all planes early."
(rimshot crashing) It's actually
a lot more complicated than that.
Not all disabled people are born with their disability.
And even for those who are,
not all of us will be diagnosed at birth
or even in childhood at all.
Thinking of birth defects,
only 2 to 3% of infants are actually diagnosed at birth,
but this rises to 5% by their first birthday,
due to things being either just missed
or it being a case of, "We're gonna have to wait and see
until her tiny body grows."
I have two genetic defects,
and I wasn't even diagnosed until I was 17.
They just thought I was really, really floppy,
accident prone, and unlucky.
Also, annoying.
Adults tend to stop listening to children
who say they're in pain continually. (laughs)
Don't do that.
Listen to children.
Self-diagnosis is the process
of identifying medical conditions in oneself.
You might be assisted by medical textbooks, the internet,
maybe your past experiences,
maybe close personal experience
of another family member or friend
who is going through something that you go,
"Ah, I'm pretty sure my body is doing
exactly the same thing."
Whilst self-diagnosis is prone to error,
it can also be a really valuable tool.
And that's what we're gonna be talking about today.
What are the pros and what are the cons?
Interestingly, self-diagnosis is so discouraged
by governments and medical establishments,
that doctors, when learning about medicine,
are very much warned not to diagnose themselves
with anything
because they can make mistakes in diagnosing themselves.
Which, I mean, couldn't they then make mistakes
in diagnosing others?
So I have a whole load of different symptoms,
but they all branch back to these two main things
that are wrong with me.
Yet I've actually gone
through the diagnostic process three times,
because one of them was misdiagnosed for a few years.
When I was first diagnosed
with mixed connective tissue disorder,
I had no idea what the outcome
of the diagnostic process would be,
and I was actually semi-surprised by it.
I did not know what that condition was. (chuckles)
But then after a while,
I started to realize that it didn't really make sense.
And thus, I investigated further,
and through my own research
and you guys leaving YouTube comments saying,
(Jessica clears throat)
"I think you have Ehlers-Danlos syndrome, Jessica,"
hit upon what I thought it was,
and then I needed to find a doctor to do all the tests
to confirm my self-diagnosis, which is indeed what happened.
I did have that.
I had EDS when the doctors thought I had something else.
I had EDS when only I thought I had it,
and I had EDS when all the doctors were
in agreement with me.
Self-diagnosis can be a step on a pathway
to a regular medical diagnosis.
You can watch a video about the diagnostic process
by clicking the link below
or the card in the top-left hand corner of the screen.
But my story is also not the experience
of some of my friends
who have sought help for mental illnesses.
And despite meeting or in some cases exceeding criteria
for diagnosis of conditions they are 100% sure they have,
have faced being told by clinicians
that they shouldn't get "held up" on a diagnosis,
despite saying that it would be helpful
to just put a name on what is going on.
In wider circles,
people generally are skeptical about self-diagnosis
when we're speaking beyond the brief,
"Hmm, I wonder if this is up.
Hmm, better book in with the doctor," stage,
and more into the concrete, "This is what I have,
and I don't need someone else to tell me it's so."
So let's go over some of the pros and cons
of a self-diagnosis.
And before we do that, let's have a little talk
about today's sponsor, Skillshare.
For those of you who somehow don't already know
about the wonders of Skillshare,
let me tell you all about it.
So Skillshare is an online learning community
with thousands of inspiring classes
for creative and curious people.
You can explore new skills, develop existing interests,
and get lost in creativity.
I'm a very creative person,
as you can probably tell by my choice in career.
I love all things video, photography,
and of course, vintage fashion.
If you, too, love being creative
and often find yourself starting new projects
before (clears throat) finishing the last one,
then maybe Skillshare is just what you're looking for.
With all this talk about self-diagnosis,
things can feel heavy sometimes.
I know I can feel overwhelmed
in talking about such big topics,
especially something that can be a bit controversial.
Whether you have a disability like me or not,
everyone needs to do a little self-care sometimes,
and that can often come in the form of creative joy.
I recently watched the online course,
"The Ultimate Self-Care Playbook" by Jonathan Van Ness.
Yes, the "Queer Eye" legend.
The section that stood out
to me was "Listening to Yourself,"
because having chronic fatigue
can obviously feel exhausting,
but if you're anything like me,
you take on lots of fun projects
and you want to go out and about to the farm
with your baby, ha ha!
And just doing it all can be too much on me.
So I'm learning to listen to my body
when it tells me to rest
and try to choose my projects at a better rate.
And thankfully, Skillshare has got my back and yours, too.
Yes, if you are one of the first 1000 of my subscribers
to click the link at the top of my description
or to use my code, JESSICAKELLGRENFOZARD,
you'll get access to a one-month free trial of Skillshare.
Back to our pros and cons list.
We're gonna start with the pros
because I am an innately positive human being,
and self-diagnosis can actually be a really useful tool,
especially for marginalized people.
One, have you seen a waiting list recently?
An internet diagnosis is much faster than the long wait
to be seen by a specialist,
and means that you can actually begin
to treat your symptoms, obviously not medicinally,
right here and now
in a way that may offer some actual relief.
"Oh, I might have a nerve condition.
That means I shouldn't cross my legs too much
'cause they go numb, I'm paralyzed,
and I can't find a specialist in my area?
I'll just start being mindful of that."
"Hmm.
I potentially have a heart issue,
but the wait for a tilt table test is a year?
I should start always sitting up from bed slowly now."
"Oh, the celiac blood work isn't coming back for six months,
but I bleed after eating bread?
Yeah. How about I just stop doing that?"
And you know what,
if the problem does clear up in that time,
well, that's great.
Fab. How could that ever be a bad thing?
Whoops. Oh no.
You misdiagnosed yourself.
And it got better.
What a shame. (rimshot crashing)
Heavy on the sarcasm.
Look, acceptance is important,
and acceptance of your own struggle is vital.
Allowing yourself the grace to say,
"Things are hard for me right now,
but I'm trying my best," is honestly an essential
to any diagnostic process.
Two.
Alternatively, self-diagnosis can ease your mind
as you realize
that what you're experiencing is pretty common
or like a low-level problem that can be sorted
with a slight change in routine or diet.
Did you eat six bananas yesterday and now have stomachache?
Because same.
Do you also have a toddler who likes to eat whole bananas,
but only the top?
And that's paired with your own inability
to let bananas just lie half-eaten on the counter?
(spring boings) Hmm.
Yeah. Yeah, I know.
That's great for saving a doctor's time
and not placing pressure on the health service
if you're in a country with the universal healthcare
or your wallet if you're not.
But make sure that if you continue to have the issue,
you do actually go and have it looked at, please.
And why is it great
that you found out it was just a common cold
and not the flu through a Google Search
rather than going to the doctor?
Because Google isn't going to give you the judgey eye
and say, "Seriously?
I'm five hours into this shift,
and I've already dealt with three car crashes.
Can you please just sit on the sofa with some chicken soup?
Christ."
Three, sometimes no one listens to you.
It might be because you're young, or female, or genderqueer,
or maybe your skin tone just doesn't match the doctor's.
Or maybe you just don't know all the right medical words.
Pro-tip, marry a medical person.
Came to every appointment to say long Latin words
whilst you nod gravely for the added gravitas.
Whatever the reason, certain people struggle to be heard.
Ironically, this can also be a reflection
of the very condition they're trying to get a diagnosis of.
No one taking you seriously about that ADHD diagnosis
because you talk too much and you're all over the place
so you can't actually keep track of symptoms
to give someone a list when they ask you for one?
Hmm.
Yeah, it might be worth grabbing a pen and paper
and getting some help.
Not even being famous inoculates you against this.
23-time Grand Slam tennis champion Serena Williams suffers
from a blood clotting disorder
and had to stop taking usual medication whilst pregnant.
After giving birth, she began to lose feeling
in her extremities and was in considerable pain.
Hospital staff did not listen to her complaints
or seem overly concerned,
and were reluctant to run tests
to check for new blood clots.
In the USA, Black women are three times more likely to die
during or after childbirth.
And she recalls thinking, "Oh my God, I'm dying,"
whilst the medical professionals tried to reason with her
that the tests just weren't necessary.
Once they were finally done, however,
they showed immediate surgery was needed
to keep her clots from reaching her lungs.
So yes, sometimes you do need to talk over the doctors.
Four, I live in England,
and yet still had to pay privately to get rediagnosed
with the rheumatological condition I actually have,
because my GP or primary care physician didn't want
to refer me to the free rheumatology route,
because I had already been diagnosed
with something rheumatological.
But, like, it's not a one and your done thing.
It's not how it works. (laughs)
You don't get turned away if you break your foot
because, whoops, ha ha,
you already broke the other one when you were a kid.
I am very fortunate in that I was able to pay
for that one-off private diagnosis,
but it certainly isn't something I can afford
on a more continual basis,
and definitely isn't accessible to the majority of people.
In many ways, professional diagnosis is only available
to the privileged.
Maybe you can't pay for healthcare.
Maybe you're too ill to travel particularly far.
Maybe you're queer, or intersex, or transgender
and have difficulty finding a doctor who is either accepting
or understanding of intersectionality.
Often, the really, really great doctors are the ones
who cost the big bucks.
Five, a self-diagnosis helps us to find resources
and community.
It's as simple as that.
We don't need to be gate-kept from each other,
regardless of your presentation
of whatever the condition may be.
And we do all have slight differences in our presentations,
because of course we do.
Not even identical twins are even
exactly the same bodies, are they?
Regardless of that, we all have tips and experiences
that can help others who are dealing with similar things.
Plus, very helpful for giving you access to language
so that you can explain what you're going through
to others around you.
Say the undiagnosed condition you're dealing
with is dyslexia.
You've been dealing with it your whole life.
You don't really know how a normal brain functions.
You just know that other people's brains seem
to handle information differently.
Once you've taken your time
and worked out that what you have seems to be dyslexia,
you can begin Googling things
like, "How to explain dyslexia to other people,"
and finally have some tools to help you explain what it is
that you are experiencing.
It's very difficult once you're in something
to know what it is like from the outside
and to know how you are different
and how what you experience is different.
You can now also look up study tips for dyslexics
or ways to make your workplace more conductive
to productivity.
You know, that thing that's supposed to be super important.
Equally, it's worth remembering
that battling illnesses can be draining and isolating,
and that symptoms have often been going on for months
or even years before a diagnosis is actually found.
Isn't it better to have a community
and a sense of camaraderie,
even if by the time that doctor's visit rolls around,
you find out that it was actually something different?
It still helped keep you happy along the way.
But now we've mentioned misdiagnosis,
so onto the cons list.
One, self diagnosis can mean misdiagnosis.
Looking up symptoms online means,
A, you may miss some other related signs
of a specific condition
and mistakenly think you only have something small
and temporary when you actually have something big,
or B, (scoffs)
uh-oh, you think you have something big,
but actually it's just something really small
and you've got yourself all worked up
and into a sweat about it, but it's okay.
That's a lot of unnecessary stress and worry
to place on your shoulders.
Or else, again, not enough stress and worry,
and whoops, you should have gone
to go and get that checked.
Please go to all your normal checkups.
Thank you.
Even your dental one.
You'd be amazed issues that untreated dental work can cause.
I'm married to a dentist.
Two, treating yourself incorrectly.
Yes, you may actually have the thing you think you do,
but by diagnosing yourself
and not being under the care of medical professional
when you start attempting to treat your ailment,
you may do more harm than good.
It might seem cheaper,
but it won't be if you're hurting yourself more
in the long run.
Sometimes, there are cost-cutting measures
the doctors can agree to,
like how can you set up a treatment plan
that you can self-manage
and then checking in every so often,
rather than something more intensive
which would rack up those FaceTime hours.
Also, make sure
that the websites you consult are trustworthy.
And if you're taking medical advice,
be sure they are actually run by medical professionals.
And please, speaking as someone with a heart thing,
if you've self-diagnosed with anxiety
or another mental condition
that also includes physical symptoms,
could you please just buy a little pulse ox,
I'll put a link in the description,
and just do some like casual sitting down,
standing up tests,
just when you're feeling pretty relaxed,
just to check it isn't a physical thing
that you're mistaking for a mental one.
Because I often have to say, "Hang on.
Am I nervous about this, or is it just my arrhythmia?"
No clue.
Could be nervous. (laughs)
Could just be skipping some heartbeats, as I do. (chuckles)
You know, just cazh.
Three, so you worked out what you've got.
Great. Now what?
Oh, you don't know?
Do I know? No.
I guess we'll just sit here awkwardly.
(rimshot crashing) Yes,
a diagnosis without support can be unhelpful,
to say the least.
A self-diagnosis by default comes without support
and means it's up to us to build it.
But what if you are up to that?
What if the pressure of building that support is just more
than you can handle?
There's a lot of information on the internet,
but it's also really difficult to navigate.
You may also stumble upon ableism and discrimination,
misconceptions about your new identity coming left,
and right, and center.
But without the strong foundation of,
"Yeah, well, at least I get great a parking place."
That's a complete joke.
In the UK, at least,
the disability diagnosis from a doctor isn't actually tied
to the government benefit system.
You kind of have to manually plug it in yourself.
And it takes months.
Socialized healthcare should definitely be more social.
It's important to remember
that diagnosis is not the end point,
but the jumping off point.
And it's just the start of your journey.
The goal is either healing
or learning to live with and accept your condition.
And there will likely need
to be some professional guidance with that,
or else you'll end up feeling a little hopeless.
Not that it's guaranteed you'll feel 100% supported
should you be diagnosed by a professional, obviously.
Obviously, these concerns are valid
and we should keep them in mind,
but there are so many reasons
where people decide to self-diagnose regardless,
lack of access to appropriate healthcare being a major one.
Thus, we should hold that self-diagnosis is a valuable tool
in some people's path.
After all, putting a name on something
by yourself doesn't make the ailment less real or severe.
So, is self-diagnosing good?
Mm, naturally there isn't really a straightforward answer
to the question,
but it's pretty understandable why people might want
to try and diagnose themselves.
Is it advised?
If you don't have other options
and it's going to lead towards healing in some sense,
especially if that is mental,
then that's a decision for you to make.
I'm quite sure many of us have our own stories to tell
when it comes to the path of self-diagnosis.
And I look forward to reading many of them
in the comments down below.
So thank you in advance for sharing.
And thank you also to Skillshare
for sponsoring today's video.
Remember, the first 1000 of my subscribers
to click the link
in the description will get a one-month free trial
of Skillshare,
so you can start exploring your creativity today.
If you're new here, please hit Subscribe and the bell icon
to be notified when I make a new video.
A special thank you to the clubbies
for supporting the channel
and making content like this possible to achieve.
If you'd like to be a member of the Kellgren-Fozard Club,
click the link in the description to sign up
or the Join button.
Membership includes exclusive, behind-the-scenes content
and many other goodies.
I'll see you in my next video.
(Jessica smooches)
(bright music)