So... some of you may, from the title of this video,

know exactly what it's about

in fact a couple of you already guessed on my Instagram

when I teased that this video is going to be made

so!

but for everyone else:

surprise!

I was misdiagnosed!

If you're new here: hi, I'm Jessica,

I make positive educational and amusing videos

twice a week about disability, chronic illness,

gayness and vintage-style

because I'm layered that way.

all humans are a spectrum of interests

subscribe if you enjoy painful life lessons packaged in happy ways

with some vintage sass

So, let's start at the beginning.

so I was born a bit off

slightly wrong this baby isn't quite like the other ones doing this

doesn't normally hurt babies but this one seems to be really crying about it

so let me continue this poking and maybe we'll find out why I was a little bit

too delicate I look a bit too floppy a little bit too slow and then after that

area is just too fast I spent my entire childhood either ill or injured and

accused of faking it 90% of the time I was known of my two signature

accessories an ALICE band and a tube bandage my mother was forever being

called into my nursery or my primary school because Jessica injured herself

again one of my most powerful memories is being dragged as a three-year-old

from room to room above our nursery by my friend and she had both of her hands

on my forearm and I remember looking up at her face and thinking what jolly

furniture was and feeling the bumpy play mats under my belly and then suddenly

the kind of pain that makes you no longer human

my entire freakin arm was hanging off just flopping around from a bit of skin

and it hot like you wouldn't believe and I couldn't even breathe because it

was just stabbing myself harder with every breath like a knife being pushed

between every single rib they called my mother who came and picked me up and

then had to take me to hospital herself I remember being in such pain that I was

mentally sat in a little room in my head was my animal instincts took over in my

entire body and I just I'm really screamed I probably would have bit

someone if they'd let their hand get too close according to my mother it took a

very long time before someone found his senior doctor but

to casually Swan over and just shove my arm back into place and that was in the

last time no no it happened more often than we could remember so my mother

developed a system for checking whether my arm is dislocated or just injured she

gave me a chocolate button which I would grab with my good arm and then before I

had time to eat it would offer me another one if my arm was just injured

I'd reach out with the bad arm and if it was dislocated I try but failed to lift

it and then cry loss there was a lot of crying I would say anything involving

bouncing because my ankles are essentially jelly trampolines her fun

until they snap your ankles not a big fan of rough-and-tumble also involved

many injuries Camille will just take a moment to recognize her spirit slapping

Lieb oranges to be injured I mean just wow some pouring why do adults think the

children faked injuries it is the least fun thing in the world I was a very

dramatic teenager and I had this well if I got hit by a car and broke my leg

everyone would show me intense love and realize how great I am thoughts but then

I accidentally paralyzed both my arms and I love stirs with my friends it was

very very boring Plus slide I did have some great party tricks to go seduced

occations because apparently most people can't do this and no fingers do have

been back like this and they can't fold themselves up into a kitchen cupboard

when playing hide and seek madness I may have been terrible at gym classes but I

was excellent when it came to warming up stretches that counts for something

right I mean I should get a medal

my general floppiness kind of flew under the radar when it came to my health

because I had a lot of other things that were wrong with me I was exhausted a

terrible digestion fell over constantly got dizzy just from standing up was in

constant pain all of the time had terrible migraines my extremities roar

is going numb and I feel the cold like someone is actually peeling my skin off

oh and I bruise like a peach i bruise dry so much as looked at the

aforementioned trampoline I didn't even have to get close to a trampoline I just

had to be in the general area watching other kids having fun on the trampoline

and my body would just become one massive bruise have I mentioned

trampolines enough are you getting that I would love a trampoline to jump up and

down on preferably with some kind of safety mechanism to protect my feet

little ankles anyway I'm actually finding this video really

hard to make and talk about and

sometimes I cover difficult stuff by being amusing probably gonna cry now

which feels like a very silly response to the fact that I was just joking about

trampolines but I always envied those kids who got to do gymnastics or play

sports or go on a bloody trampoline I've just been weak all my life and I can't

hate it I cannot allow myself to be unhappy with it

because then what what then this is my body and this will always be my body and

I can't allow myself to be annoyed because that clearly serves no purpose

but sometimes I guess being annoyed is the right thing to do anyway i paralyzed

both my arms for a year and a half when I was 17 and you probably heard this

story before and if you haven't desert card above with a video that explains

that happened and when they finally wrote to have what was wrong with me I

was diagnosed with something called hereditary neuropathy with liability

pressure palsies that was worked out by a blood test don't know I had to do that

I'm missing a gene my dad is too case closed right except it didn't

explain all of my symptoms because it didn't explain my hearing problems or I

floppiness or my dislocation or anything except the numb fingers and completely

inappropriate response to touch stimuli by which I mean feeling cold air as if

I'm being flayed and feeling cold water as if I'm on fire oh and the thing where

I paralyzed this myself I always forget that people's bodies

don't do that at the time the doctors mention something about mobility but

didn't really register because they use the term as an adjective not as the

actual name of a diagnosable condition so in my head I just chalked up

everything listened to my hat to the genetic condition I knew I had hm PP

which was also really helped by the fact that I turned 18 and suddenly I didn't

have a consultant doctor anymore because health systems great when you're a child

but once you become an adult it's the Wild West for five years I mainly just

went to my GP with complex and baffling things oh hey I've got pneumonia again

oh hi I had a migraine poor chap tried to work out but really shouldn't have

had to I did chnpp consultant once or twice but she literally did not care

about any of my symptoms that didn't fall under her remit and accuse me of

faking them Oh cuz again faking stuff clearly so fun I should out here having

hyper contra or psychosomatic illnesses is not the same thing as faking it no do

not relate not the case even if other people tell you sir so I wandered for

five years in no-man's land no help with unexplained symptoms that I really

disliked my body for having five years seven years feeling like I had maybe

because apparently there was just no reason to have them they made no sense

but then I met Claudia a loose month with

ever see you I left the up string of every story I

have is and then I met my wife she really does make everything better

she's very pushy she signed me up to a new hm pp consultant who is the bee's

knees and from there me learnt that although I had a lot of symptoms that

weren't under the HM ppm brother they probably did have something to do with

Rheumatology which she then referred me to brainwave so she referred me to

consultant rheumatologist who explained but hypermobility

wasn't just a way to talk about sloppiness but was actually a thing it's

a thing to speak on brother of things but it's the thing mixed connective

tissue disorder he said mixed connective tissue disorder also known as mixed

connective tissue disease is an uncommon systemic inflammatory rheumatic disease

it's an overlap syndrome a term used to describe when a patient has symptoms of

more than one classic inflammatory romantic disease to be diagnosed with n

c td you must have rheumatic symptoms plus anti RNP antibodies it's a little

bit like saying you have something I just don't know one yet by the way I

looked out auntie RNP antibodies and Google told me auntie RNP antibodies are

directed against you one particle of an extractable nuclear antigen named right

clue new blue protein protein it's on the screen which is apparently made out

of a complex of proteins and a small nuclear RNA mooned you well done if you

know what that means the initial symptoms of M CTD are

generally unspecific consisting of general malaise arthralgias myalgias and

fever and it should then take around three and a half years from the first

manifestations until almost every organ is affected with patients that meet the

full criteria of em CGD arthritis is the most common symptom with Renard's

swollen hands lymphopenia and heartburn following in descending order em CGD

made sense of a lot my symptoms my pain when it's called

blue fingers when I'm stressed pain and information in my joints information and

pain and in sun-exposed areas of skin I hate the Sun weirdly I know muscle

weakness and swelling swallowing problems difficulty breathing weird

heart thing fatigue of course there are some things that just didn't make any

sense and that I don't have but a lot of it made sense and I understood what was

going on I liked that it had a name I made a video called my disabilities HMP

P and M CTD that explained more but my eyebrows are terrible it didn't exactly

fit alright I had these symptoms for more than three

and a half years but one thing I don't have skin abnormalities other than

breathing raggedly I injured myself in a way that would cause scars but they're

not noticeably terrible just the one under my chin I also don't have Raynard

syndrome which is the key indicator of M CTD that's where the blood completely

leaves the tissue leaving your fingers white or yellow as response to even a

tiny bit of cold or stress which funnily enough my wife does have it and even has

to wear special gloves and start with metal in as it gets colder there's

actually there anything wrong with her I'm using to me anyway I have a whole

video about it it's there but the point is that it didn't really explain all of

my symptoms and again it didn't quite match and then I met some amazing

friends Jeremy and Candis who had a chiropractic clinic in Southwick England

allied chiropractic highly recommend and they pointed out my body type perfectly

fits another condition that sometimes people leave comments in my videos

saying hey are you sure you don't have this about and then I looked it up yeah

sounds like Ellis tan loss syndrome comes up cuz you saw that one coming at

me not me Emma's dad must endure more EDS is also

a connective tissue disorder and occurs due to variations of more than 19

different genes with a specific gene affected determining the type of EDS

typically these results in defects in the structure of processing of the

protein collagen and yes that is the thing that they make face

that's about it's why some people with ETS look much younger than they are and

some people look odd the thing is from my experience not many people in the

medical profession really know what MC TD is it's really gonna struggle getting

help for it and I feel as if I've been pushed from tenor to post and try to get

help from the physiotherapy service but things like my jaw dislocations when she

getting much worse than now for a week before my period I found my jurors so

loose on the left side but it partially dislocated during the night and then I

struggle to eat or talk and you don't really see that because I don't exactly

make videos when I can't talk but it's really been quite difficult EDS male

hand is a known quantity and whilst it might seem like I am actually saying

that I don't the popular kids have what I'm actually saying is I want to receive

adequate medical care for the symptoms I have and I want to know what's wrong

with me so I have the tools to manage it so I ask my GP primary care physician to

refer me back to Rheumatology in order to get reassessed particularly important

as the diagnostic criteria for EDS has changed I was diagnosed with MC TD and

they may have diagnosed me with it when they saw me the first time had that been

the case then and he said no because why it's not curable there isn't any point

in referring you and Rheumatology are very busy right now treating people with

things like rheumatoid arthritis they won't want to see you but I mean like a

doctor handing a parent baby and going it's dying not gonna tell you what they

can fun figuring that out by yourself what does the ability to cure something

have to do with giving someone the medical help they need for goodness sake

and that was a month ago and it really cut out my little heart the same doctor

in the same conversation also told me he refused to support me getting my