Whats wrong with me? // My Disabilities (Updated) [CC]

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Jessica Kellgren-Fozard

Jessica Kellgren-Fozard

4 жыл бұрын

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I Was Misdiagnosed- • I was misdiagnosed [CC]
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Пікірлер: 2 000
@barneyfromblackmesa2454
@barneyfromblackmesa2454 4 жыл бұрын
I think your grandfather was a time traveler who saw your pain and decided to go back in time to try and help you
@SmillyDonut
@SmillyDonut 4 жыл бұрын
That's a beautiful way of looking at it.
@andreashore7379
@andreashore7379 4 жыл бұрын
This makes sense to me
@jessicasmith5609
@jessicasmith5609 4 жыл бұрын
BarneyFromBlack Mesa awwwww
@professorhazard
@professorhazard 4 жыл бұрын
That's a way better take on it than my brain's immediate reaction of "I guess since he specialized in studying this he experimented on his progeny to learn more about it"
@1Eilatan
@1Eilatan 4 жыл бұрын
Headcannon accepted.
@Rotten_Ralph
@Rotten_Ralph 4 жыл бұрын
💫 One thing right with me.... I watered my indoor plants today, and fed my cats. I accomplished keeping others alive.
@jessicaoutofthecloset
@jessicaoutofthecloset 4 жыл бұрын
🙌🙌🙌
@tamberjune
@tamberjune 4 жыл бұрын
Woo!
@Freya778
@Freya778 2 жыл бұрын
@elizabethkeen7851
@elizabethkeen7851 4 жыл бұрын
Wait a second her grandfather’s clinic, that was named after him got her disability wrong? That's ironic.
@MzKrystalPaul
@MzKrystalPaul 3 жыл бұрын
And slightly iconic.
@calliopeblue2303
@calliopeblue2303 3 жыл бұрын
I see what ya did there
@nutkja
@nutkja 3 жыл бұрын
When I was a kid my cardiologist told me that my aorta was probably bigger than everyone else’s in my class. I was really proud of this as a kid. I feel like this is the best way to tell a kid they have an aneurysm.
@georgerobins4110
@georgerobins4110 8 ай бұрын
Reminds me of when my doctor told me that one of my kidneys is bigger than the other lol
@ursulacook9883
@ursulacook9883 2 ай бұрын
😩😫😩
@jojoojojoj
@jojoojojoj Ай бұрын
@@georgerobins4110 one of my kidneys is bigger than the other! one is 9,4 cm and the other is 10,7. but my doctor didn't say there was anything wrong with them
@PhilippaWood2020
@PhilippaWood2020 4 жыл бұрын
When you said that people who have mental health issues are champions in your eyes it generally brought tears to my eyes. Thank you.
@vxctorxa2003_
@vxctorxa2003_ 4 жыл бұрын
Same. That made me feel stronger than I thought I was
@DroDro3
@DroDro3 4 жыл бұрын
didn't cry but I feel you. Felt the same.
@Bumblebeena
@Bumblebeena 4 жыл бұрын
Hey, you are. It's debilitating. I don't suffer, but have very close family who do. When they open up to me, honestly it very much hurts as I feel guilty. But also, I appreciate they have opened up to me. Keep fighting, it gets better with good friends or family. You are not a burden, so remember that. We want you here!
@kaptainkayje
@kaptainkayje 4 жыл бұрын
I agree. Some days I don't feel like a champion. But still I fight on through. Stay strong lovely people. We're here for each other. ⭐
@nicolevincent4107
@nicolevincent4107 4 жыл бұрын
Same. Thank you. I've been struggling lately with chronic issues that aren't being taken seriously. I'm also looking at a 3rd cervical surgery, so my mental health is all over the place.
@lyalllunicec-1379
@lyalllunicec-1379 4 жыл бұрын
Thank you Jessica for acknowledging and pointing out that doctors don' t take teenage girls seriously when dealing with eating-related problems!
@abbyehrenstein2550
@abbyehrenstein2550 4 жыл бұрын
Lyall Lunice C-137 also everything else
@Sophie_Cleverly
@Sophie_Cleverly 4 жыл бұрын
Absolutely! It took me 10 years to get diagnosed with Crohn's and a big part of that was doctors not taking me seriously. I just would get repeatedly asked if I was pregnant or on drugs or had an eating disorder or wanted to skip school... They eventually decided I had ME and IBS. It was only after I nearly died and paid for a private assessment that they found I actually had Crohn's!
@RoflsaurousRex09
@RoflsaurousRex09 4 жыл бұрын
They don't take even girls in their 20's seriously. I was in an abusive relationship and now have PTSD, my dad had to come in and tell the doc some of the symptoms before he believed me about my flashbacks and high anxiety. Dang docs!
@meaganwallwork5395
@meaganwallwork5395 4 жыл бұрын
I was put on a new medication for my ADHD that made me not eat. I lost 15 lbs in 3 months, which was a lot for someone who only weighed 115lbs to begin with. When I told my doctor that I couldn't eat she would just say "well you need to eat" ????? Like what part of I cannot eat did she not understand??
@lyalllunicec-1379
@lyalllunicec-1379 4 жыл бұрын
@@meaganwallwork5395 Wow! That's frustrating, honestly. The people who you come to for help not listening
@Duncan_Idaho_Potato
@Duncan_Idaho_Potato 4 жыл бұрын
My mother suffered from multiple autoimmune disorders, including Crohn's disease and rheumatoid arthritis. She also had mental health issues, including PTSD from a severely traumatic event in her childhood (she was a witness, along with her mother and siblings, to her father's suicide by shotgun). And yet she taught me how to love, she taught me how to laugh, she taught me how to forgive. She, somehow, taught me peace of mind. She passed away nearly 4 years ago. What's right with me? I was raised by a mother who was, is, and always shall be my hero.
@ellenkucera6205
@ellenkucera6205 3 жыл бұрын
Your comment brought tears to my eyes. Thank you for sharing about your mother. I've often felt as if I had done a lousy job raising my son (I have multiple autoimmune disorders along with spinal issues. He visited today and left a card that basically said what you said about your Mother. Thank you for recognizing what a strong woman she was. 💜
@Dragon-Slay3r
@Dragon-Slay3r 11 ай бұрын
Games changed we need to deploy the snot curve as we're all going to be disabled 😂
@jk-jl2lo
@jk-jl2lo 4 жыл бұрын
somethings right with me: -my eyes are pretty -i'm compassionate -i'm still alive and kicking and ain't no bitches gonna bring me down
@daimhinaubrey3194
@daimhinaubrey3194 3 жыл бұрын
omg re the third point, you need to listen to Seeds by Icon For Hire, i think you’ll LOVE IT
@daimhinaubrey3194
@daimhinaubrey3194 3 жыл бұрын
“they tried to bury us, they didn’t know we were SEEEEEEEEEEEEEEEDS”
@bekki2308
@bekki2308 4 жыл бұрын
I’m a real heathen and just grab the loo roll with my whole hand
@JulesBiscuits
@JulesBiscuits 4 жыл бұрын
Right? I never thought of the right way to do it just what works
@quirkyblackenby
@quirkyblackenby 4 жыл бұрын
HPB me too
@ThinManApparatus
@ThinManApparatus 4 жыл бұрын
Same
@RoflsaurousRex09
@RoflsaurousRex09 4 жыл бұрын
I use my thumb and side of my first finger, not the tip of my first finger. I thought it was just me looking at her weird when she said most people do it that way.
@summerdais325
@summerdais325 4 жыл бұрын
Hahaha same
@kaz5824
@kaz5824 4 жыл бұрын
⭐️ One thing that is right with me: My ADHD means I get far more excited about things. When I dive into something I really enjoy, the physical feeling of excitement about learning and expanding my horizons is really amazing.
@aurafluff
@aurafluff 4 жыл бұрын
I have ADHD too and I feel the same way!! We just fall in love with things really beautifully. :)
@DieAlteistwiederda
@DieAlteistwiederda 4 жыл бұрын
Sounds like my partner, he has ADHD too and I have a personality disorder where I feel less on average than most people so it was weird at first to see someone feel so much and so genuinely but it's also a joy to experience that stuff through him.
@meaganwallwork5395
@meaganwallwork5395 4 жыл бұрын
Yes! Me too! I was walking to class today and I saw a blue bird and that got excited! 💙
@tomo4977
@tomo4977 4 жыл бұрын
Dyspraxic/ dyslexic here and since I'm also on the Neurodiverse spectrum I get this too! Rn I've gone to University and oh lawd I'm getting so many immediate special interests and random excitements from being there lmao
@matewis222
@matewis222 4 жыл бұрын
🌟 my ADHD lets me hyperfocus on the things I love like drawing & painting.... Also, excitement is a huge emotion rarely contained by our kind of minds... Yay!!!!!!
@Djttj2206
@Djttj2206 4 жыл бұрын
Fun fact: People with hypermobility/hEDS/EDS are 3 times as likely to get a migrane and get twice as many headaches than most 'normal' people. It's not like we suffer enough though
@audreydoyle5268
@audreydoyle5268 3 жыл бұрын
I shall pass the news on to my nanna and mum, who have been struggling with migraines and headaches for a long time, as have I, and I've suspected I have hEDS.
@Shadow-zf5uc
@Shadow-zf5uc 3 жыл бұрын
I do kind of wonder if it has anything to do with the fact that hEDS causes POTS and other issues with blood pressure.
@booklover2190
@booklover2190 3 жыл бұрын
huh. I was born with a deformed skull and my parents would always bring headaches up to doctors(who had no clue why). I wonder if this is why... I don't have time to question my existence though so.
@crocus8080
@crocus8080 3 жыл бұрын
🌟One thing right about me: Because of my ADHD, I can hyperfixate on a specific subject and retain just about everything about it! Want to know about Dallon Weekes, Furbies, or Conlangs? I'm your guy!
@magicalplaid
@magicalplaid 3 жыл бұрын
Same but then I forget half of it once I lose interest lol
@tatiana4050
@tatiana4050 3 жыл бұрын
@@magicalplaid so depressingly relatable
@Shadow-zf5uc
@Shadow-zf5uc 3 жыл бұрын
I can do this too as a result of my OCD causing my brain to be built for obsession, hyper-focus, and hypervigilance.
@Lynn-rv4ty
@Lynn-rv4ty 2 жыл бұрын
it’s crazy that i’ve known i’ve had ADHD for years but i’ve only just found out that a lot of the weird things i do are actually common symptoms of it
@IrKeNoVa
@IrKeNoVa Жыл бұрын
Thanks for triggering my "let's read the comments and stop listening to Jessica" reflex... 😤 now I've got to rewind...
@brinashiloff3439
@brinashiloff3439 4 жыл бұрын
One thing right with me: I have synesthesia, which allowed me to write a novel about a entirely unique superhero!
@ethanpoole3443
@ethanpoole3443 4 жыл бұрын
Of all the gifts I would have loved to have had, synesthesia is my favorite as it always seemed such a beautiful way of seeing the world. I feel similarly as a high functioning autistic as I consider my autism to be a genuine gift and a fundamental part of my core identity. Unfortunately, I also have a ton of other mental and physical illnesses and disabilities caused by childhood abuse that I would happily give up in a heartbeat if a cure were offered...but not my autism!
@sandieM27
@sandieM27 4 жыл бұрын
wow now I have learnt something new today :)
@fiene888
@fiene888 4 жыл бұрын
Ethan Poole i love your comment! i’m also a high functioning autistic (just “functioning”, depending on who you ask) and wouldn’t trade my autism for the world. it is a part of me, and i think without it, i’d be a terribly boring human being!
@sarahl.5748
@sarahl.5748 4 жыл бұрын
Ooh what kind?? Me too :)
@user-qv2qf1jk5o
@user-qv2qf1jk5o 4 жыл бұрын
What’s it called? (...if it’s been published)
@TheAraberpinto
@TheAraberpinto 4 жыл бұрын
my PTSD mixed with ADHD gives me the right amount of brakes to stop me from being too excited and hurt myself but my ADHD gives me the power to continue functioning. Somehow a better combo than I thought
@zoshaamelie4902
@zoshaamelie4902 4 жыл бұрын
Never related more
@larendijacosmica
@larendijacosmica 4 жыл бұрын
Same...
@TheAraberpinto
@TheAraberpinto 3 жыл бұрын
zosha Amelie I am glad to know I am not the only one
@narwhalmeat4607
@narwhalmeat4607 4 жыл бұрын
⭐ My autism makes me more conscious about helping others be comfortable since I'm hyper aware of every little thing going on.
@foreverwander0320
@foreverwander0320 3 жыл бұрын
I love that. 💖
@Freya778
@Freya778 2 жыл бұрын
❤ same here!
@misseselise3864
@misseselise3864 2 жыл бұрын
isn’t a symptom of autism spectrum disorder the inability to pick up on social cues?
@narwhalmeat4607
@narwhalmeat4607 2 жыл бұрын
@@misseselise3864 That can be, yes. I don't naturally pick up on social cues well, but I have also studied nonverbal communication extensively to better learn. I'm fortunate to be pretty good with book learning. I see what people are doing, process it, then aid as needed and as is appropriate.
@Y2Ksnowglobe
@Y2Ksnowglobe 4 жыл бұрын
One thing right with me: One of my recent medical tests said that my gallbladder is unremarkable...so there's that.
@ErraticConduct
@ErraticConduct 3 жыл бұрын
That sounds positive... Is it not a positive? Unremarkable sounds nice, mine was very sad and hurting me very much and giving me much jaundice, so we had to part ways a couple years ago. :(
@lizscott284
@lizscott284 3 жыл бұрын
I love it when tests come back 'unremarkable' 🦓
@eezekiel07
@eezekiel07 3 жыл бұрын
Standard medical terminology, because it's more accurate than saying 'normal'
@saraquill
@saraquill 4 жыл бұрын
My autism helps me remember stuff I read years ago in great detail.
@ethanpoole3443
@ethanpoole3443 4 жыл бұрын
It also tends to make us very detail oriented, which also helps out a lot in many settings, careers, and hobbies.
@Amyduckie
@Amyduckie 4 жыл бұрын
Lord it makes my memory worse! 😂 I’m good at remembering other things though, so I suppose that’s something. 😝
@user-bj7em4fv1p
@user-bj7em4fv1p 4 жыл бұрын
I have Asperger but I don't think my memory is that great? Sometimes I wonder if I was misdiagnosed :(
@saraquill
@saraquill 4 жыл бұрын
@@user-bj7em4fv1p There's no rule saying we need to have all the quirks to qualify being autistic. I don't.
@mzimmerman6980
@mzimmerman6980 3 жыл бұрын
Me: why the hell do I remember this obscure and pointless thing from six months ago but can barely remember any of my childhood Me, reading this comment, as someone who has PTSD and seriously suspects they have autism: Oh.
@straberryshinigami15g97
@straberryshinigami15g97 4 жыл бұрын
🌟 one thing that's right with me: my depression and anxiety makes it easier for me to empathize and connect with other people because i feel emotions so deeply.
@ethanpoole3443
@ethanpoole3443 4 жыл бұрын
It’s just a shame that most of us will gain those well honed empathic qualities through considerable past traumas and abuse. As someone whom has struggled with Complex PTSD from childhood abuse for approaching four decades now, I wish all my fellow empaths all the very best! We do not ever wish to see another suffer the way we have and always seek to help those in need and see to it that those around us feel recognized and validated as nobody deserves to feel invisible.
@alisonbarker3862
@alisonbarker3862 4 жыл бұрын
Wonderful.
@TashitaxLinda
@TashitaxLinda 4 жыл бұрын
Same. ❤
@theknd
@theknd 4 жыл бұрын
Sometimes too deeply 💀
@kieranshorten5135
@kieranshorten5135 4 жыл бұрын
Jessica: those of you who deal with mental health issues are absolute champions in my eyes Me: *sobbing*
@Shadow-zf5uc
@Shadow-zf5uc 4 жыл бұрын
So because beautiful Jessica decided to share her disabilities I'm going to share mine. I've pretty much had OCD since birth. And not like the, "oh I'm so OCD" OCD. The real clinically diagnosed OCD where I constantly deal with thoughts that tell me I'm secretly a horrible person who's going to loose control and kill everyone I love in horrible ways. Also have clinical depression because of this too. Lastly, I have a condition called Generalized Vulvadynia. This makes the skin or my entire vulva, (which includes my clitoris, labia, urethra, and the entrance to my vagina) feel like it's being burned with battery acid. One thing that's right with me: I'm still alive and determined to get the care that I need.
@Freya778
@Freya778 2 жыл бұрын
@sah05319
@sah05319 4 жыл бұрын
I was diagnosed with hEDS at 16 (7 years after the onset of pain). Mine came with the trifecta as it'a called (POTS, MCAS, EDS) as well as mild gastroparesis, hearing loss in one ear, intense migraines, scoliosis and my heart valves thickening because why not. According to three primary doctors I saw as a teen, this was all growing pains and anxiety. Well ha. Jokes on them. My body is actively trying to kill me.
@introspectre
@introspectre 4 жыл бұрын
I also have the trifecta. Issues started in early childhood, and I wasn't diagnosed until my mid to late 30's. That was only EDS. I was 40 before I got the hyperPOTS diagnosis finally, after a cardiologist told me I was hysterical. No joke. Hysteria. *face palm* Still waiting on the correct diagnosis for MCAD. It's screamingly obvious I have it however, I simply haven't even gotten around to finding a specialist prove it. There's nothing they can do that I'm not already doing so it simply isn't the squeaky wheel that gets the grease, as it were.
@lemonman8654
@lemonman8654 4 жыл бұрын
I wasn't misdiagnosed on the same level but for 5 years I was told I had abdominal migraines when in actuality I had chronic stomach problems resulting in constipation and I had to be rushed to hospital when I was 10. Honestly some doctors are kinda neglectful but others are really helpful.
@tamberjune
@tamberjune 4 жыл бұрын
@@introspectre please take all precautions for MCAD because it is now thought to be a huge part of our pots symptoms as well.
@bigboredthing
@bigboredthing 4 жыл бұрын
I got told growing pains as well. When that finished they thought maybe Juvenile Arthritis, 15 years later they went 'oh, her mum has cEDS' did a blood test and BOOM, Type 1 EDS with POTS and Marfanoid Phenotype. I also have spina bifida occulta. My life is pain, though I'm a dab hand in a wheelchair these days.
@JenniferDuffy
@JenniferDuffy 4 жыл бұрын
I am 48 and found out I have hEDS. Only after 50 ankle dislocations ( constantly spraining and rolling my ankle since I was 16), 5 years of severe sprains (requiring a boot)and a spiral tibia fracture. I also have moderate to severe MCAS. I don’t need a port yet for daily Benadryl but I have daily flushing, lip swelling , facial swelling, diarrhea and stomach cramps.This is basically a slow form of anaphylaxis that I will have for several months. And then there is the rosacea. I have a moderate form of papular rosacea. Currently I have tiny papuals on my face that has been drying and flaking off on top of the tiny bumps. Sooooo much fun.
@missmefyne9247
@missmefyne9247 4 жыл бұрын
I've had depression and anxiety in varying degrees since high school, and even though I know exhaustion is a side effect of both I still find myself feeling almost guilty or weird that my answer to "how are you?" is always "tired." So, thanks for calling us strong. Sometimes I just need to hear someone else acknowledge my efforts to put one foot in front of the other.
@hannerikruger7216
@hannerikruger7216 4 жыл бұрын
i felt this so hard
@hi_itspoohbear
@hi_itspoohbear 3 жыл бұрын
i genuinely burst out into tears when she said that. I just felt so seen and happy :)
@MaeveLaRenarde
@MaeveLaRenarde 3 жыл бұрын
I relate to your comment so much.
@Tasoq
@Tasoq 3 жыл бұрын
I know them feels
@Sweet.peach21
@Sweet.peach21 3 жыл бұрын
It made me feel seen. Don’t usually hear ppl tell me that and it’s so nice to hear it from someone I look up to
@ZX9RKiller
@ZX9RKiller 3 жыл бұрын
EDS diagnosis in Germany: "Don't do Google, then you'll get better soon." This video should be shown to every doctor/physician. It's an perfect shortcut about the most important comorbidities. "You must be psycho, can't have that many exotic diseases..." 🙄 Thank you so much for your work!
@gomobby
@gomobby 3 жыл бұрын
2-3 weeks ago, this video came up on my "suggested for you" page, even though I had never seen any of your videos. As you talked about your EDS, I started thinking it all sounded like what I've gone through my whole life, and doctors could never tell me why. Fast forward to this morning- I was officially diagnosed with hypermobile EDS, and I cannot believe I finally know what is going on with my body. Thank you so much for talking about this and bringing light to it! I would have never known!
@RedSpade37
@RedSpade37 10 ай бұрын
Hey there! I also have hypermobile EDS, and I noticed this comment is 2 years old. How are you doing, 2 years later thus far?
@JulesBiscuits
@JulesBiscuits 4 жыл бұрын
My ENT did an MRI of my ear bones and found they aren't where they are meant to be and he says this is likely do to having Ehlers Danlos and why I'm deaf. That might be what people are talking about when they talk about the connection between EDS and hearing loss. One thing that's good about me is my smile 🌟
@haniecloud
@haniecloud 4 жыл бұрын
hell yeah, you go with that beautiful smile
@LecheVitrineUK
@LecheVitrineUK 4 жыл бұрын
I've just been found to have dysautonomia and I'm under the POTs clinic in my city, they think, as do I that I also have heads but there is nowhere that does assessments apart from London and there is no part diagnostic support for it so POTs clinic said don't bother. I asked her if the deafness in my ear was due to EDS, I'm being referred to audiology, my hearing loss is intermittent with tinnitus is yours constant or intermittent? I was told years ago that it was ' for ear' I had like kids get but this week I've been told it isn't. I wondered if others had the same experience.
@Emilyweasel2023
@Emilyweasel2023 4 жыл бұрын
This is interesting I did wonder! My hearing is definitely going and I have an appointment with audiology soon and deafness on the other side that doesn’t have EDS
@JulesBiscuits
@JulesBiscuits 4 жыл бұрын
@@LecheVitrineUK it's constant and no tinnitus. I am seen at the EDS clinic in London and they are amazing. I have friends who have been diagnosed by rheumatologists outside of London though. Where abouts are you? I might be able to suggest a Dr if you want.
@leonie1746
@leonie1746 4 жыл бұрын
Missbunny187 I don’t have EDS but I had an MRI for a totally unrelated reason and it turns out one of my whole ear bones is missing! Very fun, also deaf (right side)
@baileytheservicepupper
@baileytheservicepupper 4 жыл бұрын
A round of applause for Jessica for not only dealing with all of this daily but also taking the time to explain it to thousands of people on the internet in an effort to educate. You're a rockstar!
@SassyCasy
@SassyCasy 4 жыл бұрын
You’re literally the first person I have ever seen talk about POTS. When ever I explain it people tell me I must just be out of shape🙄 even when I got medically diagnosed at 15 people said I was making it up and wanting attention. Bc I randomly fall over and pass out for fun
@MysticSybil
@MysticSybil 3 жыл бұрын
"They make a rainbow and they're fun" you're adorable
@Hamster7678
@Hamster7678 4 жыл бұрын
'At least its interesting' Oh mood. What mystery symptoms will I experience today? Nobody knows!
@BliffleSplick
@BliffleSplick 4 жыл бұрын
When you're accidentally living life in Hard mode, but the RNG keeps re-rolling what the effects are. I feel you.
@DieAlteistwiederda
@DieAlteistwiederda 4 жыл бұрын
I feel like I'm playing my life on that 1HP mode Kingdom Heart has build in. Always extra careful and have to plan stuff a lot more than most people just because I know I only have that one health point and when that is gone I'm done.
@Hamster7678
@Hamster7678 4 жыл бұрын
@@BliffleSplick i keep getting very bad pulls. rngesus is cruel.
@bigboredthing
@bigboredthing 4 жыл бұрын
Let's play a game of 'Wheel of Dislocations' where the joint that decides it wants to leap forth out of it's cartilage prison and just do its thing repeatedly for the day is chosen!
@adisappointment3095
@adisappointment3095 4 жыл бұрын
Like let’s spin the wheel and see what’s wrong with my body todayyyyyy!
@jordang7479
@jordang7479 4 жыл бұрын
⭐ one thing right with me is i remembered to take my meds and eat something
@sparklythings22
@sparklythings22 4 жыл бұрын
proud of you!
@rosyv5081
@rosyv5081 4 жыл бұрын
WHAT A MOOD
@tahneemeasday6242
@tahneemeasday6242 4 жыл бұрын
I was like "oh Jessica your eyebrows weren't that bad, that's when I started watching you!" And I went back and looked and well... Your eyebrows do look lovely now!
@justmeish1997
@justmeish1997 4 жыл бұрын
Glad you got the diagnosis... I know I have EDS but my local rheumatology department quote "doesn't see the point in seeing me to diagnose something they cannot cure thus wasting spaces for people actual curable conditions" that's nice 🙄🤷🏼‍♀️... Without the diagnosis I cannot get support for work or increase my likelihood of qualifying for disability benefits because my other 15 conditions don't quite cut it 🙄
@adrianaphoenix4198
@adrianaphoenix4198 4 жыл бұрын
⭐️ One thing that's right with me: when the depression brain fog lifts up at least for a bit, I'm an incredibly apt and fast learner. I'm actually in the process of teaching myself social media marketing so that I can make my living via freelance!
@Lasopamuerte
@Lasopamuerte 4 жыл бұрын
"might be having mini strokes" she casually mentioned
@margicates553
@margicates553 3 жыл бұрын
Ehhhh me tooo!🤷🏼‍♀️
@AnnikaVictoria24
@AnnikaVictoria24 4 жыл бұрын
I have so many of the same symptoms as you Jessica, always have, and was just going through the "Omg are all my different mystery symptoms eds??" last week before I find out 2 says ago that you now are also diagnosed with eds. Always thought everyone else could do the thumb thing too lmao. I am going to try and get my doctors to rule it out or at least try and look a little bit harder for the reason I'm in pain all the god damn time and all my joints click and pop and HURT instead of them saying again to me, "that's just normal". It's exhausting trying to work out why your body does what it does.
@foreverwander0320
@foreverwander0320 3 жыл бұрын
Oh wow... I have a lot of these symptoms too. (I’m supposed to go to a rheumatologist at some point for some of these + hair loss... I’m scared and haven’t gone yet. 😬)
@SumireIsrafel
@SumireIsrafel 3 жыл бұрын
I'm kinda going through it right now with the same issues, I also thought things were normal that I'm seeing now in this vid (the thumb thing??? is that really not normal???) I'm not sure what to do with this info...
@jasminehagerman6329
@jasminehagerman6329 3 жыл бұрын
I have the same issues. and for years I tried to get help with military docs but the drs wrote me off just as wanting pain pills. I don't want pain pills, I want a diagnosis and help , I loathe pain pills 90% make me puke my guts up. I went through 2 kidney stones with minimal meds only ibuprofen and acetaminophen along with a heavy dose of swearing and curling up in the fetal position and my poor husband trying to convince me to take the stronger stuff.
@gemjule
@gemjule 3 жыл бұрын
I have different parts of my body that ache and also relate to all of the things you mentioned and can do all the things mentioned but I have a friend who likely has Eds who is in constant pain and sometimes I'm not in pain so I probably dont have it right? I'm genuinely confused
@tayatinsley7175
@tayatinsley7175 3 жыл бұрын
I'm not sure if I have it either? Could anyone let me know if you can have some symptoms but not have it? I'm a bit confused after finding nothing on google, or any medical websites, thankyou!💕
@emilyharper7448
@emilyharper7448 3 жыл бұрын
My partner also has EDS, and he finally found a gastroenterologist a few years ago who’s wife actually has EDS and would take him seriously. Several other people in his family also have it, and their high levels of daily pain is often written off. I wonder if the difficulty in getting care is similar in US and UK.
@LadyPashta
@LadyPashta 2 жыл бұрын
You mean "boyfriend"? Why do people use the word "partner" when referring to a lover? The word partner doesn't work for that, or at least, it doesn't for me. Partner means someone that goes in on something together with you. Now they are adding "business" in front of it to make it clearer. Just use "boyfriend" or "girlfriend", much easier.
@emilyharper7448
@emilyharper7448 2 жыл бұрын
@@LadyPashta I see where you are coming from. I prefer the term partner because we are going in on life together. While we will eventually be husband and wife, calling each other boyfriend or girlfriend in the meantime doesn't encompass how much we mean to each other. If someone is ever confused, I simply explain. However, it has become much more widespread. The good thing about language is that it evolves as we do.
@chaotic.content
@chaotic.content 4 жыл бұрын
wait, not everyone can touch their thumb to their pinkie? ...huh
@NaomiJameston
@NaomiJameston 4 жыл бұрын
I can't even touch my thumb to the base of my middle finger, but my hand muscles are fused, so... yeah. Don't take me as an example. :)
@BliffleSplick
@BliffleSplick 4 жыл бұрын
Apparently most people can't push their toes back 90+ degrees either.
@petra5979
@petra5979 4 жыл бұрын
I thought it was the way her thumb is curved there. Because i can also do that very easily, the touching my pinkie with my thumb thing
@RoflsaurousRex09
@RoflsaurousRex09 4 жыл бұрын
My husband can't. He can hardly even move his hands in a paying position. His hands aren't streachy at all!!
@katlandreth6430
@katlandreth6430 4 жыл бұрын
I think she was demonstrating something else. In the US at least, the hand signs that are used for hEDS are being about to wrap your thumb and little (pinky) finger around your wrist (positive Walker sign), and/or putting your thumb across the palm and gripping it with the rest of your fingers - if the tip of your thumb sticks out the opposite side of your fist, that's a "positive Steinberg sign".
@aundria1038
@aundria1038 4 жыл бұрын
I feel like i get sassier just from watching you. You indirectly inject me with sass.
@luciaayaso2260
@luciaayaso2260 3 жыл бұрын
I'm allergic to 6 different metals including Nickel which is in literally everything since it comes from the earth so yeah everything. Including Cobalt, the color, cheese, butter, and oil. Then there's Gold, Titanium Oxalate, Palladium, and my personal favorite... Sodium. I had no allergies to anything until 27 and became allergic to EVERYTHING! At least I don't choke and die when I cheat on my diet, I just have excruciating internal pain. It affects my nervous system as well as the connective tissue around a few vital organs. This is all long term so it's all down hill from here. 4 years later and I still can't stop eating chocolate occasionally no matter how itchy my throat gets and I want to cheese grate it lol. I can totally relate to this beautiful specimen of a woman although I believe her to be much stronger then I. She gives me hope. I've always had a similar sense of humor and I think that was to prepare me for the shit storm of my life. Now I am much more at peace with myself but as for others, I'm pretty sure everyone thinks I'm making it up as an excuse to be a size 0- 2. Even though I've been 5'2" and petite since junior high. But nonsense, I've made up an allergy and got deathly ill lost all my body mass and had diarrhea at least 3 times a day plus countless other symptoms all faked for the sake of being a tooth pick. Yup that's exactly it. This really made me not feel alone. Maybe one day my allergy will be recognized in the community and people will have a little Fucking respect. God bless xoxo
@charlotteblack7593
@charlotteblack7593 3 жыл бұрын
I feel your pain. I have a sulfur allergy, which includes all its lovely derivatives as well. Which of course is in foods as preservatives, stabilizers, colouring etc, cleaning products be it soap, shampoo, detergent, toothpaste etc but also a absolute fuck ton of medications like codeine. Add on the whole your body needs sulfur to survive and needless to say I understand the whole wtf world being allergic to a pure element can create.
@debraandrus8302
@debraandrus8302 3 жыл бұрын
Be strong. Believe in yourself. Hang on to the people in your life that believe in you...even if that's only you. Know that there is a world of people out here who know you are sane, strong, and deserving of respect.
@emarv6189
@emarv6189 3 жыл бұрын
I’m allergic to Nickel as well! When I was little I got my ears pierced and my ear ended up swelling and turned green because the earrings I had were made of nickel!
@iamgabriel5823
@iamgabriel5823 3 жыл бұрын
Which vaccine did you take when you were 27?
@imamop576beetle
@imamop576beetle 4 жыл бұрын
⭐️⭐️⭐️One thing that is right with me: even though i cant explain things in jargon because i cant process a lot of the big words, i can explain the most complicated things in laymans terms which makes me a super easy to understand and i often am able to tell my friends about Big Issues without scientific jargon and they find me easier to understand than articles!! meaning i can probably be a good teacher
@etoilesvives
@etoilesvives 2 жыл бұрын
hearts
@savannahwoods3222
@savannahwoods3222 2 жыл бұрын
thats exactly how i feel and i didnt know i was good at teaching until i did it for my job, and now i get to do astrophysics research:)
@straberryshinigami15g97
@straberryshinigami15g97 4 жыл бұрын
thank you for the shout out to us mentally ill folk. one thing we need to do better is support people with physical disabilities too, especially invisible illnesses
@ladyfox7193
@ladyfox7193 4 жыл бұрын
As someone who has dealt with mental health issues my whole life, and who is now on disability and unable to work because of them, I just wanted to say thank you. In the past I've dealt with friends who blamed me for me mental illnesses and recently with dear friends complaining that my "negative energy" was bringing people down. So to have you, someone I admire who has so many struggles of your own, call someone like me a champion...It made me tear up. It made feel seen. Thank you. 🌟Something good about me is that almost 31 years since my first mental health diagnosis (and there have been many more since), in spite of insurance problems and treatment failures and everything life just throws at you...I am still here. I am still trying to get better.🌟
@debraandrus8302
@debraandrus8302 3 жыл бұрын
You go, girl!
@MSYNGWIE12
@MSYNGWIE12 3 жыл бұрын
I am in very similar position and so I give thumbs up to Jessica for discussing her issues and with such class! I have a life long mental illness too and have not been able to hold a job in spite of a university degree; I had an EVIL, abusive therapist too that I had to charge and since it was back a few years, I didn't manage to get his license. I won't go on but it is comforting to know others have the same feelings about being singled out as a "weirdo" or lazy or worse by idiots. AS I age I worry about how I will survive financially...Namaste, Z. (anytime you need too you can email me with your negative energy, because I don't take it the wrong way- I don't judge, I know all about having "those days" days most women would write off to PMS)
@JulieAiken
@JulieAiken 3 жыл бұрын
I had a brain tumor for over 30 years and chalked up the symptoms to ADD, klutziness, migraines... you name it. It's so important to get the right diagnosis, if only so that everything finally makes sense. A year and a half ago I went to a wonderful new general family doctor who said "Let's get you an MRI" and so I'm alive to tell the tale. You're an inspiration.
@raquelc.c.4195
@raquelc.c.4195 3 жыл бұрын
I’m sure most of the 1.9K comments so far say the same thing I’m about to say, but THANK YOU. It’s unbelievably comforting to hear you are not the only one.
@tiahbeautement2502
@tiahbeautement2502 4 жыл бұрын
✨EDSer. One good thing about me...when the horse I ride fell , I bent three allll the way back. But thanks to EDS, the ER/Casualty/A&E doc said nothing was broken. Which turned out to be untrue. I had broken my pinkie finger, which I discovered a month later. But thanks to EDS, having a small broken bone was no more painful than other parts of my body. And now the hook the surgeon put in comes out on Thursday and I am very excited. Even though I have been horse riding anyway. Because when you have EDS, you can hurt yourself while doing nothing, so may as well do stuff...because horse riding accidents make for better stories than, “So there I was, doing nothing, when my rib joint ripped out with a loud pop...” So...YAY.
@makerofstuff
@makerofstuff 4 жыл бұрын
At 66 my MS diagnoses has been changed to EDS! Who knew?! Learning to walk on the treadmill is my favorite thing right now.
@marjuracek
@marjuracek 4 жыл бұрын
How were the doctors able to do that? How did they misdiagnosis you with MS? Does EDS cause lesions on the brain similar to MS? Sorry so many questions. My mom was diagnosed with MS 20 years ago and I suspect she is misdiagnosed, however, her scans show lesions on the brain. This is what got her diagnosed. I’ve noticed I’m having similar issues to my mother at the same age she was. I have suspected Mast cell and EDS, but doctors won’t do more testing .
@makerofstuff
@makerofstuff 4 жыл бұрын
@@marjuracek I think I am going to try Dr Terry Wahls diet recommendations and see if it helps. I don't think I really have EDS, someone surely would have noticed before, right?
@marjuracek
@marjuracek 4 жыл бұрын
Margaret Oliver I don’t know. It’s so hard to get doctors to continue looking at things and doing different tests when they get stuck on something, because insurance won’t approve further testing. It is worth it to try the diet for sure. Do you have hyper mobility or the skin elasticity? I know there are a few different types, but these seem to be just common.
@makerofstuff
@makerofstuff 4 жыл бұрын
I have hypermobility.
@gabrielbruce1977
@gabrielbruce1977 4 жыл бұрын
"... So that means I can wrap my fingers around my wrist and do THIS with my thumb" ... Sudden concern because I not only do both of those but have a small swarm of other problems... But also, as someone with a laundry list of mental illnesses that I'm only now discovering the true depths of (thanks, Canadian health system)... thank you????
@SumireIsrafel
@SumireIsrafel 3 жыл бұрын
I wonder, does the thumb thing have a name?
@Valiii
@Valiii 3 жыл бұрын
Sumire it’s called thumb sign and she’s doing it wrong. Everyone can do what she does. It to the extent of the thumb showing up on the other side of the palm that matters.
@audreydoyle5268
@audreydoyle5268 3 жыл бұрын
@@Valiii Hmm, my thumb extends past my pinkie by a centimeter... interesting 🤔
@nodoboho
@nodoboho 3 жыл бұрын
Aryn Bruce Me, too...but no, actually. As Valiii says--"she's doing it wrong". Here's the *proper* demonstration of those two Marfan signifiers: www.researchgate.net/figure/Arachnodactyly-a-positive-thumb-sign-entire-thumbnail-protrudes-beyond-ulnar-border-of_fig3_6344644
@jenlawson4291
@jenlawson4291 4 жыл бұрын
As a fellow hEDS'er with Marfanoid Habitus, I almost fell out of my chair when you said you were allergic to Aloe!!!! Me too! It's one of those things no one believes. You did an amazing job with this video educating about the different types of disorders simply. I am so happy I found another person who is as "happy" and sarcastic about their lot in life and thanks for making me feel less alone. 💗
@shayelea
@shayelea 4 жыл бұрын
🌟 One thing right with me: I have naturally fantastic eyebrows. I know, I know, I shouldn’t brag. Well instead how about: my super long arms mean I can reach things on the high shelf rather than getting out the step stool. Also, you’ve made me really consider how I pull off toilet paper. Evidently I just grasp it in my fist and like, twist? 🤷🏻‍♀️
@BeyondTheGrave_
@BeyondTheGrave_ 4 жыл бұрын
I just got an ad for “Deaf Works Everywhere” and you were in it! It was an incredible ad and I watched it all the way through (:
@sophieh2902
@sophieh2902 4 жыл бұрын
Me too!
@EffyDaydream
@EffyDaydream 4 жыл бұрын
And me! 😊
@lucymumford6144
@lucymumford6144 4 жыл бұрын
Me too! X
@llamabean529
@llamabean529 4 жыл бұрын
Oh cool, is that why the as came up? KZfaq algorithm finally doing something right.
@BeyondTheGrave_
@BeyondTheGrave_ 4 жыл бұрын
Llama Bean I hope so, I was pleasantly surprised to see it :)
@MysticSybil
@MysticSybil 3 жыл бұрын
Its faintly surreal learning the ins and outs of modern medicine from a model from the 1940s (I mean this in the best possible way)
@babsrichards9099
@babsrichards9099 3 жыл бұрын
Hello lovely. So I have only started watching you this week. I have had so many symptoms since the age of 14 and could never get an answer for them. After listening to your stories it hit me like a ton of bricks. I immediately called my mother and my aunt. One has Fibrmyalgia and the other has Rheumatoid Arthritis and low and behold my cousin has EDS.... And I am going to my doctor soon to bring him my evidence and to see a specialist. Thank You so much!!!!! I can't explain how grateful I am that you've shared your story and will continue watching you lovely lady! You're spectacular.
@richardvelez3151
@richardvelez3151 4 жыл бұрын
TITLE: "What's Wrong with Me?" ME: "Wrong"... Absolutely Nothing! ⭐⭐⭐⭐⭐ Hello Jessica. Regarding the naming of the Rheumatology institute after your grandfather - I don't know about "irony", not meaning to be rude ... but maybe it was unwelcomed foreshadowing? Um, moving on ..... I find it incredibly generous and thoughtful of you to welcome those living with EDS to interact and communicate and share their experiences with their diagnoses. A comfortable, safe space for people to know they are not alone can only be beneficial. I for one always appreciate your openness and honesty regarding disabilities and the respect with which you show not only yourself, but this community you have built. One thing right with me ... 🤔 ... well, I was diagnosed Diabetic 2 years ago. After dietary and lifestyle changes, at my most recent appointment, I was confirmed to no longer be Diabetic. Yay! Thank you for the video, Jessica! I am so sorry about your arm and having to wear that wrist brace. On the positive, your sleepwear looked fabulous! Silver lining! ... haha 😅 A pleasure seeing you. Take care!! Lovely as always 👍🤟💝
@bessevaraven859
@bessevaraven859 4 жыл бұрын
You will always be diabetic but yours is under control. It doesn't just go away. It's going to be something that you have to watch and take care of for the rest of your life
@Taizu314
@Taizu314 4 жыл бұрын
In literature there are different kinds of irony. I guess this would be situational irony.
@911alice
@911alice 4 жыл бұрын
a good thing about my autism is that i'm always excited about stuff and never bored
@hs6596
@hs6596 4 жыл бұрын
Oddly encouraging to see people with lifelong chronic health issues still going through the diagnosis process! Like it's not just because I'm newly seeing doctors, it's just because doctors suck
@AuthorDiannaGunn
@AuthorDiannaGunn 4 жыл бұрын
So glad you found someone willing to do your microblading! The eyebrows look great :D PS Apparently I've been grabbing toilet paper wrong my whole life????
@jordandubie6769
@jordandubie6769 4 жыл бұрын
Right! I wonder if one of us Lovelies hooked her up with their services.
@SamarkandChan
@SamarkandChan 4 жыл бұрын
Was there people who wouldn't do it?
@karlijns4816
@karlijns4816 4 жыл бұрын
@@SamarkandChan If I remember correctly she couldn't get them done because the microblading people wanted a doctors note that it wouldn't be risky because of her disabilities. But her doctor refused to provide one.
@squeeerle
@squeeerle 4 жыл бұрын
I guess I've been grabbing it "wrong" too. Lol I use my thumb and my joint closest to the bottom of my finger.
@delicateghoul
@delicateghoul 4 жыл бұрын
I just snatch it like a heathen, haha
@dangelagregornik690
@dangelagregornik690 4 жыл бұрын
⭐️ when I smile, others will often smile back. A bit like a superpower
@KrystaiTheWatcher
@KrystaiTheWatcher 4 жыл бұрын
One of my close friends has EDS. She's 27 now, and when she was diagnosed at 11, she was told she would end up in a wheelchair, likely by the time she turned 40. Now, 16 years later, they've changed it to 30.... She dislocates everything. Literally everything. Jaw, vertebrae, fingers, toes, kneecaps, etc. As a child they just seemed to think she was a klutz, until they realized she wasn't after she simply rolled her ankle.... And dislocated it. I worry daily about her, but she's pretty acceptant of the fact she's going to end up in a wheelchair. She is currently finishing up her master's in gerontology (her second!) and is married to a neurologist. Those of you who have EDS, the day I met her after being online friends for a good two years, I was tackled outside of a coffee shop. You'll be okay. I promise. :)
@emmaeriksson7155
@emmaeriksson7155 3 жыл бұрын
This is such a good video! I have autism and struggles with a lot of stress related symptoms both on my body but also mind (like depressions, burned out for 3 years, stomach problems, bad sleep, anxiety etc) . It’s nice to see that a person you look up to can still make an functional life despite your disabilities! I’m 27 and haven’t had a real job yet but I’m gonna continue to fight to get a functional everyday. Thank you for a nice reminder!
@CatherineDupuis87
@CatherineDupuis87 4 жыл бұрын
⭐ One thing right about me: compensating for my flat feet my whole life means I have some pretty rocking calf muscles! Also thanks for calling those of us who deal with mental illness champions. I didn't know I needed that.
@loganmiller6603
@loganmiller6603 3 жыл бұрын
Calf muscles are v attractive!
@T.K.T
@T.K.T 3 жыл бұрын
Wish I had them, too...): (another flat footie)
@CatherineDupuis87
@CatherineDupuis87 3 жыл бұрын
@@T.K.T I mean, I also danced ballet for about 10 years, so that helped. (Huomasin nimesi, oletko suomalainen?)
@T.K.T
@T.K.T 3 жыл бұрын
Hyvin huomattu ^^'
@mmtruooao8377
@mmtruooao8377 4 жыл бұрын
⭐ one thing right with me: I persevered through the first two year of college into finding a path that's actually really interesting to me and pays well! In about a year and a few months I should be graduated with a degree in medical technology 😁 also I have a cute nose and cute hazel eyes
@ethanpoole3443
@ethanpoole3443 4 жыл бұрын
Good luck on your future career and for sticking with your education! And hazel eyes are, indeed, cute, but I may be biased! Unfortunately I was never able to complete my BS degree, though I did complete my AS, due to the my mental (Complex PTSD) and physical disabilities (nearly all of which were caused by abuse) getting in the way. I tried returning to university twice, but you kind of have to throw in the towel when your short term memory declines under stress to a point where one can no longer comprehend even a 5 or 6 word sentence because by the time I would read the last few words I would have forgotten all the prior words so the sentences would make no sense whatsoever .... I could have “Jack and Jill” or “ran up the hill” or “to fetch” or “a pail of water” but I could only have one of those at a time, and by the time I moved on I will have forgotten everything that came before! I always failed my final semesters because I could not remember to withdraw for long enough to actually make it to the registrar’s office to withdraw!
@MythicalHex
@MythicalHex 4 жыл бұрын
hazel eye gang woop woop!
@keetyalexx
@keetyalexx 4 жыл бұрын
My new psychiatrist told me she didn’t want to minimize my anxiety or my stomach issues and I honestly don’t even think my gastroenterologists have ever said that to me. I hate how much I’ve been told, essentially, that no one can do anything for my IBS. Sigh.
@Staynab
@Staynab 4 жыл бұрын
⭐️One thing that's right with me: I am working through my past of being manipulated by a childhood friend and my ex boyfriend and my bond with my sister has never been stronger!
@hajrapanhwar6027
@hajrapanhwar6027 4 жыл бұрын
I kinda want a t-shirt that says "Leave Jameela Jamil and her peanuts alone!" and then wear it around for solidarity. Would that be okay?
@nala3055
@nala3055 4 жыл бұрын
Same!! I was watching a video about her the other day and it was all in the comments... :(
@dexa6623
@dexa6623 4 жыл бұрын
You should totally try messaging Jameela about that.
@yeetleteetle
@yeetleteetle 3 жыл бұрын
As long as you don't try to sell it (copyright) you can feel free to make some for you and your friends!!
@Nursepractitionerd
@Nursepractitionerd 4 жыл бұрын
⭐️ I’ve finally been able to get my depression under control, which is especially important as I recently had a baby and my postpartum depression was horrible with my previous pregnancy. I’m proud of my neurotransmitters as they have finally figured out how to let me human properly, albeit with medication, but I’m totally ok with that.
@Konecochan
@Konecochan 4 жыл бұрын
Honestly it's always a comfort to see people with EDS talk about it. When I was diagnosed at 13 the "selfhelp" group was just 7 adults all saying they had it worse than the others, ignoring me and not actually acknowledging any way to help each other make life better. Now almost 15 years later seeing people take it in stride and talk more about it is giving me hope that other teenage girls won't feel as alone as I did when diagnosed
@katefriend4085
@katefriend4085 4 жыл бұрын
Just watched this w my 9- and 7-year olds. Had to pause it a few times to explain things: lesbians and cats! The similarities between having difficulties w the coating on the nerves and MS, which their grandma has! How often 20 migraines a month works out to be! When you got to the bit about being amazed by people w mental problems being the 'real heroes' I got a couple hugs, because my boys know about my depression and anxiety. They did start pretending to shoot each other towards the end, because 7 and 9. What I found interesting and important about watching this w them is how easily they accepted this laundry list of, difficulties shall we say, and just tried to imagine life with them without making any major assumptions about what a person could or couldn't do. I appreciate your making this video, and am glad I got to watch it w my boys. So thank you!
@nightingale2211
@nightingale2211 4 жыл бұрын
I have bipolar, anxiety and ocd and I never feel like I’m a champion, but thank you so much for making me feel a little better about me, Jessica. You are the real champion
@sevenandthelittlestmew
@sevenandthelittlestmew 4 жыл бұрын
🌟 when I was in the hospital, and one of my symptoms came up as “giddy”, I had to explain to my doctors that I was ALWAYS giddy. It’s not a symptom, It’s my nature! Note: they still consider it a symptom. In any case, I’d count this as one good thing about me. I think giddy is wonderful. Also, my ability to sew. I recently got a new sewing machine and it’s wonderful, because my old machine was hell on my arthritis. 🌟
@karibrigham1546
@karibrigham1546 4 жыл бұрын
*Gold Star*!! Your list of what is 'wrong' with you looks a lot like my list.I'm truly sorry about that. But I loved your idea of listing something that is *right*, so here goes. I love that I advocated for myself and got a power chair. I truly feel like I have my life back now, with some slight adjustments. So yay for my stubborn, willful streak. :)
@toranine09
@toranine09 4 жыл бұрын
I’m 20 and have been pushing for help since I was 16 when I started experiencing gynaecological issues. Over the years, either I’ve gotten better at noticing what “isn’t normal”, or my body is declining at a phenomenal rate (!) I’ve recently had the term “hypermobile” loosely slapped on me, and my spine has “age related wear and tear” (age related?! I’m 20!). I’ve forcibly had myself referred to rheumatology though, as the neurologist passed me to neurosurgeons, who immediately passed me to orthopaedics who referred me for physio.... Which did nothing because it was all behaviour I’ve automatically been doing for the last 10 years of my life. What’s one thing that’s good about me? 🌟 My resolve. I *will* keep going, despite what my body says, despite what the medical field says, and despite what society says! Jessica, if you see this: thank you so much. I hope one day i can meet you in person and truly express my gratitude.
@kadamowicz68
@kadamowicz68 4 жыл бұрын
I have six kids and still seem sane. ⭐️
@heatherdiers1857
@heatherdiers1857 3 жыл бұрын
That’s impressive. I haven’t been able to pass for sane since my second and now I have four.
@chaosphoenix6591
@chaosphoenix6591 4 жыл бұрын
🌟 I've got a lot wrong with me (thyroid issues, migraines, anemia, asthma sciatic pain,depression,anxiety etc...) but one thing that's right with me is that I'm pretty good at remaining positive when I need to! You are inspirational and amazing and such a lovely person! Thank you for everything you do! Also your wife is fantastic and your dogs are the cutest! Love you!
@zachsmith947
@zachsmith947 4 жыл бұрын
Okay... I think this video is going to save my life!!! My mom has had many digestive problems, stretchy skin in weird spots, ability to wrap limbs and joints in abnormal ways, random changing allergies, unexplained migraines, weird heart arrhythmia and blood pressure control, etc. etc. and in addition to all of this, I have severe amblyopia, and that illustration explains a lot. I also have super unbalanced hearing, and my jaw does the popping thing and my mouth is crowded, so... what do you think??? No explanation for any of this...
@lordoftheducks332
@lordoftheducks332 4 жыл бұрын
Zach Smith I’d definitely bring it up with a doctor if you have the ability to. Good luck!
@reybenesmisasi8017
@reybenesmisasi8017 3 жыл бұрын
🌟 something that's right with me: uh my ADHD makes me very good at connecting the most random stuff. I'm like that guy in that one buzzfeed unsolved meme going "I've connected the two dots" only I've actually connected them. So that's a plus.
@soleilmarshall8865
@soleilmarshall8865 4 жыл бұрын
I'm finally early !! Ehlers-Danlos zebra gang 💞🦓💕🦓 I love seeing other KZfaqrs i can relate to :') also i was one of those commenters saying "lmao it's probably EDS"
@Gettingbi
@Gettingbi 4 жыл бұрын
Im certain like 2 years ago commenting that I have a condition that shares a lot of the conditions haha turns out thats because we have the same one
@pinkseonghwa
@pinkseonghwa 4 жыл бұрын
anastasia marshall do you watch Simon and Martina? They’re a youtube couple mostly vlogging about food and Japan, and Martina also has EDS. Have some spoons and hearts from me 🥄🥄🥄❤️❤️❤️
@beebale1356
@beebale1356 4 жыл бұрын
🦓🦓🦓
@mousercat
@mousercat 4 жыл бұрын
⭐️what's right with me. I'm no longer afraid of wearing crop tops
@maidominguez1123
@maidominguez1123 4 жыл бұрын
thanks for making me feel valid Jessica. I don't know exactly how a migraine feels like... Hope you don't know how a Suicidal Crisis feels like. It's horrible. You just want to hug someone, but say "no. they have way more important stuff to do than care for you". It's really hard when you're Autistic, or have another disability (YES IT'S A DEVELOPMENTAL DISABILITY) that affects the way you process and give back information, because you call the hotline and they think "Oh, everyone is in the spectrum these days... It's just an excuse to be whiny and whimsical... I would hate to have a child like that!!"... And not just that, but they ask you about your IQ (which is a REALLY ABLEIST CONCEPT), your sensory nightmares, and even your loo habits. I've been fighting depression for 10 years. I hope someday... It will go away. But i'm losing hope.
@123TheGirl1233
@123TheGirl1233 4 жыл бұрын
I’m 16 and I’ve never in my life met anyone besides my mom & sister who have eds. My mom didn’t know she had it until she was in her 20’s and of course she passed it down to her kids. No one knows what it is and I barely know what it is! There are so many random symptoms to it and there isn’t as much research as we need for it, so I really don’t know exactly what things it does affect. I’m hyper mobile, deal with constant joint pain, have severe migraines, chronic fatigue, terrible stomach pain, and more random ones, also my fingers are also extremely bendy like yours. Mine also came with hyperhidrosis (basically just sweating way way too much) which is the most embarrassing part for me, bc the people around me like teenagers done get it. It sucks to deal with these things so it’s nice to hear someone else having the same struggles as me. Stay safe during this time please
@OuchMouse
@OuchMouse 4 жыл бұрын
EDS and the dodgy mast cells that come with it make me allergic to aloe vera too! And the cold. I've never felt so seen than when I watched this video. Also in the hearing loss gang too ♥ Accurate labels matter when it comes to what's 'wrong' with your body, so I'm glad you finally have this part figured out
@ChadSnider
@ChadSnider 4 жыл бұрын
I got my EDS diagnosis about 6 years ago. Welcome to the club! At least we have the silky smooth skin and looking young forever thing going for us, because most everything else sucks.
@DaisyByDesign
@DaisyByDesign 4 жыл бұрын
🌟 something right with me - I'm still here and I'm still trying
@eleanorwilson-pine1122
@eleanorwilson-pine1122 3 жыл бұрын
Finding you on youtube has been absolutely incredible. ❤ As a queer woman with hEDS, POTS and chronic migraines it brings me a lot of joy to see you and your little family thrive.
@beccitatefitzjohn7804
@beccitatefitzjohn7804 4 жыл бұрын
🌟 struggling to think of something good with me. My lungs work. That's good right?
@sandieM27
@sandieM27 4 жыл бұрын
always good :)
@shannovi4565
@shannovi4565 4 жыл бұрын
Currently have pneumonia and on Ventolin. Can confirm you have a good thing.
@Stethoscopewithstripes
@Stethoscopewithstripes 4 жыл бұрын
✨ I have Eds Fap and Hnpp, and I manage to get to medical school to become a rheumatologist for paediatric patients hopefully
@katierushworth5984
@katierushworth5984 4 жыл бұрын
All the best of luck!!!! I truly belive that having a professional that has what they know about helps. My sister has epilepsy and her epilepsy nurce also has it, so when they are talking about how it has effected her mental health there is a deeper understanding.
@carameldare
@carameldare 4 жыл бұрын
"A standing war with garlic" are you actually an immortal vampire
@camim7450
@camim7450 4 жыл бұрын
"They make a rainbow and they're fun!" Yes. Yes they are. Very cute, must buy for my meds!
@dicedragon6207
@dicedragon6207 4 жыл бұрын
A good thing about me is probably that despite having multiple mental disorders I absolutely refuse to let them run my life and try to get up every morning 🌟
@honigschnee
@honigschnee 4 жыл бұрын
For the toilet paper problem: I always rip it off using my four fingers pressing towards my thumb (if that explains it well... I don't know...) and I have yet to discover to have any connective tissue disorder. I'm just clumsy. :-D
@boldanabrasevic3020
@boldanabrasevic3020 4 жыл бұрын
Same. I just go in with all of my fingers
@honigschnee
@honigschnee 4 жыл бұрын
Clumsy people unite! :-D
@LifeLostSoul
@LifeLostSoul 4 жыл бұрын
I would like to say that using a bidet also helps in not having to rip tolit paper. Also can apparently reduce the rate of UTIs.
@LifeLostSoul
@LifeLostSoul 4 жыл бұрын
@@aerinandout or gotten just one piece of toilet paper but it's ripped in half...
@minktuckey9749
@minktuckey9749 3 жыл бұрын
⭐️ what’s right with me is that I’m happy in my own space, at my own speed and without pressure/demands from the world (probably down to autism...) - so I’ve weirdly benefitted from lockdown. I just am thankful for this.
@broken_rebirth
@broken_rebirth 3 жыл бұрын
I needed to hear that. I just came back to your video at "those who struggle with mental health are absolute champions in my eyes". You know, people think mental illness is only genetic, and that a pill will 'fix' you and that it shoudlnt' be a real disability. Yet you'd never know that straight A college student at uni struggles with it, or the lab tech that always impresses her bosses, or your elderly neighbor, etc etc. It's as crippling as any physical disability and you can only get as far as your mind will allow you. So thank you. *hugs*
@MarieAxelsson
@MarieAxelsson 4 жыл бұрын
What's right with me: 🌟 I finally got all my meds prescribed since moving to the UK, and I can now pick them up once a month because the magic of repeat prescriptions. Took some time to get on order and get used to because other issues, and just not being used to only getting meds for a month at the time even if you need them for life.. 🤷‍♀️
@introspectre
@introspectre 4 жыл бұрын
This is an actual life goal for me.
@kirithornalley6123
@kirithornalley6123 4 жыл бұрын
You're lucky you're allowed 28 days at a time. There was a point where I was on weekly prescriptions...
@beep8704
@beep8704 4 жыл бұрын
psst lemme tell you a secret: if you ask your GP they might let you do more months at once as well. i only pick up my meds once every two months :)
@MarieAxelsson
@MarieAxelsson 4 жыл бұрын
@@beep8704 once every two months is still a lot more frequent than I'm used to. I've lived with picking up my meds once every 3 months, and only renewing my prescription once a year. It's taking some settling into. I'm just glad I got it set up so I can take them all out at once, once a month.
@rainbowzebra1604
@rainbowzebra1604 4 жыл бұрын
I wish we had repeat prescriptions in Germany. I have to ride the bus around to pick up paper prescriptions from all my different doctors and bring them to the pharmacy every month.
@meltheissa
@meltheissa 4 жыл бұрын
🌟 Being a highly sensitive person 🌟 Processes life deeply, aware of subtleties, empathetic... Just comes with getting easily overwhelmed 🤷🏼‍♀️
@SaunterVaguelyDown
@SaunterVaguelyDown 3 жыл бұрын
I've diagnosed POTS, hypothyroidism (even though I'm skinny), raynauds syndrome & anxiety. And an undiagnosed (due to docs thinking I'm just anorexic & then losing my insurance) digestive issue. Was finally narrowing it down to maybe crohns or colitis when issuance ran out. Also have had insomnia and extremely low energy levels (even when I can sleep) for almost 20 yrs. Give me a few years and I'll try to come up with something right. 🤣
@teeveeee
@teeveeee 3 жыл бұрын
One thing right with me: I managed to escape from being a constantly emotionally distressed and bullied athlete who literally broke down every single game(almost always due to my teammates pushing all blame for lost onto me) to a happily manic artist, actor, and musician. Aka: becoming a band, chior, drama, and art kid saved my god damn heart- Aka aka: Dont force yourself to stay in things that make you miserable out of obligation kids, do what makes you happy
@MorganMcMorganstein
@MorganMcMorganstein 4 жыл бұрын
⭐️ One thing that's right with me is that I am, as my personal tutor once said, "unusually determined" and have kept going with life even through periods of bad mental health. I strongly suspect I have hEDS too, and even though my joints are wobbly my resolve is always rock-solid. Things are always gonna be a bit harder for me than they are for my peers, but that just means I'm going to end up stronger and more well-rounded! Side note: every time you tell us, the audience, that you're impressed/proud of us/etc., I get teary. You are one of my absolute favourite humans
@Mastinae
@Mastinae 4 жыл бұрын
🌟 Your hair is lovely indeed! Right with me is that my HRT is finally starting to show signs of working well which I'm super happy about!
@magnusg.6006
@magnusg.6006 4 жыл бұрын
I keep wondering if I have either EDS or Hypermobility Spectrum Disorder. I also didn't realise other people couldn't do the hand things you did in the video?? :'D My issues aren't as quite as severe and I am not hypermobile everywhere... just in most places. Also, that bit about mental health warmed my heart. You are a champion too
@ChrisDragon531
@ChrisDragon531 4 жыл бұрын
Thank you for the shout out to us Mentally Ill people! I suffer from ADHD, Anxiety, Depression, and Sensory issues. But even with my own illnesses, I'm still here! I also have some superpowers such as Hyper Focusing on things I'm interested in, telling the difference between color shades, knowing a lot of fascinating facts and information, and I have an awesome personality!
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