Whats wrong with me? // My Disabilities (Updated) [CC]
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- เผยแพร่เมื่อ 23 พ.ย. 2024
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I think your grandfather was a time traveler who saw your pain and decided to go back in time to try and help you
That's a beautiful way of looking at it.
This makes sense to me
BarneyFromBlack Mesa awwwww
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"
Headcannon accepted.
When you said that people who have mental health issues are champions in your eyes it generally brought tears to my eyes. Thank you.
Same. That made me feel stronger than I thought I was
didn't cry but I feel you. Felt the same.
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!
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. ⭐
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.
💫 One thing right with me.... I watered my indoor plants today, and fed my cats. I accomplished keeping others alive.
🙌🙌🙌
Woo!
❤
Wait a second her grandfather’s clinic, that was named after him got her disability wrong? That's ironic.
And slightly iconic.
I see what ya did there
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.
Reminds me of when my doctor told me that one of my kidneys is bigger than the other lol
😩😫😩
@@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
Thank you Jessica for acknowledging and pointing out that doctors don' t take teenage girls seriously when dealing with eating-related problems!
Lyall Lunice C-137 also everything else
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!
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!
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??
@@meaganwallwork5395 Wow! That's frustrating, honestly. The people who you come to for help not listening
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.
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. 💜
Games changed we need to deploy the snot curve as we're all going to be disabled 😂
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
omg re the third point, you need to listen to Seeds by Icon For Hire, i think you’ll LOVE IT
“they tried to bury us, they didn’t know we were SEEEEEEEEEEEEEEEDS”
Jessica: those of you who deal with mental health issues are absolute champions in my eyes
Me: *sobbing*
⭐ My autism makes me more conscious about helping others be comfortable since I'm hyper aware of every little thing going on.
I love that. 💖
❤ same here!
isn’t a symptom of autism spectrum disorder the inability to pick up on social cues?
@@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.
⭐️ 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.
I have ADHD too and I feel the same way!! We just fall in love with things really beautifully. :)
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.
Yes! Me too! I was walking to class today and I saw a blue bird and that got excited! 💙
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
🌟 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!!!!!!
🌟 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.
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.
Wonderful.
Same. ❤
Sometimes too deeply 💀
My autism helps me remember stuff I read years ago in great detail.
It also tends to make us very detail oriented, which also helps out a lot in many settings, careers, and hobbies.
Lord it makes my memory worse! 😂 I’m good at remembering other things though, so I suppose that’s something. 😝
I have Asperger but I don't think my memory is that great? Sometimes I wonder if I was misdiagnosed :(
@@user-bj7em4fv1p There's no rule saying we need to have all the quirks to qualify being autistic. I don't.
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.
🌟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!
Same but then I forget half of it once I lose interest lol
@@magicalplaid so depressingly relatable
I can do this too as a result of my OCD causing my brain to be built for obsession, hyper-focus, and hypervigilance.
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
Thanks for triggering my "let's read the comments and stop listening to Jessica" reflex... 😤 now I've got to rewind...
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!
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?
I’m a real heathen and just grab the loo roll with my whole hand
Right? I never thought of the right way to do it just what works
HPB me too
Same
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.
Hahaha same
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
Never related more
Same...
zosha Amelie I am glad to know I am not the only one
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!
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
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.
I do kind of wonder if it has anything to do with the fact that hEDS causes POTS and other issues with blood pressure.
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.
One thing right with me: One of my recent medical tests said that my gallbladder is unremarkable...so there's that.
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. :(
I love it when tests come back 'unremarkable' 🦓
Standard medical terminology, because it's more accurate than saying 'normal'
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 🌟
hell yeah, you go with that beautiful smile
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.
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
@@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.
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)
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.
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.
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.
@@introspectre please take all precautions for MCAD because it is now thought to be a huge part of our pots symptoms as well.
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.
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.
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.
i felt this so hard
i genuinely burst out into tears when she said that. I just felt so seen and happy :)
I relate to your comment so much.
I know them feels
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
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
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.
❤
One thing right with me: I have synesthesia, which allowed me to write a novel about a entirely unique superhero!
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!
wow now I have learnt something new today :)
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!
Ooh what kind?? Me too :)
What’s it called? (...if it’s been published)
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
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!
⭐️ when I smile, others will often smile back. A bit like a superpower
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!
⭐️ 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!
✨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.
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 👍🤟💝
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
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.
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 (:
Me too!
And me! 😊
Me too! X
Oh cool, is that why the as came up? TH-cam algorithm finally doing something right.
Llama Bean I hope so, I was pleasantly surprised to see it :)
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.🌟
You go, girl!
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)
⭐ one thing right with me is i remembered to take my meds and eat something
proud of you!
WHAT A MOOD
⭐️⭐️⭐️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
hearts
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:)
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.
'At least its interesting'
Oh mood. What mystery symptoms will I experience today? Nobody knows!
When you're accidentally living life in Hard mode, but the RNG keeps re-rolling what the effects are.
I feel you.
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.
@@BliffleSplick i keep getting very bad pulls. rngesus is cruel.
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!
Like let’s spin the wheel and see what’s wrong with my body todayyyyyy!
🌟 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? 🤷🏻♀️
wait, not everyone can touch their thumb to their pinkie?
...huh
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. :)
Apparently most people can't push their toes back 90+ degrees either.
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
My husband can't. He can hardly even move his hands in a paying position. His hands aren't streachy at all!!
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".
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.
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. 😬)
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...
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.
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
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!💕
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.
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.
@@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.
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????
Right! I wonder if one of us Lovelies hooked her up with their services.
Was there people who wouldn't do it?
@@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.
I guess I've been grabbing it "wrong" too. Lol I use my thumb and my joint closest to the bottom of my finger.
I just snatch it like a heathen, haha
⭐️ 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.
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
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.
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. 💗
I feel like i get sassier just from watching you. You indirectly inject me with sass.
⭐ 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
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!
hazel eye gang woop woop!
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
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
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.
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.
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!
Which vaccine did you take when you were 27?
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 🙄
🌟 Being a highly sensitive person 🌟
Processes life deeply, aware of subtleties, empathetic... Just comes with getting easily overwhelmed 🤷🏼♀️
🌟 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!
⭐️what's right with me. I'm no longer afraid of wearing crop tops
I have a slew of issues...ptsd...migraines...mini strokes...my blood pressure was doubling as a result of panic disorders and the only reason it didn’t kill me was because I have had this problem since I was 5 years old and my body built up a “tolerance”, lucky me. My kidneys have atrophied...I have scar tissue on my circle of Willis...had a tumor the size of my fist over my colon but it wasn’t found until my uterus was removed due to adenomyosis (again, lucky me). BUT...I have a dynamite sense of humor and an 11 year old that thinks I’m the bees knees...so WIN!! Thank you for helping me get through another day ❤️
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!
"might be having mini strokes" she casually mentioned
Ehhhh me tooo!🤷🏼♀️
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.
At 66 my MS diagnoses has been changed to EDS! Who knew?! Learning to walk on the treadmill is my favorite thing right now.
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 .
@@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?
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.
I have hypermobility.
The irony that you feel thankful your mental health is good. I as a mentally ill person always remind myself at least my body usually works (besides some fatigue and muscle tics from meds). Its a universal trait of the ill or disabled that we always think "oh it could be worse" about ourselves yet have total sympathy for others.
I have hEDS, diagnosed initially in 1993 when I was in 3rd grade. Problems with hearing, tmj, my guts forgetting how to gut and digest/move things, and sudden blood pressure drops when I stand... the fun list goes on, and it can be so ridiculous. I have food allergies that are a roulette - will wheat make me sick today with wheezing/hives? Who knows! I was diagnosed with Rapid Cycling Bipolar I in 1999 - and that has been a pain because doctors see the diagnoses and ASSUME I'm attention seeking because of the Bipolar. Yeah, no, medicated and stable. It's all my body trying to kill me. /rant
BUT! What's going well? I finished my 8th novel and am actually revising this one for sale, and that makes me SUPER proud of myself. :) 75,000 words is no joke, and I'm going to PUT IT OUT THERE. Terrifying.
🌟 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. 🌟
⭐ 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.
Calf muscles are v attractive!
Wish I had them, too...): (another flat footie)
@@T.K.T I mean, I also danced ballet for about 10 years, so that helped. (Huomasin nimesi, oletko suomalainen?)
Hyvin huomattu ^^'
✨ I have Eds Fap and Hnpp, and I manage to get to medical school to become a rheumatologist for paediatric patients hopefully
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.
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.
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
In literature there are different kinds of irony. I guess this would be situational irony.
🌟 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!
⭐️
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
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.
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.. 🤷♀️
This is an actual life goal for me.
You're lucky you're allowed 28 days at a time. There was a point where I was on weekly prescriptions...
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 :)
@@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.
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.
I am also a lesbian that doesn't like cats. You are welcome in my community and I accept you.
Why the cat hate?
⭐️ I’m self aware and working on becoming more what I want.
⭐️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!
*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. :)
⭐ One thing right with me...
I always try to find the good. Even when I'm feeling bad.
⭐⭐
Your optimism inspires me and keeps me going. You're truly amazing!
⭐️One thing that is right with me: I'm more aware of my low times with my depression, so I make an effort to still do something. Mostly making sure I still eat, because I also have poor memory and tend to forget to eat. Sometimes I would forget to eat for days.
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
It took me 5y of complaining an 3 doctors to get a Autoimmune and allergy panel done so I'm just happy you found doctors that actually listened and helped you
Good luck with the TP situation I feel that annoyance on a personal level
I just aspire to be you. I wish I had your optimism. You're such a happy person. I would love to be as optimistic as you! Stay Happy.
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 🌟
🌟 I can still hold my babies. That's what's going good with me
I have a wrist splint too! I don't have anything more than autism, some form of depression (which I don't know anymore because I haven't been rediagnosed for two years now but it was severe/major back then), psychotic symptoms and I have had different anxiety, mutism, eating and other symptoms too. The reason for the wrist splint is that I have problems with my joints because I will get rheumatism in the future, I'm sure (it runs in my family) and I have had too much ticks or OCD symptoms, whichever you want to specify them to be with my arms so my joints do hurt often. And I get migraines weekly specifically after meeting people. Still I'm living my life with my dog, studying in uni, living on my own and trying to do my best. Yey!
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!
⭐ I can make an amazing meal from scratch when I'm not in too much pain to move!
⭐ Something good about me is I can color my hair any color I want and it alway looks great on me. So I change the color about every 3 months. Its fun!
The one things that is right with me is that I smile the brightest when I am going through the most difficult times, so you being so positive and genuinely thankful for the things you have all the time inspires me to stay strong and keep bringing joy to others non-stop. Thank you for being such a sunshine
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*
Jessica’s amazing ability to put humour into a tough situation to make us informed AND feel better, along with all the wonderful comments and sharing everyone is leaving here…I feel a group hug coming on! 🤗❤️
Sometimes when asked "what's wrong with me?" My instinct is "what's RIGHT with me?" Because there are so many things "wrong" would me.
I wish there was a Love button instead of Like... I love your snarkiness Jessica!! So refreshing especially with the British accent; much love!
D it’s the nicest snark in the world, though, let’s be honest. I love it as well.
It feels like she should be called Victoria but yes she is fabulous
⭐️The OCD tendencies that come with my ADHD actually gave me some interesting coping mechanisms that keep my focus issues under control!
What is right with me? I have been taking my D-vitamins all winter and is not suffering from SAD as awfully this season. Yay.
"... 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????
I wonder, does the thumb thing have a name?
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.
@@Valiii Hmm, my thumb extends past my pinkie by a centimeter... interesting 🤔
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
🌟 struggling to think of something good with me. My lungs work. That's good right?
always good :)
Currently have pneumonia and on Ventolin. Can confirm you have a good thing.
⭐️ I am brilliant at immersing myself into stories as I’m reading. Usually.
Thank you for educating us. Both on this and history and everything else. My mum watched one of your history profile videos (can’t remember which one) and her reaction was “This is the History teacher everyone wish that they had”.