Comments that bother us...disability edition | ft
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- Опубліковано 3 чер 2024
- Disability/chronic illness-related comments that are well-intentioned but that really bother us! In this video, we react to some of these comments.
Check out the video we did on @ChronicallyJenni 's channel: • Am I The @sshole Chron...
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#chronicpain
#eds
#disability
the "don't let it stop you" thing to me feels like 'i'll only respect you as a disabled person if you don't struggle/ask for accommodations/are "productive" and aren't a "burden" to society'. its that idea that you have to jump through hoops to Prove to a capitalist society that you aren't "lazy" in order to simply EXIST as a disabled person.
I would rather "If you need help with your kind of awesome, just let me know"
When they say "But you don't look sick," the proper response to them is "But you don't look stupid."
Good one
I would rather "You look lovely today"
Mine is when my family tells me not to use my mobility aids "because I might become dependent on them" ....
Mine is “ Well you will get better soon.”
I would rather: "I hope you have a good day soon"
I have hEDS, but I've also had three cancers. As a cancer survivor, I am extremely offended and pissed off whenever people say that someone "lost their battle" with cancer. Firstly, it's usually not even the cancer itself that kills them, but rather a complication or secondary issue. Secondly, it completely cheapens each victorious day that the person fought on and lived. Thirdly, having cancer isn't some sort of game to win or lose, and referring to the deceased as the loser in the situation is completely offensive!
Screenshotting this
Wow, thank you. I have said that before, I guess because the people I know who have died of cancer DID really fight, they treated it like a battle… But I will definitely be more sensitive in the future. Thanks so much.
Eds with cancer here and I know exactly what you are talking about. The other day I was talking with my palliave care team about the something similar. People put a lot of pressure on cancer people with the "fight fight" and "just believe" speeches. Like seriously if I could fight my way out of stage four I would my dudes. But it just not that simple and to say cancer patients lost really underestimates their journey. Then there is the weird advice you get about how to beat it. I've heard eat nothing but spinach and chicken and drink only rice milk. Someone even recomended that I get a a small dog to hold all the time because it will suck the cancer out of me and die in my place. What do you even say to that.
I hate getting the "are you sure?" after telling someone a diagnosis.
That comment puts a 🔥 under my rear end every time I hear that. I always reply back with “Okay Nancy-know-it-all, please elaborate on how you know more than my team of physicians?” “Dr. Dolittle, what’s your formal diagnosis?” I know I could honestly be nicer, but sometimes I just don’t have it in me to be nice to rude and inconsiderate people.
I would rather "Gosh. Let me wrap my head around that for a sec." because when they say this, they are really feeling denial, because they don't want this bad thing to be happening to you (or, they are a ridiculous doctor, don't get me started on the doc who doubted my pending diagnosis after a quick google image search to see what EDS is! And then asked me "What does your husband think?" ...just minutes after he had said "But you look well" aaargh)
I've had trouble convincing my family to let me use mobility aids in the past because they were afraid of the connotation of disability. I completely agree people need to normalize the word.
i find it funny cause i’m seeing this comment today, i just talked to my mother about using wheelchairs so i can walk without being in pain. i honestly thought she was going to tell me i don’t need it but she didn’t! she was sad that i needed it but she just wants me to not be in as much pain so she’s okay with it
"Get better soon" " Your too young to be that sick" " you don't look sick" and my absolute biggest pet peeve. " its just because of your anxiety/ depression"
That depression one gets to me, the number of times a doc has asked me if I'm feeling stressed when I was looking for answers...I was 22 with a walking stick & no explanation & I got that one, just because a blood test ruled out rheumatoid factor. I said..."I'm not sick because I'm stressed, I'm stressed because my body is falling apart & you can't tell me why!!!!!" I would have rathered what I actually got years later from another (better) doctor: "I have no idea what is wrong with you, but I need you to know that I believe you, & we're not going to stop looking & testing until we figure this out" She was a Goddess.
Then they follow up with “you should try to exercise more” or some other self-help-y bs
Like, wow,it hadn’t occurred to me that physical exercise could help, let me go right out and run a mile and do a bunch of push ups right now!
@@YaGotdamBoiAs if, with weak muscles, migraine and fatigue due to POTS. Really if they say that again to me I'm saying well why don't we fix my dysautonomia first then I might have shot! What you are asking me to do is like climb Mt Everest without oxygen and with a nose clip on. Be prepared for a blank stare from "doctor" "physiotherapist" etc
yes the "it's cause of your anxiety" annoys me so fucking much, I had a year and a half being told "oh it's just your mental health" before we found out it was cause I had low vitamin D and it was so frustrating cause I know how my anxiety is
I hate the “how are you?”/“How do you feel?”- no matter if it’s family or a stranger it’s a bloody minefield... if you answer honestly it’s awkward and they don’t really wanna know and if you say Fine/ok/good it’s open season for either an insistence they really wanna know (they usually don’t) or they say something like “so glad you are getting/feeling better”. Drives me nuts.
Oh, I'm there with you on this one. If I say "fine' then I'm lying, & I hate lying, it feels icky. I would much rather "I hope you are well", or "I hope you're having a good day" Doesn't require any input from me, but makes their well wishes clear. I also like "If you want to tell me what living with your condition is like, I'd love to understand it better" I had a friend say that, it meant the world to me.
The one I despise the most is "how can you be tired? You haven't done anything today!". It usually comes from people close to me, and I need to remind them that I still have EDS and POTS even if I "seem alright"
my personal least favourite is definitely “get better soon!” i know they mean well but it hurts that i know i wont
@@crazycandi I’m saying this all the time😞 I try and hang out and I’m constantly having to reschedule or hold people back... constant breaks.
I would rather "Take care". Generic, positive, used for abled folk too.
@@crazycandi I would rather " I'd love to hang out some time, let me know when you're feeling up for it & I'm there with bells on" Especially if coupled with "What works best for you?... wanna just hang in our PJ's & watch a movie with crazy snacks?"
Person first language in the mental health community seems to be more popular with family members than those of us who are sick.
I was taught to use it during my teaching diploma....it was standard in Australian education 20 years ago. I guess I can see how as teachers, we were teaching the able kids to see past the disabilities of their peers, but it always felt weird & awkward to use. Of course, as English teachers the syntax & grammar of it was a challenge!
@@meganb4432 Yeah, person first language is too awkward in my opinion.
I got the "you're too young for that" yesterday when I was telling my fam about my herniated disk. Sorry, I'll tell my chronic pain to wait till I'm 50
Oh, thanks, I think I am cured now! I am too young and since I realised that, it just disappeared.🙃
That one is so annoying! It's as if they think that young people are immune to gunshot wounds, won't get hurt if a bus hits them in the street, and are completely invincible.
I had a hemorrhaged brain age 37, and was told, I am too young for it. People just are so privilleged, when they are healthy, that they associate being sick or chronically ill to the "really old people".
I would rather, honestly, "But you're so young! That must have been such a shock for you" Folks are always going to be surprised, but if it's at least tempered with words that show they believe me that would be so much better. I don't mind the young part, my young face is, frankly, the only perk this condition has given me...
The ' Oh I would kill myself if I had that' bothers me so much like actually what if your mind made you think that was OK
I've not had that...yikes. On behalf of a very shitty humanity, I'm sorry.
@@meganb4432 thanks, yeah it is not fun but it is probably because I go to a British secondary school tbh.
I think “Are you feeling better?” is one of those things that hits differently depending on who’s asking. If it’s someone else chronically ill/disabled who’s asking, I know they mean something closer to, “Is today any better than yesterday?” But if it’s a relatively healthy person, or a random acquaintance, I know they will assume that “better” means 100% better. They don’t understand that the nausea is almost allllways there, the dizziness is almost always there.
“Are you feeling better yet” 😩😩 no it’s not curable Karen
😐😐
Oh yes I get this one too 😩
All the time!!!!!!
I get this one all the time.
Mood
I got diagnosed with hEDS about a year and a half ago. Some people think I'm too young to be in any real pain and others just treat me like I'm fragile once they find out, I do not like it at all. Also when people ask me whats's up with my "gloves" when I'm wearing hand braces. I'm so sick of explaining it.
Same problem and I'm only 15
Also I have asthma, Cdh acid reflux
So
My life is dim but I keep trying
The best point I’ve heard in the debate between person-first (person with disability) and identity-first (disabled person) is the comparison to the way we describe other identities. We don’t say “person with blackness/whiteness/femaleness/youth” etc. We use adjectives to describe ourselves! It doesn’t make us not people! I respect those who prefer person first language but I personally, as a disabled person, don’t relate to it at all. Disabled isn’t a bad word. Use it!
think disability with a wide range of potential symptoms that may or may not be relevant, and may be one way or the opposite is not a very good way to describe me.
i'm white cause my skin look white.
and i haven't shaved my beard so it's not odd if people think i'm a guy
strongly dislikes when people insists that i must be one way cause disability, or can't be one way cause disability, or can/can't do one thing cause disability.
I agree! I’m disabled, I am AuDHD. That is how I interact with the world and that’s how I identify myself. BUT, that being said, I don’t care how anyone else identifies themselves. My only issues are with those who tell others how they need to identify
I've had people comment when I've parked in handicap spots or when I've stood up from my wheelchair. People need to learn that disabilities aren't all made from same mold. They come in so many different forms!
"you just need to -insert here Yoga. Sleep more. Magic cure of the day- and you'll feel better."
Thanks, Karen. Didn't realize my GENETIC conditions could be cured by your super food shake
Aaaargh, yes! I would rather they said "Is your condition something with symptoms that may be helped by_______? I would love it if your situation could be improved in some small way by this, I have info if you are ever interested, no pressure" Folks want to help, it's kind & natural, but they need to acknowledge that any improvement would probably be minor in a genetic, lifelong condition. I do want new ideas, new things to try, because some have helped a lot, but to assume that I have never heard of Yoga, Karen? Just, no.
Love that reply. Will add to my collection of retorts for stupid people.
"Oh you look so great!!"... Makes me die a little inside. Almost every time I hear that, I feel like utter death. If I have lovely rosy cheeks and shiny eyes and I'm wearing makeup, it's usually because I'm in intense pain and trying to mask so you don't realise I'm about to lose my lunch.
Had a friend tell me yesterday that they don't think I have cognitive issues and that I should just drive...like no? Thanks but I do, and if someone doesn't feel safe to drive don't try and force them? My worst ones are "you're too young for that", "you can't have more than one condition" (lmao as we know EDS is a buy one get 5 free kinda deal), and the worst was a family friend telling me that they 100% relate because their daughter has been sick for sooo long (she had a cold for 2 weeks). People genuinely have no clue, and it's so hard to not be mad. Most people just don't know what to say or are trying to help but wow do they get it wrong
I'm with you on the driving issue, folks get frustrated with me for not getting my licence, but I would honestly be a danger to all due to poor distance perception and brain fog. Driving shouldn't be a given, there are many out on the roads who shouldn't be. Driving is a complex skill like any other....not everyone is good at basketball, but at least folks don't die when someone misses a hoop.
I had my learners for 4 years because I just wasn’t ready. Even then, I shouldn’t have had my licence yet. I trust myself now after years of driving, but I need to be completely focused. I won’t drive after drinking even if I’m way under the legal limit. I try to avoid driving when I’m not feeling 100% because I don’t feel comfortable. I get a lot of pushback for both, but I don’t care.
@@melissastory1993I drive but not if my meds are messing with me or I can't move enough to safely navigate (neck or back etc).
I hear the comment, "but you are still able to work". Like that is my unit of value in western society. Knowing I will likely have to retire early, I have tried to find other ways to define my worth than how I earn my income.
One I get a lot is "That's cheating!" when random folk see that my tricycle has an electric motor, so I don't have to pedal. It's not cheating, it's my transport; my freedom & independence. My response is usually "Oh? So the car you drove here has a hole in the floor for your feet like Fred Flinstones'?" They usually look a bit abashed at that. I would rather they said "A motor? That's so cool"
I was diagnosed with hEDS when I was 34. I already had 4 sons.
I never shared my diagnosis with my family, although 2 members were there when I was diagnosed. Now years later when my illness is wreaking havoc on my body, the 2 members don't remember even being at the geneticist with me. When I'm flaring I hear from 2 of my own sons
"Oh there's nothing wrong with you, you're just OUT OF SHAPE or YOU JUST LET YOURSELF GO", I have also heard "Is it FATAL"? And doctors are the worst. I'm switching doctors because she thinks I'm a hypochondriac and I was diagnosed at Cornell in Manhattan by a well respected geneticist. I'm frustrated. Long Island has no EDS doctors, even the doctors who say that's their field do not know what they're talking about.
Sorry you're experiencing that. I can relate to a lot of that - especially from doctors, due to my hEDS diagnosis being delayed by a couple of decades because doctors were clueless and misinformed about EDS.
Definitely check out the Ehlers Danlos Society website for resources to print out for doctors and family, and they also have a doctor directory that might help you find a better doctor.
If your sons show symptoms later in life (there’s a 50/50 inheritance chance with EDS) I’m sure they’d start singing a different tune, even though I wouldn’t wish the condition on others just for a perspective shift. They should be sensitive of their own volition
That's fucking crazy. Gaslighting of the biggest type. I deal with some of that too, and you were right in telling them the less you can, they'll use anything you tell them against you.
Do a medical records request from that geneticist at Cornell in Manhattan. It shouldn't cost you anything, as long as you check the box on the records release form that it's for continuation of medical care. Get your full records from that facility, make extra copies to put in a binder for yourself so you always have copies, and bring another set of copies to merge into your main medical records in Long Island. You're running into the problem where your medical records at home and your medical records from Cornell are in two different database systems and aren't being shared. If your regular doctor thinks you're a hypochondriac, your Cornell records obviously are not available to your doctors at home. You really need to get your hands on your Cornell medical records to ensure that you receive proper medical care.
@Jessica Moorhead Part of it might be that they're lazy and haven't kept up with all of the new treatment options available and the major changes to the classifications and diagnostic criteria that happened in 2017. If you ever encounter a doctor who still refers to the EDS types by the obsolete numbered system, that doctor is definitely not an EDS expert.
That very first one! Ugh! "You don't LOOK sick!" is the one my mom used to be upset by. She had cancers, my dad had MS, and I have various health issues. People think they're complimenting you, but it makes you feel like you're not believed. Or that you have to look a certain way for others to be comfortable.
So tempting to hit them repeatedly with my cane when they say that! But then I'd hurt too.
u know which one I love . I love “what’s wrong with you?” That one makes me feel gr8
😫
I actually don't mind this one as much as the others; at least it is acknowledging my condition.
Even from a nurse. I'm tempted to say I can give you a 72p reference to read if you like? I've just put together refs and doctors letters for ER visits etc
So we’ll said. I hate when coworkers say, “I hope you get well soon.”
Yes! Saying “oh you’re so pretty you don’t look sick” like thanks for saying I’m pretty but you’re invalidating my very existence saying that the way I look has a direct connection to my health? And the whole inspiration thing-I want to inspire disabled people to fight for medical care and to fight against ableism, but as far as inspiring healthy people, the only inspiration they should get from me is motivation to change things, to make equality. I want to inspire equality, not inspire someone to climb mt Everest 😂
And person with disability vs disabled person, it’s like disabled pronouns. I feel like no one should tell someone else what they’re supposed to refer to themselves as. Personally, I am completely interchangeable with it bc I see it as words->linguistics->science->math rather than words->emotions, and that’s just bc of the way my brain is wired. Neither way is right or wrong, I just see it as person + adjective vs adjective + person, 1+2 vs 2+1, but I still completely respect when people prefer one or the other. It’s like she/her he/him and they/them. Any decent person doesn’t tell someone their pronouns, so why do people-especially able bodied people-think it’s ok to tell someone their disability descriptor identity. It’s such a basic, central, and fundamental part of our lives, it’s like if someone got mad at you saying “your name is Isabel how dare you call yourself Izzy what a disgrace to not go by your full legal name!” 😂 it’s just silly to not respect what people refer to themselves as. I hope some of that made sense, in short I’m completely agreeing with you 😄
perfectly put.
I went to the post office to change my car tax to disabled tax, the woman behind the counter asked if my car was automatic which I said yes, she said, well it would have to be. She then said so you're disabled are you? What's wrong with you?
Usually I would tell people to mind their own business but instead I decided to real off all of my disabilities and operations that I have had and I've had loads (I also have EDS) I made her feel so bad and she just kept saying I'm so sorry for you, take care etc.
“Oh you don’t need your wheelchair right?”
“Can’t we just “run into the store” real quick?”
“Can’t you leave your service dog/wheelchair/walker at home?”
“You’re ALWAYS sick, just deal with it.”
That why you want aids right?
Oh when people say " but you don't look sick" oh can you give your seat up for this elderly person" ah those both get me so mad. It's like no I can't get up from my seat and yes I'm sick I have chronic illnesses and I have cVEDS and pots and many other chronic conditions so yeah but I don't look sick? It's like Karen you can't see with what I'm struggling with.
I have such intense guilt when I take a seat in a public space. I'll always move if I see a struggling elderly person, but Karen and her hoard of kids can stand.
Mine, by far, is people who supposedly know me well and have known me for years and have actually listened to me talk about my CHRONIC, genetic, noncurable illnesses say “are you feeling better?” Or “are you feeling better YET?” Umm wow we really aren’t getting what chronic, genetic, and non-curable means. Thanks “friend.”
Honestly many people don't understand the word chronic. They just think it means bad or sick. Not ongoing. It's sad.
The thing that pisses me off is when people say they support you but the second you show any symptoms that aren't "cute" or "socially acceptable" they ditch you because you're "crazy" and "too much to handle." I'm autistic and people think it's "sO aDoRaBlE" when I talk about Greek mythology but the second I have symptoms that aren't "cute" like having meltdowns or s*lf-h*rm suddenly I'm "batshit crazy" and "a waste of life." Someone once called me an oxygen thief which I didn't mind because I can easily clap back and be like "nah b I'm the lightning thief 😊" but its so annoying. Basically they only support disabled people when they're palatable to them. Smh I have zero faith left in humanity
Oh my goodness! The 'don't let it stop you' thing!!!! YEEESSSS! Akin to the 'push through it' thing! If you actually think these are options, you have NO CLUE!! And there's really no way for one to get the clue, other than experience...🤦🏽♀️... So frustrating!
I'm having a particularly shit day today and I appreciate you ladies making videos about how people with disabilities feel despite what we look like. There's a giant stigma around invisible illnesses, if people could see how I feel they would never assume anything. They can't see it, so it must not exist. I wish. Anyway, thank you ladies 😘
Everyone always says "I don't know how you do it and cope every day" to me. I never voice it but my thoughts are always, well, I havent been given a choice... it's enjoy life with pain or hate life with pain; I choose to enjoy and see the best of things.
Horse face? What the heck?! You’re gorgeous! Both of you are gorgeous! 😊 I also hate the “inspirational” thing. I can’t tell you how many people have insinuated that it isn’t worth for me to go to graduate school or that I should look for “work from home”. When I hear that something normal that I do is “inspirational” what I hear in my head is that people don’t think that I’m capable of achieving more.
they are gorgeous :). i think the “inspirational” crap comes partly from all the media that show disabled people climbing kilimanjaro or running marathons, and not simply showing us as people who are doing our best at whatever we engage in. btw, i went to grad school, and became too disabled to work soon after, and always look back on that time of my life as fruitful, entirely more than worth it, and absolutely fantastic! so you go, girl!
I hate the “you’re too young for all that pain”.... like idk what to tell you? It’s not like I can return it 🙃
I hate comments like stay strong, you’re stronger than you think, you’ve got this & other comments like this.
Why should a person with an illness like Gastroparesis feel like they have to be strong all the time.
When someone says things like this to me it makes me feel like I can’t open up & express my feelings.
By the way, I feel that I am quite a “strong” person. I’m 62, single, don’t have children, live alone & have Gastroparesis. It’s very hard at my age to fit in anywhere in life.
By the way, it was great to hear from another Brit.
Omg yes everyone says stay strong or don’t worry you’ll get better with my GP but it’s like they ignore me when I say there’s no cure. I’m so tired of being strong and every bit of me is exhausted I’m only 15 but have had 18 tubes in 4 months and nobody understands
@@crash0602 I’m so sorry that you’re going through this. Just wanted to let you know that I’m thinking of you. x
@@julietannOsfan1972 aw thank you! That means so much!
It’s the “you’ll get better soon” after having a full blown conversation explaining EDS and them asking “is there a cure” or just being totally into learning about it. Like. Did we not just talk about it not being fixable? 😂 like yes thank you. My knee will def stop popping out of place soon
Ive. been called far worse, like faker and drug seeker. But disability does stop you from doing some things by definition. Brave inspiration irks me when you are just trying to overcome a disability issue with an aid
ignore the crap comments Izzy, at least you're trying to help people which is more than most can say. thanks for your time of day, blessed xx
I agree, I deal with POTS etc and I get rude comments in life, like you don't look sick or you don't look like you are in pain, so you can't be. It is unkind. I can relate to you both, thank you!
THANK YOU so much for making this! I have a weird thing to add about the "brave" thing - not that I think either of you were advocating against this, but just because I think it's worth adding:
I totally agree: living my life as a disabled person shouldn't be inspirational or brave in and of itself - it's just my life. But that said, I DO think it can be brave to "come out" as disabled, for example. To leave your house with a mobility aid for the first time, or first few times, and to own that identity and what it means... for some people, that's definitely doing The Hard Thing and opening yourself up to criticism and all sorts of these very types of mean comments. It can require real courage to do.
There are days in my disabled life that aren't just Tuesday - they're days when I'm doing The Hard Thing, opening up, and or asking for a certain type of help for the first time, and those days can be difficult.
Essentially I just wanted to add that because disabled people are people, we are also capable of doing brave, difficult, and even inspiring things - but doing them like nondisabled folks. :P The things we do that are brave are brave because they're hard or scary things to do, not because we're disabled in the first place!
I hope this makes sense. 😂This video is AWESOME and this is essentially my dream collab, so I'm over the moon this got released today!
I totally agree
I get that, I'm struggling with that now, myself.
Another great video!👍My pet hate of comments is senior people coming up to me and commenting about me using a stick "You're too young to use one of those. Wait until you get to my age and have my aches and pains!" My reply: "Erm....I already have had them...since childhood, and I'm 51 now!" And yes, non disabled 'disability advocates' definitely make me cringe! Take care ☺ 💜
I get that with my limp, now. Drives me nuts. I would rather just a wry look of comraderie.
20 years ago during a flare I used a stick for 8 months (I was 22) and folks just smiled at me all the time, it was weird. When folks asked me what happened, I took great delight in making up a different outrageous answer each time. At the time I had no idea what was happening to me, if it would get worse, if it would ever improve, I was so scared; & telling outlandish tales about it kind of made my day.
@@meganb4432I used a Walker for the first time a couple of weeks ago and was shocked at how many people 'gave way' or 'yielded' to me in the aisles. I was like you are faster than me please go first etc. very strange.
It’s because society measures your worth on how productive you are. 😑 “you don’t let it stop you” means “you’re not lazy”. Laziness is an obsession in the west, idk why. Society believes lazy people don’t deserve good treatment and the line between lazy and disabled is so so often blurred. “You’re still pretty” is also a form of productive. Beauty is productive in the west, because it makes you more like-able. These “compliments” are all about pulling people the perfect version of what a member of society *should* look like instead of letting the disabled choose what their best life looks like. I suppose I should say OUR. I get to define MY best life no matter my pain☺️
Hehe I laughed with being able to relate at "Izzy, you're hurting my jaw"
I was born with multiple genetic disabilities and I always hate the "you're so young/too young to be sick/disabled"
Well gee I guess I should've just told my disabilities I was young so they had to leave me alone till I was old!
Exactly what age is it acceptable for a person to be disabled/sick?
Oh my god, you really explain exactly my stance on the "person first vs. identity first" language debate! I hate it that people try to make either a rule! It really is just a characteristic. And "what about sentence structure!?" Yes. Yes. Yes. That's what bothers me too. How we choose to describe ourselves shouldn't be controversial! The fact that it is just highlights how much stigma still surounds disability.
Yes! Like unless someone who isn’t disabled is trying to decide for the disabled person, it should be up to the person who is describing themselves. I personally say I’m AuDHD or I’m autistic and ADHD, but if someone who also is says “I have ADHD/autism” I don’t care because that’s how they want to label themselves.
Asking me to show joint mobility range. I’ve learned to say “I don’t do party tricks”.
When people say " OH DON'T EXAGGERATE" 🥺
😤😳
It should be legally alowed to punch people who say that.
My mom: oh, come on. Get over it!😖😡
Yes I hate this one annoys me so much.
I just got diagnosed with hEDS (I fit the criteria at least), but we need to genetics for vEDS and cEDS but thank you Izzy for giving me the confidence to get checked out. I'll be checking out jenni's channel later.
I hope you're having a good day (:
Like I HATE when people tell me when I don't look sick. It's such a backhanded compliment. At least all us chronically ill babes feel the same way haha
Mine is being told that what I say I have doesnt make any sense so it can't be real or it's all in my head.
What do I gain from making this up? It's not cool or sexy, its just painful and annoying and you saying that is not helping!
🤦♀️
That's another one. "It's all in your head".
@@Victoria-xl6xw Check out the UA-cam video "All in Your Head - the Problem of Psychogenic Diagnosis for EDS" - it is so eye opening and life changing!
Oh one I get a lot,
Well if your legs work, why would you even use a wheelchair?
I hate when people ask me “How’re you doing today?”
“I’m exhausted. I’m in constant pain from head to toe and I’m barely hanging on. How’re you?😐
I know they don’t mean it like that. It’s common courtesies. I personally just don’t like it
I hate it, too, but I do it myself all the time! It's so ingrained as a socially appropriate greeting. I'm trying to remember to say "I hope you are well" or "I trust you are well" instead. My husband started saying that because he works in a grocery, & he just doesn't have time to listen to everyone's answers! Statement greetings are key. Of course, here in Australia we have the option of "g'day" but it feels super hokey so I'm not comfortable with it. I tend to go with a sprightly "Hello!" or "Hi!" instead.
I'm a chronic pain patient myself... I get many of the same type of comments. "You look so well!" On a bad pain day has me growling under my breath, gritting my teeth, and wishing I had just enough spoons to throttle them! Hahaha!
One thing I have to say, and this a pure heartfelt compliment, so don't get mad... you have the most beautiful ginger hair! :) it's always been my favorite.
I know most folks mean well, but sometimes they can feel as awkward saying something as we are hearing it.
I use a wheelchair and a service dog out in public, and my all time pet peeves are people who think my mind is as broken as my body and talk to me as if I were a young child and unable to understand a decent vocabulary! Grrrrrrrrrrr!
You ladies are beautiful inside and out! We're here anytime you need to vent! ::hugs!::
I wish I had enough spoons to throttle them! 😂😂😂 hahaha! Love it! 💜
The one that pisses me off the most is "But you look well!".... from my DOCTOR! Aaaarghhh!!!!!
I would rather they say "I can't tell by looking, so tell me what's going on with you" or, "Tell me what a typical day is like for you....ok, now tell me what a bad day is like."
People telling me “ I hope you get well soon “. I have a chronic illness, I am not going to get well soon. But I thank you anyway! And people saying that “
I don’t look sick “ I have a invisible illness, my sister has Fibromyalgia and my Dad has Diabetes but you can’t see them so what are we suppose to look like? I have EDS and Epilepsy, your NOT going to see them unless I am in such extreme pain and I have reached my breaking point or I am on the floor having a seizure and convulsing.
The average person really has no clue about disability. Sure they get it when they can see a disability, but when it's not painted with a bright yellow sign it's invisible. To most, if you can't see something then nothing is there. Most of my disabilities fall under this category with hEDS or HSD (no diagnosis still) being the only exception. I honestly don't know if i'm releaved it's bad enough that I use a Cane most of the time now or not. At least now the fact something is off can be seen, Yet in many ways it's the least serious issue I deal with. The Autism/ADHD/PTSD combo is far more disabling.
Just came across this now. Say it louder for the people in the back!! Anyways one comment that really pissed me off was when I was younger, my knee was dislocated and my youth group leader actually told me "Stop screaming this has happened before". Okay yes this has happened before but it doesn't mean that I'm not still in fucking pain. I also recently got a comment of "You're so strong" from aunt after my knee dislocated. Like what the fuck does that even mean?? I have also gotten the "Oh I wish I could sleep all day" comment from my dad after my car accident a few years ago, in which my back got screwed up and I was in severe pain and had nausea that forced me to lie down. I don't get why able-bodied people think they need to make a comment about our lives. I get they are trying to be nice but some of these comments we have heard a million times. News flash you aren't the first person to say that to us. Sorry for the semi-rant but it's frustrating. Can we stop invalidating other peoples fucking experiences.
Your too young to have any problems. That's the worst one for me
I love both of y’all’s channels! I decided to make a video piggy backing off of this one! ❤️ Chronic Illness and disability are so unique to the individual, it’s not for anyone else to judge.
6:22 omg yes!! Like whys that a thing?!!! Like jenni said you can be young and beautiful and etc and still be disabled or chronicallu ill
So many of these I've heard over the years. I look at you ladies and see all that you do and at first I'll be honest was thinking I wish I could do all that they do. Then I think back and realize that was a different part of my life when I was able to do more with these disabilities than I can now. I think that it depends on the person and how they normally react or treat you or if a stranger says something like one of these. I had a 77yr old vet say to me "you're too young and too pretty to need that." referring to me with my walker. I responded back with "well my disability didn't ask me my age when it decided to be." He was stunned but apologized telling me he didn't mean to offend me and I told him I'm not offended just stating a fact. First I'm not as young as he thought, he thought I'm 22 (which I get reg) and was shocked to hear that I've been dealing with this for all 45yrs of my life. We went on to have beautiful conversation and I thanked him for his service as he walked with me into the grocery store keeping an eye on me in that protective manner that was sweet. He was trying to understand and could see he'd try to help if I would've passed out while shopping. I find it's harder when either someone you know makes an off comment or in an internet post reply.
6:40 I think it is people who google EDS and see the physical facial characteristics of people with VEDS and wonder why YOU don't look like you don't have VEDS (because you don't, haha). Frankly, since being told I have a connective tissue disorder (waiting on genetic testing...) and having LOOKED at all of the physical and facial characteristics of people with various kinds of EDS, I find myself looking at my face and thinking, "dang-it I thought I just had some "don't age gene", now all I see is my huge eyes and ugly face". I was confused why my neurologist (had numbness in my arm before knowing anything about EDS), he would just be staring at my face all weird, now I know why... (he kept asking about my joint hyper-mobility, he was LOOKING for the facial characteristics of VEDS, but I am waiting on genetic testing...). Be happy you look normal, seriously.
Yeah, this is a tough one because there are 13 different types of EDS. I had a doctor question my diagnosis, simply because my skin wasn't stretchy enough. I had to explain that I have hEDS, and they were probably thinking of cEDS. It doesn't help that the famous EDS cases or case studies that get published in medical journals are the rarer and more exaggerated types. That makes doctors think that's how all EDS cases present.
@@Dulcimerist My thoughts exactly. Yep, my rheumatologist said "You should have really... stretchy skin...", Dx with a general connective Tissue disorder; although my joints have stretchy skin, my neck definitely hurts if I try to pull the skin, but that is probably why he just threw my case to a geneticist with an 8 month waiting list (which is probably better than someone who doesn't know a lot about EDS trying to Dx me), and I moved before I could get all the prerequisite testing done, so I hope my brand new doctor is open minded. I wonder if I act like I don't care if I get a Dx if they will then... care? So far, no one has gone through and tested me.
@@ImagesofJosephSmithJun. Find and print out the hypermobile type Ehlers Danlos syndrome diagnostic criteria from the Ehlers Danlos Society website. The criteria were updated in 2017 (along with all of the classifications and names of the various types), and many doctors are only familiar with the outdated criteria and use the obsolete numbered EDS type system. When I was fairly certain I had it, based on the new criteria, I just started to confidently tell all doctors and healthcare workers that I had a "suspected connective tissue disorder, most likely Ehlers Danlos syndrome." Doing this turned out to be very helpful, since I had a surgery a few months before I was diagnosed and the surgeon was able to take precautions so there wouldn't be any EDS complications such as popped stitches, IV blowouts, excessive bleeding, issues with anesthetics, etc. The sooner you get diagnosed, the better, as an EDS diagnosis absolutely needs to be in your medical records if you have it. The diagnosis in your medical records make the jobs of all of your doctors and healthcare workers easier and less risky, and protects your health and well-being.
"I don't know how you do it!" in referring to chronic pain and fatigue is a bit like the "you're really brave" to me... I don't have a choice is how I do it. But the one that bothers me the most is "don't you think you'd be less tired if you just worked more/moved more/exercised more?" As if I'm just deconditioned, which sometimes I am because I've had to rest due to surgery, but in these cases I also have health care professionals helping me getting back on my feet at the right pace. I don't need random people telling me I should jump back to what they consider "normal" and just get used to it.
11:22 I think that it would be worth doing a public test where you have someone who is disabled and someone who is not disabled go into public and start asking people who don't look disabled that same question and have them on hidden camera? I wonder how many people who are not disabled would like that same question asked to them and see how many reactions there would be? It would be an experiment that would be interesting? I know it sounds bad but maybe some people who do or have done this to people that they know are disabled may think twice and hopefully be more educated? One thing that I know as a disabled person is that I "LIVE" with my disability and it is part of my life. The thing is that when someone else tries to make themselves feel good by calling us "Special, An Inspiration, Brave" but they are only calling us that because we are disabled then they are not trying to "UNDERSTAND" where we come from and it is not that we are special to them because it is us that is special not the fact that we are disabled.
14:54 I prefer going by "DISABLED" because it is part of my life and I live it each and every day. You either love the whole part of me or none of me. That is how I look at it. I believe that it's important to find out how someone wants to be addressed and honor their wishes. Each disabled person is different.
15:07 We should ask the question to someone who is not disabled, "If you walked out your door in the morning but got hurt and ended up returning home in a wheelchair would you still want people to treat you differently, and before being disabled would you accept people calling you a person without disabilities before going out in the morning"?
16:56 Disabled is not a dirty word.
So here’s a story when I went into the grocery store someone saw me walking and I was having trouble because I was having painful day with my hip I have (heds) btw and they then random person: ” oh wants wrong with you your legs your walking funny, me: oh I have joint issues so that’s why having a bit of trouble walking have a nice day! Random person: “ are you ok so what’s wrong with you” me: “ oh I’m fine I have a Connective tissue disorder called EDS”. Random person: “ or so are you the kind of people who have there Aorta dissect or have bladder issues” “ well that is a risk for people with this condition and a thing and that some people have with EDS ”. Random person: “ oh well ok have a nice day”. Me: “have a nice day!” First off I walked away feeling weird and who would ask these random details to stranger like that and I feel like was just being used to answer there questions about disability. So it was definitely awkward and made me kind of weird. I do have bladder issues as well as many other issues with my organs because of HEDS but didn’t really wanna share all that.
Id say I don't want to discuss my medical issues with you and you are NOT entitled to ask. Good day.
For myself I prefer disabled person because people don't see that I am disabled.
I just got diagnosed with gastroparesis, EDS, and POTS all within 3 months. Your videos help me SO SO SO MUCH!!!!
I noticed you said your gastroparesis got a lot better, do you think you had post viral gastroparesis or that it just gets better with time?
Can I play peacemaker by suggesting that we reply to the awful examples we're all sharing ('cos people can be SO unintentionally awful!) with suggestions for alternatives that wouldn't piss us off or ruin our day? That way the folks who care enough about us to read these comments can come away with some practical alternatives, & maybe things will improve just a smidge. eg. "I would rather they said..."__________".
this video is so so so important and this topic needs to be shouted from the rooftops. i am so tired of people getting MAD at the disability advocacy movement claiming that it’s ‘nit picking’ because we get mad about people’s ‘compliments’. i wish people would understand that IT DOES NOT MATTER IF YOU DONT THINK WHAT YOU ARE DOING IS WRONG. IF SOMEONE IS UPSET OR OFFENDED THEN APOLOGIZING IS NECESSARY NO MATTER WHAT! (sorry for the all caps haha) it makes me so upset how many people say “well this shouldn’t bother you because i was trying to be nice” well okay it does bother me because your comment was actually inherently ableist. the language people use NEEDS to change and i love this video so much !!
Yeah, it's the same logic as sexual harassers saying..."I was just giving her a compliment, don't over-react". If you make someone uncomfortable, then it's good to learn a different way that doesn't cause discomfort. You know, if you're a decent person an' all.
Great video guys, thank you! xxxxxxxxxxxxx
I hate the fact these disease exist it is good to know I’m not alone.
Yeah i agree with th first one. Its like im sure its always done with kindness and they mean the best with it but they dont realize how messed up and how it can come across to us
totally!!
What I hate is people asking me how I'm disabled. If I want you to know, I'll tell you. It's natural to ask what I do for a living when trying to get to know me. But when I say I'm on disability, it's not really okay to ask me why. I know they are often just asking a follow-up get to know me question. But it feels like a explain yourself because I don't believe you question.
I don't much like the what do you do? question anyway. I would rather "So, what rocks your world?" or, "What are you passionate about?" It tells you so much more about a person than where they clock in for a paycheck. If the thing they are passionate about is their job, then fine, but I'd much rather hear about their whisky collection than their shitty boss. Plus, many folks with no job, or low status jobs, or jobs they hate or are ashamed of (property developers, I'm looking at you!) are just made to feel less-than by that question being used to define them.
@@meganb4432 Good point.
16:40 i totally get that! Its like me with the argument of if you should say disability or differently abled etc. To me disability/disabled isnt a bad word. I personally dont get why some people act like it is
So, what DOES sick look like, lol?
I have JAG-A, and having EDS people tend to not get what having a chronic illness really means so my worse comments are usually around are you better? Like no… I have a genetic mutation…. I can’t just rewrite my dna…..
I had to ride the bus the other day for the first time because I lost my car due to work not letting me back when I had complications of my pots when I contracted Covid a few months ago. Literally this past Friday I had no way to my appointment so I had to walk two hours to get there and they happen to have a bus pass for me to get home Someone on the bus commented about how well The driver was doing on tight corners I joked and said i wouldn’t have made it so nice I’m a rough driver I’m told he asked if that’s why I was on the bus I said no I have heart issues that made me go on leave from work and lost my car he then said I looked healthy for having heart issues and they didn’t think I really had it I said well you know the thing with the heart is that it’s inside the body so you can’t tell that someone has a heart issue just from looking at them everyone on the bus just stared at me like I was just so rude and inconsiderate and like it was rude for you to make that comment in the first place I hate it so much that night I was so sick from having to walk to my appointment I had to lay down multiple times for the preceding 2-3 days that followed because my body was so sore and hurt head to toe so badly and my heart could not function well even sitting made my heart over 100 resting rate and any time I stood up my heart went above 140.
Im sorry you had to go through that. I would have probably said similar. I would have been just as sore (no way I could walk for 2 hours atm, in in a flare) and understand. I hope you are able to gat another car. I know this is way after you commented but I wanted you to know. 💜
OMG! I follow her on Instagram!
I 100% agree with you about the term person with disabilities. Loved this video❤️
Horse face= an incredible, emotionally intelligent and kind creature...I would love to be a horse face hehehe.
If you put person first language into different characteristics it shows how off putting it is. Person who is a woman, person who is of Chinese origin, person who is gay.
so many beautiful women with EDS on UA-cam
I have it when it's "you don't look disabled and you're not in a wheel chair'
It's so mean and hurtful I'm 15 with EDS and go to the disabled bathrooms for personal space (coz I have s large scar on my stomach from CDH) and better privacy but I always say
Not every disability is visable
And since I've been through so much through my life with CDH, asthma ect I have it though when people say on a piano video of a really hard song to do and by go get a girl put someflashing lights infron of them an lethem have a seizure, wife I had seen my dad have a stroke, bleed on the brains dn multiple seizures a day my immediate through was you foul person how could you say something so DISGUSTING of you to a child and adult who experience this constantly at their reaction is, it was a joke chill. My thoughts were still FOUL though.
So technically speaking medical conditions run in my family but it's HORRIBLE to get such comments about somethi I've seen to family/friends or myself and it's honestly makes me cry.
I have HEDS too and prefer disabled bathroom because of compression garments wrestling and braces. Now in Westfield Qld they are for everyone so no stigma about invisibly disabled people using them. I've been abused by person in wheelchair for using it though.
I love ❤️ you both!!🦓🦓😘😘
7:35 dont pay attention to that person... theyre obviously a troll account cuz their username is "AL's triple chin" AL as in amberlynn reid it looks like so yeah. They just like trolling and stuff
I understand your annoyance at ignorant comments, but it's probably better for your mental health not to over think these things. It's definitely a type of microaggression, and I agree, but I'm sure most of these people probably mean well and they just need to be educated as I'm sure they don't want to be rude or unkind.
Absolutely. Except for doctors...they should be held to a higher standard because they should know better.
I have never heard of advocating for grammar. I am disabled but I am fine being called differently abled as I do call myself this. Yeah I am a person but I have been this way and very aware of I since childhood. (I can be a grammar nazi too.) As long as they don’t call me a liar... then they will get an earful.
7:35 I'd just block people who say stuff like that and be done with them.
8:06 May he continue to show himself worthy of you.
8:22 I couldn't hope to agree more.
9:20 It feels to me like you're over-analyzing this. I would like to say that I disagree with your apparent point that there's no such thing as letting a disability stop you. There is such a thing as learned helplessness.
14:10 I'm good either way. For me, it's all about the intention with which something is said.
16:45 I do agree with you there.
18:24 What did you say here?
18:53 Don't you mean "*you* do you"?
15:56 has quite a few typos, just a heads up
The opposite of person-first is generally called "identity-first", FYI :)