What not to say to a chronically ill person... [CC]
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- Опубліковано 27 лют 2020
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Thanks for watching, lovely people! have you been told any of these before? x
This is so far off but the only thing that happens to me is that children in my school think that I have a girlfriend but I don't so they just tease me with every girls name I talk to
My favourite one (and by favourite I mean makesmewanttopunchmyfacethroughawindow) is "if you just got a job youd feel so much better!". Um. No. Definitely tried that. My inability to work to a schedule began when I was taken out of school when I was 14 years old BUT THANKS FOR THAT REVOLUTIONARY THOUGHT! *breathes*
Yep all the time especially the meds one as I currently take 105 tablets a week sometimes more as some of my meds are only for certain times and I was refilling my med pots while talking to someone and they told me my issue was all the meds I took and I was like no when I don’t I literally go in and out of Consciousness and have seizures
Also "Have you tried drinking water?" When talking about anxiety and PTSD flashbacks
No, I have never been told any of these things. Nor have I ever said any of these things to another person. I never quite understood why someone would go out of the way to be dismissive or offputting ( good intentioned or not ) when just listening and being respectful is so much simpler, and far more beneficial.
Someone told my visually impaired friend recently that she “didn’t look blind”...and she replied, “well, I wouldn’t know.” 😂😂 seriously, why are people like this!!
Yo someone said that to me recently when I let him know that I couldn't see so he understood why I wasn't responding to his silent gestures and facial expressions. And he was like "oh I couldn't tell! You look perfectly fine." Like thanks, that's not why I told you that. But okay. And then I said "that's good I guess" because I didn't know how to respond. My phone is my lifeline rn. But also not bc I'm relying on my left eye since I have to hold it really close to my face, so close that only one eye can look at the phone at a time. But also probably because my right eye is even worse than my left and there's no distance which I can rely on to see.
Glorious comeback tho
BEANS! This sounds really similar to my son , who has some vision and has to look at his phone right up to his nose . When people are told he’s registered blind , they say “ He’s not really blind though , he can move around and read his phone . It really annoys me , I have to explain ( in a calm voice ! ) There’s only a small percentage of blind people , who can’t see anything at all . Before I had my son , I may have been the same . It’s a lack of knowledge usually , not anything personal or rude .
As the most tactless person in the world, I admit I’ve said the most awful things. Please ascribe it to ADD, ADHD or Aspergers. Sometimes I don’t know what I’m going to say before I say it. And I’m as mortified as you are annoyed.
Suzanne Berry no, you’re good. Aspergers solidarity. No, this person was just a privileged old white woman with no tact.
"But you're so YOUNG!"
I'm sorry to have to be the one to break this to you dude, but people can become ill, and in fact, *die* at any age, even before they are actually birthed.
Colette Lee this one is even worse when you have a disease/illness that people usually associate with older people ie arthritis Crohn’s disease etc.
I get the "you're too young" one all the time....especially since I LOOK 10 years younger than I am.
@@AmandaKunz97 Gotta love when you can see someone's mind being blown, as if you had personally decided to shatter their oblivious worldview by actuating an incongruous illness!
Just answer: "Would you also say that to a child with cancer?"
Should shut them right up.
@@CarritaJ I've had people say, "You're so young, you don't need to worry!" Like, yes...yes you're so right, how could trying to find out how to take care of my body help anyone?
Honestly its only a matter of time until Jessica takes the stage for her TED talk
I would love for Jessica to make a TED talk, with all her sass ;)
Ker-ching! People get paid for that, right?
@@tigerbread78 yep they 100% do. No way anyone would do it for free unless they really want to
Luis Torres I look forward to it!
I think we'd all watch the shit out of that :D. It'd be awesome.
One I always get is "you don't look autistic". Well what does autism look like then? Because I'm autistic and I look pretty good if I do say so myself
Strangest Vintage for freaking real, I’m quirky and struggle with ‘weird’ specific things more, but I’m not any more different than that, I really struggle with the ‘youre autistic’ meme that just means that the whole lot of us is idiots
AMEN SISTER! I hear that a lot working with autistic ppl in my workplace and it just boils my blood
Sarah Hamilfan Do you know if it’s available in English?
YES! I am autistic and literally today I had the receptionist at the audiology (yay hyperacusis) clinic they I look "too normal to be autistic". Like what?
Neira Rosenbaum Yooo SPD, ADHD, and anxiety to top it off. If I had a dime for every time someone said “everyone gets a little distracted sometimes”. Check yourself Harold, I’m not “a little distracted”, I have a neurological condition that makes it physically difficult to even start a task, let alone finish it. Ooh, my favorite is “you’re making too big a deal, it’s just _thing_” Oh no? I’m crying because of the smell of hand sanitizer? Well, Karen, you saved the fucking day by using your magical abilities to look into my brain through my skull and decide that no, its not a big deal! I can’t thank you enough, peach.
(Sorry for the rant lmao)
“Because I tick a lot of boxes” is a permanent mood as someone who is bisexual, has DID, ADHD, PTSD, and is also a Canadian. Because people just don’t understand milk bags but they’re so much better than cartons guys y’all are missing out
George Robins bagged milk is the best! 😂
I get it man, wishing you the best
Neira Rosenbaum
Yoooooo amazing
Is it me or does, "milk bags," sounds like an insulte you would hear a human called on a SciFi property.
Hey I have ADHD too and I’m also a lesbian YASSSS! ☺️💁🏼♀️💁🏼♀️
“IT COULD BE WORSE” I HATE PEOPLE THAT SAY THAT
I’m a fan of the phrase “Just because one person is up to their neck in crap, doesn’t mean the stuff around mine is chocolate pudding.”
Exactly. Like when people say 'but there are starving children in Africa'. Yes Karen there are. But me stopping all my medication and exercises and becoming a huge financial burden on the healthcare system won't help that will it?
w8 till you meet those who try to prove they've got it worse no matter the situation
@@saraquill Thank you so much for sharing this sentence with me! It's hilarious and accurate at the same time. ❤️
I remember how a friend of mine told me that when I talked to him about another friend who had recently had her pelvis broken in a car accident and her boyfriend died in the same accident. And he said: "Well, it could have been worse, they didn't have any children." And I couldn't even respond to that.
I will remember this sentence and I'll use it the next time! ❤️ (Edit: Of course, it was a car and not cafe accident...)
Yeah, they say it and I just want to cry, "you think I don't know that!? You think I don't live in fear for how I'll cope when something new lands on my already teetering shit pile! As it has in the past and inevitably will again. We all know it could be worse. This is news to no one so hush." Sadly... im not that kind of person. Sadly I only ever try to be understanding and reasonable with those people.... *sigh* at least sometimes it works.
I live in Texas, so I constantly get "Have you tried yoga?" And "I'll pray for you" and "Let Jesus heal you, child". I once had a prayer circle started around me randomly downtown and I was like "uhh... Thanks"
Hazel Grey oh you poor thing, that happened to me too, but in Nashville TN....I hope you aren’t in a lot of pain, and I’m sending hugs. I have lupus and am in organ failure, I get a lot of fluff said to me 🧐😩
I know it was well intentioned, but it wasn’t asked for, and how exactly are you supposed to get anything done if prayers circles are constantly being held around you throughout your day.
Oh, the Bible Belt!
Is Texas really conservative? I’ve never been there
Same. I’m in Dallas. 🙄
WHAT NOT TO SAY: "Oh, I get that too."
JESSICA: "No! No you don't."
ME: You're right, I don't. That's why I truly appreciate this series. Because I don't know, but I am willing to learn.
Thank you for another exceptional entry in this series, Jessica. As always it was educational, informative, and welcomed. Such a fantastic teaching resource. Again, thank you! Take care!
Lovely as always 👍🤟💝
What people could also mean by „I get that too“ is: Hey, don’t feel excluded, you are like we are, we don’t feel superior only because we are mainly healthy...
It might not be helpful, but is possibly what they want to say.
@@zahnpastacremetube Very true! Thanks for bringing that to my attention 👍😊
Same here
zahnpastacremetube in my experience asking people directly what they mean, this is never what they mean. you really are giving too much credit.
@@OmqSparklez It really does matter to whom you are speaking. Responses can and will vary. All comes down to the individual. I am okay with this, as long as everyone remains polite and respectful 👍😊
"you could do it yesterday" was basically my disability insurance's second reason for denying me. Thanks for this video!
That's why im resused a handicapped parking sticker, ya know forget that cuz my toes don't move at all on my left foot and my ankle only moves when my knee does i trip a ton but because when they tested me i happened to walk A ok I'm not allowed a sticker next day tripped over rug fell flat on my face.
Hey! So, my insurance company has denied me MANY times, but fighting them back has almost always resulted in them giving in. I know, I know, it’s absolutely shitty that we even have to fight back. But it’s often the only way we can receive the life-saving help needed. Ask your doctors to email your insurance and argue with them. If you have the time/mental space, consider writing your own email. My dad wrote a 13 page letter to my insurance company when I was a baby and they refused to pay for a surgery that I would have died without. He included references to medical papers and did research on exactly what my condition is. At the end of his letter, he requested that, should our request be denied, to tell him exactly which reference they objected to. To this day, my dad feels that last line was crucial to getting the money needed, since there were too many references for the company to read entirely.
@@annelise780 that is good advice, however disability insurance is a bit different than regular insurance. I have appealed as many times as I could, as thoroughly as I could on my own. My advice to anyone else: hire a disability lawyer.
Oh yeah, I've heard most of these. One time in a disabled parking spot, an elderly gentleman told me I didn't look disabled to park there. I told him he didn't look like an a$$hole either, but here we are!
Love it. I am so glad that you didn't internalise his comment, but confronted his ignorance. I normally abhor swearing, but I have found that [after 51 years of living with Spina bifida] sometimes swearing 'jolts' people out of their mindset. Cheers, Alison Barker.
"Oh yes I can be forgetful sometimes as well"
"I CAN'T REMEMBER CHUNKS OF MY OWN LIFE LINDA"
🤣🤣 I feel that one. Can remember almost nothing about my life pre-16. My family can't comprehend how I simply can't recall holidays or gatherings we've had. Never happened, as far as I'm concerned. Just have to sit and listen as they tell me the story of my life 🤦♀️
I get this all the time with my Grandmother's friends. Actually, not just the forgetfulness but all my issues. They say "of yes I" then I remind them they are in their 60s, 70s, and 80s while Im dealing with it in my 20s. Its one thing if they cant remember most of their childhood, important names/dates, and so on.... but they weren't that long ago for me. I don't have the excuse of several decades plus blurring out the details. And yes, it sucks that your tired and dont have the energy to do things, but I was already dealing with that ten years ago when you were still running around with energy to spare. And so on.
Then, there is the even worse thing they do. They hear about my problems. They laugh. Then they tell me "just wait until your my age." And i just want to cry or scream cause, One, they are acting like there old age symptoms they are only just coming into and resent since they have been able and healthy for most of their lives (they are a surprisingly healthy lot) are worse then my chronic illness that i have been dealing with for so much of my life i cant remember what healthy feels like, and Two, yes, I have thought of how much worse my life will be when aging is added into and on to my current issues. I actually worry about it regularly though but, Id somehow managed not to think about it since last night and now I will stress as is my lot in life 😡
Sorry... that got away on me there.
I really understand this one
I get this one as well. I cannot remember most of my life age 10-15. We don’t know why, but we think it was my brain protecting itself the trauma of my severe depression.
yep, there's very little I can properly remember before the age of 16/17
'Oh I get that too' isn't just insensitive but makes me imposter syndrome GO WILD
This is a mood
Exactly! If you can actually relate, great, please do! But I don't really care that you're tired because you decided to stay up online all night because then I think "well maybe I shouldn't have done that one thing last week. This is my fault" or "Maybe this is normal" and this rings especially true while in the diagnosis process.
@@normalpeopleboreme literally me comparing myself to my friends who got 4 hours of sleep when I got 9 and they were still functioning better than me... I eventually realised something might be wrong....
One of my friends says 'that sounds awful' instead of trying to relate and I swear it gives me life.
I've literally had doctors shake their heads at how many meds I'm on....and add another by the end of the appointment.
I feel the, “I wish I could take naps everyday” one. Like yes, and I wish I could stay awake all day without my body shutting down from the inside out and causing immense brain fog, fatigue, and excruciating pain. I hate taking one to three naps a day. Do you know how much easier college and life would be if I could just stay awake all day and only sleep at night?
Naiza L lol funnily enough they tell me about wanting naps, and I say "yeah Id like them too" and they are so confused. Everyone just assumes I must nap all the time. Completely ignoring I have sleep issues that mean falling asleep is hard. I cant nap. I dont nap. Im awake and in pain, wishing I could sleep through it. That explanation usually shuts the "i wish i could live like you" comments up. Sadly it also usually starts them in on all the insomnia cures they have heard.
When you try being frank like, "Really, cause I hate having to nap" do you get a similar thing where they go on to the next annoying thing to say? If this is the case Im sorry. Even if it isnt I'm still sorry you hear it at all. Just know, as someone who wishes to nap, it doesn't stop me from sympathizing with you over having to. Would that I could I would make it so we just lived our lives, feeling well, and napping only if and when we felt like it. But I cant. Sadly all I can say is i feel your grief and I wish you the best both in your life, health, and the people you have to deal with.
Naiza L I hate taking naps too. I also struggle with just how much I have to do generally just to manage everything (I have ME/CFS) - I do gentle yoga, meditation, watch my diet, take naps, plus exercises to correct my posture because if I don’t I get headaches everyday and Carpal tunnel and cubical tunnel in both arms... some days I feel all I do is manage my symptoms!
"I wish I could function WITHOUT needing to give in and go to bed before my 12 year old, but we can't always get what we want now can we???"
@@kelly1827 I know what you mean. I have fibromyalgia and lately suffered extreme fatigue/exhaustion and explained to people that I am not making a conscious decision that I feel tired, no. My body ached and screamed to be put to bed, I had no choice but to obey or fall where I stood.
Yes! The nap in the middle of the day and most part of the night awake
“Just push yourself through that wall!” ASDFGHJKL IM CACKLING
"But you don't look sick." Shall I tell you how many times my illness has nearly killed me? Because that'd be countless times.
**reading this in Jessica's sarcastic voice**
Sorry for what will probably be over sharing. This vid triggered stuff for me and its all stirred up now looking for an escape.
Best I ever got was "you don't look sick" while I dealt with a migraine that had me throwing up an hour or so before. It was from my mom, though in her defense she hadn't known about the throwing up. She just felt I needed to get out of the house (cause it makes you better don't you know?) and so was pushing me not to stay home. Thankfully once at the party I found a darker room and a friend rubbed my neck so it wasn't too much worse then being home.... the traveling though was awful as was all the talking going on around us.
She did it me other times too because the school wasnt happy with me missing so many days so she was trying to comfort herself about sne ding me despite my asking to stay home by thinking it was okay that she was sending me cause if I didnt look sick it couldn't be too bad. She could shove meds down my throat and it would all be fine right? Then one day she got a migraine and decided to help herself to one of my meds. She was useless for most of the day from side effects plus still having the migraine cause it was for pain not getting rid of the source of that pain. That night she cried to me about how she sent me to school on that stuff cause she'd finally seen for herself a bit of what that was actually like... didn't not stop her from still doing it though when the school proved not willing to help cause she really didnt have other options available (only now she felt awful about it). Turns out the school was only interested in helping if I was failing my classes and since I was working my ass of to get by, they were fine with things staying how they were. And how they were was teachers not letting me go get my meds during there class because theirs was too important go after. How it was, was teachers not having notes available from sick days saying I should get them from another student... while not forcing those student to actually do that so theyd tell me no and i had to do without. Fluorescent lighting. Loud noises. No sleep most days. Shit kids. And so much more!
I loved my mom and she loved me but perfect she was not. The school was much farther from perfect, i was just one of many to most everyone there, and I've got no love for them.
"Because you can do this sometimes" was basically why I got denied social security benefits.
(That thing in question was reading books, writing, and playing games on the computer. The judge said it was because I had the ability to concentrate, so it meant I wasn't disabled severely by my disabilities.)
Yep, let someone else decide how ill someone else is.
The Dr THEY hired told judge there was ZERO jobs in all of the USA I could do and guess what still denied! So I feel your frustration with our wonderful government
I wish I could help you on that one, as in the UK we have very strict rules about that. While the department for work and pensions is likely to try and walk all over you, you can then appeal and most of those are upheld.
The rule about it in the UK is that anything you can do you have to be able to do consistently, safely, repeatedly, and to an acceptable standard. So if you can walk but only sometimes, you can't walk far, are at risk of falling over, and won't be able to do so again for a while, then it's counted as not being able to walk, to whichever degree.
In my country they don't ask about your ability to work or find and hold down a job.
But for me it is that my 4 hours of work each day impair my ability to do the rest, like household, personal hygiene or having a social life.
I got only 30% of disability and only just barely after the old criteria. If they would assess me again after the new, I'd be completely out.
But the reality is, that my chronic illness does affect every aspect of my live in a negative way.
If I had 50% disability or more, I could get extra vacancy days which would help me a lot. But 30% don't help me.
ME TOOO!!!!!
I just posted this to social media for everyone who's ever told me: "I wish I could eat as much as I wanted without gaining weight." No. No you don't.
#TryingToNotBeUnderweightGang checking in
Exactly right, I've had people say this or something similar to me many times. It's annoying every time.
my anorexia having ass can’t eat whatever I want. If I did, I’d be living on black coffee. Ugh, bitter Janets are so annoying with that shit.
Yea. I've got Grave's disease where one of the symptoms is hyperthyroidism and people just hear the "fast metabolism" part. Not how you burn through the energy food is supposed to provide, have an immense appetite and cravings that are distracting at best, get dizzy and lightheaded if you haven't eaten in a bit, and they definitely don't wanna hear about the chronic fatigue or all the other shit that goes on
No it's just "I wish I could eat that much without gaining weight".
Uhrg.
I tell people I’ve lost 130 pounds in the last year and they say, “Well, good for you!” Somehow they have missed the beginning of the conversation where I talk about not being able to breathe, or eat, finding out that my heart is laboring and a lung has collapsed because of fluid build up, a positive ovarian cancer test with no evidence of cancer that leads to a diagnosis of portal hypertension and then cirrhosis of the liver due to autoimmune disease and 22 years of diabetes medications. Is this our final answer? No, still checking things out and trying to manage the worst symptoms and not aggravating or creating others. Good for you?!?!??
I've been pushing for a proper diagnosis and people keep telling me 'what's the point if there isn't a cure?' and I don't even know where to start...
If this helps at all, I start by saying that knowing could help extend my quality of life. Just because there's no cure doesn't mean that there aren't small things I could do to help the symptoms, but I don't want to try anything that would make me worse (that may otherwise help the symptoms if I didn't have it).
How about because simply knowing what is wrong helps my mental health. So on the days I am so depleted of energy and can’t function, I know why. Or when my leg hurts so much I can’t walk, I know why. And while no there isn’t a cure, knowing , just knowing what it is helps me manage and accept my condition. And not knowing SUCKS!!!
Because there is no cure for many diseases / disorders etc. Haemochromatosis for example. Iron overloading. It’s not curable but it is treatable by venesections..and could kill you by damaging your liver or even giving you cancer of the liver! Diabetes. Not curable but is treated all the time. Once you know what is wrong, it takes a lot of pressure off our minds wondering what the hell IS wrong and whether we are going to die from it sometime!
And one day if that magic cure does happen...you can say “yes, finally!” And be the first in the queue instead of just sitting at home oblivious to what you have and what is possible to help or cure you !
For me I found finally after way too many years of tests and searching, having a name(s) for what I had finally stopped all the arseholes in my life telling me to "quit faking" and helped but unfortunately didn’t stop the hospitals calling me a meds chaser for saying I won’t take certain things they want to give me because I know it will either a) not work or b) clash with medicine I take. Not to mention simply having a name (as said above) majorly helps your mental health and knowing may lead if not to a cure but a treatment plan that could drastically (hell even minimally) help improve your quality of life.
Good luck
I agree with the comments on mental health and just having peace of mind. Personally I've dealt with people who think I'm faking my pain (high school is strange) and when people doubted me the most i put in more effort to find out what was wrong so I could know for myself that I'm not crazy. I never told those people of my final diagnosis bc there was no need, but I felt more confident in myself for just knowing that what I was feeling was real and had a name. Also knowing the name and the condition's symptoms can help you take care of yourself and if you're willing, it can help educate others (I am aware of how late I am to this comment section, I found Jessica's channel a couple days ago and have been binge watching since).
The first time I was told "you're so brave" for being in pain all the time wass a police officer. Adn I just didn't know how to reply? Like, no? I just exist? its what I got to do?
I guess he just didn't know what to say and wanted to say something nice? :-/ I get what you mean, you don't have a choice.
"Just push through it" same energy as the doctor who told me to "just try not to think about being tired"
YEAH I'LL GET RIGHT ON THAT, I'M SURE IT'LL WORK LIKE MAGIC.
(I did actually try for several weeks because I'm horribly insecure, but just made myself progressively sicker and sorer while telling myself it wasn't happening until eventually I burnt myself out so badly I had a mental break yay 🙃🙃🙃🙃)
I felt that deeply 💖
I too was told the same thing. Burnt out, melted down, and made my health way worse (in all senses of the word!)
@Alita Hargrove That's true. Distracting yourself from pain can be done with different hobbies. However, when you're told to ignore a symptom when you're most likely trying to get help in order to be able to go places, or do more, or just live more comfortably, being told to try to ignore it is both impractical and can be harmful as you will still be experiencing those symptoms but without actually dealing with them.
@Alita Hargrove I understand what your saying, but being able to temporarily distract yourself from pain, doesn't mean the internal damage isn't still happening. You just end up feeling the consequences later on.
Yep. I was told "Mind over matter!" by one doctor. He didn't really know what to say when I pointed out that when I did that, which I had, I fell down. Repeatedly. Until I went back to bed. No apology, just a well, not my department anyway, better luck elsewhere!
@@kirstinmckeown3581 Ugh, having those sorts of experiences with doctors can be super discouraging. Sorry you had to deal with that
IVE GOTTEN THE EXERCISE AND STRESS ONES TOO..... like no sir, pushing myself at the gym when my joints are dislocated WILL NOT HELP ME.
"You're just lazy", "It's all in your head", "Fibromyalgia isn't a real illness".........etc I refuse to let my illnesses define me. I am me, not my illnesses, they just get in the way of me being more me!
YES!! Fibromyalgia sufferers get so much crap from EVERYONE! When I was diagnosed, my Rheumatologist advised me not to disclose the diagnosis to anyone - work, friends, family, DHS - because of the horrendous misconceptions that surround it and how I’d be treated if people knew. That coming from the specialist was just ... yikes.
If only we had £1 for every time someone made an insensitive comment. We'd all be rich, and not stressing about getting disability. One can dream lol..... 🤷🏼♀️🙈
Some people told me that I'm paying up for my parents sins.
Every time I'm getting on the public transport I should be ready to fight elderly people, because I'm 'young and healthy' therefore not allowed to sit down.
Also my mother told me that instead of taking antidepressants I should attend the church.
Same. I have dissociative identity disorder and was told my mental health issues were because I'd "let the devil in". I was "exorcised" a number of times and strangely.. that made things worse. Fundamentalist beliefs are so fucking damaging to so many groups of people.
Wow, I am so happy to live in a region where most people are not religious. I am sorry you have to go through that, especially the sin part. That's a horrible thing to say.
I am rendered speechless by the sheer volume of insanity you have to endure. 😳
Hannah Abbot ... I don't have words. If I could and you are the type of person who would be comforted by it I would just hug the crap out of you, get you a cup of tea, and promise you could hide out in my apartment for awhile from people like that cause that is shit no one should have to deal with. As i cant hug you and shelter you or offer you tea... i have no idea what I can do to offer you comfort beyond saying Im sorry you have to put up with it.
And the same to everyone else who deals with similar. And here I was thinking the religious people in my life were bad!
Those “religious” people obviously haven’t read the book of job because the entire point is that sometimes things just happen and you can’t assume that the person deserves it.
"I'd love to sit on my arse doing nothing all day" is one I've got before, because when people see me it's usually here in my flat while I'm on the PC and the flat is a mess, so it looks like I don't do anything with my time and do nothing useful (despite volunteering online but who cares if you can't see it?) They think I have it easy, that I'm faking coz they've seen me walk without my stick, but I couldn't get my brain straight to brush my teeth this past two months except once or twice, so spent yesterday having two teeth removed to save me from a life threatening abscess. Being chronically ill features more than sitting down a lot, don't be jealous of my downtime, coz it's generally less relaxing than you might expect :P
PS, brush your teeth, your life expectancy will thank you.
I feel this, being disabled especially invisibly is so hard (I am), I am proud of you pal and thank you for the psa I will do my best to brush my teeth more :)
A friend of mind is facing sitting around doing nothing all day for several weeks because of an accident that caused extensive injuries including a TBI. He's not allowed to do anything - can't read, no screens, etc. I think most people would and do recognize how awful and boring this is going to be for him.
I think what's different with a chronic illness is that people don't see anything broken, so it looks like "just sitting around all day." For me, a healthy person with no disabilities, sitting around all day would still involve a lot of moving around! I'd get up to get a glass of water, to have a snack, to pee, to maybe put a couple clean dishes away, to check the mail, and at about 3PM think "I feel grimy, I'd like to shower" and then go do that thing. When I inevitably got bored, I could go do something else. If I have, say, a bad cold or flu, standing up feels like it takes effort and it makes me dizzy, and I can't be on my feet for more than a few minutes without needing to sit down. So I lay around all day, nap when the sinus pressure isn't too bad to fall asleep, and am generally bored out of my mind because I can't focus on reading and screens compound the sinus headache by adding eyestrain. I imagine having a chronic illness is a bit like having the flu, only it comes and goes sometimes on a daily basis, and is mostly unpredictable.
I just got, "I love to hang out in my PJs all day." I'm pretty sure they wouldn't want to swap pajama time for the agonizing pain that goes with it.
Man, I have so much struggle with remembering / being physically able to brush my teeth. I think in a year I'd brushed them 10 times, which is really REALLY bad and I feel disgusting admitting it.
I finally got round to making a dentist appointment and I mentioned at the check up about my issue with cleaning. I had x rays done and I was told that my teeth are mostly healthy, the small holes I do have aren't showing up on x Ray so they can't be too bad, and that all my teeth needed was a good clean and to be looked after better in future. He told me how lucky I was to not have worse issues.
My mum has gingivitis and frequent abscesses, and has had to have multiple teeth pulled (that's with frequent brushing) so I do get scared.
I wish I could say hearing how lucky I was kicked my arse into shape but as of writing this I've brushed my teeth twice since the start of 2020. Fuck.
Brb off to go brush my damn teeth
harmonicaveronica That is exactly how I explain how I feel to people-“You know how you feel when you have the flu? That’s how I feel every day. Some days are like the beginning of the flu, where you can’t move at all. Other days are like when you start feeling a little better so you try doing something, and then you realize you weren’t ready for it and you end up back in bed.” Most people seem to get it after that, at least for a little while.
My mom said “you are just the mom of young children, it’s normal to be tired” and I was like NO. I actually have untreated sleep apnea and I’m falling asleep standing up whilst working. Not normal. I just got the official diagnosis too so hopefully my cpap will help!
MariannaPlusTwo CPAP helps both my parents so hopefully it helps you too!!
My husband was diagnosed with sleep apnea a few months ago. His cpap helps so much. I hope you have success with it as well.
My CPAP has done nothing and it's been a little over a year. Still have fatigue and Excessive Daytime Sleepiness. :/
I can’t do PE at school so I have to take naps at school. My ‘friend’ knows about my chronic issues yet calls my nap time “extra study time”
I just got to "but you don't look sick" and I relate as someone who's about to have a meeting with my academic advisor to explain why I've fallen so far behind and of course I'm having an excellent hair day! I just look too damn good
This.
Laura Messenger I hope it went well despite it. And if it didnt I am sorry. May those in the future judge you less on your looks and more on your needs.
I was your 69th like also thank you for this im going through something similar and its good to feel like i am not alone
I hate when people say to me “oh it’ll get better.”
That drives me NUTS! You try to explain that no, chronic means for life (some people think it means bad). They still insist that no, you're young, and you shouldn't be so negative, as it'll get better.
Yeah, whatever..... 🙄
I remember having a panic attack in a shop when I was 21. A customer service person came up and said I was "too young to be stressed" 👀
HL W omfg
The one I get all the time is “it would just go away if you lost weight”
and it certainly doesn't ring true for most conditions anyway but I would love to reply in full to people "I was put on steroids for an incurable life threatening immune disorder that attacked my brain" I also have a hormone imbalance. Both of these caused my weight gain. I would be dead without the steroids. Rather be overweight and alive thank you very much" (actually they usually get a much shorter version ;) same info though)
@@ixykix Similar thing happened to me. And i have people come up to me constantly and try and give me dieting advice. "Cut sugar completely, Go vegan" And its like with my stomach problems if i can eat it without throwing up im gonna eat it
Fran Horne it doesn’t ring true for any condition.
@@Bukieteal17 I really relate to this as someone with condition that stops me from digesting fiber and requires me to eat very high carb. People constantly berate me about my diet (eating things that don't make me sick) and claim I would be magically cured if only I ate salad. When eating salad would cause me to be bedridden for several days. It's so frustrating.
'Pampered obliviousness' needs to be on some sort of sticker.
One you can stick on the back of people with pampered obliviousness.
Personally, I'd love to affix this sticker to their forehead as a warning to the next disabled person this obliviously pampered individual encounters!
New merch idea!
Pampered obliviousness is now a permanent term in my vocabulary!!!
Soph's Notes lol or a shirt you can give to chronically frustrating relatives 😂
I've been told to "just go to bed earlier" many times when trying to explain to someone that I can't meet them before 1pm. I have cfs and my brain can't function in the morning. It's very frustrating because I go to bed at 8 and yet I still struggle to fall asleep. Thank you for brightening my day with your personality.
Bella Yes! Comments on my sleep are frustrating. I have insomnia so am often more alert at night. I go to bed and wait for my meds to kick in.
Jessica's very British anger is my favourite thing honestly 😂💕🌻
YES!
This is so true, and so needed, I dealt with it earlier this week. I was getting out of my car when a woman literally stopped her car to shout at me because I was "obviously healthy" and didn't need the spot I had parked in. I hope we all take a few minutes before we make assumptions about people.
1islessthan3 there is a joke, i cant remember what comedian it was that said it but I want to say it was one of the blue collar comedy tour guys. It starts with him talking about a guy getting out of the car in a handicap spot looking perfectly healthy... so he hit him to give him an excuse to be there. Only for the victim's little old granny to get out of the passenger side shouting and waving her cane at him.
When I first heard it, I face palmed. On one hand just.... ahg. On the other, hopefully someone heard it and some seed was planted to not jump to assumptions.
Im sorry you were yelled at. I hope it wasn't to traumatic for you or anyone who was with you.
"No Karen, I've been lying to you this whole time" 😂😂This whole video hilarious and also so on point. Thank you for making all the videos in this series! I think a lot of us have the inclination to say something along the lines of "I get that too!" because we're trying to show that we relate/sympathize. This is one I've had to work on to stop myself from doing. You can absolutely have sympathy and understanding for a person without having to relate things back to yourself!
My cousin thinks that exercise and nutrition are the solution to practically every health problem. She's a professor of exercise science. She doesn't believe in taking medications, claiming that they mess with your system. I've kept my health problems a secret from her.
I specifically have a hard time when people cancel on me, but I try to explain that it’s not their fault and that I have autism, and that it can make change hard, and I actually love talking to people with health issues ( mental and physical) more than healthy because they tend to be more understanding about my symptoms ( of my autism, ptsd, anxiety disorder, arfid and depression) than healthy people
same, I have Dyslexia, diabetes, PTSD, anxiety, and chronic asthma.
@@shelbysquash6018 chronic asthma's the woooooooooooooooorst!!!! Or at least quite terrible and often somewhat disabling in my experience
@@shelbysquash6018 i get it (not all of it) and I am so sorry that you have to deal with some of the same b.s. as me because I know it sucks ❤ hope the best for you man
This, so much this. I have ADHD, SPD, anxiety, and probably other things. I much prefer to talk to people who also have autism, ADHD, Tourette’s, etc.
@@nadalekene2446 thank you for understanding :) hope things are okay for you
i was at a pre-admission testing appointment before surgery yesterday at the hospital (US, so terrible) and the doctor said "you really should talk to someone about your migraines." and it took all the strength in my body to not just say "wow i hadn't thought of it. i suppose i'll have to tell my primary care doctor, neurologist, the radiologists who do my MRI scans, and all of my other medical professionals that i see regularly and keep me on multiple medications for migraine. thank you for the suggestion."
My absolute least favorite comment is surrounded around “How do you feel today?” Which if I say bad I immediately get “I’m sorry, I’ll let you rest, bye”... I mean all I do is rest I’m capable of having a conversation laying on my couch talking on the phone. If I need to go I’ll tell you.
OR if I say “good” it’s followed by something like “Do you think your getting better?” Or “that’s wonderful I’ve been praying for you”. It’s not like I don’t appreciate the prayers but just because today is good doesn’t mean tomorrow won’t be bad. Especially since I’ll likely cram in 5 days of work into my good day.
Here’s the thing I don’t talk about my illness to others. I rarely start out any conversation with my health. So don’t be afraid to be around me. I would 100% rather discuss something else other than me! I know asking how I feel is polite but if either answer makes you uncomfortable don’t feel obligated to ask me how I feel! Ask me about my kids? My home business? My pets? My hobbies.... seriously I do live outside my illness even if my illness lives inside me.
On some days I just don't answer the question and change the subject. If someone askes "How is it going?" In German one can answer "Läuft." which translates to "it is going", which basically says nothing.
I have a similar issue. When someone asks "how are you doing?" I feel so exhausted about answering. I really don't feel like listing all my pains and issues constantly to someone and I cant just lie because I'm hardly ever doing "well", at best its "ok-ish".
I have an enormous amount of respect for you and find you inspiring. Not in a 'I see a disabled person, so I should idolise them and dehumanise them with how much I hold them above others' but in a 'you are a super brave human being that I want to tell how great you are and I appreciate your content for being simaltaneously educational and amusing'.
I love Jessica. She's smart, funny, insightful and a wonderful advocate for her causes 😊 Another great vid!
I "like" the sense of community when you hear "I get that too!" and the person actually does get it too because of their own chronic, horrible, condition.
For me it's migraines, skin feeling like it's on fire, joint pain, genuine memory problems (I use Google calendars paired with a smart watch and my own memory board) chronic fatigue, and falling over and twisting my ankle enough times that I need to walk with a cane. And the chronic depression interspersed with mania. Loneliness.
I had a generic test that revealed a condition only Asian people have (and I'm not even vaguely Asian.) My brain is constantly making too much serotonin and episodically kicking me up into the low/mid range of "serotonin syndrome." All that's a lovely and unhelpful diagnosis because the only anti depressant to decrease serotonin isn't sold in the states.
I went out with this friend (now ex-friend) back when I was still ill (I am luckily on meds that work wonderfully now :D). When I first got to her in the shopping centre, I told her I would have to walk very slowly today because my stomach was in a lot of pain, but it wasn't quite that bad that I felt like I absolutely had to stay at home. We start walking and 10 seconds later she is already like 5 metres ahead of me. She looks back when she suddenly realised I wasn't next to her anymore and when I caught up she goes 'oh wow, you weren't kidding when you said you'd be slow'. No shit mate, I didn't say that for fun.
Also love the 'what isn't wrong with you?' questions.
I take my pill box with me everywhere...obviously because I need pills all day. People who have seen this before don't say anything other than "do you need something to take those with?" But new people see it and say "why do you take all those?" I will explain and since I work in the medical field I sometimes say exactly what Im taking. Ive had many people say "but the vitamins don't REALLY count as medicine because doctor's didn't prescribe them." Um...yes b*tch, they did. All of my medications INCLUDING THE VITAMINS were prescribed by an MD!
I feel this. I take four types of medicine including vitamin supplements that I have to take every night. I was out with friends and had to tell them to wait for me so I could take my medicine. They were all very understanding until I pulled out my Vitamin D and Iron supplements and then they all went, "Oh I thought you had to take proper medicine" -_-
Mykaela Paradis I mean, OTC allergy and cold medicine are still "medicine" even though they're not an Rx, so I'm not sure why having a prescription is a prerequisite. 😤🤷🏻♂️
I think people sometimes mix up multivitamins vs vitamins.
Since multivitamins are all over advertising and tons of people taking them and studies showing they don't do anything, people think it means all vitamins are useless.
No, but you taking random ones just because Instagram said this is a good product is probably useless vs someone with an actual iron deficiency taking iron supplements or someone with SADDs who lives in an overcast climate taking vitamin D.
My doctor actually prescribed me a vitamin and when she saw I was upset I admitted to being frustrated with having to take one more thing. One more thing to think about. One more issue trying to be corrected. Her reaction was to say no, not really cause it was just a vitamin. Like, a vitamin you are telling me I need to take because I got a new diagnosis on top of all the others and this is something I need to take cause it wont get better on its own doesn't count?
‘What Not to Say to a Disabled Person’ was a *year* ago?!
My reaction as well! :-D
Them: Think positively and you will be cured
Me: I am positively grateful for everything my chronics illness has and does teach me. It has taught me HAPPINESS
Them: OH NO, not like THAT you NEED to want to be cured at all cost and be positive only TOWARDS that end, or you make me (an unhappy able bodied human) uncomfortable
Me: Have YOU tried being positive? Look at your own life and just being grateful (without comparison)
Them: Well no that takes effort I would rather point at you and tell you to be an inspiration while not allowing you to actually be one
Me: That sound exhausting, I will just be over here juggling my spoons and BEING happy
I can relate. I’m actually healthy and normal 90% of the time, but developing something that can debilitate me occasionally made me take a step back and learn to not take the time that I am genuinely happy for granted. Why should I let my health issues, things that I have no control over, make me feel bad when they flare-up. I have a right to be upset, but that doesn’t mean I can’t roll with the punches and still enjoy other aspects of my life. I would love and enjoy a cure, but why should I wait to be happy?
urgh I feel this! Had an old boss tell me "you know, if your attitude changed you might be sick less often."
Thing is, she was miserable af with her life, loved to treat people like garbage and SERIOUSLY needed to change HER attitude.
What I needed was to have a septoplasty so I could breathe properly and not be in an environment full of toxic, unhappy people and stuff I was allergic to - following those things I'm pretty well content.
But you really do learn a lot from someone telling you it's YOUR job, as someone who is ill, to change YOUR attitude when they're the one attacking you for existing.
I find happiness is the small things
Damn, I felt this, especially the "are you better yet", mostly from people who knew me before...
I have suspected all along that all of my health problems were due to standing too close to a seal that one time! Such a terrific video, Jessica! I will forward this to others as needed!
One thing I've gotten is "You're letting it win." Which... sucks a lot to hear. :'3 I'm sharing this video with everyone I know, thank you Jessica!
I do love when you make these types of videos, Jessica. They're informative but entertaining, and great to share with family and friends who are struggling to navigate conversations around these issues.
My mom has asked why I still took antidepressants after years of doing so and why I took so many medications for other things. She doesn't understand why despite seeking help I'm still depressed after over 10 years. Mom discouraged me from seeing a doctor for certain health problems saying that I needed to accept that sometimes there isn't a reason for why we're feeling the way that we do. I went anyway. Once I had to leave work early because of how badly I was feeling. She got irritated with me for it. I told her that I'd see my doctor, but she claimed that she wouldn't be able to help. She proved her wrong. Mom was suspicious of how frequently my brother was absent from school for being sick. They argued and he threw-up.
As a young person who needs crutches for my chronic illness I get a lot of questions about “what I did” and “when will I get better” even from strangers. Like this morning the buss driver kept asking me “what I did. Even though I answered, because the answer REALLY Is NOTHING
Thank you, Jessica, for making this video. As an able-bodied person I have learned so much from you over the years (and the people you've collaborated with who I now follow too). ❤️ It has made me much more aware of all the different struggles people might be going through and with that a more empathetic person. 😊 Thank you for all the wonderful work that you keep doing.
I agree, I have also learnt a lot, and it makes me more aware how to ask people if they need help and how to respond.
This made me realize my general making sympathetic noises and saying "oh that must suck." isn't that bad a response. If the topic is headaches I might say" I used to get really bad headaches as a kid, they're the worst." but not always. I can't imagine saying most of these things to people, like did these not sound super rude in their heads?
Jordan G its the "they are the worse" that makes me have no issue with your bringing up your experience with headaches. Its when people say "i used to get headaches but" that the issues come. So, I wouldn't worry about it. You are showing sympathy. You aren't comparing or dismissing their issues. As someone with headaches and migraines i would just smile at you and say "yeah they really are" then ask about your history encase it was bad and you wanted to vent a bit... though sadly now that i think about it i respond to the but people in a similar way. At least if i get them talking about themselves they aren't saying dumb shit about my life. 🤷🏻♀️ the difference is Id care about what you have to say while trying not to feel upset about them.
Nothing opened my eyes to the reality of living with a chronic illness like my friend literally collapsing after trying to keep up with me for two hours one morning.
I once had a girl say, "I wish I had that, so I could stay skinny." I'm in chronic pain all the time, and it's so physically debilitating, you don't want this. I haven't talked h to her since.
I tried to go back to work (a big mistake, brain fog is no joke) and my HR person said that I looked good because I'd lost weight. Of all people she should have been aware that I was out due to illness. I joked that she wouldn't want to try this diet. She didn't get the joke.
I unconditionally love Jessica, her partner and this channel.
The one I struggle most with is get well soon. I know they are being nice. I have the tendency to state, thank you but cronic illnesses probably not going to get well soon. I just state it is what it is and I'll be as well as i can be again soon
Charleh Cunningham but it can get tiring having to explain it again and again. I hope at least the people most in your life have figured it out by now? And if they haven't i hope they will soon♥️
@@khaxjc1 thanks, it really does. Youd think that but i spend a fair bit of time with people who think they have an answer or know a person for everything. My partner is pretty amzing though. 😁❤
The one I get is: “You look too healthy to have cancer...”
Nicole Hood yes, because cancer is so widely known for being diagnosed with the old cursory looking over test. Im sorry for every time you've had to hear this and I hope to everything good that they meant it as a compliment or were just so surprised, and not that they openly changed your diagnosis.
This hat/fascinator you're wearing is everything, we need the link.
Also, so much of this actually applies to my chronic bipolar disorder and chronic joint pain. Honourable mention I've gotten: "do you think you've become dependant on your medication?" Um yes duh I'm barely functioning on it, what do you think I'm like without it
Kinda wanna start saying “and you dont look ignorant” after someone says “well you don’t look sick”
Emilia 7 if your do please report back to us so we can live vicariously through you.
Would’ve loved to use this comeback myself, but unfortunately all the times I’ve had those comments directed at me were by doctors 🤦🏻♀️
I’m still coming to terms with all this chronic illness malarkey and my place in the world now as my life (like so many’s) has drastically changed.
Dandelion Mel its a shitty thing to have to do, but putting in the work to adjust your thinking to things helps in the long run. I hope you have understanding support around you and if not Im we live in the age of the internet where you can always find support if you know where to look ♥️
khaxjc1 i am pretty sure that not getting the support i need is the reason why I struggle with acceptance (which Is constantly a work in progress)
Holy hell this is an important video! Thanks for making it❤️
So educational and MY GOD I love the sass :D Just one remark towards the end: "You've got to love yourself first", assuming it implied something along the lines of "before you can be loved or receive love by others properly"? It reminds me of a video where you discussed body positivity for disabled people and people with chronic illnesses, which you also repeated here. For people struggling with their mental health, self love often feels very foreign and even after treatment it can be a very long way to get there, some people may never and that's okay. Self acceptance is often much more productive, as it teaches you how to respect your own boundaries and feelings and ultimately self-compassion. Always hearing and reading about self love may give them just something else to beat themselves up about. "Why am I feeling like this? Why can't I hold healthy relationships? Oh it's because I can't love myself and I clearly haven't tried enough yet." People who struggle to love themselves are worthy of love.
I just rewatched the end like three times and what you said wasn't far off what I'm trying to say actually. Don't know where I got "self love" from, I think from the" happiness can only come from within". Just wanted to acknowledge that, I'm not trying to lecture at all. Maybe someone can still take something from my comment :)
I prefer the idea of acceptance myself because it means being less than perfect, loving & lovable is totally ok. You can accept your darkness too. You don't have to "love" it neccessarily but to be whole you must accept all the parts of yourself. I really hope that made some kinda sense...
Botox for migraines is game changing!!!! And the ajovy shot. And also, I get pretty much all of these, from my Ma. Who I am reliant on to have a moderately normal life.
“You don’t look/act according to our preconceived notions of what your condition ‘should’ appear” is about the dumbest thing a person could say/think
Valerie Leigh especially when it turns out they know just about squat about the condition. When they cant answer more than its called this and it effects this part of the body what makes them think they really know anything?
'I wish I had time to nap...'
Me: I wish I could stay awake for a few hours enough to finish daily chores.
Also 'It's all in your head!'
Me: I'm studying Psychology and see a therapist...Yeah, some of it in my head, because my head is sick, and the physical invisible illnesses are going to directly affect brain function via disassociation and brain fog!
That Shiny Kitty Kat first, yes, yes, yes to what you wrote. Second, my uncle told my Grandmother "its all in her head" about me, not knowing I was near by and could hear him. Her response was "well obviously. Its a migraine."
I hope you got a laugh out of that cause it definitely is a happy memory for me.
@@khaxjc1 Your grandmother is goals, I chuckled at it! I have migraines as well so I can relate a lot, and I hope yours have improved
I love being told that I need to "exercise more." You know, dispite the fact that I've literally been told to avoid a lot of types of exercise besides light yoga and my medically recommended stretches for my feet. Sorry I was born wrong and can't do all the same things you can because my feet were deformed when I was born and it still effects me to this day. Sorry I'm ruining the trip that you asked me to come on with you and that I said yes to because it sounded like fun and I thought you knew what you were getting yourself into with me. This is a regular occurrence btw.
Maria Caputo yeah... been there, been resentful of people having expectations I warned them I could t meet. I hope whoever it is in your life doing this finally comes around to understanding or if its more than one person than at least there have been some trips that were okay and that you keep trying cause hope is important and as long as you get something good out of it great. If they are upset, then they should deal with that.
“I’d die if I couldn’t eat (xyz)”. See also: “I’d just eat (xyz) and suffer the consequences”. It isn’t worth making myself critically ill in the ER - you have no idea and trust me, it isn’t worth it.
Same. I can live very well without chocolate.x) Though to be fair, it wasn't my favorite candy to begin with, so the loss was rather easy to take. Except on birthday parties and such, where there's only chocolate cake available and nothing else.
"stood too close to a seal" I'm dying over this one. How do people even come up with these ridiculous reasons for why I'm ill?
My favorite response is after being insulted or harassed someone saying “ugh I’m not gonna take the time to read a short article or watch a ten minute video to actually be able to understand you. I’ll just continue making harmful guesses and claims about your health and get offended by your symptoms!”
Emily Geier that’s so hard and stupid
Yes this. All of this. My disability and chronic illnesses are different from yours but the things people say are exactly the same.
Before this video, I got an advert about deafness and you were in it! 😂
Maisie Henderson Same! I got a little thrill when I saw her pop up 😁
"I wish I didn't have to work"
Yeah it's so fun feeling like I have no purpose and am just a drain on society 😀
I work 2 hours a day, 5 days a week (I work in a month what most my friends work in ONE week) and it's all I have and I force myself to go even when I probably shouldn't because if I lose this job I will cry because it's the only time I leave the house and my only feeling of purpose 😊😊😊😊
“I mean you don’t look like..! Calm down Jessica” no Jessica please please continue😂 lol
Me: is gen z with chronic illness
My boomer gran: it’s because your always on your damn phone
I saw an advert for “Deaf Works Everywhere” with you in it before this video ! Apparently you “have people hanging onto every word” which I absolutely agree with haha.
For the love... Some of these need to be made into t-shirts! There are days when I have struggled for literally hours to get ready to leave the house and invariably someone makes a comment about how much better I look. It's called makeup. A whole lot of very carefully applied makeup. I'm 57 and having been living with this since my late teens/early 20's. I've heard just about every well-meaning and even snotty comment there is. Thank you for trying to educate people. 🤗😏
"Just cheer up"
The freaking arrogance of some people!!!
"If its that simple why aren't you cheery all the time?"
@@khaxjc1 honestly
“You take too many medications!”
I laughed out loud at that one bc it’s such a common comment I get along with the pity of “ what happened to you” or “what’s wrong with u?” seriously it’s so annoying! 🤦🏻♀️
My mum actually tells me "I think your medications are doing you more harm than good, why don't you come off some of them?", to which I replied "because they're literally the only thing keeping me going" 🤦🏼♀️
“Have you tried medication?” I get this all the time regarding my anxiety, panic attacks, and migraines. As if I could not have thought of it myself.
These videos always make me smile with your sassiness! If only there were other things to do this sort of series on...
“I wish I didn’t have to work!”
I wish I didn’t have depression.
I just can't like this enough! Thank you!! Three years into my diagnosis and still getting frustrated with the well meaning assholes. Thank you for helping me laugh today!
I’m a public librarian and my coworkers and I watch your videos to better understand and serve our disabled patrons (plus vintage obvi) Absolutely love your channel 💙💙
Yes, yes, yes!!!! Type 1 diabetic here...so many of these apply!!!
The "I wish I didn't have to work" thing drives me INSANE because I put myself through a grueling full time college and full time work schedule for 7 years to get a degree I could use to find employment or pursue a PhD and even though I was disabled then, I was sort of making it. I was pushing through. Then I got hit by an idiot in a truck and my life went straight to hell and now I'm not sure if there will ever be a place for me economically. All I wanted was a job where I could be fulfilled intellectually, and I put in more work than a lot of people to try and get one.
Life has never been kind to me and every time people act like I chose the state I'm in I die a little bit more.
Dang, that sucks! 😖 ... Sending you a big virtual hug! 🤗
@@bellisperennis42 Thank you so much! Sending you good vibes! :) Have a great week.
@@xerxies8947 : Thank you! Have a good week too! ❤
I made a comic about this just yesterday, must be annual flare up week for all us disabled folk.
@@010101Be oh well, it's just a messy 4 panel thing lol, you can see it on my Instagram, same username
I was just talking to my boyfriend about how I hate to be told to «try to think of something different» or «let's change the topic» when I have very strong symptoms and all I can do is say how much I'm hurting/feeling nauseous/etc. It's annoying because when I feel that sick I literally cannot think of something else, my body feels to bad to focus on anything. It's really hurtful because I'd never say that to someone when they have the flu, a headache, etc, and the fact that people assume that just because my illness is chronic I automatically got used to it and it don't get the right to allow it disrupt my life. Not like I could help it, anyway.
"have you tried yoga?" "you need to try yoga!" "y o g a" okay karen, lemme just pop down to the local yoga class and subsequently dislocate all my joints because the goop that keeps things in their sockets for me is literally just spaghetti. pls. pls for the love of god stop telling me to try yoga
I thoroughly enjoyed watching this video, and, being married to someone with a chronic illness, I can well identify with everything you talk about in the video, because we've heard all the same 'well meaning' comments, and feel exactly the same as you about them. You will note that I say 'we', and it very much IS 'we', because I find these kind of comments equally as hurtful as my wife does, even though I'm not the chronically ill one. I imagine your own wife probably feels very similar too. Do please realise you're NOT alone, even though you most likely feel as though you are most of the time. There are lots of other people who, even though their illnesses are not as serious as yours, will be sharing many of your feelings. As a full time carer, I find your videos to be a total inspiration, and you help ME to muddle through things, even though I'm not the ill one in my wife and my partnership.
"Oh i get that too!" best answer: "ooh ok, you should probably see a doctor, because that's not a normal thing to have.."
"I wish I could stop working" and I wish I could work but employers are scared of disabled people like the plague so it is incredibly difficult to find a job especially as a student/young grad
"So what have you been up to this week?"
"Honestly, a lot of sleeping to be honest. I havent been able to do much else, although I made it to a swimming lesson".
"God that sounds lovely actually."
(Privately in my head) "please get out of my face before my crushed soul crushes you".
i loved the snarkiness in this video lol
I can't love this enough. The insensitivity is REAL. When I was searching for a diagnosis a few years ago (for what turned out to be severe Crohn's disease), I even had each of my various doctors tell me that I was lucky to be a healthy guy. And there I sat, flabbergasted, because c'mon kids, if I were healthy, I wouldn't have needed a friggen team of doctors!
Anyway, I love your videos. Keep up the great work!
So relatable! Especially, “I wish I had time to nap” and “I’m quite tired, too.”
Lately I’ve heard “chronic fatigue is made up” who has the right to tell you doctors think chronic fatigue is made up and it must be a low thyroid!