I had someone genuinely shout at me when I said I was never going to get better. She told me I was being negative and was *pissed* when I said no, it's not negativity, it's reality. Being positive for me means accepting that I am sick, there is no cure and that that is ok. I'm happy being who I am, whether or not I'm sick, and I can have a positive outlook while also accepting all parts of myself, even the sick and painful ones. It would be far worse for me(personally) to always hope for a cure that doesn't exist. My DNA is broken, theres no fixing it so instead of expending my limited energy towards worrying about it, I'm going to live
I guess for some people it is just unimaginable that someone living a different life than them could be happy, when they themselves are scared of what could make them different
I suffer from cronic pain and I hate when people say stuff like "Oh you'll feel better soon" or "Have you tried this oil?" "You don't look like your in pain"
I've got EDS and I parked in a disabled space and a man started arguing with me because he didn't think I needed the space. He said a disabled person needs it. I asked him what a disabled person looks like and after a lot of shouting from him he said that he hopes I wake up disabled one day!!
@@dropdeadfred73 Sometimes I wish there was a way for us to share our conditions with those who act like this! Or those who keep asking when are you going to feel better. Because as we all know...you don't get it until you "get it"!
I’ve got EDS (in diagnosis limbo) and someone recently asked me “Is it ever going to get better or improve?” And like you know I hope so, if I did my physio more consistently it might improve a little, maybe someone will invent a world changing treatment in my life time, but it’s probably just going to get worse and worse. Soooo I wish he didn’t ask that or at least ask it like that
I confided to my coworker, and she said, "There's so many things _wrong_ with you. Are you sure it's not all in your head? Other suggestions: "Have you tried acupuncture/yoga/meditation" I'm not butthurt, but I just don't talk about my illnesses to people that much anymore, if at all.
Being chronically ill makes me feel like constant liar --- like I'm afraid that when I get those rare good days where my symptoms are less intense I can't actually enjoy it because people question whether I'm liar or whether my illness is as bad as it is, on a daily basis. The other thing is, if you have a mental health issues, doctors can get so dismissive about your physical health issues because "it must be stress." But see, non of that actually fixes the problem, and it just leaves me both feeling crazy and also continual suffering because your issue was never actually treated.
It’s tiring, I have fatigue from a chronic illness so not the same thing, but I also have one of the most restrictive diets there is, and people act like I could actually handle more restrictions even tho I’m constantly on the edge of an eating disorder, my gastro didn’t even consider sending me to a dietician after prescribing this nightmare diet *sigh*
Ikr?? I rat literally three things that DON'T make me feel sick: lettuce wraps, turkey burgers and tuna fish. Those are the three things I eat 80% of my life now, the other 20% would be the occasional eating out.
My sensory issues makes it so if I eat a food I'm not in the mood for I will throw up and my stomach constantly hurts so I have to be careful what I eat and my bf never ever listens. He doesn't understand the concept of chronic pain and eating disorders. I told him that he could have chicken Alfredo for dinner one day and I'll get something else. He was paying so I said if he didn't want to buy something else for me that's fine and I'll just find something at the house. And he went "like ....it's just food. Just eat it." I looked at him with my eyebrow raised and he still didn't understand exactly what was wrong with what he just said
My dad has chron's disease and girls are like "well try having period cramps" yet the stomach pain he gets is 10x worse, accompanies diarrhea, nausea, and vomit. Also being bed ridden. I have a period too and that doesn't happen when I get period cramps and it doesn't hurt as bad as the pain my father experiences. Happy father's day. His doctor told him to do yoga but he had a grand mal seizure a while back and can hardly walk so like...
I think it depends, I’ve had both, because of some treatment my periods are mostly fine but they’re bad enough I can’t move for hours, two months ago I couldn’t stop screaming, but I’m allergic to pain meds so I just cross my fingers that the neighbours don’t panic and contemplate a hysterectomy, on the other hand, my digestive system has also left me screaming in pain (and I actually have a quite high pain tolerance) but for both there’s always diff levels of severity every single time, I figure once it gets to the point that I end up screaming uncontrollably the comparison game just doesn’t matter, luckily I’ve only had that level of pain like idk less than 20 times?
I despise when people ask me every single conversation we have if I’m recovering or things along the lines of that they hope my chronic illnesses fully go away soon. It fully crushes/frustrates me because I’m quick to say “I’m hurting but I’m okay” when in reality I want to tell them that I no longer can enjoy food, I no longer have the energy I used to, I have pain every single day and it’s all things I see doctors to manage because it’s life long. It won’t go away and them telling me to eat organic fruits and veggies or to try exercise won’t fix me. It only overwhelms me and makes me think of “what have I done to end up so ill and in pain” or even makes me desperately think of “what will it take for people to not treat me as some delicate crazy patient that can’t take care of themselves”
It's really hard to find the balance of presenting positively enough that people don't freak out and get super uncomfortable (and make more work for you). But also to present negatively enough that they don't just think it's no big deal and everything's fine, they don't need to really pay attention and can just blow the topic off.
@@determineddi2044 it’s a desperation for some of them to try and help. It’s hard to see a loved one struggle. Nonetheless I love and appreciate them regardless despite my frustrations at times when I hit my mental lows.
Some people honestly mean well when they say these things. I try to educate that the #1 symptom of living with a chronic illness can be guilt. Those with a chronic illness have to try so hard just to live a daily life and we don't know day to day what that might be! If someone says "Oh, I get tired too." Or "I wish I didn't have to work!" Is that supposed to make me feel better about myself? NO! I'd give anything to have a job. I don't expect people to say everything in the right way but really you don't have to say anything. Just accept me as I am and don't try to fix, judge or explain what you can't understand.
How do you deal with the loneliness? I lost all my friends once I started having to go into the hospital a lot, and I'm not as fun at parties anymore. A former college friend of mine came into my workplace, and asked me how I'm doing. Well, my dad passed away and I've been struggling with Lyme disease. My friend said, "oh, but are you okay?" Really they all scattered like roaches the first time I was in the hospital. I try to be positive, but it can only last so long when I'm in agony.
Something I’ve found really helpful is connecting to other chronically ill people or specifically people with your condition through groups on Reddit/Facebook/Discord or local support groups. It’s nice to not have to explain yourself so much to the people you meet there. In a group like that everyone is the friend whose been dealing with some sad shit, so in turn no one is the friend whose been dealing with the sad shit, and it doesn’t feel so heavy. Also there are lots of people who aren’t chronically ill who are willing to hold space and understand different needs and ways of living while also just looking to have fun together. It just takes a while to find them sometimes. I recommend joining a group about a hobby you are interested in that runs often and has a drop in aspect to it, so if you aren’t feeling well it’s no big deal if you miss it. Loneliness sucks and is sometimes unavoidable, but I’m sure there are more people out there than you might think who would love to be your friend
I'm not trying to be mean, but if you ever had any before in your life where you did have friends, and then you became sick and lost them, then you are so goddamn lucky that I would kill to be you. My first memory of my entire life is having an allergic reaction, and nobody around me caring at all. That has been every single day of my life since I popped out of my mother's broken body
i'm very angry - i don't deal with the neglect, rejection, etc. I am not lonely, i like myself and i'm creative when i have the energy to move. I hate these attitudes that i can control this - believe me , i'm a perfectionist i woulda shot this thing decades ago. (ME and Fibromyalgia)
It got "of course you're gonna feel pain when you think about it. The medications (I get small doses of medications for chronic pain) isn't good for you, just have to convince yourself that it doesn't hurt and it won't"...
Yup. My mom just said “its not that, its lack of motivation” after I explained I literally have a checklist in my mind of things I need to do to organize my space, and the desire to, but am PHYSICALLY UNABLE. She cannot keep herself from projecting her own undiagnosed-adhd world view onto me… I’m getting so sick of it.
I am 16 with arthritis and pots syndrome this is 100% everthing people say to me when I say I have a disability and a chronic illness the worst one is when I sit down on a chair and people say u don't look sick so stand up and let people older than u sit down. The only reason I am sitting down is to not faint and embarrassed myself in front of people so yes I need to sit down
maeve young I also have POTS, scoliosis and problems with all of my joints. When I’m in church Yknow sometimes I can’t stand or kneel the entire time cause I get lightheaded or my knees start locking up or whatever problem it is that time so I sit down and oh the dirty looks I get. Even my sisters have said stuff like oh you’re young you can kneel and I’m like sorry should I tell my heart and blood pressure to start working for the literal first time in my life? None of my illnesses are physically visible. They’re all invisible and most people just don’t understand what I’m going through because I’m so quiet about it in my day to day life (Sorry that ended up being longer than intended)
Im sorry. But when the people closest around you and family STILL wont even remotely try to understand....I WILL get pissed. How about family who have pain issues STILL think that youre making it ALL up!? Cutting ties with everyone will land me in the nursing home where I will die for sure! At least i have a few close good friends.
So many people try and blame my issues on the fact I'm vegan. It's so annoying. I get people who have a go at me for limiting my sugar because they don't believe that limiting sugar helps my symptoms a little
I hate when people comment on my diet because I eat an increased amount of sodium to help manage my POTS and people point that out like “that’s so unhealthy. You can’t eat that much sodium, it’s bad for you” actually.... it’s helping to keep me conscious
'You've just gotta be positive and strong' - my sister 🙄 Yea for 8 years I've been in 24/7 pain with fatigue and other symptoms but still managed to survive and keep striving for my goals, even though it took much longer, that's the definition of being strong and positive. So when I complain sometimes it's because my pain and other symptoms are really bad, not because I'm a 'negative nancy'. Most don't understand because our suffering isn't visible 😔
I just love when healthy people close to me in their 50s+ constantly say, even randomly out of the blue "Just wait until you're my age" "Oh, you're so young, wait until you're old" etc in a way that implies I'm perfectly healthy and have nothing to complain about solely because I'm in my 20s. Those same family members couldn't stand a GOOD day in my shoes.
Isn't it sad that most of us have heard these (and worse) lines from the doctors we finally were courageous to confide in? My first experience seeking help, after years of knowing something was off but pushing on, the doctor looked at me with a grin and said 'you're young, blood's great, you are as healthy as they come, just cheer up' - while I was in front of her feeling suicidal due to intense pain and fatigue. That same doctor keeps getting awarded by organisations and people keep recommending her to me. I hope she was kinder to others.
Hey, those are exact same words than my doctor said to me! Sarkastic: "Maybe it was in their workbook at school!" (where ever they got that degree which gives them "rights" to start unvalidating other people's pain/symptoms).
I originally wrote MUCH longer comment about the doctor I just quit seeing after a year of neglect and gaslighting. A doctor that everyone I know RAVES about. I decided not to subject you to my very very long comment, but while I don't know your personal experience with your condition/s, I can relate on some level. I was ignored by doctors as a child and finally decided to advocate for myself after 15+ years of worsening symptoms, just to get treated like shit for a solid year by "the best general practitioner in Jefferson county" I just started seeing a new doctor, who prescribed me a medication to manage the condition I had to pull teeth for most of a year to get evaluated for and diagnosed with, and who doesn't see it pointless to diagnose and treat the other two conditions. OG doc's favorite phrase was "Well you have fibromyalgia, you're going to be in pain anyways" as her reasoning for refusing to look at my symptom lists, prescribe medications FOR FIBROMYALGIA or send out referrals. And when referrals did get sent out, one place had shut down, she lied on the referrals, and they took 3-12 months to even get sent out
I’ve heard all of these. Latest really bad one was boss said “YOURE NOT BETTER YET?”. I was taken aback. I mean, I have times I don’t feel as bad, but I will always struggle.... I’ll never be “better”.
my boss allways called me a crybaby for not being able to deal with pain when something happened... then got diagnosed with fibromyalgia.. and now he says my faking shit and that im "catching" everything i read or hear... what a good place to be....
This sounds illegal to me. I swear you would be protected under the disability act & he could be in serious trouble for this. Hope things are better now.
I have to be on a low sodium diet and am still in school. We had a classroom party and obviously had to count sodium amount. Having to look at labels and stuff was embarassing enough but my friends were also just getting annoyed with me and making fun of me and saying i would be fine if I went over my limit. No fam, not how it works. One of them even responded to me telling them they don't understand with "I dont understand? your saying that to someone who could eat one wrong thing and immediately get diabetes." yeah you say while stuffing your face with every food item you can find meanwhile I have to closey monitor every single thing that goes into my mouth. no dear you dont understand
I actually don't mind unsolicited advice. It has led me down some pretty interesting studies that sometimes have helped. The thing that bothered me was being called a hypochondriac by a few close people. That stung a little.
Wow! Brilliant video 😀 I meditate, I do yoga, I use CBD oil, I eat mostly healthy and guess what? I STILL have MS! Found this channel, blog and twitter and insta via a bbc 3 vid! My pet hate is people saying “oh you look great!” I used to try and politely laugh it off but now I just reply “well I FEEL terrible” 😂 👍💜☺️
Love this!! My "favorite" question, besides yours, is - Are you drinking enough water? Get that all the time by health care providers and nosey neighbors etc. and the "8 glasses/ day" is such a myth anyways!! Thanks to you and all your guests for sharing!
Ugh, I have EDS and I get so Annoyed when people say things like this to me and Everyone else who has EDS! Especially “ maybe you should exercise more “ “ how are you doing?” “ hope you get well soon “! “ you’re just getting old “ etc. COULD YOU PLEASE JUST STOP!
Love your video. I’m a lot older than most of you, but you have presented the incredible (ignorant) things that people say to those of us living with a chronic illness in fresh way.
yes! thank you for this video! I need to show this to everybody, not feeling alone in this is so valuable, my illness is one thing to deal with in my life but the discrimination is a whole other thing that is often worse than the illness itself for me, thank you for showing that this needs awareness!
i have atopic dermatitis and i tried to share to my friends the struggles that i have, told them if they could be understanding when we go out cuz i have a hard time getting ready everyday. i know it's not nice not to be on time and i try my hardest to act quickly *without being stressed* but they just bombard me w questions from time to time if im done yet and i always breakdown and cry and i'm fucking tired already when i haven't even got outside yet.
My favorite "your to young" Not in the I'm sorry you've go to deal with this and I pity you ( witch still hurts). No I mean the no that can't be it your lying/ being dramatic so on and so forth.
I'm usually a pretty calm and loving person but after 2 new diagnosies this year and 1 past one and constantly hearing these for all of them even tho I've tried every possible thing you can think of and i can still barely go on with my life, words like these really anger me now and i have to calm myself down so i don't snap at people.
@@limiv5272 That was years ago, but she was actually one of the nicer doctors in the clinic I used to go to! That first appointment I had with her felt like an interrogation though. The main doctor in the clinic however was a complete asshole who drove everyone away. I've only had to see him three times, and each time that I've seen him he was absolutely terrible! Last appointment I had with him was in a fucking file/storage room because the clinic was transitioning to a medical boot/orthotic clinic due to everyone fleeing. I'm with better doctors now! 👍
Even though my colitis is mild to moderate I still get these same reactions. Continue to seek help for your health journeys and know you are supported and I wont tell you what to do. Some times you feel like you have to be the strong one and not let people know what's going on.
Let's face it. Milk cures everything 😂 I love milk for home remedies. No joke that stuffs amazing for wound recovery but it really does nothing for chronic illness.
Every word his true .l have xspereast it most of my life and have letters to prove it .it his down to higrnus.soory for bad spelling.well done put you can not change some peple .l am posertive ,sensofumer and that makes me look that l am ok .Thank you all who do understand all my cronic illness 's and other one's with them .in fact I am a better and clever person and happy even thow l am in cronic pain.well done for your talk.👌❤
I’ve been yelled at for eating, shamed for being against smoking weed (they don’t ask why. I’m allergic to weed. I have MCAS. Weed triggers it.) and so much more. I have people regularly grab me without my consent why I’m at work to pray the demons or illness out of me. And one time I cried out of embarrassment and they said you’re welcome. Unknown to them after they did that my stomach became paralyzed and I’m now hooked up to feeding tubes and soon IVs. And on July 13th I’m getting tested to see if I might lose my large intestine. I’m grateful people care, but never ever grab someone and pray over them why they are cashiering or helping customers. Just never grab someone. You’re not doing them a favor. I’m not Christian and no one asks me before they grab me and pray over me. I will thank you and appreciate it if you ask. I am open to it. I pray of people if they want me to. I went to church. My family is Christian and I love all religions. I love learning about them and understanding them. I just don’t identify. I’m not attacking anyone for their beliefs. I am upset I’m being grabbed when I have trauma from abuse and prayed over like I’m an accident or mistake and it’s now announced to all of my customers. I’m not broken. I’m not a mistake. I didn’t ask for this body. I spent years begging different gods to save me. And my health is declining worse. I now choose to try to make my life about helping others and doing what I love. Not because of my illness. Because I want to make an impact before I die. No one knows how long I’ll live. There’s a chance I won’t live long. Just like anyone else. So instead of worrying about it I am working to do better. And I’m upset with myself that it took me being as sick as I am to finally start. I’m not weak and I’m not an inspiration. I’m fighting to live just like everyone. Don’t isolate us and make us and us vs them thing.
As an atheist that is infuriating and insulting.They only say that to make themselves feel better about the situation without doing anything proactive to help.If they believe in that nonsense then it was their 'creator 'who gave that to us in the first place!
Someone ends up needing disability money to survive.* "My tax money pays for you!" When almost no tax payer pays more than they themselves cost throughout their lifetime. "They deserve it more than you." When a work section is hit hard, their former employees are still paid way more than you, and you're accused of being a waste of finance. "You're just lazy." "Isn't it just displacement of economics?" "You're a parasite!" "You're a tax moocher!"
I think the biggest insult I got was from my cousin just before she blocked me. I had made some unkind statements about a certain presidential candidate on Facebook. I have several Facebook friends all kinds of different opinions, beliefs and backgrounds. Most things I put on facebook are upbeat and positive. I don’t block my friends whose opinions are different. I’m an independent I believe we’re all entitled to our opinions , beliefs and choices. My cousin was upset because a positive person like me has such negative things to say about a certain candidate. She told me I can’t have it both ways and that perhaps my negative attitude is what’s causing me so much pain and suffering. Then she unfriended me. I’ve been in pain for years. I don’t think it’s because sometimes I don’t care for someone’s attitude , actions or opinions. If I’m mostly a positive person that doesn’t change because I express not so nice feelings and thoughts about someone. It just makes me human. Not disabled just human. I found that quite insulting to blow off my condition to not liking someone.
Here's a quick tip: if you're abled, do not ever do anything but ask us a question about our experience. We could not be any less interested in your statements, because you have zero clue what you're talking about. If you act like you know nothing, since you do know nothing, you can't go wrong. If you act like you know anything, we will cut you out of our lives so fast you won't even see it happening.
I quit my call center job after a couple weeks of working and was in so much pain I had to beg my boyfriend to let me quit and rest. He hesitated, he really wanted me to keep working. I gave him my paycheck and he had the audacity to tell me that "thats life" or "pain never stopped me from working" he works from home half the week and ive never ever doubted how hard he works. He knows about my pain. And i do everything in the house to make up for me not working and im constantly guilty and in pain. But of course im just "being lazy" or "just not trying hard enough"
It's actually hilarious to hear that people always say "Go vegan, it'll cure you" because I've been vegan a long time, so instead I get to listen to people blame my illnesses on veganism
Gp said have u tried yoga meditation. Breathing exercises or pot. It's all so annoying. I have cfs and fibro and other illness. They think ur lazy or over the top.
“Everybody has problems, not just you. Why are you always complaining?” “Well, I’m sure you could do it if you put your mind to it!” “You just need to get out and get some exercise, then you’d feel better!” “Go out and get a job! Stop being so lazy!” “ Must be nice to not have to work and be able to lay around all day!” And my favorite, “you’re always dwelling on the negative! Try to have a more positive outlook!” These are comments that I personally get. I have depression, anxiety, PTSD, ADHD, possibly autism, on top of several chronic physical problems!
HELLO I THINK WE ALL ARE GOING THROUGH SOMETHING IN OUR LIVES JOURNEYS AND CHALLENGES WHATEVER IT MIGHT BE LIKE A DEATH OF A LOVE ONE THAT HAS PASSED AWAY OR LIKE HEALTH ISSUES FOR INSTANCE PHYSICAL HEALTH,MENTAL HEALTH OR WHATEVER THE HEALTH ISSUES MIGHT BE WE MIGHT NOT BE ABLE TO SPEAK IT AMONG VIDEO AND TOPIC THAT WE ARE LISTENING TO BUT VIDEOS AND TOPICS HELPS SOMEONE AROUND THE WORLD AND GLOBE OF ALL AGES AND WALKS OF LIFE JOURNEYS I FEEL YOUR SPIRIT AND HEART EVEN PAIN OF ALL AGES AND WALKS OF LIFE JOURNEYS I MIGHT NOT SPEAK WHAT I AM GOING THROUGH IN MY LIFE JOURNEYS BUT I CAN SAY IT RESONATES WITHIN MY HEART AND SPIRIT HEAVENLY FATHER PLEASE COMFORT ALL OF YOUR CHILDREN EVEN THOUGH THEY ARE ADULTS AROUND THE WORLD AND GLOBE OF ALL AGES AND WALKS OF LIFE JOURNEYS HEAVENLY FATHER CONTINUE LOOKING OVER ALL OF THE UA-camR AND UA-cam PEOPLE AROUND THE WORLD AND GLOBE IN JESUS NAME
Yay, so you got my binging!!! 🥳 really, truly amazing content! Again, if you ever feel up to it - please DM me. My channel should launch within the month. My goal but you know, plan for those chronic illness expectations vs reality 😉 Wishing you well!
I don't expect people to say everything in the right way, most people do mean well, but really you don't have to say anything. Just accept me as I am and don't try to fix, judge or diagnose what you can't understand about me. I appreciate your asking :) Thank you.
I had someone genuinely shout at me when I said I was never going to get better. She told me I was being negative and was *pissed* when I said no, it's not negativity, it's reality. Being positive for me means accepting that I am sick, there is no cure and that that is ok. I'm happy being who I am, whether or not I'm sick, and I can have a positive outlook while also accepting all parts of myself, even the sick and painful ones. It would be far worse for me(personally) to always hope for a cure that doesn't exist. My DNA is broken, theres no fixing it so instead of expending my limited energy towards worrying about it, I'm going to live
I'm really sorry that's so stupid.:/ I've actually had this too.
I feel the SAME way!!! I'm sorry too tho fucking people 😢
I guess for some people it is just unimaginable that someone living a different life than them could be happy, when they themselves are scared of what could make them different
I suffer from cronic pain and I hate when people say stuff like "Oh you'll feel better soon" or "Have you tried this oil?" "You don't look like your in pain"
“I have a chronic condition called POTS and EDS”
“Oh... get well soon!”
-_-
Me too! Haven't been told that yet but I'm sure it'll happen at some point...
I've got EDS and I parked in a disabled space and a man started arguing with me because he didn't think I needed the space. He said a disabled person needs it. I asked him what a disabled person looks like and after a lot of shouting from him he said that he hopes I wake up disabled one day!!
@@dropdeadfred73 Sometimes I wish there was a way for us to share our conditions with those who act like this! Or those who keep asking when are you going to feel better. Because as we all know...you don't get it until you "get it"!
I’ve got EDS (in diagnosis limbo) and someone recently asked me “Is it ever going to get better or improve?” And like you know I hope so, if I did my physio more consistently it might improve a little, maybe someone will invent a world changing treatment in my life time, but it’s probably just going to get worse and worse. Soooo I wish he didn’t ask that or at least ask it like that
I confided to my coworker, and she said, "There's so many things _wrong_ with you. Are you sure it's not all in your head?
Other suggestions: "Have you tried acupuncture/yoga/meditation" I'm not butthurt, but I just don't talk about my illnesses to people that much anymore, if at all.
“Another thing’s wrong now? You have all these random issues.”
@@juliethomas2963I can relate💯
Being chronically ill makes me feel like constant liar --- like I'm afraid that when I get those rare good days where my symptoms are less intense I can't actually enjoy it because people question whether I'm liar or whether my illness is as bad as it is, on a daily basis.
The other thing is, if you have a mental health issues, doctors can get so dismissive about your physical health issues because "it must be stress." But see, non of that actually fixes the problem, and it just leaves me both feeling crazy and also continual suffering because your issue was never actually treated.
I have chronic fatigue syndrome and am sick of people commenting on my food and suggesting diets :(
It’s tiring, I have fatigue from a chronic illness so not the same thing, but I also have one of the most restrictive diets there is, and people act like I could actually handle more restrictions even tho I’m constantly on the edge of an eating disorder, my gastro didn’t even consider sending me to a dietician after prescribing this nightmare diet *sigh*
Ikr?? I rat literally three things that DON'T make me feel sick: lettuce wraps, turkey burgers and tuna fish. Those are the three things I eat 80% of my life now, the other 20% would be the occasional eating out.
My sensory issues makes it so if I eat a food I'm not in the mood for I will throw up and my stomach constantly hurts so I have to be careful what I eat and my bf never ever listens. He doesn't understand the concept of chronic pain and eating disorders. I told him that he could have chicken Alfredo for dinner one day and I'll get something else. He was paying so I said if he didn't want to buy something else for me that's fine and I'll just find something at the house. And he went "like ....it's just food. Just eat it." I looked at him with my eyebrow raised and he still didn't understand exactly what was wrong with what he just said
@@littlebear3554 people act like we don’t wanna eat it. When it really breaks with inside because we can’t
I've heard 90% of these 😩
😩😩😩
My dad has chron's disease and girls are like "well try having period cramps" yet the stomach pain he gets is 10x worse, accompanies diarrhea, nausea, and vomit. Also being bed ridden. I have a period too and that doesn't happen when I get period cramps and it doesn't hurt as bad as the pain my father experiences. Happy father's day.
His doctor told him to do yoga but he had a grand mal seizure a while back and can hardly walk so like...
Alexis Collins my IBS cramps are a million times worse than period cramps. Bowel cramps & spasms totally top period cramps on the pain scale.
Masquerading As An Adult my dad has never had period cramps so he wouldn’t be able to tell me 😂 I’m just assuming
I think it depends, I’ve had both, because of some treatment my periods are mostly fine but they’re bad enough I can’t move for hours, two months ago I couldn’t stop screaming, but I’m allergic to pain meds so I just cross my fingers that the neighbours don’t panic and contemplate a hysterectomy, on the other hand, my digestive system has also left me screaming in pain (and I actually have a quite high pain tolerance) but for both there’s always diff levels of severity every single time, I figure once it gets to the point that I end up screaming uncontrollably the comparison game just doesn’t matter, luckily I’ve only had that level of pain like idk less than 20 times?
I despise when people ask me every single conversation we have if I’m recovering or things along the lines of that they hope my chronic illnesses fully go away soon. It fully crushes/frustrates me because I’m quick to say “I’m hurting but I’m okay” when in reality I want to tell them that I no longer can enjoy food, I no longer have the energy I used to, I have pain every single day and it’s all things I see doctors to manage because it’s life long. It won’t go away and them telling me to eat organic fruits and veggies or to try exercise won’t fix me. It only overwhelms me and makes me think of “what have I done to end up so ill and in pain” or even makes me desperately think of “what will it take for people to not treat me as some delicate crazy patient that can’t take care of themselves”
They just want you to get happy for THEIR peace of mind.
It's really hard to find the balance of presenting positively enough that people don't freak out and get super uncomfortable (and make more work for you).
But also to present negatively enough that they don't just think it's no big deal and everything's fine, they don't need to really pay attention and can just blow the topic off.
@@determineddi2044 it’s a desperation for some of them to try and help. It’s hard to see a loved one struggle. Nonetheless I love and appreciate them regardless despite my frustrations at times when I hit my mental lows.
@@SpectrumOfChange for sure
Some people honestly mean well when they say these things. I try to educate that the #1 symptom of living with a chronic illness can be guilt. Those with a chronic illness have to try so hard just to live a daily life and we don't know day to day what that might be! If someone says "Oh, I get tired too." Or "I wish I didn't have to work!" Is that supposed to make me feel better about myself? NO! I'd give anything to have a job. I don't expect people to say everything in the right way but really you don't have to say anything. Just accept me as I am and don't try to fix, judge or explain what you can't understand.
How do you deal with the loneliness? I lost all my friends once I started having to go into the hospital a lot, and I'm not as fun at parties anymore. A former college friend of mine came into my workplace, and asked me how I'm doing. Well, my dad passed away and I've been struggling with Lyme disease. My friend said, "oh, but are you okay?" Really they all scattered like roaches the first time I was in the hospital. I try to be positive, but it can only last so long when I'm in agony.
Something I’ve found really helpful is connecting to other chronically ill people or specifically people with your condition through groups on Reddit/Facebook/Discord or local support groups. It’s nice to not have to explain yourself so much to the people you meet there. In a group like that everyone is the friend whose been dealing with some sad shit, so in turn no one is the friend whose been dealing with the sad shit, and it doesn’t feel so heavy. Also there are lots of people who aren’t chronically ill who are willing to hold space and understand different needs and ways of living while also just looking to have fun together. It just takes a while to find them sometimes. I recommend joining a group about a hobby you are interested in that runs often and has a drop in aspect to it, so if you aren’t feeling well it’s no big deal if you miss it. Loneliness sucks and is sometimes unavoidable, but I’m sure there are more people out there than you might think who would love to be your friend
I'm not trying to be mean, but if you ever had any before in your life where you did have friends, and then you became sick and lost them, then you are so goddamn lucky that I would kill to be you. My first memory of my entire life is having an allergic reaction, and nobody around me caring at all. That has been every single day of my life since I popped out of my mother's broken body
i'm very angry - i don't deal with the neglect, rejection, etc. I am not lonely, i like myself and i'm creative when i have the energy to move. I hate these attitudes that i can control this - believe me , i'm a perfectionist i woulda shot this thing decades ago. (ME and Fibromyalgia)
I’ve heard most of these from my neurologist and GP lol
Rachy H me too. So sad. Have they told you, “it’s all in your head”? Love that one. Why yes! It is in fact all in my head… LOL!
Same!!!
It got "of course you're gonna feel pain when you think about it. The medications (I get small doses of medications for chronic pain) isn't good for you, just have to convince yourself that it doesn't hurt and it won't"...
I'm tired of being called lazy. Fatigue and laziness are totally different; I want to do things.
Totally!
Similar experience here
Yup. My mom just said “its not that, its lack of motivation” after I explained I literally have a checklist in my mind of things I need to do to organize my space, and the desire to, but am PHYSICALLY UNABLE. She cannot keep herself from projecting her own undiagnosed-adhd world view onto me… I’m getting so sick of it.
I am 16 with arthritis and pots syndrome this is 100% everthing people say to me when I say I have a disability and a chronic illness the worst one is when I sit down on a chair and people say u don't look sick so stand up and let people older than u sit down. The only reason I am sitting down is to not faint and embarrassed myself in front of people so yes I need to sit down
maeve young I also have POTS, scoliosis and problems with all of my joints. When I’m in church Yknow sometimes I can’t stand or kneel the entire time cause I get lightheaded or my knees start locking up or whatever problem it is that time so I sit down and oh the dirty looks I get. Even my sisters have said stuff like oh you’re young you can kneel and I’m like sorry should I tell my heart and blood pressure to start working for the literal first time in my life? None of my illnesses are physically visible. They’re all invisible and most people just don’t understand what I’m going through because I’m so quiet about it in my day to day life
(Sorry that ended up being longer than intended)
Im sorry. But when the people closest around you and family STILL wont even remotely try to understand....I WILL get pissed. How about family who have pain issues STILL think that youre making it ALL up!? Cutting ties with everyone will land me in the nursing home where I will die for sure! At least i have a few close good friends.
So many people try and blame my issues on the fact I'm vegan. It's so annoying. I get people who have a go at me for limiting my sugar because they don't believe that limiting sugar helps my symptoms a little
If you weren't vegan, you'd have people telling you to go vegan and that it'll cure you. You can't win
I just commented about this and then saw yours lmao. If you aren't vegan you should be, and if you are vegan it's the problem. There's no winning
I hate when other people try to teach me about the condition I have. Also I hate when they say "You're too young to have all that." 🙄
I hate when people comment on my diet because I eat an increased amount of sodium to help manage my POTS and people point that out like “that’s so unhealthy. You can’t eat that much sodium, it’s bad for you” actually.... it’s helping to keep me conscious
Heyy a fellow POTSIE
Though I saw a BRILLIANT comeback.. so when someone says , inevitably, 'you don't look ill ' just reply with.... 'and you don't look like a doctor!'
Yeah but the problem is that doctors say "you don't look sick" too lol
@@vi4670 And then you know that's a bad doctor
@@limiv5272 exactly Limi
'You've just gotta be positive and strong' - my sister 🙄 Yea for 8 years I've been in 24/7 pain with fatigue and other symptoms but still managed to survive and keep striving for my goals, even though it took much longer, that's the definition of being strong and positive. So when I complain sometimes it's because my pain and other symptoms are really bad, not because I'm a 'negative nancy'. Most don't understand because our suffering isn't visible 😔
I just love when healthy people close to me in their 50s+ constantly say, even randomly out of the blue "Just wait until you're my age" "Oh, you're so young, wait until you're old" etc in a way that implies I'm perfectly healthy and have nothing to complain about solely because I'm in my 20s. Those same family members couldn't stand a GOOD day in my shoes.
"JUST LOOSE SOME WEIGHT!" Yep. That would change my genes on a cellular level... Idjits. #eds #ehlerdanlossyndrome #hypermobility
Isn't it sad that most of us have heard these (and worse) lines from the doctors we finally were courageous to confide in? My first experience seeking help, after years of knowing something was off but pushing on, the doctor looked at me with a grin and said 'you're young, blood's great, you are as healthy as they come, just cheer up' - while I was in front of her feeling suicidal due to intense pain and fatigue. That same doctor keeps getting awarded by organisations and people keep recommending her to me. I hope she was kinder to others.
Hey, those are exact same words than my doctor said to me!
Sarkastic: "Maybe it was in their workbook at school!" (where ever they got that degree which gives them "rights" to start unvalidating other people's pain/symptoms).
It is so complicated, for so many reasons, but I eagerly await the day when pain and fatigue can be accurately measured.
I originally wrote MUCH longer comment about the doctor I just quit seeing after a year of neglect and gaslighting. A doctor that everyone I know RAVES about. I decided not to subject you to my very very long comment, but while I don't know your personal experience with your condition/s, I can relate on some level. I was ignored by doctors as a child and finally decided to advocate for myself after 15+ years of worsening symptoms, just to get treated like shit for a solid year by "the best general practitioner in Jefferson county" I just started seeing a new doctor, who prescribed me a medication to manage the condition I had to pull teeth for most of a year to get evaluated for and diagnosed with, and who doesn't see it pointless to diagnose and treat the other two conditions. OG doc's favorite phrase was "Well you have fibromyalgia, you're going to be in pain anyways" as her reasoning for refusing to look at my symptom lists, prescribe medications FOR FIBROMYALGIA or send out referrals. And when referrals did get sent out, one place had shut down, she lied on the referrals, and they took 3-12 months to even get sent out
Please give us her name. We need to start outing these “doctors”.
I’ve heard all of these. Latest really bad one was boss said “YOURE NOT BETTER YET?”. I was taken aback. I mean, I have times I don’t feel as bad, but I will always struggle.... I’ll never be “better”.
I find the worst thing is when friends of mine tell me to 'think positive thoughts and set your intentions and good things will follow! '
@@User-q6x3b Too right. They're called invisible illnesses for a reason.
my boss allways called me a crybaby for not being able to deal with pain when something happened... then got diagnosed with fibromyalgia.. and now he says my faking shit and that im "catching" everything i read or hear... what a good place to be....
This sounds illegal to me.
I swear you would be protected under the disability act & he could be in serious trouble for this.
Hope things are better now.
Yep, that is a report case. Do it when you leave!
I have to be on a low sodium diet and am still in school. We had a classroom party and obviously had to count sodium amount. Having to look at labels and stuff was embarassing enough but my friends were also just getting annoyed with me and making fun of me and saying i would be fine if I went over my limit. No fam, not how it works. One of them even responded to me telling them they don't understand with "I dont understand? your saying that to someone who could eat one wrong thing and immediately get diabetes." yeah you say while stuffing your face with every food item you can find meanwhile I have to closey monitor every single thing that goes into my mouth. no dear you dont understand
I actually don't mind unsolicited advice. It has led me down some pretty interesting studies that sometimes have helped. The thing that bothered me was being called a hypochondriac by a few close people. That stung a little.
Yes, my mom does think that it is all in my head. It is truly hurtful. My friends are great!
Wow! Brilliant video 😀 I meditate, I do yoga, I use CBD oil, I eat mostly healthy and guess what? I STILL have MS! Found this channel, blog and twitter and insta via a bbc 3 vid! My pet hate is people saying “oh you look great!” I used to try and politely laugh it off but now I just reply “well I FEEL terrible” 😂 👍💜☺️
"you look great" is THE WORST :|
Love this!!
My "favorite" question, besides yours, is - Are you drinking enough water?
Get that all the time by health care providers and nosey neighbors etc. and the "8 glasses/ day" is such a myth anyways!!
Thanks to you and all your guests for sharing!
I love "have you tried this oil or that oil" ugh
Ugh, I have EDS and I get so Annoyed when people say things like this to me and Everyone else who has EDS! Especially “ maybe you should exercise more “ “ how are you doing?” “ hope you get well soon “! “ you’re just getting old “ etc. COULD YOU PLEASE JUST STOP!
Love your video. I’m a lot older than most of you, but you have presented the incredible (ignorant) things that people say to those of us living with a chronic illness in fresh way.
Great video! This is my life with Hashimoto’s and hypothyroidism 😂🙄
yes! thank you for this video! I need to show this to everybody, not feeling alone in this is so valuable, my illness is one thing to deal with in my life but the discrimination is a whole other thing that is often worse than the illness itself for me, thank you for showing that this needs awareness!
i have atopic dermatitis and i tried to share to my friends the struggles that i have, told them if they could be understanding when we go out cuz i have a hard time getting ready everyday.
i know it's not nice not to be on time and i try my hardest to act quickly *without being stressed* but they just bombard me w questions from time to time if im done yet and i always breakdown and cry and i'm fucking tired already when i haven't even got outside yet.
My favorite "your to young"
Not in the I'm sorry you've go to deal with this and I pity you ( witch still hurts). No I mean the no that can't be it your lying/ being dramatic so on and so forth.
It hurts me deeply when folks chuckle or grin. It's dismissive. They give you that look as if you're just trying to get attention.
I'm usually a pretty calm and loving person but after 2 new diagnosies this year and 1 past one and constantly hearing these for all of them even tho I've tried every possible thing you can think of and i can still barely go on with my life, words like these really anger me now and i have to calm myself down so i don't snap at people.
Thank you for this I needed to hear other people who are struggling react to some these crazy things people say. ❤️
It’s probably nothing it’s just stress you look fine you’re too young to have this- all of the many doctors that delayed my diagnosis and treatment
I fight so hard not to start a fight with people who ask these kinds of questions..... because I know I’m too weak to win 😂😂🤚
I've actually had a doctor tell me that I'm "too young" to be taking so many medications. Been sick since I was 7 years old ma'am! 😒
Please tell me you filed a formal complaint and found a better doctor, that's unacceptable!
@@limiv5272 That was years ago, but she was actually one of the nicer doctors in the clinic I used to go to! That first appointment I had with her felt like an interrogation though.
The main doctor in the clinic however was a complete asshole who drove everyone away. I've only had to see him three times, and each time that I've seen him he was absolutely terrible! Last appointment I had with him was in a fucking file/storage room because the clinic was transitioning to a medical boot/orthotic clinic due to everyone fleeing.
I'm with better doctors now! 👍
Even though my colitis is mild to moderate I still get these same reactions. Continue to seek help for your health journeys and know you are supported and I wont tell you what to do. Some times you feel like you have to be the strong one and not let people know what's going on.
I can’t count how many times I hear, “Just power through”....umm okay!
These are spot on and make me laugh! Thank you for doing these vids- and with great attitudes.
"Is the mint oil I suggested helping?" I didn't have the heart to tell her no.
I've been told so many of these. New sub. Found you on Instagram. 💗✌
Let's face it. Milk cures everything 😂
I love milk for home remedies. No joke that stuffs amazing for wound recovery but it really does nothing for chronic illness.
Every word his true .l have xspereast it most of my life and have letters to prove it .it his down to higrnus.soory for bad spelling.well done put you can not change some peple .l am posertive ,sensofumer and that makes me look that l am ok .Thank you all who do understand all my cronic illness 's and other one's with them .in fact I am a better and clever person and happy even thow l am in cronic pain.well done for your talk.👌❤
Thanks for this video,it helps to get the conversation started about chronic illnesses. ❤️
I’ve been yelled at for eating, shamed for being against smoking weed (they don’t ask why. I’m allergic to weed. I have MCAS. Weed triggers it.) and so much more. I have people regularly grab me without my consent why I’m at work to pray the demons or illness out of me. And one time I cried out of embarrassment and they said you’re welcome. Unknown to them after they did that my stomach became paralyzed and I’m now hooked up to feeding tubes and soon IVs. And on July 13th I’m getting tested to see if I might lose my large intestine. I’m grateful people care, but never ever grab someone and pray over them why they are cashiering or helping customers. Just never grab someone. You’re not doing them a favor. I’m not Christian and no one asks me before they grab me and pray over me. I will thank you and appreciate it if you ask. I am open to it. I pray of people if they want me to. I went to church. My family is Christian and I love all religions. I love learning about them and understanding them. I just don’t identify. I’m not attacking anyone for their beliefs. I am upset I’m being grabbed when I have trauma from abuse and prayed over like I’m an accident or mistake and it’s now announced to all of my customers. I’m not broken. I’m not a mistake. I didn’t ask for this body. I spent years begging different gods to save me. And my health is declining worse. I now choose to try to make my life about helping others and doing what I love. Not because of my illness. Because I want to make an impact before I die. No one knows how long I’ll live. There’s a chance I won’t live long. Just like anyone else. So instead of worrying about it I am working to do better. And I’m upset with myself that it took me being as sick as I am to finally start. I’m not weak and I’m not an inspiration. I’m fighting to live just like everyone. Don’t isolate us and make us and us vs them thing.
Online I get people saying oh just pray he can cure you.
I've gotten people saying they'll pray for me. Lol fine by me but it isn't gonna change my reality and is meaningless to me.
As an atheist that is infuriating and insulting.They only say that to make themselves feel better about the situation without doing anything proactive to help.If they believe in that nonsense then it was their 'creator 'who gave that to us in the first place!
SO TRUE! STRESS MAKES ADRENAL SHOCK A TOTAL PAIN. ALONG WITH SHY DRAGER.. BUT YEAH.. 🙄 JUST STRESS.. OH GOSH
The comments I've experienced have been way more insensitive than this. this was vanilla. "Toughen up. you're obsessed with your body."
I'm sorry that's horrible
That is abuse!
Someone ends up needing disability money to survive.*
"My tax money pays for you!" When almost no tax payer pays more than they themselves cost throughout their lifetime.
"They deserve it more than you." When a work section is hit hard, their former employees are still paid way more than you, and you're accused of being a waste of finance.
"You're just lazy."
"Isn't it just displacement of economics?"
"You're a parasite!"
"You're a tax moocher!"
I think the biggest insult I got was from my cousin just before she blocked me.
I had made some unkind statements about a certain presidential candidate on Facebook. I have several Facebook friends all kinds of different opinions, beliefs and backgrounds.
Most things I put on facebook are upbeat and positive. I don’t block my friends whose opinions are different. I’m an independent I believe we’re all entitled to our opinions , beliefs and choices.
My cousin was upset because a positive person like me has such negative things to say about a certain candidate.
She told me I can’t have it both ways and that perhaps my negative attitude is what’s causing me so much pain and suffering. Then she unfriended me.
I’ve been in pain for years. I don’t think it’s because sometimes I don’t care for someone’s attitude , actions or opinions. If I’m mostly a positive person that doesn’t change because I express not so nice feelings and thoughts about someone. It just makes me human. Not disabled just human. I found that quite insulting to blow off my condition to not liking someone.
Here's a quick tip: if you're abled, do not ever do anything but ask us a question about our experience. We could not be any less interested in your statements, because you have zero clue what you're talking about. If you act like you know nothing, since you do know nothing, you can't go wrong. If you act like you know anything, we will cut you out of our lives so fast you won't even see it happening.
I hate when doctors say, try medication, eating healthy, mind over matter, exercise, yoga, not just strangers...my doctors!
And we pay for that!!! Hits head against desk :/ If it helps any I've been there and I'm sorry you were too
Every time my mother phones she says 'hope you get better'. I have a degenerative illness. 🙁
“oh just take some ibuprofen” me (with endometriosis) : -_- hUh?!
I quit my call center job after a couple weeks of working and was in so much pain I had to beg my boyfriend to let me quit and rest. He hesitated, he really wanted me to keep working. I gave him my paycheck and he had the audacity to tell me that "thats life" or "pain never stopped me from working" he works from home half the week and ive never ever doubted how hard he works. He knows about my pain. And i do everything in the house to make up for me not working and im constantly guilty and in pain. But of course im just "being lazy" or "just not trying hard enough"
Brilliant video! I hear these all the time too. The guy in yellow seems so sweet. You’re a handsome guy! 😎
It's actually hilarious to hear that people always say "Go vegan, it'll cure you" because I've been vegan a long time, so instead I get to listen to people blame my illnesses on veganism
I had a lady tell me to eat a box of raisins everyday and my acne will go away.
This happened at Walmart...
“I’ve never heard of it” so therefore it doesn’t exist.
I've heard so many of these
I’m 15 and these things annoy the crap out of me
Does stress make it worse yes but it’s not just stress
Gp said have u tried yoga meditation. Breathing exercises or pot. It's all so annoying. I have cfs and fibro and other illness. They think ur lazy or over the top.
I have hear just about all of these! 😂
Most of these aren't the common questions we get
What are some of the ones we missed?
“Everybody has problems, not just you. Why are you always complaining?” “Well, I’m sure you could do it if you put your mind to it!” “You just need to get out and get some exercise, then you’d feel better!” “Go out and get a job! Stop being so lazy!” “ Must be nice to not have to work and be able to lay around all day!” And my favorite, “you’re always dwelling on the negative! Try to have a more positive outlook!” These are comments that I personally get. I have depression, anxiety, PTSD, ADHD, possibly autism, on top of several chronic physical problems!
My life with severe hydrocephalus
Oh the diet comment is soooooo common and I hate it... It makes my blood boil even if the person "means well"... 🙄
Aaaaaii crohn's disease...
Crohn's is horrible
How do you find out if their treatment is not working
I have heard all this gets so annoying
HELLO I THINK WE ALL ARE GOING THROUGH SOMETHING IN OUR LIVES JOURNEYS AND CHALLENGES WHATEVER IT MIGHT BE LIKE A DEATH OF A LOVE ONE THAT HAS PASSED AWAY OR LIKE HEALTH ISSUES FOR INSTANCE PHYSICAL HEALTH,MENTAL HEALTH OR WHATEVER THE HEALTH ISSUES MIGHT BE WE MIGHT NOT BE ABLE TO SPEAK IT AMONG VIDEO AND TOPIC THAT WE ARE LISTENING TO BUT VIDEOS AND TOPICS HELPS SOMEONE AROUND THE WORLD AND GLOBE OF ALL AGES AND WALKS OF LIFE JOURNEYS I FEEL YOUR SPIRIT AND HEART EVEN PAIN OF ALL AGES AND WALKS OF LIFE JOURNEYS I MIGHT NOT SPEAK WHAT I AM GOING THROUGH IN MY LIFE JOURNEYS BUT I CAN SAY IT RESONATES WITHIN MY HEART AND SPIRIT HEAVENLY FATHER PLEASE COMFORT ALL OF YOUR CHILDREN EVEN THOUGH THEY ARE ADULTS AROUND THE WORLD AND GLOBE OF ALL AGES AND WALKS OF LIFE JOURNEYS HEAVENLY FATHER CONTINUE LOOKING OVER ALL OF THE UA-camR AND UA-cam PEOPLE AROUND THE WORLD AND GLOBE IN JESUS NAME
“My fried had that but she she went to see Doctor so and so and he’s cured her.”
Have you tried putting yourself in rice?/j
Yay, so you got my binging!!! 🥳 really, truly amazing content! Again, if you ever feel up to it - please DM me. My channel should launch within the month. My goal but you know, plan for those chronic illness expectations vs reality 😉 Wishing you well!
MS g@ng
What do you like to hear then?
I don't expect people to say everything in the right way, most people do mean well, but really you don't have to say anything. Just accept me as I am and don't try to fix, judge or diagnose what you can't understand about me. I appreciate your asking :) Thank you.