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What NOT To Say To A Disabled Person [CC]
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- čas přidán 14. 02. 2019
- What you SHOULD say to a disabled person: • What You SHOULD Say To...
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Ah, yes. All the yoga and kale shall cure my deafness and pain/fatigue!
I agree, CFS/CPS, mentall illness, and hard of hearing (ness?) can easily be fixed with milk, yoga, exercise (bad idea), and of course the infamous just sleep more often... ha ha ha ha ha ha he he he h- no.
That is mood
Moderate exercise is actually very beneficial to a lot of conditions and disabilities!
But I mean, it depends on the individual of course. For some people it might be harmful, depending on how it affects them.
So the idea in itself isn't so bad, but to think that the affected individuals haven't thought about that already... Puzzles me
Not kale, that's soooo last year. Snorting some ground up shark fin is the new cure!
The Pink Himalayan Salt fad hasn't ended. Everytime is comes up my eye twitches.
In relation to my chronic fatigue; "Have you tried sleeping earlier?"
Gee Barbara I could have never possibly thought of doing that
Usually this is accompanied by suspicious shuffling outside your door in the early hours to see if you are secretly up watching film marathons all night or having really quiet parties..
Followed by the loud morning noises in a vain passive aggressive effort to make sure you are awake 'at a civilised time.' Seriously, do people really start the day by announcing that they are awake to everyone else?
@@paulgascoigne5343 My family does this. Literally for years. If they ever wake up in the middle of the night they come listen in to see if I'm awake (but it's okay if THEY can't sleep!) and then in the morning they will stomp around and be excessively loud. Never mind the fact that most of the time I wake up in the middle of the night is because they can't quietly wake up to use the restroom/ get water/ etc.
I love "you just need to find a better sleeping schedule" 🤦♀️
Same thing happened to me but in relation to my insomnia. People are so stupid sometimes. Like, nooooooo I could never think of that 🙄
“do you get enough rest?”
thats literally all i do janet.
I love your videos in general, but this is now my favourite rant. "SHOCKINGLY JANET, THE WORLD HAS MOVED ON SINCE LAST TUESDAY ". Didn't expect to laugh in the midst of nodding in agreement. 😂
My sister's favorite thing to say was, "Get over it," when I was depressed. Then she got cancer. When we talked about things she mentioned her cancer. I told her to get over it. She said, "good one." After that we really talked about depression and cancer. To the advantage of both of us. So glad we did before she passed away.
I know this comment is two years old, but I hope you're feeling better now.
"we don't all get depression sometimes. its a clinical diagnosis and it should be recongized as such." THIS!
I once told a family member I was depressed, and their response was "No, you're not." Thanks, that has magically fixed me.
This is a tough one. Everyone does get odd moods and can feel down suddenly and theres people with long term depression where the cures are simple like going out and exercising but theres also people that need medication and it isn’t just reactions to the environment. Unfortunately finding out which type it is is difficult and everyone sees things from their own perspective and for some its not bad where others its nasty. It’s the difference between a taster spoon of marmite and drowning in it(uses your own nasty food for the example). Explaining it in those terms might help them understand.
Anyone can experience depression especially in a very very hard time of life but not everyone has DEPRESSION as a condition ! Just like everyone can experience fatigue but not everyone has CHRONIC fatigue 💗💗
@@sbjade9812 But also being temporarily sad or grieving are different that depression as well.
@@amandaperl1624 ive actually started physically slapping people when they say that to me.
why because i then deny i slapped them and i prove a point that I DONT HAVE TO SHOW my medical history and docters diagnoses TO EVERYONE as proof of my disability. just like they have no proof i slapped them.
they soon change there mind. ^_^
People 👏with👏health👏problems👏feel👏bad👏both👏before👏and👏after👏their👏diagnosis!!!!!!!!!👏👏👏👏👏👏👏
I am so 100% on board with the hilarious levels of sass in this video.
Exactly! I have a mental issue and my family is not supportive of me getting a diagnosis because it will be a burden on their reputations
@@noelleragsdale37 we meet again dear duck. but yeah same but with my school.
This is something I really feel. I had previous housemates say I couldn't have an autistic meltdown because I didn't act like some of their autistic friends, and they used the fact they were institutionalised because of mental illness against me not having a diagnosis, to say I was hurting "real" disabled people. I only brought up my self DX and being on a waiting list for it because they pretended to be my friend and gaslight me for two hours after my meltdown, and then the next day said something indicating they did it to shut me up. After having family ignore your problems growing up, when you finally get a name for your experience of course you're gonna use it as explanation, with or without diagnosis.
mel o I’m so sorry you’ve had that experience. I agree that having a diagnosis can be a good thing, despite be stigma. Having someone tell you that your issues are real and have a cause is a very validating experience!
Twitchyboi ugh, I’ve had two doctors tell me that I “probably” have something but they don’t want to official diagnose it because of the stigma attached. And I understand, because CFS and fibromyalgia are often treated as people being hysterical, and then when you have other problems, doctors will write it off as being related to one of those issues instead of trying to find the cause. And that’s a problem, but it doesn’t mean it’s the fault of the diagnosis!
Ok so I had a family event this past weekend so I've been hit with: 'Do you have to use your disabled parking permit, a *really* disabled person might need that space.' 'I wish you wouldn't take so many pills' 'I never knew you could have a naughty side in that wheelchair of yours' (what I'm a sweet and innocent flower because I use a chair?) 'Do you really *have* to use those sticks in here' 'I've never heard of that, are you sure that's a thing?' 'Oh well, I'm sure you'll find a way to get passed all this' I might have gotten stabby if my 11 year old cousin hadn't started sassing and shading them all in my defense!!
Your cousin is good people.
Are they even family at this point?!
Omg your family is very annoying I would have snapped probably if I where you.
When the 11yo is the most woke in the room
That is a lot of crap talk for one afternoon!
"when you get a job..." again and again
When Ive literally just had a note from the Doctor to say im not fit for work..
Salty Jessica is one of my favorite Jessicas. Delivering soul-cutting sass and crushing remarks with a beautiful smile and perfectly styled hair. Love it.
Same here
Don't forget the lip-popping/smacking
I need a GIF of the 'sush your face' for everyday life.
twitter.com/JessicaOOTC/status/1096441328098000898 Here's the "don't do that"
Anuka yessss!!!
yes!!
BAAHAHAHAHA! fantastic idea!
omfggg yea
Oh, there's a list!
My mother complained how thin I was getting but when I admitted to being anorexic, she said "No, you're not". Thanks mother, stomp on those 13 years of pain.
My friend turning to me saying "I think I have PTSD, too. Yeah, I keep cringing when thinking of things back in High School." Yes, friend, twist the knife while you're at it. I merely feel guilt and shame and have painful panic attacks at the thought of the sexual abuse. Oh, and complain about your "insomnia" while you're at it. You "only" slept 6h last night? Try 3 days.
Doctors, family, and random-arse people telling me how good it is with low blood pressure. Good? I keep having seizures from it! I'm bloody aiming for you next time I fall then.
Honestly, the only thing I wish people said when I open up about some diagnosis is; OK.
OK is definitely the perfect response.
I hate when people say “I only got 6 hours” like, boi, as someone with PTSD, 6 continuous hours is a *good* night. I don’t have insomnia, but I do definitely have sleep issues because of PTSD and other people always belittle it.
Also I relate very much to people saying that feeling bad or guilty or upset is PTSD. Like. Um. NO. Come back to me when you’ve relived all the pain and emotions and various other unpleasant sensations that came with your trauma ALL OVER AGAIN IN THE MIDDLE OF CLASS, KAREN
"I'm bloody aiming for you next time I fall"😆yes
My mum is very good at dealing with me and my poor health and today a friend decided to tell her that she's just "an enabler" stopping me from just getting better on my own, something that basically everyone we know often tells her and it drives me nuts! No I'm not just "putting it on", I really am just unwell a lot of the time and have mental health/learning disabilities that often get in the way of every day life. Don't take it out on my poor mother!
yes! While I have a chronic illness (RA) my husband and I both step up and help our daughter with her illness. Far too often relatives would say "She should go to the ranch" (as per Dr.Phil) or "Why do you keep helping her?" Her diagnosis for one! Her therapist and physicians would never say "Well, sink or swim!" NOPE. I wish people could understand that if she had ANY other illness, they would be "You are the best parents". Instead we're enablers, even though everyone medical is "You are helping her so much, and she is doing better all the time" (also thank your mom, as parents, a thank you means so much... and as parents we're never not helping our child).
I wish my mom would just believe me and let me get diagnosed instead of telling me that I am a hypochondriac and nothing is wrong with me. I have hallucinations and hear voices and I have been having heart problems and low blood pressure to the point where I will pass out. But my mom doesn't believe me even though she has seen some of these symptoms in person. I passed out in front of her and when I finally woke up she told me to quit acting like an idiot and get up.
@@nyeterra1708 Firstly that sounds awful, my condolences with having to deal with all that. And have you tried talking to your Dad or a school nurse or anyone who isn't a random stranger on the internet about it?
@@acedragon1456 my dad will agree with anything my mom says and I'm not in school anymore. I am also most likely autistic and have adhd according to my therapist but my parents won't allow me to get tested for that either. I'm on disability for PTSD and agoraphobia so there is no way I can move out either.
@@nyeterra1708 If you rely on your parents for transport look into alternatives like public transport, friends, next door neighbour, etc and then make an appointment with your GP
"So how much longer are you going to be in therapy?" o m g
My mom once said “I just don’t want you to end up bed bound like those people in that chronic fatigue documentary.” Well guess what? Neither do I, but I only have so much control over my fatigue levels....
Yes I've had that too.. they then decide the best cure for chronic fatigue is to begin a boot camp regime where you exercise all day!
I have fibromyalgia and deal with fatigue every day. Sometimes I need to get bed rest in order to recover. I can't tell my mom about it though because she will start to think about how what kind of life is that. Ever since I had to stop working, she just can't imagine life without having a job. She makes it all depressing.
if WISHES could cure diseases we'd all be in the Olympics. But instead, acceptance and "well what can I do?" helps. No life is more important than another. And nothing anyone does, is going to matter in the future. (I always joke that Yellowstone is over 100,000 years over due to BLOW BIG. it puts life in perspective).
Oh my god my mum pulled that one up on me a few days ago. Like it's in my power to control my energy levels and my getting better/worse is purely up to my mood.
"Can't you just try to walk?"
Funnily enough, no. That's what my wheelchair is for.
At a doctor's office, using an AAC app because my voice was gone (I lose it often and easily), my doctor: "Can't you just talk? Put that down. Talk."
People are bizarre.
I can remember repeatedly going to the gp as a teenager with horrific period pains. I often got asked if I'd tried ibuprofen, and told to just try exercising when I literally couldn't move.
Turns out I have endometriosis. My periods are worse than childbirth, and I can say that definitively because I've given birth with no pain relief. Still been told that "they can't be that bad."
@@fe5018 It's horrific, but doctors just wouldn't listen. Even now, I've had doctors tell me it can't be that bad when they know my diagnosis, and after I've told them that childbirth without pain relief is far less painful than endometriosis.
I had issues with ovary pain and I went to the doctor and she said that it was just my anxiety. I was in so much pain that I would just lay in bed and cry and there were days I couldn't walk. The thought it was endo, I ended up needing surgery and I was mostly okay after that. People are so rude. I'm so sorry.
@@fe5018 I got diagnosed prior to having my child when a young, female doctor saw me and referred me to a specialist. Had my child a couple of years later because I was worried delaying would result in infertility. The treatments suck though, and saying "I'm in a lot of pain" should be enough to get care, not just get dismissed.
Strange Kat
Ugh, endo sucks big time!
It has only really hit me in my 30s, but it just gets progressively worse...slowly but surely. I‘m basically in pain every morning, when I wake up, half of the month. A week around ovulation and at least one around my period. I‘m counting my blessings, that it mostly goes away (or gets bearable, anyway), after I get up, but it does do a number on my sleep quality, obviously. And there’s no point in taking pain killers, even, because their effect would have worn off during the night anyway.
Man, how I long for those days, when ‚period pain‘ was a ‚once a month‘ affair 😏
A relative said (to someone other than me cause I haven't talked to them in years) that I must be exaggerating. First off I don't talk to you, I didn't tell you anything, the only person I've talked to is my mom cause I figured she should know why I was asking for a ride to the hospital. And also the doctors don't seem all that surprised by my symptoms so other people must have them too. Now that I know that it's (99% likely) PCOS, I have been able to connect to people through Facebook who have not only experienced or are experiencing my problems, but some have had it a lot worse than me. So, no. I'm not exaggerating.
I think the worst thing a family member said to me was, "You need to ask your doctor if it's psychosomatic." This was after two knee surgeries.
@@lovelyme1068 I don't even bother with normal family doctors/ primary care anymore. I had to for a while after I lost insurance, and they missed a cancer diagnosis for at least 3 years (on top of other health issues). They used to tell me "well we can only treat one issue at a time!" as if the rest of my issues aren't always present! lol. Internal medicine specialists are much better for those of us with multiple conditions, and usually if they are the referring doctor the other specialists expect you to have a lot going on.
Wow they're both insulting you AND people with psychosomatic issues in one fell swoop
Laughing at the idea that the need for knee surgery might correct a psychosomatic condition.
Do you know what I'd like people to stop saying? "but you're so young"! Recently, frequently accompanied by "that just makes me so sad/depresses me/is so sad" like OMG Karen, shut your sad face.
Honestly, i have that with all my mental health symptoms and my heart problems like, none of this is stuff i can control so dont act like im being dramatic and don't know real pain cause im not 72 with 5 grandkids? K thx
Some people are so ignorant
I broke my glasses one time and was desperately trying to find my prescription in the over the counter ones (I couldn't) because I couldn't afford new ones. While I was squinting to try and read the prescriptions from not even two feet away, this older woman said to me "you've got young eyes, can you help me find this?" ... no. No I really can't
oh my goodness, my DOCTOR told me I was "too young" to be put on strong medication when I was 17, even though I had just had major surgery because of it and the symptoms were rapidly coming back. Next minute, I go overseas to visit my parents and end up in emergency in a foreign country hospital bleeding out of my intestines.
Yup, started shopping around for a new specialist when I got back home.
@@KathwithaK Oh my goodness! That's terrible!
Omg I hate the “that just makes me so sad” shit. Like it’s not about you
I know this is my 3rd comment on this video but I needed to share this. I sent this video to my mum because she gets as irritated as I do and there's a couple of people in my family that are saying some of these things to her. My mum says thank you so much for this video & she's now sent this video to several family members. The replies will be interesting lol.
Oof please do follow up on those replies 😂
Oh. Wow, yeah, every time I talk about having a diagnosed depression and someone telling me "Oh, we all feel like that sometimes!", it makes my also diagnosed anxiety flare up with a looping thought of "oh god, everyone feels like this, don't they, I'm just exaggerating my symptoms, I'm a big baby faker, oh god, am I really this weak as to take something so trivial this seriously and be impaired by it???" It's a very toxic loop that sends me to hyperventilation town. So yeah. Thanks for... trying to relate..?
Thanks for making this video, I hope people find it helpful and keep some f these things in mind! :D
OH MY GOD THIS IS SUCH A FREAKING MOOD
Eli Alone omg your comment made me cry! I have serotonin defficiensy and am depressed for no reason. This makes me dought the validity of my demons all the time. "We all get sad sometimes" doesn't make me feel better, it makes me feel worse.
I can relate to this so much.
In the begginning of my teatment I heard that so often and it nearly drove me to suicide because all I could think was "This can't be "normal". How do you live if THIS is living and normal? This can't be "normal". This have to not be normal". Thank god I got a shrink who is really good. Such a difference between professionals and friends/family's was of talking and nderstanding.
i too have these thoughts. but ive started questioning people even futher and going into very extream detail on how the depression effects me and asking if its the same for them too.
then at the end of it all i say "well its a good thing im not in your shoes then am i, as it would be extreamly shitty to be you"
I think my “favourite” ones are “You should pray more!” and “My neighbors cousins child had that and went to a *insert sacred place* where she prayed for 3 weeks and healed completely!” 😑 These usually don’t come from my immediate family, but a distant relative but are so annoying!
I get the "I'll pray for you" on a regular basis at my job. One lady even told me to look forward to my death once because God would cure me of my "illnesses".
OMG the number of times my Catholic family tried to heal me with prayers... My mother actually took me to a shrine/sacred spring in the hopes that Mary would heal me 😑
see also: "do you think God is punishing you? what do you think caused you to deserve this?" and "well, you've just got to have more faith! God hears the prayers of the faithful"
Of course your ill because you aren't praying hard enough..
Ermm... o...k...
Once my shrink literally told me that I would go to hell if I killed myself and it didn’t help my condition at all. In fact, I’m pretty sure that encounter was what caused my anxiety to worsen.
All the clap backs and all the sass! As if a disabled person could possibly be anything other than meek and mild. (Sarcasm and eye rolls if that doesn't translate via text. )
Trying to communicate to my mum that i thought I may be autistic was difficult. Before I finally got diagnosed (which was last week) I spent forever hearing the same thing about a cousin of ours who needs 24 hour care. My mum kept denying I was, claiming it was just anxiety (even though I had obvious special interests, a sign of autism) and finally, when the message got to her she still insisted that i was 'A person with traits of asd' rather than just autistic. I'm happy my dad was supportive of me and the school sen department helped me get seen by a psychologist. My mum is more accepting of it now which is good. Don't say that i can't be autistic because I'm not like your brother/ aunt/ cousin. It's a spectrum that can present in many different ways.
Absolutely! Best to you, Dear. Good job for advocating for yourself to get the help you needed.
Family always said I was a mistake and the reason mother had to settle. Telling someone that your friend "has the same thing and they just pulled up their boots and acted like an adult", or "stop wasting your life already" is NOT helpful! Favorite thing is when someone says its all in my head and I should get an award for being so dramatic! Like, thank you for that, now I can stop my symptoms and be just like "normal people". Ugh, no thanks!
Pamela Bruce ik you commented this a yr ago but the next time somebody says “It’s all in your head” you should reply with “Well of course it’s in my head. Where else would it be, my arse?”
But it would help THEM so much if you would. LOL>
"If I could do it you can do it!"
I see that one all the time and I hate it so much. I'm not you, am I?
Like "OH MY!!! JANET!!! I didn't know we were monozygotic twins!!". Even THEN, that statement would be inaccurate
“She just needs to eat right and exercise” in regards to my mother who had MS.... I’m still proud of myself for not punching her in the face....
Fae Nicole omg! Really?!? It must have been really hard to hold yourself from punching that person cos MS is such a hard illness!! Exercise! Wished that was the remedy for it!
I changed my diet and I exercise and guess what I still have MS! My goodness if eating right and exercise was the “cure” I think maybe I wouldn’t be about to start taking a drug every other day for THE REST OF MY LIFE 🙃 my mum saw a friend the other day whom I used to see at the gym all the time and he said “when I think she used to be on the treadmill all the time” well if you think it’s hard for yourself to comprehend, it’s NOTHING compared to the sense of frustration I feel! From running 5k to being scared about stepping down ONE step of the stairs 🙃 sorry rant over 😂💜☺️
My dad has ms and thankfully it's been in remission for several years. I'm a person of faith so when I posted something on Facebook praising God for my dad's remission a (now former) friend of mine basically peed allover my faith and joy at my dad's good news. That's why I'm no linger friends with him. People don't have to believe in the same things I do, that's fine, all he needed to say was "glad to hear that".
Drink Your Kool Aide Oh my goodness that’s horrible! No need for such outright rudeness! People are entitled to believe whatever they want. Glad your dad is doing well right now 💜☺️
I have eoe and every one kept telling me that so when I broke out crying and had a panic attack they just walked away 😭😳🤯
"Can't you just be happy?"
"Can't you get out of bed before noon?"
"Your haur is greasy."
"When was the last time you showered?"
Well, Janet, my very low levels of seratonin make these things difficult, especially when you point them out. So shut up and finish up your 6th divorce
I friggin love youuuuu!!!
Love you toooooooo!
For your next video, I have a suggestion. I ran into a friend of the family while I was working yesterday, and when I explained a bit she said "aww sweetie, that must be so hard to be in pain all the time and not know if or when it will get better". I nearly burst into tears. She didnt make the conversation all about my pain, but what she did say was so sincere and thoughtful. And it didn't require a response. Basically, you can acknowledge that someone is ill or in pain without using up a bunch of their energy with weird nosy questions.
"What do you talk about in therapy?" Uhm, that's none of your business? I used to answer this question in a general sense, but I've learned not to. What I talk about with my therapist is confidential, you shouldn't be asking about it. I don't ask you what the proctologist did. Can you show me the same courtesy, please?
And: "But is it helping?" Yes, it is! Or I wouldn't be doing it, now would I? Clinical depression (and most other serious mental health problems) do not go away with a few sessions. It's fine to ask this question once or twice to check up on someone ("Is it helping? If not, would you like help figuring out a better alternative?"), but do not keep asking it. When my family does it to me, it makes me feel like they don't trust me to be the judge of my own care, and like I am not getting better quick enough for them ("If it's helping, why are you STILL sick?").
Putting time pressure on recovering from mental illness tends to make the recovery process take longer. If you care about someone, be careful not to do this inadvertently. Trust me, people who are struggling with mental illness are beating themselves up enough about recovery not going as fast as they want it to, they do NOT need your help with this.
"But you went to 2 therapy sessions, why don't you look happy"
If I, the person suffering the mental illness, have already accepted that this is going to take quite sometime to get over it, if I ever truly get over it, why you, who do not suffer from it, can’t accept it and keep doing silly questions that only make me feel worse!?!? Don’t need anybody pushing me over the cliff, I need you to hold me why I try to move away from it!
"What do you talk about in therapy?" "You and all the other morons who ask stupid questions about my appointments with my medical team."
Mel Rose I’m sure your mom is just concerned for your well being.
Tell her that everything is going smoothly, so she will feel calm and relaxed and not worry as much.
It helped my mother while I was going thru therapy ❤️
It broke my heart seeing how concerned she was!
I didn’t want to be the one causing that :(
I used to ask my one friend what she did in therapy if she was comfortable with sharing because I was looking into it for treatment. She never really had any problems talking about it. It was just like playing Uno and doing puzzles.
Me: "that's a side effect of my medication."
Classmate: "I'm on medication and it doesn't do that to me!"
Yep. A real conversation, in class last week.
I've had horrific chest pains for 13 years. 13! (Since I was 10, I'm now 23). When I was in my teens I tried to see a cardiologist and he refused to treat me because he said I was "too young" to have heart problems. Many, many years and doctors later I may have discovered the cause, anxiety (at least for me my anxiety attacks and panic attacks feel super different). Now I'm seeing a wonderful psychiatrist and therapist and they are both recognizing my pain and helping me through it. It is so infuriating when I tell people and/or family about my ptsd (childhood stuff), depression and anxiety. They say I need to just "get over it". GEE I WISH I COULD. Or that I need Jesus, and that he loves me. No offense to people that are religious but I'm not and they know that and I wish they would stop. Sorry for the rant but this video was just so, right! Sometimes people just DON'T get it and its even worse when it is your family. Much love to everyone going through something (physical, emotional, mental etc.) You are a brave and strong person and you can do this!
Thank you so much for making this video!!!
My mom when I told her I couldn't go to university anymore bc of my depression said "I don't understand why you can't, this is just university, it won't kill you" then gave me a speech about how I'm ruining my life :)
I got something similar from my mom when I couldn't work anymore. She couldn't fathom how someone could simply not work. I apparently have no life now because I'm disabled. e.e
My mom was like, "I don't want you to go to school again; everytime you go to school, you get sick." Unfortunately, she was right.
"We're all a bit like that sometimes" ugh executive dysfunction is not laziness!! Love how you still manage to be happy and bright even on such annoying topics!
Yes, thank you!
I'm still coming to grips with my own executive dysfunction (that it's a real thing, that it causes real problems, and that it's not something "everyone has sometimes"). It doesn't help when I try to discuss my problems with family or friends and they give such a reply. It makes it seem like my struggles aren't legitimate problems.
Cousin Sue, if you think "everyone sometimes doesn't eat or drink all day because they can't figure out how," maybe you should talk to my therapist. I think you'd find it enlightening...
Oh I feel this so hard...
RELATABLEEEE
"have you tried hypnosis? maybe you haven't thought of it yet but it may all be in your head" words by the painter who did a couple of our rooms last week. He then proceeded to tell me how it really helped this one acquaintance of his with her fear of leaving the house (good for her! don't think it will fix my POTS though). Can people just... not?
Ugh my mums a fan of that one too 😕😷
"Have you tried yoga?"
"Have you tried taking a long walk off a short plank?"
I ASPIRE TO HAVE THIS LEVEL OF SASS
As a kid I would get excruciating headaches, along with many other pains and problems for unknown reasons (I have hEDS I know now). I was told by so many adults that I was "too young" to have a headache, or that my hips/shoulders/knees feeling like they were separating and on fire was just "growing pains" and me crying in bed most nights from pain was normal.... So frustrating! I still have all those issues, but I'm glad my family at least understands somewhat now.
My dad was like that when I first started having auditory and visual hallucinations among other things. He actually told me that 'everyone hears voices'
Omg I can’t tell you how often I was/am told by family I’m too young to have “all these health problems “ so very annoying!
It's hard enough when my elders would say that when I was in my 20's, especially when I was working, but going through that as a kid . . . I'm sorry you had to go through that but glad you got some answers. I really hate the "suck it up" mentality. Adults should be more sympathetic and not so quick to judge.
oh my god I've had the exact same experience. I've had headaches since I was maybe 6? and migraines started coming up the next year and every year since they've gotten progressively worse until I was 15 and woke up one day with a migraine, and by the time I got home from school it was awful. I haven't had a migraine day since and I'm 20 now. I especially hate that "everything a kid experiences is growing pains" thing, because I stopped growing by 8/9 and people STILL tried to tell me up until last year it was just growing pains (again, I'm now 20 and women tend to stop growing by now anyway- plus I'm incredibly short). FINALLY last year we saw a pain management doctor to attempt to get me on opoids for the pain and she saw me for two minutes before diagnosing me with Fibromyalgia! by that point we already basically knew I had it too, just none of my doctors cared or knew it enough. and for a few years now I've been researching hEDS because it would explain every symptom I've ever had.
in 8th grade I dislocated my left hip TWICE two days in a row at a cheer competition, and missed 3 days of school because I couldn't walk. no one listened to me when I said something was wrong, so we only found out that it was dislocated the entire time a YEAR later when I reinjured it. the only good part about that experience was finding the language to explain what my body was doing all these years. I would often say a joint felt like it needed to pop or "was out", and would frequently be hurt at cheer and need to wear a brace, but because cheer is so hard on your joints already, everyone told me that cheer was the reason my joints always hurt and I just needed to strengthen them. I'm sure you can understand how annoying and dismissive that was. luckily now we're on the path to get me seen by someone at a university to hopefully get the diagnosis. sadly, my father is still very rude and kinda verbally abusive about my being disabled all these years later, so that's not helpful at all, but my friends and mom are at least
Hey there. I have hEDS as well and experienced the same types of struggles. I know it doesn't help much, but you aren't alone in your difficulties.
One I get a lot is "You're young, you shouldn't need to take naps". I'm a 22 year old full time veterinary student who suffers with depression, which causes intermittent insomnia. Yes, yes I do need a god damn nap! Thank you so much for making this video but also including mental illness in it as well, I feel so much better knowing I'm not alone in people just thinking I'm lazy or that my depression is "just a phase".
I'm a 23 year old veterinary student and i can relate so much, you are definitley not alone. Be proud of your achivements, I'm sure you are an awesome person. Wish you all the best.
@@annamaria9867 Ye I bet you're great too, thank you so much for replying, it means a lot to me :)
I had both diagnosed anxiety and depression and a person in my life basically just brushed it off and forced me to interact with people saying I would get over it. Even if it was as simple as talking to someone so that they can take my order was still devastating, and I still felt horrible. I was pushed to do things I didn’t want to do and I’m it wasn’t very helpful. Sometimes when I look back I blame myself for being too much of a coward to voice out my concerns but I realized that I literally couldn’t because of my anxiety, and honestly even if I feel better now I’m still upset at the whole situation.
I'm a 22yo biology student and though I am mostly healthy I'm just stressed and Will proceed to nap whenever I feel like it.
Suffering from depression and being accused of being lazy is sooo annoying. It’s the worst for me when it comes from my parents.
When people jokingly say "im so ocd" or "im gonna get ptsd from this minor event"
Are you? Are you Karen? Because last time I checked you were just tidying your desk
Oh goodness. Where do I begin.
I think the worst thing I hear on regular occassion is that it's all in my head or that I'm make it up to get attention.
I dealt with severe mental illness from the time I was a small child until I was 30. The reason it lasted that long is because my parents did not get me treatment despite being fully aware that I was severely depressed so it took a lot of time to treat once I finally did get help.
During some of that time I dealt with health issues and I was dismissed as me making it up.
When I was 28 I lost my hair. Turns out I have a type of chronic alopecia that leads to me being bald sometimes and I have hair other times. During the 5 years I was bald they asked me why I was doing this to myself. When it grew back they took that as proof I was lying and openly told me so (as well as telling friends and family that I was making it up as well).
Now moving on to current things. I have dealt with chronic pain for most of my life and have a terrible immune system so I get sick all the time. In the past year or so the pain has gotten so bad that I struggle to stand or walk for more than a short while and I have been sick the entire time. Imagine having the flu and food poisoning at the same time. That's pretty much how I feel every day and have since around December of 2017. EVERY DAY. Some in my family seem to think that this is just another case of my mental illness causing me to make things up. They think I'm using it as an excuse to not visit with them. Despite the multiple doctors I've seen and tests I've done I am dismissed because I don't have a diagnosis yet so it must be fake.
I should mention, I have been totally free of all signs of mental illness for about 8 years and I have medical reports showing I am definitely physically ill. We just can't figure out what it is yet.
Not only do those of us with chronic conditions get told all kinds of terrible things, it is even worse if you have a history of mental illness. It's bad enough that it took me 15 years to finally get doctors to listen to me, some of my family is still ignoring the fact that I am actually ill even with medical proof.
There's a reason I have cut them out of my life for the most part. I need to worry about my health and focus on getting this figured out and hopefully improve so I can be the best I can for my partner and our child. Thank goodness the two of them realize this is real and they help and support me.
I was told since the age of 10 by family, friends and teacher that "everyone goes trough hard times", and "there's nothing wrong with you, we all get sad" and "you're just a pessimist person that's all". No its cool, ill just deal with suicidal though by myself, and be scared in my own head all the time. I'm 30 just got diagnosed with complex PTSD. Ive known the difference between sad and depressed for a long time. I'm actually a very happy person when my brain isn't trying to destroy me.
i hope you find the help you need to be happy x i know how hard being depressed and not believed is and i hope your situation improves xx
Once my sister got into an argument with me because I was depressed (no longer suicidal) and she got angry at me for being the way I was and I started crying and she said something along the lines of “what do you want? Should I kill myself so that you feel better?” She didn’t mean it but I still haven’t forgotten. It made me want to die again. I’m not suicidal anymore but I’m not sure I’ll ever forget.
- Oh come on!
- You just have to work out!
- You can't move out to study at a university. You can't live independently (proceeds to list all the things that I "can't do" but are actually problems that are quite easy to solve)
- Be nice to the people who will have to help you go grocery shopping!
- It's hard for us too.
- (after telling my mother that my sister doesn't have a clue about my disability and my life with it): Of course she does! She's your sister! Don't be so disrespectful!
I get this one a lot, too. "HOW do you expect to live on your own when you can't even get your own drinks?!?" Well, if you would actually buy cans and smaller bottles with my money like I ask you to, instead of things that I have to transfer into a cup, I'd be able to. Not to mention the fact that both of my parents live in houses that are not accessible.. at all... It would literally be easier to live on my own as long as it is accessible. Yeah, I'll still probably need help with things. Like carrying groceries inside and deep cleaning. BUT, I have plenty of people who will help, even when I'm living on my own. Moving out doesn't mean you have to have zero outside help. Especially for you at a University. Most schools have disability programs by law, and most friends aren't jerks who will never help you.
Spenna YES! Thank you! It's so annoying when they don't even dare to think about the possibilities we still have.
And both of them live in such houses? That's rough 😕
Thank you Jessica!
All the things I hear! I don’t even respond anymore. “I prayed for you today” yippie! “Have you tried this diet?” Ewww “my friends cousins aunts mailman was cured eating blah blah” noooo there’s no cure. “Is it because you’re bisexual?” Yes! I have multiple sclerosis, chronic fatigue, fibromyalgia, stasis migraines, high blood pressure, shall I go on... because I like boys & girls!!
Love you too Auntie!!
"It cant actually be that bad, I think you're just milking it" said to my 11 year old self after a vascular surgery on my leg. While I was on crutches. Thanks cousin!
There are several autistic people in my family. I happen to be one of them. My symptoms are not as obvious as the other autistic people in my family. I also have PTSD because my childhood was traumatic. PTSD and autism don't mix very well. I've always had unrealistic goals and expectations for myself and grew up pushing myself beyond my limits just to keep up with everyone else and do my best to act like we everyone else. Nobody in my family believes that I'm disabled. When I struggle they say something along the lines of, "This isn't you," or "You're better than that. You can handle it."
I'm so sorry that's happening to you. but it doesn't define who you are. PTSD is an illness forced on you, not who you are and you will get through it and come out the other side. it's going to suck and hurt so much but it's worth staying alive to fight for a happy future. if you can't live for hope live for spite. live just so the incident/s didn't win. when I feel like giving up I keep fighting just so I don't give him the satisfaction of knowing he broke me (even though I'll never see him again) remember you are loved so so much and you do have a happy future ahead of you even if now isn't so great xxx (I'm really sorry if i said the wrong thing here or if i overstepped I just wanted to share something that helped me in case it helps you xx)
Thank you for sharing. Those things are hard to hear
I completely understand where you're coming from. Especially with family doubting your disabilities, I've had family members who attended my drs appointments with me and at a later date turn around and go "oh, you still HAVE that?" as if "chronic illness" means nothing to them. They only see us as "disabled" when we're at our worst
You are a ray of sunshine!
My family keeps asking me 'what exactly is wrong with you' Like I'm sorry but you didn't support me before my diagnosis and I don't really expect you to now.
Great things to say: "I can't fully know what you're going through. Please let me know if there's something I can do to help." It's the opposite of saying "we all go through that", and it was really validating to hear it from my mother when talking about depression.
The "Are you better yet?". That's the one that really gets to me. My father drops it once per month. I know he cares and is worried but you asked me 2 weeks ago, depresion doesn't work like that. Believe me, I wish it did.
My partners father did that for a little while after his initial diabetes diagnosis, thankfully he seems to have stopped
I believe she did a video on that phrase a while back. It really is frustrating when people don’t understand that a condition doesn’t just go away like a cold or something
When I was first diagnosed my dad said that a lot. At the time it really hurt. Eventually we talked about it with my therapist and he told me that it was only because he wanted it to be fixable so I wouldn’t be hurting anymore. Since talking about it we’ve been doing a lot better and I think he understands more!
My parents sometimes ask: "do you still have to take those medicine?" Which is about my asthma. I've had medication for 17 years and most likely will for the rest of my life. It isn't like the asthma would be going away. I was diagnosed as an adult, and it isn't a mild case. Not severe either, just regular asthma. I guess if it was mild and I had been medicated as a child, then it could possibly have healed (though when I was a child the actual healing medicine was only just coming to the market, as it's quite a new thing). But the chronic nature seems too much to other people, while I've grown to live with it and accept it as part of my life.
Re my mental illnesses: is it because of social media.
Literally my aunt. According to her everything is because of social media. Like no, my hallucinations are not because of social media.
"Everyone is a little awkward socially" is one I used to get from one of my cousins about my asperger's/autism. She has similar mental illnesses to me along side different neurological disorders from myself (she has tarrets - i can't spell it, and I have autism - as mentioned), so I try not take it too much to heart, knowing how our mental illnesses (BPD specifically) makes us differ in how we understand people from people without personality disorders, BUT it still frustrated the hell out of me! That side of my family is much better now after I cut them all off for about a year to sort myself out, at least. But "everyone is a little awkward" doesn't make me feel better! My autism doesn't even upset me tbh - the lack of understanding from others when I do things a bit differently to reach the same results is what bothers me. "Everyone is a little awkward," sure, maybe - but autism isn't just a bit of awkwardness! Come back when you can't be in a noisy room because you can hear EVERY DETAIL of EVERY SOUND around you all at once, or when firework celebrations feel like bombs being set off inside your skull because of the volume and pitch, bright colors make you physically sick to your stomach, cold temperatures cause you excruciating pain because its like the chill is seeping into your skin - forget about what a thin coat feels like in a cold breeze: the coat is your skin and the skin is your muscles. Come back when you know how to give vocal communication, but your brain is too slow telling your vocal cords how to vibrate and make sound - but 99% of the time its a minimal issue that just decides to surprise you at the most inopportune times, or when eye contact feels like the other person is literally seeing your soul and subconscious self. Come back when you have a simple task to complete, and you logically know how to accomplish it but something in your mind goes complete blank on how to even move your limbs in the correct direction without extreme concentration literally right along side your mind telling you how to perform the task - like a delay on a computer feed. (I referenced some of my specific autism symptoms - all autistics experience their symptoms differently)
I've had this since the day I was born; its just life too me, and I figure it out. I don't need people to try and make me "feel better" about it. I think my loved ones are more upset with the way others may see me, which is understandable - but I am only overly aware of it when its pointed out to me.... such as telling me the "right way" to do things (if I do need help, I'll ask!) or belittling it, likely unintentionally, as if I should inherently feel bad about it! Honestly, I'm more likely to think others are idiots than think poorly of myself with this stuff - something I do try to keep in check as my BPD can cause that to be an entire other problem! 😂
I have autism I was diagnosed at 2 and I had a therapist that said my diagnosis was wrong or that I didn’t seem autistic because of how good I was at talking to her. And like autism presents itself differently in different people just because one person seems to have it more does not mean I don’t have it. She also like minimized my autism which never feels good.
Also I love you Jessica❤️❤️❤️
My father insists that if I just reincorporate eggs back into my diet I won't be intolerant of them anymore, except that my intolerance to them has been getting progressively worse. It's a great time. On the other hand I live with 23 other women in college who all respect that I can't eat eggs and specifically make sure that there is always some kind of egg free option for me at house get-togethers ❤ surrounding yourself with lovely people makes life so much better!
Amanda Gimenez oh my god it’s the worst when your parents are the ones accusing you of being difficult. My best friend’s mom is more careful of my diet than mine lol
I have so many intolerances and I swear because I used to have dairy, my extended family looks at me funny when I tell them I can’t have it now. My sisters NEVER took my needs into account so I always brought my own food (this is apparently rude according to them) and people get offended when I refuse baked goods with no label. I also have life threatening food allergies. People seriously need to just accept the needs of others and move on.
Has he ever taken a biology class, or a science class?
"What do you have to be depressed about?" This kills me every time! Depression is not sadness. My depression is a chemical imbalance in my brain. Oh, and I can't just go for a walk and feel all better! It doesn't work that way. 😣😬
👏
I was referred to as a 'picky eater' when I first realised milk was causing the bulk of my digestive issues.
Not picky!
Intolerant!
"is it going to kill you" I resonated with that one so hard because one of my dads friends who is a NURSE no less constantly makes "jokes" & comments that I'm not gonna make it to 35 with all my increasing health problems over the last two years, like right before 4th of July I was in the hospital because I was vomiting blood repeatedly, & his response rather asking if I was ok now was to say "shit you're gonna die soon at this rate!" I literally started sobbing because like how awful do you have to be think its ok to tell someone you think they're going to die!?!
You should get out of the house and exercise, it will make you feel better. Yes dear, my chronic anxiety and depression love people and being cheery
I've heard this so many times. I'm actually so sick of explaining why exercising would make it worse and going outside is a massive trigger most of the time.
@Twitchyboi I have scoliosis and mild exercise helps but I cannot imagine a full contact sport is going to help! You want to keep the muscles strong if you do have it but going that hard that fast is not ok
@Twitchyboi im so sorry that happened to you. i hope you find answers today xx
And it also loves letting me get out of bed, shower, dress and leave the house.
Honestly where do these people come from..
My father gave me so much shit for not excersising, quote 'you're hurting yourself like this' at a time when my depression was so bad I could barely manage to drag myslef out of bed to eat and shower, often not even that. I skipped meals bc I was too tired to eat and he went on and on how I need to go for a run.
Wow I need a mini pocket Jessica to carry with me in my daily life! I’m forever getting the “wow you look great!” thing. So that’s interesting that you think a 36 year old whom you KNOW used to go to the gym twice a week can no longer walk unaided and is using a stick on one side and supported by a fellow human on the other. Yeah. I’m doing fantastically 🙃😂
That is brilliant! We need to record Jessica's sayings and carry them on our cell phones or whatever tech you carry around.
HomeBirdJen we need her to make an app for these reasons.
Yes! Bring forth the Jessica App!
I love this one. People who have not seen me since high school either know I have cancer or don't. If they know it's a "WOW! you look so good!" (with my literal half an ass and walker). Or I get either "I thought you died!" or "What ever happened to you in high school??" None of these are appropriate actions! A simple "so what's been going on with you?" would be so much better. LITERAL CHILDREN are less rude about asking about my walker/leg (I have to wear an AFO and don't actively hide it). I was incredibly active before I had health issues, it just makes me feel worse when people say I look "good" because I don't. I know I don't. I'd rather be told I'm looking better than I did last week or not lied to. (sorry for thee rant reply on your comment :P)
Spenna no worries it wasn’t a rant! I wear an AFO outside too although it isn’t visible. I think people think they are helping by saying “you look really well” but actually I have an incurable progressive disease so in all honesty I’m never going to be well or better! And you’re right, just a little more thought about what they’re saying and something like “how are you doing” is fine! The majority of the time it’s just to make conversation, I stopped doing that a LONG time ago. I don’t have the spoons for it. I’m not one for small talk! 💜☺️
When I was in high school, a girl in my class once asked me, in front of everyone, "God, why are you so depressed all the time?!" As if I didn't feel enough guilt for not participating in things (if I felt anything at all to begin with) or for slowing everyone down because I had no energy and couldn't keep up. Back then I didn't even have my diagnosis yet.
I have bipolar disorder, and the amount of people who respond by saying "you seem fine" has made me feel like advocating for my needs is useless. Managers have even made light of it to avoid making minor arrangements for me at work. And if I'm clearly unwell due to an episode, people who are aware of my condition comment on my diet or lifestyle, rather than acknowledge a very real illness that has been explained to them. "Have you tried yoga?" Was a perfect example. I'm sure that will prevent psychotic episodes and hallucinations. 🙃
Oh, you're just too sensitive. Suck it up. Just trying to get attention. Can't you just chill out. Do you really have to sleep so much? Get some fresh air. ARRGGGHHHH! At least, finally, I have been diagnosed....I'm 70. Explains SO much. Love.
ugh my least favorite is my mom's variant of the yoga thing. "maybe it's all the medicine you're taking that's making you feel bad!" like yeah, maybe, it's possible, but none of my doctors have thought that was a good avenue to go down because barely functioning is better than the not functioning i had pre-medication??? also stop trying to get me to take fifty different supplements.
The anti medication people drive me crazy. Yes, I take a lot of medication and still have a lot of pain, but if I didn't take meds, I'd be unable to even get out of bed.
My mum thought my implant might be causing every symptom I’ve ever had. I’ve been sick since years before the implant
adoptingjoseph exactly! id probably be dead without my antidepressants!!
THIS! Or they suggest you just "try" this supplement or that one.. Supplements can interact with your normal medications! You can't just add them without discussing it with your doctor! Yeah, sometimes certain things can help, but it should never be anything you try because aunt peggy asked you to. It should be because you looked into it yourself or your doctor suggested it and there is evidence to show it helps people with your condition(s).
Ugh yes this! My mother has been trying to get me to subscribe to an MLM for 4 years now. “Look, this protein powder will cure you!” Yes mother, adding a supplement will cure hypothyroidism, I can go off the pill now, thank you my savior, wait til I tell my specialist doctor with a degree that you know better than she does!
I love that you make these videos because it's honestly really nice to know that I'm not the only one who has to put up with stupid comments or difficulties that make me turn from a happy (but sleepy) cutie to the worlds most upset grump over something that able-bodied people brush off.
Now from family I've had "Why can't you keep up? isn't that why your mother got you the leg braces?" (No she got me the leg braces because it was looking like they would have improved my quality of life)
"Why should I make my house accessible for the .0001% of the population that will never come to my house?!" (because I am your niece, and I come to your house [also those numbers are grossly incorrect])
"You should be grateful anyone wants to put up with you." (this sentence has stuck with me and ruined so much, don't ever say it to anyone, they either will accept toxic or abusive relationships or isolate from everyone)
"Is your permanent disability actually permanent?" (Yes....I'm sure spinal cords don't heal suddenly after 20 years.)
and the one that most recently happened, I was banned from dating someone because their mother told them I would drag their life down, require 24/7 round the clock care and was 'bad breeding stock' which wow, awesome parenting let's just ignore the laundry list of problems your own disabled kid has and the shame you've forced on them after years of this kind of treatment. Just UGH I went into a 4-day unconsolable rage over that and only calmed down after a teacher explained that its that person projecting their own fears onto me.
Just wonderfully soul-crushing stuff that makes you question your worth for some time before (hopefully) bouncing back and getting back to normal.
People suck. And then there are those who suck so bad they went back for thirds at the stupid buffet to suck even more.
Their. F*. Loss.
Thank you so much! I have definitely put my foot in my mouth to a gracious friend who has recently been diagnosed with more than 1 chronic illness and now I feel much more confident about avoiding being hurtful, even unintentionally!
I have SCT and ADD and when I said I couldn't remember something my mom would say "why not?!" Or "I think you choose to forget." My dad has said "when I was in school we didn't have medicine to make you smarter"
Thank u for this! That about the depression... argh! People that say "happens to me too" apparently for showing empathy, and what they do is showing how little they understood!!!
Oh note down this one. "Well you're eating so that shows you're fine!" - my aunt after my surgery for a """minor cancer""" ....
Oh, good Lord!
Last time I was this early I didn't have PTSD yet
"This person has the same thing as you, and she works 12 hours a day " Thank you, now I feel ill and a failure.
SHOCKINGLY, JANET, THE WORLD’S CONTINUED ON SINCE LAST TUESDAY is my new favorite quote. 💛
I get called a hypochondriac way too much from family and even some doctors!!!! Its so frustrating. Also when they think that everything has changed with me since my autism diagnosis when its literally stayed exactly the same.
"You were never like this before your diagnosis, you're just playing up the symptoms"
No, Karen, I've just stopped masking, go away.
@@emilieb.kroman9068 EXACTLY.
@@emilieb.kroman9068 A) i have to tell my mum this all the time
B) omg same i use karen as my imaginary rant person too
@@emilieb.kroman9068 I'm trying to get my university to understand my illnesses as I'm at the awkward stage of got some diagnoses but it doesn't explain everything yet. Some staff understand my fatigue issues and others just think I'm using it as an excuse. I love learning I want to be with my friends. I want to fit in !!!! So glad there's people out here that understand
Another fantastic video, may I add a couple of the coeliac's favourites: After losing quite a lot of weight because I was put on a diet that keeps my body from self-destruction: Wow you look great, I wish I had an illness like that! Followed by: Oh you can't eat bread? Wow you're so brave I would probably just die!
Noo way!!! Seriously
@@irtap404 Sad, isn't it?
There’s nothing worse than when you’re super ill and have lost a lot of weight and people tell you you look great.
I get that too! Every time someone offers me a cookie or something and I can’t eat it they’re always like “wow I wish I could be like you and just turn down a cookie” like no actually you don’t
i have an eatin "problem" that makes me so underweight. i get complimented on how dangerously thin i am making it all worse. i totally get the frustration
“You’re too young to have that!” and “Just wait until you’re older, then you’ll *really* know pain.”
*seethes with murderous rage* 🤬🤬
My favourite from family and friends is..."well you don't look ill today" hmm yeah, my fibromyalgia, hashimotos disease, hypothyroidism, ME, anxiety and depression just got better overnight then yeah?? 🙄
What meds are you on for fibromyalgia?
@@TheNarcoticMonkey thats probably not a thing you should ever ask anyone
"Oh what's wrong with Ruth then!?" Well Aunty Karen its the same thing that has "been wrong" with my mother for the last 20 years. She has generalized osteoarthritis, chronic pain, depression and the actual new addition is IIH
When I used to tell my dad my feelings and how tired I am, his response was always "welcome to the club"
haha me and my friends all have mental illnesses of different kinds so we legit formed a little club just so we could say that and mean it in a welcoming way. but yeah i hate it when poeple belittle your pain
@@naomicooper8826 i wish I had that! A support "team" makes all the difference!
@@Vintagegirlzation yeah it is. You can join our club. You on Instagram?
As someone who struggles with severe anxiety and depression I just love it when people tell me to "cheer up" or say "what do you have to be sad about, others have it so much worse". The latter one has actually ended a friendship because that 'friend' was so unsupportive and never took me serious that I simply didn't want her in my life any longer.
My mother, standing up for me: Ashley doesn’t feel good
My grandmother: Ashley never feels good!
Bad thing about this is, I probably would have looked at her and shouted, “EXACTLY!!” (I have fibro). Sorry your grandma doesn’t get it.
next time get your mother to reply "yes thats correct its a CHRONIC ILLNESS, NOT CURABLE" then see what the response is. normally when i do that the people go pink in the face from embarrassment,
I know it seems touchy of me but I hate " you seem so much better now" Because it makes me feel as though I can't have a bad day or have any backsliding since I'm supposed to be so much 'better'. One or two good days really doesn't equal 'better'
I feel that way too. And worst is when I'm told that when I'm actually not feeling any better.
I have intense joint pain almost every day and I don’t feel believed because I’m usually too fatigued to go to the doctor and get diagnosed. Not feeling believed about what’s happening with your own body is frustrating.
I know this feeling so well. (I have EDS, POTS, Osteoarthritis, Anxiety & Depression.) The pain is debilitating enough and then the fatigue makes it even harder to do anything. Then the depression makes you feel like crap for not doing anything and then you get anxious due to that. it's a vicious cycle.
There is such a thing as being too ill to see the doctor. It's one of those bizzare situations those of us with chronic illness undergo which seems absolutely alien to everyone else.
I have chronic migraine and unexplained/undiagnosed (yet) widespread joint pain. I don’t mention it most days because this is my normal, and unless it’s really bad, I can work around it. But then, when I bring it up to people, a lot of them don’t believe that it’s an every day thing. I’m sorry, just because I’m trying not to complain CONSTANTLY doesn’t mean it’s not real!
"Oh, I get that too" "We all feel like that sometimes" - this one!!!
Also "Shockingly Janet" is amazing!
I would love to hear "Can I help?" AND THEN A FOLLOW THROUGH AND NOT "Oh that's too much for me to do" OR DOING THE THING I ASKED THEM NOT TO DO DANG IT
Yes the people that OFFER to help and then you finally talk yourself into reaching out to them for said help after talking yourself out of it for the tenth time and then you’re met with how this isn’t a good time and can’t someone else just help with that even though you’re in too much pain to get out of bed. Then you’re afraid you’re bothering them, so you pull back and learn not to ask for help because they’ve brushed you off five times already after supposedly telling you to call if you EVER need anything and then they hear you’re in the hospital and finally call to say they had NO idea it was THAT bad and why didn’t you just tell them and you want to scream that you DID tell them over and over but they refused to listen and that’s why you haven’t talked to them for a year. If you only care about “reaching out” when I’m back in the hospital then you definitely don’t deserve my limited energy at other times. I know everyone gets busy and have their own lives but don’t SAY you’ll be there to help to make yourself feel better like offering is your good deed for the day and then repeatedly turn that same person away when they DO ask for help! Sooo frustrating and makes it so hard to distinguish who is really gonna be there for you in the next crash and who isn’t. People don’t have to understand everything about someone else’s disability or chronic illness to be compassionate and caring but some people just can’t be bothered to be a decent human being apparently and then they want to blame more flares and hospital stays on us just for not “reaching out more”. Screw that! I definitely do not have time for people like that! 🙄🙄
You look "fine" to me Jessica and when I say fine I mean gorgeous. I have brain damage myself and it is annoying when my family tries to make me feel better by saying they forget things too. Love the channel ❤
I once told a friend that I was getting a colonoscopy to see if my doctors could figure out why my stomach bothers me 24/7. Her response was “At least it’s a minimally invasive procedure”. I would like to not have to get it at all, thank you very much
"Can you eat this?" And, "she can't eat that, she's allergic" are amazing things I've heard from the people in my life!
Me: "God i'm so tired."
EVERYONE AROUND ME: "Well you only work a part time job, and you don't have kids, and you have no other responsibilities, i work 40 hours a week come home and make dinner and do laundry-"
Me: (undiagnosed/treated ADHD screaming)
just yesterday my school refused to let me lay down in the nurses office when i had a migraine. i have MS and get really awful migraines every day, they think its my fault and im just trying to skip class even though i have an A in that class and the teacher is the one who allows me to leave cause hes not a dickhead
😔💜
Sarandib22 i will be, my next appointment is on the 25th with my neurologist. my school is supposed to be a special needs school anyways but they just use it as an excuse to treat the kids shitty cause most of them have learning disabilities that get them labeled at delinquents rather that help them, they think im another delinquent rather than someone with a chronic illness
Sarandib22 funny thing, this is an online school, but they require one day of "real" participation a week. which doesnt help me because i am ill everyday. ive been in online schools for a while and i prefer real school even if it makes me tired and sick
Sarandib22 im going to be dropping out soon and getting my GED instead though, high school really just doesn't accommodate my needs
Sarandib22 i actually do art and animal rescue and fostering already, my future goal is to have a cat cafe but its a bakery cause i like to bake too
Question: I know that ”getting better” is not a good encouragment. Would it be better to say ”I hope you’ll have better days?”? Thank you for all the education and joy you bring to the internet!
I hope you have better days is good to say but I've also found saying "I hope the pain passes soon." is also really good for when the person has bad days because you're wishing for their comfort and return to whatever their normal is.
as someone with chronic illness I'd say yes, that's fine, because regardless of what is happening with your body everyone has better days and worse days. The only time I'd caution on this is if the person has a terminal condition. I tend to say 'I hope you have some better days soon' because it takes the emphasis off the person's body having better days. Small tweak, but one I've appreciated in the past.
If I have recently been really ill or hospitalized & someone calls or visits to check on me, I don’t have an issue with the word “better” b/c obviously I’m more ill than normal, my problem lies with the phrases “Get Better”, “Get Better soon b/c I’m drowning at work w/o you” or “Get Better ASAP”!! It’s like a command, makes me feel like I’m inconveniencing the person, PLUS.. it’s not just going to happen! I have a friend who came to visit me in the hospital once & said (jokingly), “Hope you start feeling more like YOURSELF so I can go back to kicking your butt at Scrabble the next game night you’re up for!” This was PERFECT, b/c it’s something you could say to anyone who had been ill. IMO, I think it makes it easier on everyone if you can use specifics (so long as you’re close enough w/them). Phrases like, “Ughh, flu is the worst, I hope it goes away quickly!” or, “You had to have your appendix out?! Remember when I had mine out a few years ago & you brought me magazines? I totally owe you so don’t hesitate to call!” These are things that tell them you really care & you don’t feel awkward saying, “Get better soon”, b/c even though ‘flu’ has passed, they’re still not going to Get Better. I like your phrase about having better times as well! (As a side note...ALWAYS call the hospital someone is in & ask if they are accepting visitors! At least in the US, a patient can have notes in the operator’s computer which range from “no one here by that name to patient requests no visitors at this time”) Hope this gives you some other ideas! Have a wonderful day! 🤗💜😘
my grandfather often says he hopes I'll feel a bit better soon. It's a nice sentiment, and I know it comes from a good place, and it's not making any implications or accusations that i should be doing more or sth like that which other phrases can do... but still... it's best not to bring it up at all. I know how I feel. I don't need to be reminded that YOU feel bad because I feel bad. Say 'It was nice to spend time with you' or 'thanks for visiting'. Focus on the good things! It's really hard to stay positive and persevere when everyone around you is pitying you. The best time to express your feelings about my condition is when we're talking about the condition. And even then, be careful because we all have enough to manage without trying to manage your feelings. Also... if you want us to be honest with you about how we feel, you need to be sure that you're not burdening us with your sorrows when we do that! Sometimes it's easier to just gloss over things, lie, and avoid people than it is to deal with their drama.
"You look fine to me"
"And you look like an arsehole to me"
I think Sassy Jessie is up with my favourite Jessies (tbh they're all my favourite you're so so so wonderful and I love being taught things that I might never have been aware of and I really appreciate that!)
I didn’t think I could like the sweet Jessica & your videos anymore, but I do believe that 30 has brought out the sass & I LOVE EVERY SECOND OF IT!! These videos have been spectacular & witty causing me to LITERALLY laugh out loud 🤣!! You know when you’re with a group of people & can actually FEEL their desire to say something, but they don’t want to be the first? And you know that once the 1st question comes; WE’RE OFF TO THE RACES 🐎! My favorite is when I’m at a family reunion & lots of us are together at lunch or playing cards. Then out of the blue, someone asks “Have you seen an immunologist”, & for the next however long it takes to weasel out of the interrogation, my head becomes a human ping pong ball going back & forth as everyone else jumps in with; “What about a Rheumaltologist” (I might as well live in his garage) “You should see an ENT, I bet your allergic to something” (been there & my body’s so screwed up that after receiving 100 needle pokes in my back, I ended up having it done by a blood draw anyway b/c I didn’t even react to the histamine control🤷🏼♀️) “What about a holistic doctor” (you mean a chiropractor, yes & they do help when ribs slip out of place, no I do not take a zillion of “their” brand of vitamins or stop taking all the “western drugs” that my multiple specialists prescribe) “Why don’t you cut out flour & sugar” (sigh, been there, done that, nothing got better & I’ve had scopes to test for Celiac) “You just need to exercise more” (🤦🏼♀️) My personal favorite is, “Have you seen the documentary XYZ on Netflix?! They say-Root Canals can cause cancer & chronic illness b/c infection is still trapped in your gums, -People went to a facility & after just 2 weeks of being plant based they weren’t using walking aids, had lost weight & were totally off their medicines, -Even dairy farmers say to stay away from dairy b/c of pesticides in the ground”! NETFLIX IS NOT A DOCTOR!!! 🤬 One day I’ll actually reply what I wrote in parentheses, as soon as my head stops bouncing all over the place! Much Love 🤗💜😘🥄
My mom is the best when it comes to things like this, because she has Lyme, so she really does *get it*, but man my dad. If I have a few really bad days in a row and thus don’t finish all my schoolwork, it’s suddenly all “well, you can just blame being sick, since you always are” and “well you did all of it last week, so why not again this week” and whooo let me tell you, if it wouldn’t end up with me having all freedoms taken away (and if I weren’t usually crying during these confrontations), I would have quite the sassy comebacks for all of those 😂
Fuck. I'm so sorry. That's horrible.
question. does dad do any of the house work? or help look after you or mom? because you could always just say "yes last week i was able to do that but cant right now, why cant you do (insert x chore here) your capable!"
Great list! And I love your "Aunt Susan." I am much less concerned about what my friends and family think ; because, frankly, I rarely see anyone outside of my home. If something comes up that is related to one of my illnesses; I will state it. Wait! I know. The other day I was trying to think of something in response to a FB page I follow and I used your "sorry, I had brain fog" line, (which I love!) and the person replied, "That's okay. Everyone has that sometimes. Just wait until you get older." Um? What? Wait until I get older? I'm 53~!
So, I lost track of what I was saying. Oh, yes, I mostly worry about ppl in the medical field. If I had a dollar for every time a shrink or therapist told me that I needed to clean the house; I would have enough money to hire a maid for a week! What part of "can't stand at the sink very long", or "pile of dishes freaks me out and I run" don't you understand?
Ah, yes, and "you were fine a few minutes ago." My younger son has End Stage Liver Disease from Auto-Immune Hepatis. One day, in school he had to go like down for an hour or so in the nurse's office. He felt better for a while after he got up and was "running through the halls just a minute ago" when he went to the secretary to get a pass to go back to the nurse's office. To be fair; it did appear as if he were malingering. But, he wasn't!
I absolutely love your rant videos! They cheer me up. :)
Dammit, now I've forgotten what we were supposed to help you with for the next video. Brain fog. It will get worse when I'm older. thanks.
I know your experience was being too thin. Mine is being fat. The "eat less and exercise more" advice makes me want to scream. I barely eat as it is and I can't walk more than a block! It's these damn psych meds that have wrecked my body! The worst thing was when my family and I went up to my folks' to see my brother and his wife; whom we hadn't seen in years. I got out of the car and the first thing Roger said was, "Wow, you've gotten fat." Thanks, bro. Thanks alot. And, God rest your soul.
"minimizing is not understanding" beautiful words thx
i think my favourite it’s the whole ‘drugs are chemicals and are making you sick’ thing
like no thanks ill keep the meds that stop me from fainting daily
Wonderful video and it's been great reading all the comments. Oddly the one comment that never bothered me was, 'You look great'. I think because it was never prefaced with a 'But' which implies a complete negation of whatever disability you have just described to them. I think I'm very fortunate in the people who surround me. These days however after 20 years of illness I now do look ill. I am on a walking stick, bent over and very much changed. I can still occasionally get from strangers, 'But you can't get Lyme disease in Ireland!, to which I always reply, 'Praise the Lord, I'm cured so! It you say it it must be true'. That always stops them in their tracks..... :D
I love that response! I’ve been dealing with chronic pain and many others things due to Lyme Disease and it took years and multiple cross country doctors trips (I’m in the U.S.) for me even to get that diagnosed properly and I still encounter doctors that want to tell me that “There is no Lyme in Texas.” 🤦🏻♀️🤦🏻♀️
You are amazing!! I have rheumatoid arthritis which is also known as "just arthritis" by so many people and also "you're too young to have that it must be something else."
I've actually been seeing more and more young people with obvious signs of arthritis trying to get a diagnosis, only to have people say that "that's impossible" because they're too young. It's becoming more apparent that arthritis amongst younger patients is actually not as rare as previously thought, but even some medical professionals don't recognize that yet.
I have psoriatic arthritis and i get the “but you’re so young” thing all the time. I also have two cousins in their 20s/30s with rheumatoid.
"But have you tried praying/reading the Bible to cure your anxiety?" Or, the other classic, "You're not trusting God enough!"
LISTEN, BRENDA, BIBLE VERSES WILL NOT CHANGE THE AMOUNT OF SEROTONIN MY BRAIN PRODUCES.
we all need a GIF of the “shush your face” and the “don’t do that”
While I was pregnant, my anxiety got so much worse, and I was afraid that meant my chronic depression issues were also going to be affected and I would end up with severe post partum depression. (I did.) My normally very supportive husband, who normally knows exactly what to say, said "I think you'll be fine." I'm telling you I'm already NOT fine, but okay...
I have chronic migraines and I can't tell how many times people close to me tell me to "just go walk it off." Or "eat something and maybe you'll feel better" two things people in the middle of a migraine struggle to do.
Yeah, that is annoying. I can kinda understand the second, though, because my migraines are sometimes preceded by a tension headache, which can occur when I get too hungry. Most people only have tension headaches so they don't know the difference but it can be a drag trying to explain things to people so often.
Same. Like yeah, I'll go take a walk so that I can feel the sun burning out my eyeballs, and move so that I can collapse in the middle of the road because my body DOESN'T HAVE THE ENERGY TO MOVE ANYMORE.
You hit the nail on the head with this list! My personal favorites I've been hearing my whole life: "You don't LOOK sick," or "You're exaggerating." Funny thing. Since my chronic illness had been ignored my entire childhood, I'm pretty sure that's why it's worse now and I have to figure out how to deal with it all on my own. Thanks, Mom and teachers! 🙄
My partner minimizes what I'm going through a lot and they don't do it on purpose but it's still like??????? If that's REALLY the case and you also experience such severe pains, brain fog, and vertigo all at once that you are bedridden for a week or more then you should see a doctor. It's not "feeling a bit sore"