your diagnosis is no ones business apart from yourself and your medical team. love your content and your channel is helping raise awareness of the problems disabled people face on a daily basis
I personally am open about my psychiatric diagnosis because I want to help others who might be trying to figure themselves out. However I'm learning that we really don't know what is going on with me physically at all. Also, diagnosis being wrong or changing over time is absolutely valid.
I am very often open about having "mental issues" (if they ask why I don't work etc.), but I choose more carefully when and which diagnoses to share. In the library if I need help I might say I have a learning disability and need someone to help me use the machine that helps you borrow. In reality it's probably more my social anxiety that's the problem, but if people are nice and helpful I do so much better anxiety-wise. Then if I'm in a group therapy and we have a coffee break and people ask why I don't eat anything, I'll just say I've had an eating disorder in the past and prefer to eat at home. And if I'm at home and one of the home care staff comes, and I can't find something, I can explain it's specifically my ADD making me forget where I put things. I share diagnoses if it's useful for me, if it makes people understand me or accommodate me better. My friends and family obviously know all my diagnoses, I have no shame in it. Rather less shame, now that I have names for almost all the things that are wrong for me. It's validating to know it has a name and is a thing, than you just suffering at home alone and think you're the only one in the world experiencing this...
@@AutisticlyRose I'm with you. I have had multiple friends either call me or go in for emergency psych help because I am open about my experiences. Just hearing "psych ward" makes you think of horror movies. An orderly told me once "the locked doors aren't to keep you in, they are there to keep the world out."
it's not until I saw your content where you specifically don't share your diagnosis that I even thought that I shouldn't have to disclose my own dx in order to talk about what my life as a disabled person has been like. so thanks!
I have never thought about what disabilities you might have. I just find it is a very personal question. I’m disabled myself, and I will talk about my disabilities openly if people ask, although if they are rude about it, I will go into graphic detail. Not long ago a woman was being very pushy and nosey about my conditions, when I got graphic, she said, “I didn’t need to know that.” I pointed out, “well you were the one who asked.” She actually accepted that, maybe she has learnt from the experience. Anyway, she didn’t ask anymore. It was rather satisfying. 😂
Ppl are so rude. Many people already feel like they are ”faking it” or being overly dramatic with both mental and physical health issues (myself included) without people prying. Absolutely love your content and learning from it! ❤
I started giving people kindness coins* back in the 2000s because it drove me crazy that my disability was getting worse. *plastic coins that I pay ~$6/144 my favorite says „you’re pawsome“ and has a pawprint and comes in colors.
I'm currently working a job assisting a couple people with a disability (with things like showering, going to the toilet, getting dressed, eating and taking medicine). Some of them share their diagnosis, some don't, and that's fine. I don't ask, and they don't all disclose it in their client info folder either. They can usually tell me exactly what they need in terms of assistance without telling what their diagnosis is. If I can do this job without knowing everyones diagnosis, surely we don't have to know everyones diagnoses - it is usually just none of our business, and we can treat people right anyways.
Honestly, your content inspired me not to share my own disability if I don't want to and to think about what situations I want to share in and which ones I don't. I think you might be slightly younger than me (I'm 35, I assume you are in your 20s). For people my age, at least where I grew up there was never an expectation of privacy, even as a child of like 4 I was expected to answer questions about my disability to strangers and members of the public. Now, looking back, I think that's completely not right and my parents or other adults around me should have stepped in to stop it, but they never did. It was like they just expected us to evangelize to people about our disabilities or something. And you're right, even if you were to disclose what it is, you still wouldn't be believed by some. I have a lifelong disability that I have had since birth and even in a case like mine, people have not believed me because my disability is worse or less severe than their cousin's brother's hairdresser who has the same thing. A couple of times doctors have asked me why I use a wheelchair. Actual trained medical professionals who can see exactly what my disability is. So, yeah. Disclosure doesn't equal being believed unfortunately.
I've only been disabled for a year or so, and I'm still working out a lot of these things. Content creators like you do help in this regard, just to see people dealing with their own disabilities and everything that comes with it, such as deciding how to explain the diagnosis (or the lack thereof, in my case). Learning about a certain celebrity who became disabled at roughly the same age as me has been inspirational, as he still lived his life, got married, had kids, and has a successful career. After all, if he can do all that with a similar disability to my own, surely I can claw my way into building a happy life. That said, I honestly never noticed that you haven't shared your own diagnosis, or considered simply keeping mine private. It just didn't occur to me. One more thing to work out, I suppose. Regardless, thank you for your work here. It is certainly helping me, and I very much appreciate what you do.
I really like your perspective and kind words! Just remember to be careful with possible comparisons. It’s one thing to look and see someone who gives you hope and strength. But comparisons can sometimes tear you/other people down. Keep moving forward! 😊 -Gracie
People have no idea how expensive wheelchairs are, what hoops we have to jump through to get parking permits, and that none of us have the spoons for faking something that impairs us every day.
Excellent explanation! It’s not like we expect anyone else to tell us their private medical history when we meet them after all. I personally love how your content is more focused on the general issues as people get less caught up on “oh it’s just for people with that issue”. Everyone should care about access, not matter the disability or reason they need it. Can’t tell you how much more attention I pay to broken down lifts since watching your videos, truly is shocking.
I think its great you dont let anyone pressure you into sharing your diagnosis! Im very open about autism and mental health but honestly i understand not everyone wants to talk about their disability its your business
I was told I had been diagnosed with GAD and CPTSD. I was also under the impression I had never been diagnosed with ana and thought that I just hadn't been sick for long enough. That didn't bother me, but the diagnoses I was told I had didn't add up, so eventually I brought this up to my CPN, who of course saw no record of this because unknown to me it had been a miscommunication. But she didn't tell me this and made an appointment for me to see a psychiatrist. Everything was cleared up at that appointment and I was so relieved to hear I didn't have any diagnosis except my autism diagnosis. I also found out I actually had been diagnosed with ana. Sometimes misdiagnosis happens and sometimes miscommunication about diagnosis happens.
I do like when content creators share their diagnoses, mainly because then I know if their advice that they give will potentially help me or not. I'm fairly new to the chronic illness world, and I'm trying to find others like me and see if they have tips for things like managing my energy and getting stuff done when I feel like absolute crap. Especially when I'm also a mom to a very active toddler. But I also understand wanting/needing the privacy and security of not sharing that detail of your life.
People openly sharing their diagnosis online is how I ended up recognizing that I had the same condition and finally being officially diagnosed with it. That being said, it doesn't bother me at all when people just share their lived experiences but not their diagnoses because, as you mentioned, everyone has the right to their privacy... even RUclipsrs. :)
I am thinking more 'what is wrong with people' rather than what is wrong with you! It is none of anyone else's business to be honest, it makes me so mad that people feel entitled to anyone's personal information just because you choose to be on social media. Well said! The kind of content you make - it is irrelevant to it, I love that you show that ambulatory wheelchair users exist and have needs which are valid, as so many people assume that everyone in a wheelchair is paralyzed etc or that it is a binary - you are always in a wheelchair or not, which just isn't the case. There is so much assumption around disability that I think you are right that no matter what it would never be enough. Even If you were a Gluten Free baking channel sharing recipes people still wouldn't be entitled to know if you were ceoliac or not even if they think it would be relevant, because lots of people are Gluten free who aren't ceoliac and even then it still wouldn't be anyone's business, Gluten free brownies still taste amazing even if you are gluten eating. For goodness sake! I come back to my original comment- what is wrong with people!
I admire this boundary you have as 1) you need to do what's right for you and 2) the focus on educating abled people about more broad things as opposed to one specific disability is really cool. Not that every channel has to be like that, but you do it really well and there's a lot of value in what you're sharing with and teaching to people.
This was great. I’m me, not the label. I agree it’s never enough. People who thought I was “faking it” were rarely convinced by more information. People who wanted to help rarely needed an explanation.
I'm always super curious about the medical details because I'm a medicine nerd and want to know exactly how everything works in there. But no, I don't think anyone should be forced to share their diagnosis - especially if they focus on disability in general or on its social\psychological effects. I'm pretty annoyed when there's a video about somebody disabled where they talk about their life with disability but omit important details (like e.g. a whole video is about living with a certain condition and adjusting to it, but the extent and kinds of the symptoms are barely mentioned), but if you just want to do disability advocacy\advice in general, that's awesome. Also, you have the right to share whatever you want, and people have the right to have - and express - their opinions about your content. Some of them just won't be interested in the kind of information you give, and they can say that. They still shouldn't fake claim, obviously, it's rude and does more harm than good even if someone is actually faking. I'm just like, you do you, people will have their thoughts about it anyway, but if they are mature enough, they will hopefully express them politely and with respect. That's what they should do.
My family are like that. They'll say 'oh, is this SOMETHING ELSE you've got', and I try to explain that 'No, this is not something else, this is a new diagnosis and the previous diagnosis' were wrong'. I'm 46 now and I've had difficulties for most of my adult life and even in childhood, I was strange.
I respect you a lot for turning these dumb comments into a teachable moment. (And for your decision to not disclose) But I'm still annoyed at people for not understanding that they should just mind their own business. I understand sincere curiosity, but some of those comments are just hostile.
I totally understand as there are too many people causing issues like trolls. I have alot of medical and physical diagnosis but find people like to judge and cause issues. Judgement is hard too.
It's understandable that you don't want to share your disability to others who are so immature about the manner anyway! I would understand if you told me in private and of course I wouldn't share it here!
I completely understand why you do this 🙈 My mum often starts a conversation with "Oh, she's on a wheelchair and we need an accessible access, but she's actually able to walk short distances etc. So don't worry, she can walk, she's not paralyzed, it's fine." And I feel so weird about it, because I don't understand why should I disclose this to random strangers 🙈 Or she talks about how brave I was during doctor's appointments - like, I'm traumatized, please don't talk about my triggers without me. 🙈 I love my mum amd what she does to inform people I choose to inform, but no matter what I say, she sees nothing wrong with telling strangers. It's very uncomfortable, but it doesn't affect me so much, that'd I'd choose to ruin that day's mood over it. 🙈
There is absolutely no need for anyone to know your private medical information online. I question why people so desperately want to know - like WHY?! It's none of their business! I value you and your content, full stop. The "faking" discourse is so illogical it's laughable. As if anyone would fake being one of the most vulnerable members of society with limited access to many things in life. Nobody would choose this life, nobody.
I find it really interesting to learn about different conditions and identities (especially from the people who have them). However, it's up to individual creators what they want to share and us viewers aren't owed any information.
I think what you’ve shared is more than enough: You’re an ambulatory wheelchair user and your access needs vary day-by-day. You have every right to not disclose your diagnosis online unless you want to. We don’t actually need to know your medical information - People on the Internet can just be super nosy! Also, I appreciate that there are captions on this video, but they’re a bit hard to read. They don’t have a lot of punctuation and they have some errors. I get that writing out captions can be tedious, especially when you’re low on spoons, but having captions that are clear and easy to read will help make your videos more accessible.
Makes sense to me that you wouldn’t want to spend all your time fielding questions about it! For some reason I’m being reminded of that Tory advice that people should ask people with invisible disabilities and badges on the tube what their disability was so they could understand why they needed the seat 🙄. While I don’t necessarily mind sharing my diagnoses (quite a collection!) at certain times, I do find a lot of people ask so they can try to catch you out. One of my best friends growing up (out of trying to understand) googled one of my main disabilities, she then told me, don’t worry, Wikipedia says you can live a normal life! (Funnily enough she actually understands one of my other disabilities she’s more familiar with as very bad!) Not really understanding co morbidities or that it said SOME people, and when a bunch of us asked about that in our inpatient program they told us that as they could understand it meant that we could usually feed and clean ourselves with adaptions and not much assistance!! Not work or go out etc. I generally prefer to mask my disabilities when I can on the times I am actually having a good day and am out and about (leading to people thinking I don’t have them or it’s not that bad) to literally avoid those conversations! I find either people are horrified and feel awkward that my life is so awful, feel like they should be fawning over me and make loads of negative well meaning comments (I prefer to not think about pain etc because then I just notice it more intensely, and I’ve spent decades working on my mental health and outlook to detach my mood from my disabilities and instead prefer to be happy and positive and think about the good things in my life and not be told how awful my life is or all the things I’m missing out on!), or they just want to invalidate me and try to catch me out. Either is exhausting and it would probably take me months to actually educate people on all my disabilities if they were that interested!
I'm being completely genuine here, I thought "ambulatory wheelchair user" was a good enough explanation for me and everyone. Maybe my thinking is because My girlfriend is also in a wheelchair, and she nor any doctors know what is actually wrong with her or have a name for it at all.
I thought this was a cover if " What's wrong with me" from mean girls. Regarding to the video; I love the pin and I completely support your boundaries!
You rock! I have a few to share. I was on a bus and used a rollator at the time. Passenger asked “what is wrong with you?” I replied “I’m a homicidal maniac.” Another time I was at a buffet and went to get some coffee. Using a scooter at the time. Someone asked my husband if I had ms. Hubby said “I don’t know. My wife doesn’t tell me everything.” Btw if I choose to say that I have ms that is my choice. But that doesn’t give me the right to know what someone else is living with. And I can’t speak for others but my ms is progressive and I have used different mobility tools at different times.
I find a lot of people who share their diagnoses then get more hate from followers questioning if they are for real if their symptoms don’t match others with the same diagnosis.
The sort of decision - to share or not to share a deeply personal part of who you are publicly has to be made with due consideration. As a parallel, a little over a decade ago, I had a genetic test show I have XXXY chromosomes. Having transitioned in gender back in '88, the politics around gender identity in my community are complex. There are folks who happily debate my right to continue identifying as a transwomyn. So, I share this fact about myself selectively. I may be more public as I grow, or not - as I see fit. The point is that we all should get to set the boundaries we need to set to live comfortably, in any community.
Your most persuasive point was at the end - about the potential inaccuracy or changing nature of diagnosis. Also, not sure you mention it but a person's disability can often be the result of a combination of conditions - eg MS and Bipolar, so it would be confusing to explain which aee attributable to each condition (even with 2). In my own case, I believe my challenges in life are partly the result of being autistic, but aggravated by having GAD which is what makes it a disabling condition in many situations? (When my being autistic wouldn't cause any disabling issues, it's just how I am and I can hope okay. What do you think? Julia
I appreciate it when people do share their disability cause when I find someone going through the same thing it's nice. However I don't feel like it's right to force anyone to do anything if your curious ask. If they say no you can ask why they don't want to share. Then leave it at that. That's for me personally.
I’ve kinda felt pressured to say mine because I feel like everyone thinks I’m faking it if I don’t. But even then, mine is a spectrum and I’m like an 8.3/10 rn (10 the worst) so I’m also worried people will be like blank has it and they’re completely fine. That can be true on the lower end. My pt said MANY old people only realize they’ve had it once they’re old and broken since it was extremely unknown. It’s been a popular(?) diagnosis lately aka more awareness of its existence and wow, since it’s a spectrum it’s not as rare as we thought! You could probably guess just from my clues lol. I’m also very insecure about it because maybe everyone else does have it as bad or worse than me and I’m just not handing it as well as them
Would you say your last paragraph to somebody else? Would it be okay to treat somebody like that? Don't treat yourself that way, I know it's easier said than done though ❤❤❤
Anyone else remember when they had a bunch of other video? (Reactions, reviews, and blogs talking about their various labels?) including their specific disability
I was a musician in a local band, I was perfectly able to do this as sat down, it gave me total joy. Then as I had to give up the street entertainment part, I was publicly denounced on FB as an 'attention seeking fantasist'. I was mortified, That was five years ago. Since that point I have found it necessary to confess my illness to all....which in turn kind of makes me look a fantasist, but my Cardiologist and Rheumie would argue this. My point is, you are absolutely correct, none of us should have to divulge. I guess the answer is, having a short, reflective no info answer....Maybe 'shark attack?'......
I love your videos, and the fact that you've set boundaries to preserve your privacy is very cool. I don't know how someone who claims to be a fan could be so disrespectful though. Isn't the point of a lot of your videos that you can never know exactly what another person is going through, and be less quick to judge them based on appearances?
I wasn't even thinking about your diagnosis until this. It's really none of my business either way. The fact that people keep insisting that we're faking is really strange. Who the F wants to fake this life? No one wants to deal with the constant pain, fatigue, dealing with the issues of being in a wheelchair, and all the hassle we go through daily. It's costly to have a power wheelchair, buy all the accessories needed to be able to use the wheelchair in all weather and still not be able to visit 80% of the places you used to while you weren't disabled. The worst part is when the medical community thinks you're faking and/or it's just in your head. I have a rare illness and multiple other conditions that are usually comorbid, but most doctors have never even heard of the first one. Which means they dismiss your symptoms or they blame everything on your diagnosis and won't investigate further. I have no problem discussing my diagnosis publicly since, in my case, it is important to spread awareness. I also don't ask people about theirs, if you want to tell me you tell me, if not then I will continue to not know. A no means no, even for medical information.
I'm disabled and can understand were you r coming from cuz I have a bunch of different diagnosis and some people don't understand about this certain diagnosis is that I have so it's just gotten to the point where when I'm on social media that it's gotten to the point I don't give out my diagnosis unless I know it's somebody like a family member or a friend then I we'll talk about it but other than that if it's somebody I don't know I won't
I said to each their own as a visually impaired person who’s on RUclips if the person who has a disability wants to share their disability fine that’s cool if they don’t that’s OK too it’s up to the person with the disability not to their followers to try to get it out of themor anything else, but up to the individual that has the dis
I share my diagnosis in places online that have something to do with helping others with similar disabilities. Even if it's just to tell someone that I've been there or am there. Others in the same spaces have done that for me too. The only people who need to know my diagnosis are my medical team and my support network. I do share quite publicly offline as an activist. This has bitten me in the butt, but I still do it. Eg. No, I am not throwing a tantrum, I'm actually sick!
In the past five years I have had so many symptoms of… something? I went from walking almost everywhere and routinely getting in over 10,000 steps to usually logging in at under 5,000 steps. I need a nap every day otherwise my brain just stops braining. If I go for a long walk or mop I can’t do anything the next day. I topple easily and trip, causing me a variety of injuries like breaking off half of one of my front teeth, briefly knocking myself out, a concussion, and a huge black eye. I’ve taken so freaking many tests and the general consensus is, “Well you are getting older…” I’m 54 years old, not 80. And I fell again last night (on the other side from my cane) and bent all of my fingers backwards, making today an absolute joy. Also, my memory is horrible and I can’t even remember if I was replying to a comment and RUclips won’t let me check. I think I’m talking about how it can be hard to get a diagnosis and how easy it can be to get diagnosed.
I am also disabled and because my disabilitys are not visible, some people thik, I would fake. I am in a lot communities with disabled persons and no one of them is faking. The only one, who I know is faking the disability, is a beggar, who want to get more money, when he pretends a disability.
Yeah idk why people think it's okay to DEMAND other people to give you their medical information. Like what ??? Even if you knew them in real life it would be rude but it's even more absurd when you're just a random person on the internet asking those questions from a person you dont know.
I think its really cool that you dont share your diagnosises! It's really neat because it means people can't like force your content into the same boxes and just be like oh well this person is talking about POTs which means nothing they say is applicable to anything that isnt POTs which is NOT TRUE. Its just neat
I mean I would be a hypocrite if I said you should say what yours is when in fact I do not share my diagnosis with people at all either, though I do try to give hints, that I have stomach issues that will never go away, but the intricacies of the diagnosis no I don't share everything lol
Never seen you before, i clicked because i thought the thumbnail with your wheelchair looks cool haha! No its weird to me that people feel like they are entitled to know someones diagnosis or disabilities? Why? Why cant a person make content about being disabled or chronically ill or bed ridden, without sharing their specific medical conditions? It shouldn't matter WHY you are disabled, it should only matter that you give good advice or make a community for people who no matter the disability or illness can relate to each others struggles, achievements, daily life, and so on!
Personally I would like people who are disabled to share why they are disabled and what makes them disabled and what kind of disability they have but it really all comes down to this people who are disabled have to be who they are and they have to go through life with their disability so they have to do what hopefully makes them positive and happy so if sharing makes them happy and positive great and if they share what they feel would make them have any negative feelings then let them be themselves. I also am a disabled person so for me I share about my disability only after I find people who except the first bit of sharing I do and if that is not accepted then they are not the people for me but if that is accepted then they are the people for me and when I find people who accept my first bit of sharing then I open up all about my disability because I know it will be accepted and my disability is an unnoticable kind.
You don't get to have an opinion on what others should share about their lives. Plenty of people share their diagnosis online, but nobody is required to. I'm disabled myself.
If I compare your content to other disabled creators who do share their diagnosis, it's in no way better or worse content or less/more valid to me. I have a chronic illness (invisible) and although I'm fairly open about it, I don't share it for the sake of satisfying someone else's curiosity.
“My diagnosis is: drumroll please” That’s an odd sounding diagnosis, I have never heard of that before! Actually, in all seriousness, sharing a diagnosis online should be the person’s choice, not forced. Personally I plan on sharing mine when I finally get a diagnosis, but that is absolutely an individual’s choice, not mandatory (and should never be)… Also fake claiming is always harmful when there is no confirmation that it is a faker. (Ex. Someone’s family exposing someone who is claiming to have a diagnosis/a different diagnosis…) Without that, it is much better to just take someone at their word about their diagnosis. Fake claiming people can harm their mental health.
*GASPS* WHAT A YOUTUDER DOESNT WANT TO SHARE EVERY DELTAIL OF THEIR LIFE DOWN TO THEIR VERY VERY VERY PERSONAL MEDICA HISTORY!?!?!?!??! GULPPPP WHAT AM I GONNA DO NOWWWWWWWWWW
Doesn't bother me at all. The issues you cover are relevant to a ton of different disabilities/diagnoses, so what does it matter? I don't get why folk are acting so entitled about it.
I mean, to be fair, Often if you're out and about, and you have a invisibility disability, and hide it, It's fair that the other person thinks you're faking it, The world isn't as innocent as you'd think, People will do anything to get Infront of line.
(not that this is necessary in order to trust people, but you know that if somebody was faking they would make up a whole backstory about it and give details, right? Lmfao)
You know you're part of the problem right? You're *why* the world is an unsafe and unfriendly place for disabled people. All out of some bizarre paranoia that someone *might* lie to you about their disability. Like ffs, let's say someone lies to you saying they have a disability and need the priority seats on the bus. What exactly is the cost, you have to stand for a while in a way you would be happy to do for someone who didn't lie to you? A minor inconvenience. And because you're so terrified of such a minor inconvenience being inflicted on you by a *entirely hypothetical* liar, you're going to accuse any and all disabled people you see of faking? Honestly it just looks like you want an excuse to be shitty to disabled people.
![15 things to NEVER say or do to a Disabled person!! [CC]](http://i.ytimg.com/vi/SGvahY8K-5I/mqdefault.jpg)
![15 things to NEVER say or do to a Disabled person!! [CC]](/img/tr.png)
your diagnosis is no ones business apart from yourself and your medical team. love your content and your channel is helping raise awareness of the problems disabled people face on a daily basis
I personally am open about my psychiatric diagnosis because I want to help others who might be trying to figure themselves out. However I'm learning that we really don't know what is going on with me physically at all. Also, diagnosis being wrong or changing over time is absolutely valid.
I am very often open about having "mental issues" (if they ask why I don't work etc.), but I choose more carefully when and which diagnoses to share.
In the library if I need help I might say I have a learning disability and need someone to help me use the machine that helps you borrow. In reality it's probably more my social anxiety that's the problem, but if people are nice and helpful I do so much better anxiety-wise. Then if I'm in a group therapy and we have a coffee break and people ask why I don't eat anything, I'll just say I've had an eating disorder in the past and prefer to eat at home. And if I'm at home and one of the home care staff comes, and I can't find something, I can explain it's specifically my ADD making me forget where I put things.
I share diagnoses if it's useful for me, if it makes people understand me or accommodate me better. My friends and family obviously know all my diagnoses, I have no shame in it. Rather less shame, now that I have names for almost all the things that are wrong for me. It's validating to know it has a name and is a thing, than you just suffering at home alone and think you're the only one in the world experiencing this...
@@AutisticlyRose I'm with you. I have had multiple friends either call me or go in for emergency psych help because I am open about my experiences.
Just hearing "psych ward" makes you think of horror movies. An orderly told me once "the locked doors aren't to keep you in, they are there to keep the world out."
Medical diagnoses are confidential for a reason - it's no one else's business!
Well, to give u more nice comments: I'm so happy u don't tell others because they force u to.
it's not until I saw your content where you specifically don't share your diagnosis that I even thought that I shouldn't have to disclose my own dx in order to talk about what my life as a disabled person has been like. so thanks!
I have never thought about what disabilities you might have.
I just find it is a very personal question.
I’m disabled myself, and I will talk about my disabilities openly if people ask, although if they are rude about it, I will go into graphic detail.
Not long ago a woman was being very pushy and nosey about my conditions, when I got graphic, she said, “I didn’t need to know that.”
I pointed out, “well you were the one who asked.”
She actually accepted that, maybe she has learnt from the experience. Anyway, she didn’t ask anymore.
It was rather satisfying. 😂
Lol getting into detail is a funny way to pull a monkey’s paw on them
Sharing a diagnosis is the person's choice. No one should force you to share your diagnosis ❤
Ppl are so rude. Many people already feel like they are ”faking it” or being overly dramatic with both mental and physical health issues (myself included) without people prying. Absolutely love your content and learning from it! ❤
I started giving people kindness coins* back in the 2000s because it drove me crazy that my disability was getting worse.
*plastic coins that I pay ~$6/144 my favorite says „you’re pawsome“ and has a pawprint and comes in colors.
I'm currently working a job assisting a couple people with a disability (with things like showering, going to the toilet, getting dressed, eating and taking medicine). Some of them share their diagnosis, some don't, and that's fine. I don't ask, and they don't all disclose it in their client info folder either. They can usually tell me exactly what they need in terms of assistance without telling what their diagnosis is.
If I can do this job without knowing everyones diagnosis, surely we don't have to know everyones diagnoses - it is usually just none of our business, and we can treat people right anyways.
Honestly, your content inspired me not to share my own disability if I don't want to and to think about what situations I want to share in and which ones I don't. I think you might be slightly younger than me (I'm 35, I assume you are in your 20s). For people my age, at least where I grew up there was never an expectation of privacy, even as a child of like 4 I was expected to answer questions about my disability to strangers and members of the public. Now, looking back, I think that's completely not right and my parents or other adults around me should have stepped in to stop it, but they never did. It was like they just expected us to evangelize to people about our disabilities or something. And you're right, even if you were to disclose what it is, you still wouldn't be believed by some. I have a lifelong disability that I have had since birth and even in a case like mine, people have not believed me because my disability is worse or less severe than their cousin's brother's hairdresser who has the same thing. A couple of times doctors have asked me why I use a wheelchair. Actual trained medical professionals who can see exactly what my disability is. So, yeah. Disclosure doesn't equal being believed unfortunately.
I've only been disabled for a year or so, and I'm still working out a lot of these things. Content creators like you do help in this regard, just to see people dealing with their own disabilities and everything that comes with it, such as deciding how to explain the diagnosis (or the lack thereof, in my case). Learning about a certain celebrity who became disabled at roughly the same age as me has been inspirational, as he still lived his life, got married, had kids, and has a successful career. After all, if he can do all that with a similar disability to my own, surely I can claw my way into building a happy life.
That said, I honestly never noticed that you haven't shared your own diagnosis, or considered simply keeping mine private. It just didn't occur to me. One more thing to work out, I suppose. Regardless, thank you for your work here. It is certainly helping me, and I very much appreciate what you do.
I really like your perspective and kind words! Just remember to be careful with possible comparisons. It’s one thing to look and see someone who gives you hope and strength. But comparisons can sometimes tear you/other people down.
Keep moving forward! 😊
-Gracie
People have no idea how expensive wheelchairs are, what hoops we have to jump through to get parking permits, and that none of us have the spoons for faking something that impairs us every day.
Excellent explanation! It’s not like we expect anyone else to tell us their private medical history when we meet them after all.
I personally love how your content is more focused on the general issues as people get less caught up on “oh it’s just for people with that issue”. Everyone should care about access, not matter the disability or reason they need it. Can’t tell you how much more attention I pay to broken down lifts since watching your videos, truly is shocking.
I think its great you dont let anyone pressure you into sharing your diagnosis! Im very open about autism and mental health but honestly i understand not everyone wants to talk about their disability its your business
I was told I had been diagnosed with GAD and CPTSD. I was also under the impression I had never been diagnosed with ana and thought that I just hadn't been sick for long enough. That didn't bother me, but the diagnoses I was told I had didn't add up, so eventually I brought this up to my CPN, who of course saw no record of this because unknown to me it had been a miscommunication. But she didn't tell me this and made an appointment for me to see a psychiatrist.
Everything was cleared up at that appointment and I was so relieved to hear I didn't have any diagnosis except my autism diagnosis. I also found out I actually had been diagnosed with ana.
Sometimes misdiagnosis happens and sometimes miscommunication about diagnosis happens.
I do like when content creators share their diagnoses, mainly because then I know if their advice that they give will potentially help me or not. I'm fairly new to the chronic illness world, and I'm trying to find others like me and see if they have tips for things like managing my energy and getting stuff done when I feel like absolute crap. Especially when I'm also a mom to a very active toddler. But I also understand wanting/needing the privacy and security of not sharing that detail of your life.
People openly sharing their diagnosis online is how I ended up recognizing that I had the same condition and finally being officially diagnosed with it. That being said, it doesn't bother me at all when people just share their lived experiences but not their diagnoses because, as you mentioned, everyone has the right to their privacy... even RUclipsrs. :)
I have actually never noticed that you have not shared your diagnosis. You make awesome content. And it is very valid. Boundaries are healthy.
I am thinking more 'what is wrong with people' rather than what is wrong with you! It is none of anyone else's business to be honest, it makes me so mad that people feel entitled to anyone's personal information just because you choose to be on social media. Well said! The kind of content you make - it is irrelevant to it, I love that you show that ambulatory wheelchair users exist and have needs which are valid, as so many people assume that everyone in a wheelchair is paralyzed etc or that it is a binary - you are always in a wheelchair or not, which just isn't the case. There is so much assumption around disability that I think you are right that no matter what it would never be enough.
Even If you were a Gluten Free baking channel sharing recipes people still wouldn't be entitled to know if you were ceoliac or not even if they think it would be relevant, because lots of people are Gluten free who aren't ceoliac and even then it still wouldn't be anyone's business, Gluten free brownies still taste amazing even if you are gluten eating.
For goodness sake! I come back to my original comment- what is wrong with people!
Couldn’t have said it better. A diagnosis is nobody’s business but that person’s.
I admire this boundary you have as 1) you need to do what's right for you and 2) the focus on educating abled people about more broad things as opposed to one specific disability is really cool. Not that every channel has to be like that, but you do it really well and there's a lot of value in what you're sharing with and teaching to people.
What's with these entitled people who get upset when other people have boundaries? Influencers are people, not objects put here to do what you want.
This was great. I’m me, not the label. I agree it’s never enough. People who thought I was “faking it” were rarely convinced by more information. People who wanted to help rarely needed an explanation.
I'm always super curious about the medical details because I'm a medicine nerd and want to know exactly how everything works in there. But no, I don't think anyone should be forced to share their diagnosis - especially if they focus on disability in general or on its social\psychological effects. I'm pretty annoyed when there's a video about somebody disabled where they talk about their life with disability but omit important details (like e.g. a whole video is about living with a certain condition and adjusting to it, but the extent and kinds of the symptoms are barely mentioned), but if you just want to do disability advocacy\advice in general, that's awesome. Also, you have the right to share whatever you want, and people have the right to have - and express - their opinions about your content. Some of them just won't be interested in the kind of information you give, and they can say that. They still shouldn't fake claim, obviously, it's rude and does more harm than good even if someone is actually faking. I'm just like, you do you, people will have their thoughts about it anyway, but if they are mature enough, they will hopefully express them politely and with respect. That's what they should do.
My family are like that. They'll say 'oh, is this SOMETHING ELSE you've got', and I try to explain that 'No, this is not something else, this is a new diagnosis and the previous diagnosis' were wrong'. I'm 46 now and I've had difficulties for most of my adult life and even in childhood, I was strange.
We love and support you and your decisions are completely your business
I respect you a lot for turning these dumb comments into a teachable moment. (And for your decision to not disclose) But I'm still annoyed at people for not understanding that they should just mind their own business. I understand sincere curiosity, but some of those comments are just hostile.
I totally understand as there are too many people causing issues like trolls. I have alot of medical and physical diagnosis but find people like to judge and cause issues. Judgement is hard too.
It's understandable that you don't want to share your disability to others who are so immature about the manner anyway! I would understand if you told me in private and of course I wouldn't share it here!
This video is very far off for my algorythm but I’m happy I saw it! Great video that I think everybody would enjoy and benefit from.
I completely understand why you do this 🙈 My mum often starts a conversation with "Oh, she's on a wheelchair and we need an accessible access, but she's actually able to walk short distances etc. So don't worry, she can walk, she's not paralyzed, it's fine." And I feel so weird about it, because I don't understand why should I disclose this to random strangers 🙈 Or she talks about how brave I was during doctor's appointments - like, I'm traumatized, please don't talk about my triggers without me. 🙈 I love my mum amd what she does to inform people I choose to inform, but no matter what I say, she sees nothing wrong with telling strangers. It's very uncomfortable, but it doesn't affect me so much, that'd I'd choose to ruin that day's mood over it. 🙈
There is absolutely no need for anyone to know your private medical information online. I question why people so desperately want to know - like WHY?! It's none of their business! I value you and your content, full stop. The "faking" discourse is so illogical it's laughable. As if anyone would fake being one of the most vulnerable members of society with limited access to many things in life. Nobody would choose this life, nobody.
It's no one else's business unless you wish to share.
My diagnosis is so rare that talking about it is just confuses people when I do share it. I just tell people I have foot deformities.
I find it really interesting to learn about different conditions and identities (especially from the people who have them). However, it's up to individual creators what they want to share and us viewers aren't owed any information.
Because of you, I started moving E scooters, that might be in the way for disabled people. 🥰
Omg ❤❤❤❤❤❤❤
I think what you’ve shared is more than enough: You’re an ambulatory wheelchair user and your access needs vary day-by-day. You have every right to not disclose your diagnosis online unless you want to. We don’t actually need to know your medical information - People on the Internet can just be super nosy!
Also, I appreciate that there are captions on this video, but they’re a bit hard to read. They don’t have a lot of punctuation and they have some errors. I get that writing out captions can be tedious, especially when you’re low on spoons, but having captions that are clear and easy to read will help make your videos more accessible.
Makes sense to me that you wouldn’t want to spend all your time fielding questions about it! For some reason I’m being reminded of that Tory advice that people should ask people with invisible disabilities and badges on the tube what their disability was so they could understand why they needed the seat 🙄.
While I don’t necessarily mind sharing my diagnoses (quite a collection!) at certain times, I do find a lot of people ask so they can try to catch you out. One of my best friends growing up (out of trying to understand) googled one of my main disabilities, she then told me, don’t worry, Wikipedia says you can live a normal life! (Funnily enough she actually understands one of my other disabilities she’s more familiar with as very bad!) Not really understanding co morbidities or that it said SOME people, and when a bunch of us asked about that in our inpatient program they told us that as they could understand it meant that we could usually feed and clean ourselves with adaptions and not much assistance!! Not work or go out etc.
I generally prefer to mask my disabilities when I can on the times I am actually having a good day and am out and about (leading to people thinking I don’t have them or it’s not that bad) to literally avoid those conversations! I find either people are horrified and feel awkward that my life is so awful, feel like they should be fawning over me and make loads of negative well meaning comments (I prefer to not think about pain etc because then I just notice it more intensely, and I’ve spent decades working on my mental health and outlook to detach my mood from my disabilities and instead prefer to be happy and positive and think about the good things in my life and not be told how awful my life is or all the things I’m missing out on!), or they just want to invalidate me and try to catch me out. Either is exhausting and it would probably take me months to actually educate people on all my disabilities if they were that interested!
Well that's the first time hearing of that advice and my jaw is on the floor. Wow that's hideous.
@@stillnotstill I know!
I'm being completely genuine here, I thought "ambulatory wheelchair user" was a good enough explanation for me and everyone.
Maybe my thinking is because My girlfriend is also in a wheelchair, and she nor any doctors know what is actually wrong with her or have a name for it at all.
I thought this was a cover if " What's wrong with me" from mean girls.
Regarding to the video; I love the pin and I completely support your boundaries!
You rock!
I have a few to share. I was on a bus and used a rollator at the time.
Passenger asked “what is wrong with you?”
I replied “I’m a homicidal maniac.”
Another time I was at a buffet and went to get some coffee. Using a scooter at the time.
Someone asked my husband if I had ms. Hubby said “I don’t know. My wife doesn’t tell me everything.”
Btw if I choose to say that I have ms that is my choice. But that doesn’t give me the right to know what someone else is living with.
And I can’t speak for others but my ms is progressive and I have used different mobility tools at different times.
What did they say when you told them you were a homicidal maniac? 😂
I find a lot of people who share their diagnoses then get more hate from followers questioning if they are for real if their symptoms don’t match others with the same diagnosis.
Yep!! It’s honestly a horrid world out there haha xx
I don't care what your disability is, even if it's the same medical condition as mine, we might struggle differently!
Great video Eliza and I love your channel
The sort of decision - to share or not to share a deeply personal part of who you are publicly has to be made with due consideration. As a parallel, a little over a decade ago, I had a genetic test show I have XXXY chromosomes. Having transitioned in gender back in '88, the politics around gender identity in my community are complex. There are folks who happily debate my right to continue identifying as a transwomyn. So, I share this fact about myself selectively. I may be more public as I grow, or not - as I see fit. The point is that we all should get to set the boundaries we need to set to live comfortably, in any community.
Your most persuasive point was at the end - about the potential inaccuracy or changing nature of diagnosis.
Also, not sure you mention it but a person's disability can often be the result of a combination of conditions - eg MS and Bipolar, so it would be confusing to explain which aee attributable to each condition (even with 2).
In my own case, I believe my challenges in life are partly the result of being autistic, but aggravated by having GAD which is what makes it a disabling condition in many situations?
(When my being autistic wouldn't cause any disabling issues, it's just how I am and I can hope okay.
What do you think?
Julia
What is your question?
I appreciate it when people do share their disability cause when I find someone going through the same thing it's nice. However I don't feel like it's right to force anyone to do anything if your curious ask. If they say no you can ask why they don't want to share. Then leave it at that. That's for me personally.
Tbh I wouldn’t even ask why they don’t want to share. They said no and no means no. They don’t need to justify it to you
The Chihuahua makes the Karen role a lot more accurate I'm a huge chi lover
I’ve kinda felt pressured to say mine because I feel like everyone thinks I’m faking it if I don’t. But even then, mine is a spectrum and I’m like an 8.3/10 rn (10 the worst) so I’m also worried people will be like blank has it and they’re completely fine. That can be true on the lower end. My pt said MANY old people only realize they’ve had it once they’re old and broken since it was extremely unknown.
It’s been a popular(?) diagnosis lately aka more awareness of its existence and wow, since it’s a spectrum it’s not as rare as we thought!
You could probably guess just from my clues lol.
I’m also very insecure about it because maybe everyone else does have it as bad or worse than me and I’m just not handing it as well as them
Would you say your last paragraph to somebody else? Would it be okay to treat somebody like that? Don't treat yourself that way, I know it's easier said than done though
❤❤❤
I agree, and understand what you say.
Anyone else remember when they had a bunch of other video? (Reactions, reviews, and blogs talking about their various labels?) including their specific disability
I was a musician in a local band, I was perfectly able to do this as sat down, it gave me total joy. Then as I had to give up the street entertainment part, I was publicly denounced on FB as an 'attention seeking fantasist'. I was mortified, That was five years ago. Since that point I have found it necessary to confess my illness to all....which in turn kind of makes me look a fantasist, but my Cardiologist and Rheumie would argue this. My point is, you are absolutely correct, none of us should have to divulge. I guess the answer is, having a short, reflective no info answer....Maybe 'shark attack?'......
I love your videos, and the fact that you've set boundaries to preserve your privacy is very cool.
I don't know how someone who claims to be a fan could be so disrespectful though. Isn't the point of a lot of your videos that you can never know exactly what another person is going through, and be less quick to judge them based on appearances?
I like it when content creators share their diagnosis, but it's entirely fine if they don't.
Honestly,I don’t care about what your diagnosis is. I care about you as a person and content creator.
I always cry when I see the dog 😅❤❤❤
I understand, but it is sad that you have to hide a part of you. I do it too, for other things. ❤️
I don't think anyone should have to share. People shouldn't question either - neither pressure to share nor ask for evidence.
I wasn't even thinking about your diagnosis until this. It's really none of my business either way.
The fact that people keep insisting that we're faking is really strange. Who the F wants to fake this life? No one wants to deal with the constant pain, fatigue, dealing with the issues of being in a wheelchair, and all the hassle we go through daily. It's costly to have a power wheelchair, buy all the accessories needed to be able to use the wheelchair in all weather and still not be able to visit 80% of the places you used to while you weren't disabled.
The worst part is when the medical community thinks you're faking and/or it's just in your head. I have a rare illness and multiple other conditions that are usually comorbid, but most doctors have never even heard of the first one. Which means they dismiss your symptoms or they blame everything on your diagnosis and won't investigate further.
I have no problem discussing my diagnosis publicly since, in my case, it is important to spread awareness. I also don't ask people about theirs, if you want to tell me you tell me, if not then I will continue to not know.
A no means no, even for medical information.
I'm disabled and can understand were you r coming from cuz I have a bunch of different diagnosis and some people don't understand about this certain diagnosis is that I have so it's just gotten to the point where when I'm on social media that it's gotten to the point I don't give out my diagnosis unless I know it's somebody like a family member or a friend then I we'll talk about it but other than that if it's somebody I don't know I won't
No one needs to validate their existence. And no one has the right to know other people’s business.
I said to each their own as a visually impaired person who’s on RUclips if the person who has a disability wants to share their disability fine that’s cool if they don’t that’s OK too it’s up to the person with the disability not to their followers to try to get it out of themor anything else, but up to the individual that has the dis
I share my diagnosis in places online that have something to do with helping others with similar disabilities. Even if it's just to tell someone that I've been there or am there. Others in the same spaces have done that for me too.
The only people who need to know my diagnosis are my medical team and my support network. I do share quite publicly offline as an activist. This has bitten me in the butt, but I still do it. Eg. No, I am not throwing a tantrum, I'm actually sick!
In the past five years I have had so many symptoms of… something? I went from walking almost everywhere and routinely getting in over 10,000 steps to usually logging in at under 5,000 steps. I need a nap every day otherwise my brain just stops braining. If I go for a long walk or mop I can’t do anything the next day. I topple easily and trip, causing me a variety of injuries like breaking off half of one of my front teeth, briefly knocking myself out, a concussion, and a huge black eye. I’ve taken so freaking many tests and the general consensus is, “Well you are getting older…” I’m 54 years old, not 80. And I fell again last night (on the other side from my cane) and bent all of my fingers backwards, making today an absolute joy.
Also, my memory is horrible and I can’t even remember if I was replying to a comment and RUclips won’t let me check. I think I’m talking about how it can be hard to get a diagnosis and how easy it can be to get diagnosed.
I am also disabled and because my disabilitys are not visible, some people thik, I would fake. I am in a lot communities with disabled persons and no one of them is faking. The only one, who I know is faking the disability, is a beggar, who want to get more money, when he pretends a disability.
Yeah idk why people think it's okay to DEMAND other people to give you their medical information. Like what ???
Even if you knew them in real life it would be rude but it's even more absurd when you're just a random person on the internet asking those questions from a person you dont know.
Of course, there are many people who don't have a diagnosis .... so disclosing 'it' isn't an option!
I think its really cool that you dont share your diagnosises! It's really neat because it means people can't like force your content into the same boxes and just be like oh well this person is talking about POTs which means nothing they say is applicable to anything that isnt POTs which is NOT TRUE. Its just neat
I mean I would be a hypocrite if I said you should say what yours is when in fact I do not share my diagnosis with people at all either, though I do try to give hints, that I have stomach issues that will never go away, but the intricacies of the diagnosis no I don't share everything lol
Never seen you before, i clicked because i thought the thumbnail with your wheelchair looks cool haha!
No its weird to me that people feel like they are entitled to know someones diagnosis or disabilities? Why? Why cant a person make content about being disabled or chronically ill or bed ridden, without sharing their specific medical conditions? It shouldn't matter WHY you are disabled, it should only matter that you give good advice or make a community for people who no matter the disability or illness can relate to each others struggles, achievements, daily life, and so on!
Personally I would like people who are disabled to share why they are disabled and what makes them disabled and what kind of disability they have but it really all comes down to this people who are disabled have to be who they are and they have to go through life with their disability so they have to do what hopefully makes them positive and happy so if sharing makes them happy and positive great and if they share what they feel would make them have any negative feelings then let them be themselves. I also am a disabled person so for me I share about my disability only after I find people who except the first bit of sharing I do and if that is not accepted then they are not the people for me but if that is accepted then they are the people for me and when I find people who accept my first bit of sharing then I open up all about my disability because I know it will be accepted and my disability is an unnoticable kind.
You don't get to have an opinion on what others should share about their lives. Plenty of people share their diagnosis online, but nobody is required to. I'm disabled myself.
Hi, hope you’re doing well
If I compare your content to other disabled creators who do share their diagnosis, it's in no way better or worse content or less/more valid to me. I have a chronic illness (invisible) and although I'm fairly open about it, I don't share it for the sake of satisfying someone else's curiosity.
I love your tshirt. Where can I find one?
Thanks!! www.bonfire.com/accessibility-is160/ ❤️
"you're just faking for attention" dude if I wanted attention I'd just ask for it rather than doing some song and dance over it 😭
Howdy Eliza!
I'm so early!! 39 seconds.
“My diagnosis is: drumroll please”
That’s an odd sounding diagnosis, I have never heard of that before!
Actually, in all seriousness, sharing a diagnosis online should be the person’s choice, not forced. Personally I plan on sharing mine when I finally get a diagnosis, but that is absolutely an individual’s choice, not mandatory (and should never be)…
Also fake claiming is always harmful when there is no confirmation that it is a faker. (Ex. Someone’s family exposing someone who is claiming to have a diagnosis/a different diagnosis…)
Without that, it is much better to just take someone at their word about their diagnosis. Fake claiming people can harm their mental health.
When you realize no comments were hearted..😂
I don't mind sharing personally but I totally respect and understand that you have a right to set boundaries. Thanks for sharing ❤❤❤❤
*GASPS* WHAT A YOUTUDER DOESNT WANT TO SHARE EVERY DELTAIL OF THEIR LIFE DOWN TO THEIR VERY VERY VERY PERSONAL MEDICA HISTORY!?!?!?!??! GULPPPP WHAT AM I GONNA DO NOWWWWWWWWWW
Lol I like your style of sarcasm, it made me smile 😊😊
Honestly, video could have been ten seconds where you just say _"That's rude, it's none of your business."_
They've made shorts before and people clearly don't listen so this was a last attempt to get people to get it
Doesn't bother me at all. The issues you cover are relevant to a ton of different disabilities/diagnoses, so what does it matter? I don't get why folk are acting so entitled about it.
I mean, to be fair, Often if you're out and about, and you have a invisibility disability, and hide it, It's fair that the other person thinks you're faking it, The world isn't as innocent as you'd think, People will do anything to get Infront of line.
No. It's not fair. People don't need to know details in order to trust people aren't lying.
(not that this is necessary in order to trust people, but you know that if somebody was faking they would make up a whole backstory about it and give details, right? Lmfao)
Lmao that was literally already in the video
you are the kind of person that makes people afraid and ashamed to use mobility aids in public. shame on you.
You know you're part of the problem right? You're *why* the world is an unsafe and unfriendly place for disabled people. All out of some bizarre paranoia that someone *might* lie to you about their disability.
Like ffs, let's say someone lies to you saying they have a disability and need the priority seats on the bus. What exactly is the cost, you have to stand for a while in a way you would be happy to do for someone who didn't lie to you? A minor inconvenience. And because you're so terrified of such a minor inconvenience being inflicted on you by a *entirely hypothetical* liar, you're going to accuse any and all disabled people you see of faking?
Honestly it just looks like you want an excuse to be shitty to disabled people.
Hii
Yes your allowed but it’s good for educational purposes
1:43
People arent obligated to share we do personally find it helpful -pinetree