This is SO validating, I've tried to explain this to doctors before and been told that "you can't feel that" or that it "couldn't really be that bad or else I'd be in the hospital or at least crying and screaming" like... You pretty quickly learn that none of those things really do you any good so you just try to do what you can to make things better for yourself 🤷♂️ (shrug)
I also get the sleeping thing.. I always forget how bad that is until it flares up again. The spring time change is really rough, slept like 15 hours today
If someone has no idea what the sensation of joint pain like this can be like, it might be helpful to recall the last time you had REALLY bad gas pains. The sharp, cold sweats kind that make you wonder if you need to go to the ER. Inflamed, irritated intensity. Even momentary relief (taking the weight off, popping the joint...) is often very short lived and you find that the hot burning irritation will build up in one after another affected area...
related more to neurodivergence but, it drives me insane when I try to explain to a professional how I struggle in some way w autism. Like my lack of comprehension, my fear and anxious bc I struggle to mentally process certain things ect... And like I've had a lot of practise /pretending/ I understand and pretending I'm okay/that I understand ect. But ppl who say 'Oh no you just have insecurities. Don't be down on yourself, you're more capable than you know.' It makes me doubt myself but it's also hard to explain the ways that I struggle. And it's frustrating to ask for help and have someone say 'oh don'r put yourself down! u don't need help! you're so smart.' or saying weird shit like that my autism gives me an 'advantage' or that im one of the 'normal' ones. And talking about othet disabled people less able to mask their symptoms to me to explain that im 'better' anz 'more capable' 😑😑
i have chronic back and hip pain. I'm young, (outside of that) healthy, and my gait is usually normal. You can't see, when I'm walking around like everybody else, that at night I have to wait for my back to settle (sometimes for a loooong time) before I can fall asleep.
Last week the government threw up their hands and said they didn’t have any extra money for disabled people during this pandemic, but can find money to change the design of our licence plates then scrap them. I went on Twitter to protest. The amount of able bodied people saying they should kick off the scammers/fakers so they can give money to the people who “TRULY” need it was disturbing. Like you’re not the disability police.
Great video! Able people really don't see this "small" symptoms, and I wish they would because I don't want to explain everytimes, but now there is your video that I can sent to them
if ppl ask me about my disability, if they are someone I already know I talk about it but if its a simple stranger, I tell them that I dont want to talk about it with a stranger sorry and I move on. you dont owe anyone an explanation honestly. I ignore the stares on my feet.
I always watch your videos, even when they're bittersweet for me. I have hEDS too, but my case is milder. I can pick up about 3 lbs before my fingers/wrists hurt, my knees don't bend so far backwards as to cause pain when I lay flat, and I can walk a good mile and a half before the pain is so bad that I /have/ to sit down. But I can't drive for more than like 5 minutes, so I don't a licence, and in the US, that immediately consigns you to second-class-citizen and I get called 'childish' by relatives. :/ The process of applying for disability is humiliating because, like you've said, I /can/ do The Thing... But it really freakin' hurts, and I can't do it for very long at all! The fatigue, though. I get that, definitely. If I have to be 'out of the house' for dr's appts or errands or even fun things like movies, i need about 2 days spent resting at home for every day 'out', and it gets worse in teh winter or when I'm sick. Which is often. Because pushing myself to do, say, 3 or 4 days out in a row, that tanks my immune system and I get cold-symptoms. I have the opposite of your heat-intolerance - and you live in a warm US state, right?, that must be awful! :c I get tachycardia and the mental-panic when I'm too cold for too long. Combine that with vitamin-D drop during the winter here in the Midwest and boom, winter is /awful./ But I'm not brave enough to move south, as an LGBT!+ person; i'm too afraid of bigots. Plus, in the south, I've heard the bus systems are basically non-existent, and I grew up near Chicago, so I /need/ good buses! Also, the bugs. I grew up with winters that killed the bugs, so I'm not brave enough to face spiders and wasps n shit all year long! :c The pain is invisible, the fatigue is invisible, it's so frustrating to miss hours, to miss days, of your life... I absolutely feel that. I spend way, way longer on TH-cam and twitch than I ever did in high school, trying to get human interaction and learning new stuff... It definitely was, and continues to be, a big adjustment to a different kind of life, with smaller goals and fewer opportunities. It teaches me to be more zen, and focus on the now and all that. I'm not great at it yet, but better than I was last year!
one of the hardest of my “invisible” symptoms include auditory processing disorder which makes it impossible to understand what people are saying like 90% of the time in public places so i just have to pretend to understand things constantly or risk people getting mad at me for having to repeat things over and over. and yeah like the thing you’re saying about standing for too long. i usually end up sitting on the floor in public and it can be embarrassing. thanks for this video, i am using your pain descriptions/analogies at my doctor appointments bc its so hard for me to describe my pain. so just know you are really doing amazing things by sharing these intimate parts of yourself. thanks for being you.
This was hard to watch in a way because it hit so close to home but it was also so good for me to watch to feel less alone about all these little everyday things I experience
Thank you i'm in process of diagnosis of EDS and to be honest contently questioning myself. so much of what you have said is my life ,the rubber band thing is how my legs always feel when trying to walk. the inability to stand still... no one thinks of it in fact a lot of people are like "if you cant walk just stand still till we have a seat" like its so refreshing to hear someone say the same. its all quite intense and i just feel so validated listening to someone else say they feel the same things i do. thank you so much.
Omg, having EDS+ a CSF leak.... I’d be fine and then all of a sudden I’d have had too much “up time” and my csf pressure dropped. It was an extreme change in the way I was feeling and onset of so many neurological symptoms but no one could tell.
Hi! I have fibromyalgia, so basically my entire condition is invisible if you don't ask me how I'm feeling. If I rest a lot, I can get a bit under an hour of pain-free time on my feet per day. If I don't rest enough, this pain-free time is cut down to just five minutes. After that, every time I put pressure on my legs it increases this painful feeling that I am walking through some sort of goop. It is almost always painful to stand and often painful to walk. I can still physically stand and walk, but the pain is often a huge burden on me. I also have a headache that never goes away. Between it and the rest of my pain and my fatigue, I often forget things I was just told or just read or just did, and I have to take the time to backtrack to figure out what was just going on. Sometime my brain will just skip fifteen seconds or so and I will never know what happened with that lost time. This all makes it really really hard to get through college, especially because stress makes my symptoms worse. My friends get stressed and just get stressed, while when I get stressed it becomes even more difficult to walk and exist which leads to more stress and leaves me stuck in a feedback loop of pain I can't get out of without taking time away from my work to rest.
Prism [it/its] I don’t know. I just know for me my leg pain and headaches are the ones that impact my day to day life the most. I also have hand pain, hip pain, brain fog, fatigue, and elbows that are super sensitive to pressure.
@@AidanKedzierski I might try and get checked for fibro this year then. It's the only thing ive really found that would actually explain most of my symptoms. Ty!
I just got diagnosed with HSD yesterday by a Rheumatologist and I have a referral to see a Geneticist next, but I relate to a lot of what you say... I'm 31 years old just not being able to get a diagnosis for all my ailments and issues.. I'm very nervous for the future tbh.
My 19th birthday is coming soon and I'm waiting on test results for EDS. They got my collagen tested in case genetic testing comes back negative to have more evidence for hEDS (I have low collagen). The little symptoms that no one can see are worse for me than the most visible.
Constant reflux symptoms, heartburn, nausea, stomach ache etc., especially while trying to force food down my throat... no one can see that and many people tell me "why are you eating so slowly? hurry up!". Thank you EDS for screwing up my digestive system >.
God bless you! I lost it when you held up your left arm and described the feeling as this has been me over the last few years. How people survive is beyond me! And you are younger than me. I am so sorry.
Thank you for sharing your perspective! It's comforting when people share their struggles because it's a reminder other people go through some of the same things. Although in a perfect world I would wish that nobody had chronic pain ❤✨
This Channel deserves so much more viewers!! You explain things so clear and precise. Thank you so much for sharing you experiences and struggles with us. Love you.
I watched the live thing of this but I'll comment here as well, it feels amazing to be seen in such an accurate way and have someone share such similar experiences. I completely understand your descriptions of things and it means a lot for others to relate to my Weird Body Things™
In my experience, you'll know when it's time for mobility aids. For me, it got to a point where it wasn't a matter of choice, but necessity. If anyone is unsure, there's no reason why you can't try to get your hands on one to see if it helps! My first aid was a $5 cane from goodwill. Couldn't believe I had waited so long to use one.
Hey Annie! Thanks, videos like this should be public service announcements! About your seat cane, I have one as well, so I wanted to let you know first hand, that style of cane can be unstable & tip over, which happened to me a few times. Please be careful! I very recently bought an EZ Lite chair, due to your review (I figured, since we both have EDS, anything you found helpful or not might apply to me, EDS wise, too). Lastly, your hair looks AMAZING! I'm going back to sleep now, only had enough energy spoons to watch & reply to this one video, g'nite all~
Thanks for this, Annie. It's good to see you back! I like that you are so definitive/detailed about your symptoms. To me this like a play and you are telling us what goes on behind the scenes. I have Spina bifida and related conditions and an realising as a result of this video that I need to tell people what goes on behind the scenes. [Or at least write it down so I know]! Visible disabilities aren't all they are cracked up to be! Bonus: people do know you have a disability. Most people don't know about the behind the scenes 'stuff'' [e.g. I walk on crutches. But what people don't know that my balance is poor when I sit down]. I like people in my life to understand the 'behind the scenes stuff'. It means that I can have a closer relationship with her/him. What I tend to do for people who don't know is to tell them 'on the spot'. I often make a joke about it because I think irony is so funny. To give you an e'g. if someone offers me a chair on wheels, I might say something like 'I would sit in that chair but that would entail a ride in an ambulance.' [To me that's funny]. I then go on to explain what type of seating is suitable for me. You may appreciate this. A friend of mine is mad about physical fitness/sports. Anyway, my body has changed, so she was suggesting new exercises I may like to try. The conversation went like this. She made her first suggestion. I replied 'Truffy, I would do that but I would end up in hospital.' She then made another suggestion, to which I replied: 'hospital'. She made about 4 other suggestions, to which I replied: 'hospital.' In the end we were both cracking up [Australian for laughing]. I was saying hospital before she could finish each suggestion. I also follow Stevie Boebi. She mentioned that you helped her with her ablelist ideas [my interpretation. Not what she said]. I will look at your previous videos to see if you describe what is ableist and what isn't as I am interested in your thoughts. I think from what I remember you actually talk about it all the time. I wonder if you have put them in categories e.g 'traits that cause one to abandon one's needs'. I think one of my greatest difficulty comes when dealing with people who are very ableist but sware black and blue that they are not! Besides decking people like this [said tounge-in-cheek] how do you or your subcribers/audience deal with this one. I wanted to acknowledge what you said about being autistic and that I hear you. I don't have anything else to say there. Before I sign off, I wanted to ask: [1] do you have a postal address? [2] Can one still get the 'the future is accessible' t-shirts from you? [3] said as a ssa woman. 'How is it that you have such beautiful hair?' [4] have Iwritten too much. Cheers, Alison. [Australia].
i have hEDS with hugely varying symptoms and abilities. on a very good day, wearing knee and arm braces, i can swing dance (one of my favorite things) for a few minutes. on other days, when my mast cells flare and my overall pain levels spike from a 4-5 to a 9 i am in bed all day. i am very lucky that i have naturally strong musculature and an excellent pt which allows me to do quite a lot some days, but that often results in a lot of issues with accessibility when i'm not doing so well. it is so awesome to
(2) hear u talk about your varying abilities bc i often feel like i gaslight myself along with ableist strangers about how i should try harder and "well u could do this thing yesterday/last week/whatever tf". so yeah, tysm for your awesome content, you really are helping a lot of ppl and giving me new ideas about how to navigate my ever-changing reality.
this is a really helpful video! i know i’m terrible at talking about my own pain and i’m trying to grow my vocabulary. off topic but your new room set up/makeover looks gorgeous!
You explain this so well, and it really helps me form my own thoughts and words in explaining my own experience, which is so relatable to this experience. I have hEDS, POTs, Chiari and MS. I try to explain to others that my energy is very palpably finite and everything is a trade off.
I had to miss almost all of last week because I kept refusing to see a doctor until I ended up in the ER on fluids and with a fever of 103. 😔 it's frustrating trying to forfe myself to act well even when I'm not. Or to make myself look "normal" to others so I feel less like an outsider.
omg I am loving your videos! I was recently diagnosed with fibromyalgia, and I had thought EDS for a time. My experience is quite a lot like this, thank you for sharing, I don't even realize this isn't the 'normal' experience sometimes XD.
A lot of my anxiety is actually POTS symptoms, and I'm still learning to differentiate. I'd get up early to go to Uni, and would end up being upright too many hours before my lecture and I'd end up with this painful feeling in my chest. In retrospect it's so obvious that it was my heart doing all it could to keep my blood pumping, but I could only read it as anxiety.
Greeeeesaaat vid!!!! I try to explain to my husband, kids etc- pulling up my leggings, like you said for example; showering, dressing etc etc laying down- the pain or issues are All ways there!!! So hard for others to get!!!
Wanted to add to the "just saying" part of this that, statistically speaking, the personality type required to fake a disability for any length of time is roughly about 1/1,000,000 while the amount of people with conditions that require outside aid (cane, wheelchair, guide dog, etc.) is more like 1/500. I'm sorry for not adding citations as I'm writing this on the fly but I'm being particularly rough with the numbers to keep them in the right ballpark. So if you see someone who uses aid, or even hear about it, there is roughly a 99.95% chance they are genuine. Or, to put it another way, faking a disability is incredibly difficult, has little to no benefits and is almost impossible to keep up over any long period of time. Note: I am including psychosomatic illnesses, hypochondria, Munchausen's, and other disorders of the type in the "not faking it" category for what I hope are obvious reasons.
Wow well done explaining I have eds as well along with many other things and something I struggle with that nobody can see is being nauseous all the time
Thanks for this video! For me is sometimes really difficult when people around me don't see my pains and handicaps. For ex. When I'm sitting on a bus and it have no more sitting places or when somebody need some help to charge something or when I can't do everything... I have syringomyelia, artrosis, scoliosos, EDS, back problems and Fibromyalgia,... Those are all "invisible" things. Family, friends and people around me can't see my struggles and not all understands me. It's not easy to live with those "problems" and don't use a wheel chair or other helping aids. But I think this would help me. But I'm only 33 years old, feeling like 90...👵🏻
I’m still undiagnosed after five years of being diagnosed with an autoimmune disorder. But my symptoms have increased. My heart goes through these flares of tachycardia and I get numbness, tingling and fast heart beat which gives me shortness of breath and pain in my feet, legs,arms, hands, and chest. It last for about a weak and then calms down and goes away. But my feet and ankles hurt so bad I can’t really put to much weight on one but when both act up I can walk very far or fast at all. Which scares me because I need to do something other than laying in the bed most of the time. It’s nothing healthy, but I feel awful most of the time.
Some things about me that people wouldnt know unless I explained it is I am hard of hearing, my right ear is very limited as to what I can hear depending on my surroundings. Ive gotten good at reading lips but even then it is hard. I'm autistic but unless I told you you may not know. Walking and standing are hard because of my POTS, fatigue and pain. I suffer with MCAS reactions and horrible allergies but I am good at hiding them. My daily life is a struggle between what I can do and what I should do to conserve spoons. Almost daily I am out of spoons by noon and it sucks.
Yo where my fellow POTSies at? #DysautonomiaClub Still don't know what's wrong with me that triggered the POTS, but my joints are garbage and hurt a lot. I don't have any hypermobility or dislocations though, so IDK if it's related to EDS. I've been tested for Rheumatoid issues and all of them were negative. I just wanna know what's wrong with meeeee.
2:44 It does to me. 3:58 That hurts me just listening to it! *shudder* 13:56 If you were meaning to find out if we'd notice that you had already told us about the pain you feel when standing, I was paying attention. 15:02 This makes me think of some able-bodied people possibly saying they know what it's like to be in a wheelchair, just because they've had to use a wheelchair for a limited time after having had an accident.
I fell the same stuff & to explain why i use a walker now & try keep this condition hidden like hide afo under pant as a kid but it more noticeable as i get older
I can tenqunecially do a lot of things but that doesn't mean i can do them without huge consequences. I don't tend to get imdeate pain because of my sensory processing disorder so that makes it harder to pace. unless I am using my wheelchair or other aid people would never know I'm disabled and even then they would not be able to know anywhere near the extent to what I deal with day to day. My mental health symptoms are rarely visible, mainly because I cover scares and am good at hiding panic attacks. People are unlikely to realize without talking to me and then they might but it depends on the day would probably not realize I'm autistic. People think I'm rude for wearing headphones and sunglasses to manage sensory processing disorder. Most of the time people can't see the pain and other physical symptoms i get until my body starts shutting down and thats way too late. If I have a melt down people are likely to make it worse and not realizing the severity of the situation. People touch me and I hate that. Most of the time when I'm in public I use my chair and always have someone with me but I have had situations on public transport where people have got annoyed, for years when I was a kid (before we knew about it) in trains I would sit on the floor because I could not stand up and couldn't get a seat. People don't realize how much all the meetings and appointments take out of me, which is why we limit them. People don't see the brain fog. People don't realize that hyper (which looks like really excited) is bad. People don't understand how much I want to do soo much. I'm naturally a driven person and I want to be constantly productive but I in reality have 20 -30 hours a week of time with capacity, depending on whats happening often I have less.
nice video, good to learn these things so i can be a good friend to a person with eds or other chronic pain condition when that happens. I am autistic, epileptic and dyspraxic each of these is invisible unless among other things i stop masking or get sensory over load or ahve eycontact forced which is autism related, do writing of have to walk a lot among other things (dyspraxcia) of have a seizure in public, otherwise i have to tell people
I had to skip put on a walk through a pretty park we drove a while to get to becaise suddenly i felt as if my collarbone slid out of place and my entire right side started having spasms and cramps. Im really upset because to everyone else it just looks like I got angry and decided to pout in the car
Hi Annie, I am legally blind/ visually impaired and I use a white cane mainly when I’m on my own & I’m feel like I’m “coming out’ every time I leave my house.
thanks for sharing this pertinent crucial narrative neurodivergent and disability solidarity thanks for bringing your voice and experience to this you are expanding awareness no one should suffer alone as a autistic person suffering from alcoholism I know that from my own experience informative video comrade
Dysautonomia means "dysfunctioning of the autonomic system", which in plain english means that the automatic things in your body (like breathing and blood flow) aren't happened exactly correctly. So every person is going to have different symptoms because there are so many different symptoms that dysautonomia can cause. Fainting caused by blood pressure issues is very scary and obvious, so I think this is why most people focus on the blood pressure symptoms when they talk about dysautonomia. For me, I experience low and unregulated blood pressure, random body temperature, digestive problems, increased gag reflex, inability to sleep properly, peeing too often or not enough and other bathroom struggles, and more, all due to dysautonomia.
Some of what you are talking about are things that I have felt in my past. I talk about in a video I made. th-cam.com/video/PDcTGA_4yl8/w-d-xo.html and another video I made from my perspective th-cam.com/video/JXDpW1-rcJo/w-d-xo.html I have had some people say to me "I wouldn't want what you have" after I explain to them whatit's like to go through what I go through.
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![Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]](/img/tr.png)
![Disability Misconceptions Tag (EDS) [CC]](http://i.ytimg.com/vi/sBSzm9RbXAY/mqdefault.jpg)
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This is SO validating, I've tried to explain this to doctors before and been told that "you can't feel that" or that it "couldn't really be that bad or else I'd be in the hospital or at least crying and screaming" like... You pretty quickly learn that none of those things really do you any good so you just try to do what you can to make things better for yourself 🤷♂️ (shrug)
I also get the sleeping thing.. I always forget how bad that is until it flares up again. The spring time change is really rough, slept like 15 hours today
Explaining invisible Disability is so important
If someone has no idea what the sensation of joint pain like this can be like, it might be helpful to recall the last time you had REALLY bad gas pains. The sharp, cold sweats kind that make you wonder if you need to go to the ER.
Inflamed, irritated intensity. Even momentary relief (taking the weight off, popping the joint...) is often very short lived and you find that the hot burning irritation will build up in one after another affected area...
related more to neurodivergence but, it drives me insane when I try to explain to a professional how I struggle in some way w autism. Like my lack of comprehension, my fear and anxious bc I struggle to mentally process certain things ect...
And like I've had a lot of practise /pretending/ I understand and pretending I'm okay/that I understand ect.
But ppl who say 'Oh no you just have insecurities. Don't be down on yourself, you're more capable than you know.' It makes me doubt myself but it's also hard to explain the ways that I struggle. And it's frustrating to ask for help and have someone say 'oh don'r put yourself down! u don't need help! you're so smart.' or saying weird shit like that my autism gives me an 'advantage' or that im one of the 'normal' ones. And talking about othet disabled people less able to mask their symptoms to me to explain that im 'better' anz 'more capable' 😑😑
i have chronic back and hip pain. I'm young, (outside of that) healthy, and my gait is usually normal. You can't see, when I'm walking around like everybody else, that at night I have to wait for my back to settle (sometimes for a loooong time) before I can fall asleep.
Last week the government threw up their hands and said they didn’t have any extra money for disabled people during this pandemic, but can find money to change the design of our licence plates then scrap them. I went on Twitter to protest. The amount of able bodied people saying they should kick off the scammers/fakers so they can give money to the people who “TRULY” need it was disturbing. Like you’re not the disability police.
Great video! Able people really don't see this "small" symptoms, and I wish they would because I don't want to explain everytimes, but now there is your video that I can sent to them
if ppl ask me about my disability, if they are someone I already know I talk about it but if its a simple stranger, I tell them that I dont want to talk about it with a stranger sorry and I move on. you dont owe anyone an explanation honestly. I ignore the stares on my feet.
Explaining takes energy sometimes. I understand how you feel
HannahLouisiana yesss not only that but it also goes with different emotions knowing what Ive been through. That also goes for anyone else.
I always watch your videos, even when they're bittersweet for me. I have hEDS too, but my case is milder. I can pick up about 3 lbs before my fingers/wrists hurt, my knees don't bend so far backwards as to cause pain when I lay flat, and I can walk a good mile and a half before the pain is so bad that I /have/ to sit down. But I can't drive for more than like 5 minutes, so I don't a licence, and in the US, that immediately consigns you to second-class-citizen and I get called 'childish' by relatives. :/ The process of applying for disability is humiliating because, like you've said, I /can/ do The Thing... But it really freakin' hurts, and I can't do it for very long at all!
The fatigue, though. I get that, definitely. If I have to be 'out of the house' for dr's appts or errands or even fun things like movies, i need about 2 days spent resting at home for every day 'out', and it gets worse in teh winter or when I'm sick. Which is often. Because pushing myself to do, say, 3 or 4 days out in a row, that tanks my immune system and I get cold-symptoms. I have the opposite of your heat-intolerance - and you live in a warm US state, right?, that must be awful! :c
I get tachycardia and the mental-panic when I'm too cold for too long. Combine that with vitamin-D drop during the winter here in the Midwest and boom, winter is /awful./ But I'm not brave enough to move south, as an LGBT!+ person; i'm too afraid of bigots. Plus, in the south, I've heard the bus systems are basically non-existent, and I grew up near Chicago, so I /need/ good buses! Also, the bugs. I grew up with winters that killed the bugs, so I'm not brave enough to face spiders and wasps n shit all year long! :c
The pain is invisible, the fatigue is invisible, it's so frustrating to miss hours, to miss days, of your life... I absolutely feel that. I spend way, way longer on TH-cam and twitch than I ever did in high school, trying to get human interaction and learning new stuff...
It definitely was, and continues to be, a big adjustment to a different kind of life, with smaller goals and fewer opportunities. It teaches me to be more zen, and focus on the now and all that. I'm not great at it yet, but better than I was last year!
one of the hardest of my “invisible” symptoms include auditory processing disorder which makes it impossible to understand what people are saying like 90% of the time in public places so i just have to pretend to understand things constantly or risk people getting mad at me for having to repeat things over and over.
and yeah like the thing you’re saying about standing for too long. i usually end up sitting on the floor in public and it can be embarrassing.
thanks for this video, i am using your pain descriptions/analogies at my doctor appointments bc its so hard for me to describe my pain. so just know you are really doing amazing things by sharing these intimate parts of yourself. thanks for being you.
This was hard to watch in a way because it hit so close to home but it was also so good for me to watch to feel less alone about all these little everyday things I experience
Yeah, same for me.
I'm hard of hearing and haven't been able to access hearing aids yet (insurance issues). People assume I can hear them and then get mad when I don't.
Thank you i'm in process of diagnosis of EDS and to be honest contently questioning myself. so much of what you have said is my life ,the rubber band thing is how my legs always feel when trying to walk. the inability to stand still... no one thinks of it in fact a lot of people are like "if you cant walk just stand still till we have a seat" like its so refreshing to hear someone say the same. its all quite intense and i just feel so validated listening to someone else say they feel the same things i do. thank you so much.
Omg, having EDS+ a CSF leak.... I’d be fine and then all of a sudden I’d have had too much “up time” and my csf pressure dropped. It was an extreme change in the way I was feeling and onset of so many neurological symptoms but no one could tell.
Hi! I have fibromyalgia, so basically my entire condition is invisible if you don't ask me how I'm feeling. If I rest a lot, I can get a bit under an hour of pain-free time on my feet per day. If I don't rest enough, this pain-free time is cut down to just five minutes. After that, every time I put pressure on my legs it increases this painful feeling that I am walking through some sort of goop. It is almost always painful to stand and often painful to walk. I can still physically stand and walk, but the pain is often a huge burden on me. I also have a headache that never goes away. Between it and the rest of my pain and my fatigue, I often forget things I was just told or just read or just did, and I have to take the time to backtrack to figure out what was just going on. Sometime my brain will just skip fifteen seconds or so and I will never know what happened with that lost time. This all makes it really really hard to get through college, especially because stress makes my symptoms worse. My friends get stressed and just get stressed, while when I get stressed it becomes even more difficult to walk and exist which leads to more stress and leaves me stuck in a feedback loop of pain I can't get out of without taking time away from my work to rest.
Is it common at all for fibro to mostly affect legs? Asking for a friend (jk it's for me)
Prism [it/its] I don’t know. I just know for me my leg pain and headaches are the ones that impact my day to day life the most. I also have hand pain, hip pain, brain fog, fatigue, and elbows that are super sensitive to pressure.
@@AidanKedzierski I might try and get checked for fibro this year then. It's the only thing ive really found that would actually explain most of my symptoms. Ty!
I just got diagnosed with HSD yesterday by a Rheumatologist and I have a referral to see a Geneticist next, but I relate to a lot of what you say... I'm 31 years old just not being able to get a diagnosis for all my ailments and issues.. I'm very nervous for the future tbh.
the “gravity too much” description really got me, it rings really true to my experience. thank you for your content, always!
My 19th birthday is coming soon and I'm waiting on test results for EDS. They got my collagen tested in case genetic testing comes back negative to have more evidence for hEDS (I have low collagen). The little symptoms that no one can see are worse for me than the most visible.
Constant reflux symptoms, heartburn, nausea, stomach ache etc., especially while trying to force food down my throat... no one can see that and many people tell me "why are you eating so slowly? hurry up!". Thank you EDS for screwing up my digestive system >.
God bless you! I lost it when you held up your left arm and described the feeling as this has been me over the last few years. How people survive is beyond me! And you are younger than me. I am so sorry.
Thank you for sharing your perspective! It's comforting when people share their struggles because it's a reminder other people go through some of the same things. Although in a perfect world I would wish that nobody had chronic pain ❤✨
This Channel deserves so much more viewers!! You explain things so clear and precise. Thank you so much for sharing you experiences and struggles with us. Love you.
I watched the live thing of this but I'll comment here as well, it feels amazing to be seen in such an accurate way and have someone share such similar experiences. I completely understand your descriptions of things and it means a lot for others to relate to my Weird Body Things™
Girl you are describing exactly my experience. When did you know it was time for mobility aids?
I need to know this too!
In my experience, you'll know when it's time for mobility aids. For me, it got to a point where it wasn't a matter of choice, but necessity. If anyone is unsure, there's no reason why you can't try to get your hands on one to see if it helps! My first aid was a $5 cane from goodwill. Couldn't believe I had waited so long to use one.
Hey Annie! Thanks, videos like this should be public service announcements! About your seat cane, I have one as well, so I wanted to let you know first hand, that style of cane can be unstable & tip over, which happened to me a few times. Please be careful! I very recently bought an EZ Lite chair, due to your review (I figured, since we both have EDS, anything you found helpful or not might apply to me, EDS wise, too). Lastly, your hair looks AMAZING! I'm going back to sleep now, only had enough energy spoons to watch & reply to this one video, g'nite all~
Thanks for this, Annie. It's good to see you back! I like that you are so definitive/detailed about your symptoms. To me this like a play and you are telling us what goes on behind the scenes. I have Spina bifida and related conditions and an realising as a result of this video that I need to tell people what goes on behind the scenes. [Or at least write it down so I know]! Visible disabilities aren't all they are cracked up to be! Bonus: people do know you have a disability. Most people don't know about the behind the scenes 'stuff'' [e.g. I walk on crutches. But what people don't know that my balance is poor when I sit down]. I like people in my life to understand the 'behind the scenes stuff'. It means that I can have a closer relationship with her/him. What I tend to do for people who don't know is to tell them 'on the spot'. I often make a joke about it because I think irony is so funny. To give you an e'g. if someone offers me a chair on wheels, I might say something like 'I would sit in that chair but that would entail a ride in an ambulance.' [To me that's funny]. I then go on to explain what type of seating is suitable for me. You may appreciate this. A friend of mine is mad about physical fitness/sports. Anyway, my body has changed, so she was suggesting new exercises I may like to try. The conversation went like this. She made her first suggestion. I replied 'Truffy, I would do that but I would end up in hospital.' She then made another suggestion, to which I replied: 'hospital'. She made about 4 other suggestions, to which I replied: 'hospital.' In the end we were both cracking up [Australian for laughing]. I was saying hospital before she could finish each suggestion. I also follow Stevie Boebi. She mentioned that you helped her with her ablelist ideas [my interpretation. Not what she said]. I will look at your previous videos to see if you describe what is ableist and what isn't as I am interested in your thoughts. I think from what I remember you actually talk about it all the time. I wonder if you have put them in categories e.g 'traits that cause one to abandon one's needs'. I think one of my greatest difficulty comes when dealing with people who are very ableist but sware black and blue that they are not! Besides decking people like this [said tounge-in-cheek] how do you or your subcribers/audience deal with this one. I wanted to acknowledge what you said about being autistic and that I hear you. I don't have anything else to say there. Before I sign off, I wanted to ask: [1] do you have a postal address? [2] Can one still get the 'the future is accessible' t-shirts from you? [3] said as a ssa woman. 'How is it that you have such beautiful hair?' [4] have Iwritten too much. Cheers, Alison. [Australia].
Best explanation seriously!!! Wow makes me think this should be sent to tons of friends and family for explaining how it feels daily.
Awww thanks so much!
i have hEDS with hugely varying symptoms and abilities. on a very good day, wearing knee and arm braces, i can swing dance (one of my favorite things) for a few minutes. on other days, when my mast cells flare and my overall pain levels spike from a 4-5 to a 9 i am in bed all day. i am very lucky that i have naturally strong musculature and an excellent pt which allows me to do quite a lot some days, but that often results in a lot of issues with accessibility when i'm not doing so well. it is so awesome to
(2) hear u talk about your varying abilities bc i often feel like i gaslight myself along with ableist strangers about how i should try harder and "well u could do this thing yesterday/last week/whatever tf". so yeah, tysm for your awesome content, you really are helping a lot of ppl and giving me new ideas about how to navigate my ever-changing reality.
this is a really helpful video! i know i’m terrible at talking about my own pain and i’m trying to grow my vocabulary.
off topic but your new room set up/makeover looks gorgeous!
You explain this so well, and it really helps me form my own thoughts and words in explaining my own experience, which is so relatable to this experience. I have hEDS, POTs, Chiari and MS. I try to explain to others that my energy is very palpably finite and everything is a trade off.
i love seeing all these 'new' yt videos with people talking about living with eds/dysauto/mast cell and the various things that go along with it!
I had to miss almost all of last week because I kept refusing to see a doctor until I ended up in the ER on fluids and with a fever of 103. 😔 it's frustrating trying to forfe myself to act well even when I'm not. Or to make myself look "normal" to others so I feel less like an outsider.
Great video, will likely send it to people who I know want to try and understand me but I'm flaring too badly to properly educate at the moment.
Great video, thank you Annie for sharing in a vulnerable and honest way, we like you a lot!!
omg I am loving your videos! I was recently diagnosed with fibromyalgia, and I had thought EDS for a time. My experience is quite a lot like this, thank you for sharing, I don't even realize this isn't the 'normal' experience sometimes XD.
A lot of my anxiety is actually POTS symptoms, and I'm still learning to differentiate. I'd get up early to go to Uni, and would end up being upright too many hours before my lecture and I'd end up with this painful feeling in my chest. In retrospect it's so obvious that it was my heart doing all it could to keep my blood pumping, but I could only read it as anxiety.
Hugs and healing thoughts are coming your way! Its sad any of us have to struggle with these things, myself included. You are not alone!
Sending love to all my EDS people.we are zebra strong! 🌈 🦓
Compelling video. Well done!Hope you're staying healthy and safe🤙🏼🌼
🙏🙏🙏
Greeeeesaaat vid!!!! I try to explain to my husband, kids etc- pulling up my leggings, like you said for example; showering, dressing etc etc laying down- the pain or issues are All ways there!!! So hard for others to get!!!
Wanted to add to the "just saying" part of this that, statistically speaking, the personality type required to fake a disability for any length of time is roughly about 1/1,000,000 while the amount of people with conditions that require outside aid (cane, wheelchair, guide dog, etc.) is more like 1/500. I'm sorry for not adding citations as I'm writing this on the fly but I'm being particularly rough with the numbers to keep them in the right ballpark. So if you see someone who uses aid, or even hear about it, there is roughly a 99.95% chance they are genuine. Or, to put it another way, faking a disability is incredibly difficult, has little to no benefits and is almost impossible to keep up over any long period of time. Note: I am including psychosomatic illnesses, hypochondria, Munchausen's, and other disorders of the type in the "not faking it" category for what I hope are obvious reasons.
I hate when I go to pay at the pump and then I end up having to pay inside. I have to go back into my car for my cane when that happens.
Wow well done explaining I have eds as well along with many other things and something I struggle with that nobody can see is being nauseous all the time
Thanks for this video!
For me is sometimes really difficult when people around me don't see my pains and handicaps.
For ex. When I'm sitting on a bus and it have no more sitting places or when somebody need some help to charge something or when I can't do everything...
I have syringomyelia, artrosis, scoliosos, EDS, back problems and Fibromyalgia,...
Those are all "invisible" things.
Family, friends and people around me can't see my struggles and not all understands me.
It's not easy to live with those "problems" and don't use a wheel chair or other helping aids.
But I think this would help me. But I'm only 33 years old, feeling like 90...👵🏻
I’m still undiagnosed after five years of being diagnosed with an autoimmune disorder. But my symptoms have increased. My heart goes through these flares of tachycardia and I get numbness, tingling and fast heart beat which gives me shortness of breath and pain in my feet, legs,arms, hands, and chest. It last for about a weak and then calms down and goes away. But my feet and ankles hurt so bad I can’t really put to much weight on one but when both act up I can walk very far or fast at all. Which scares me because I need to do something other than laying in the bed most of the time. It’s nothing healthy, but I feel awful most of the time.
Unrelated I'm loving the new room design. I'd love to see a room tour video at some point. 🙂
Lol the ads that came up are Voltaren and ibuprofen. They know their audience
Always appreciate your content x keep doing what you can to not push yourself too far xx
Some things about me that people wouldnt know unless I explained it is I am hard of hearing, my right ear is very limited as to what I can hear depending on my surroundings. Ive gotten good at reading lips but even then it is hard. I'm autistic but unless I told you you may not know. Walking and standing are hard because of my POTS, fatigue and pain. I suffer with MCAS reactions and horrible allergies but I am good at hiding them. My daily life is a struggle between what I can do and what I should do to conserve spoons. Almost daily I am out of spoons by noon and it sucks.
Luv the video, was helpful to listen too, luv u Annie 💜
Yo where my fellow POTSies at? #DysautonomiaClub
Still don't know what's wrong with me that triggered the POTS, but my joints are garbage and hurt a lot. I don't have any hypermobility or dislocations though, so IDK if it's related to EDS. I've been tested for Rheumatoid issues and all of them were negative. I just wanna know what's wrong with meeeee.
2:44 It does to me.
3:58 That hurts me just listening to it! *shudder*
13:56 If you were meaning to find out if we'd notice that you had already told us about the pain you feel when standing, I was paying attention.
15:02 This makes me think of some able-bodied people possibly saying they know what it's like to be in a wheelchair, just because they've had to use a wheelchair for a limited time after having had an accident.
100% with you on the hand weakness and fatigue
Super good video, Annie, thanks!!
I fell the same stuff & to explain why i use a walker now & try keep this condition hidden like hide afo under pant as a kid but it more noticeable as i get older
I can tenqunecially do a lot of things but that doesn't mean i can do them without huge consequences. I don't tend to get imdeate pain because of my sensory processing disorder so that makes it harder to pace. unless I am using my wheelchair or other aid people would never know I'm disabled and even then they would not be able to know anywhere near the extent to what I deal with day to day. My mental health symptoms are rarely visible, mainly because I cover scares and am good at hiding panic attacks. People are unlikely to realize without talking to me and then they might but it depends on the day would probably not realize I'm autistic. People think I'm rude for wearing headphones and sunglasses to manage sensory processing disorder. Most of the time people can't see the pain and other physical symptoms i get until my body starts shutting down and thats way too late. If I have a melt down people are likely to make it worse and not realizing the severity of the situation. People touch me and I hate that. Most of the time when I'm in public I use my chair and always have someone with me but I have had situations on public transport where people have got annoyed, for years when I was a kid (before we knew about it) in trains I would sit on the floor because I could not stand up and couldn't get a seat. People don't realize how much all the meetings and appointments take out of me, which is why we limit them. People don't see the brain fog. People don't realize that hyper (which looks like really excited) is bad. People don't understand how much I want to do soo much. I'm naturally a driven person and I want to be constantly productive but I in reality have 20 -30 hours a week of time with capacity, depending on whats happening often I have less.
nice video, good to learn these things so i can be a good friend to a person with eds or other chronic pain condition when that happens. I am autistic, epileptic and dyspraxic each of these is invisible unless among other things i stop masking or get sensory over load or ahve eycontact forced which is autism related, do writing of have to walk a lot among other things (dyspraxcia) of have a seizure in public, otherwise i have to tell people
I had to skip put on a walk through a pretty park we drove a while to get to becaise suddenly i felt as if my collarbone slid out of place and my entire right side started having spasms and cramps. Im really upset because to everyone else it just looks like I got angry and decided to pout in the car
Hi Annie, I am legally blind/ visually impaired and I use a white cane mainly when I’m on my own & I’m feel like I’m “coming out’ every time I leave my house.
thanks for sharing this pertinent crucial narrative neurodivergent and disability solidarity thanks for bringing your voice and experience to this you are expanding awareness no one should suffer alone as a autistic person suffering from alcoholism I know that from my own experience informative video comrade
Great video. ❤ Btw how do you tell the difference between dysautonomia and say low blood pressure?
Dysautonomia means "dysfunctioning of the autonomic system", which in plain english means that the automatic things in your body (like breathing and blood flow) aren't happened exactly correctly. So every person is going to have different symptoms because there are so many different symptoms that dysautonomia can cause.
Fainting caused by blood pressure issues is very scary and obvious, so I think this is why most people focus on the blood pressure symptoms when they talk about dysautonomia. For me, I experience low and unregulated blood pressure, random body temperature, digestive problems, increased gag reflex, inability to sleep properly, peeing too often or not enough and other bathroom struggles, and more, all due to dysautonomia.
great video.thanks for sharing.
Some of what you are talking about are things that I have felt in my past. I talk about in a video I made.
th-cam.com/video/PDcTGA_4yl8/w-d-xo.html and another video I made from my perspective th-cam.com/video/JXDpW1-rcJo/w-d-xo.html
I have had some people say to me "I wouldn't want what you have" after I explain to them whatit's like to go through what I go through.
I also experience the contrast of being an ambulatory wheelchair user.
I love your content! ❤️❤️❤️❤️
I am a zebra and totally relate. Thank you for this video xx.
do you wear AFOS. What type of EDS do you have?
Hi Annie? How long you feel pain in any body? Maybe you forget your medicine for aspirin or other?
It’s very scary when others deny our disabilities. It makes us feel so vulnerable. It happens every damn day, doesn’t it? Lol