COMING OUT AS DISABLED | My Visible and Invisible Disability [CC]
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- Опубліковано 20 сер 2024
- #InvisibleDisability- a disability that cannot be easily seen or measured; often discounted or not respected. We have to have #TheConversation, sometimes my disability is visible and sometimes my disability is invisible, but even if there is no optic evidence, I am still disabled. UPDATE: I finally received a diagnosis • MY DIAGNOSIS REVEAL! [CC]
I'm glad I made this video because I stand by that with or without "official" diagnosis, my symptoms and disabilities were the same. A doctor not recognizing your disability does not mean your disability is not real.
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ABOUT ME
Hello, hello! My name is Annie, my pronouns are she/her, and I'm a QWoC, body positive, disabled spoonie. I create videos five days a week (as long as my health allows) usually introspective topics, social topics, disability, body image, sex/gender/dating, feminism, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.
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"I'm not faking sick. I'm faking well." Thank you. Your words are so validating and comforting.
Although I have what would typically be deemed as a "visible disability" I often feel that I have an invisible one. People NEVER assume that I am blind when they see me traveling the world with my guide dog, they ALWAYS assume I am training the dog, or that it is a diabetic alert dog or service dog for other illnesses. I love that I get to break the stereotype of "what blind looks like" it can also be difficult not "looking blind" because sometimes it means I don't get the help I need. Great video girl!
I agree with this! My arthritis is both "visible" and "invisible." This is a video I put together with The Arthritis Foundation featuring about 40 people in the arthritis community for Invisible Disabilities Week happening now and how the pandemic affected our lives being immunocompromised with the medications we take to treat our conditions: ua-cam.com/video/O6yIOLgW1UM/v-deo.html
I feel the same about my cerebral palsy though people can see that I have trouble walking I have to endure so much and I spent most of my life without a mobility aid I got some accommodations for my visual impairment. Even the people closest to me don't believe it though they were told by doctors when I was born but didn't tell me I had to find out all about it myself then they acted like I diagnosed myself.
I can't articulate exactly why, but seeing disability advocacy/discussion from someone else who is in severe pain but is still struggling with reaching a formal diagnosis is so comforting. Thank you for this. I really needed it.
Thank you for sharing your story and taking time to educate us, Annie. Wishing you the best.
I was born with spina bifida. I am a psychologist and a teacher. I just joined your channel and let me tell you I love your videos.
wow, just seen your video. Clicking on related videos brought me to it. You are beautiful!! that aside, I know what its like to have a somewhat invisible disability. I was in a car accident/brain damaged and have partial paralysis of the left side of my body. (age 7 when it happened and I've 42 now) Dont listen to other people about your disability, listen to yourself. (doctors said I wouldnt live the night to begin with then when I did I wouldn't get any better, I'm still improving myself physically and mentally. I only limp now when I'm tired or when drinking and sometimes I fall cause the signal wont go from my brain fast enough to my foot telling it to lift if it hits something at times.) You said that you can stand and walk for short distances before the pain gets too much. Someday I bet you'll be walking more then you need the chair :) Keep trying and Keep faith
It’s sad that those people that say ‘oh you’re getting better’ are the ones that slip by the wayside quicker, as it’s almost like they get bored that I’m not getting better or ever will. Great post Annie you nailed it! 👌🏻😍
I get you girl we are just trying to function and get by, we grin and bare it. I have Multiple Sclerosis and I am currently advocating within my community to review their policies and the "wheelchair" symbol on handicap parking spots. I face judgemental stares and nasty notes left because people dont always see the impact my disease has on my body on hot days. I dont want anyone else to feel lesser because of an ignorant person.
People need to speak up and contact their news and local politicians to bring this type of stuff to light Keep pushing and keep that optotimistic attitude!
I love those words... "I'm not faking SICK... I'm faking WELL" very cool! I was born with brittle bones.. so spent my life dealing with bone issues... lot's of pain.. in and out of crippled children's hospital... and I learned to work my days around it.. some days I was able to do a lot.. other days not so much.. as a child and teen.. I could move around and walk around (which I am so glad for that and those memories of walking) now as the years have gone on I am pretty much wheelchair bound. I can use a walker for a short distance (but only if I have to, for now with age my bones are more brittle and have broken just by taking a step).. I am also just 4'3 since my spine was fused at a young age and I was already small.... but know what.... I don't remember a lot of the "pain" growing up... my memories are of happy fun filled years!... and through those years... I learned to play guitar, wrote many songs, traveled and sang in churches all over. I got married and had 2 kids... I became a speaker at women's groups and youth groups.. and most recently.. I became an official published author of ONE book... but now I have 4 more in the making... I love arts and crafts.. I am now a grandma to a 6 year old adorable little girl who loves riding around town with me in my scooter (we have our adventures and go "treasure" hunting!! ... I don't drive.. but I can get around.. though now I am more limited.. LIFE.. LOVE... and JOY.. sometimes make me forget that... until those times when the pain just becomes a little too real... I will lie down and wait for the next moment when I can sit up and ride around the house in my electric chair.. or ride around town in my electric scooter!!!!! YAY LIFE.... YAY MY LIFE... YAY YOUR LIFE!!! YOU INSPIRE ME GIRL!!!
I really appreciate your clarity and eloquence because this describes me, too.
Thank you for this video, and for all of your videos Annie. You are wonderful soul food in a very difficult time. Where you were at this point, I am right now. I honestly never seriously considered I may have Ehlers-Danlos until I started to talking to a fellow spoonie who is one. As we discussed our health issues, they asked me "do you have ED?" And we talked for quite a bit. Then courtesy of your LiveWello video, I uploaded my 23andme raw data to it. It took me a bit to figure out how to really use the site, but it is the most helpful supporting data I have now! I'm a medicaid patient, so that really colours the experience in my care. Thank you, thank you, thank you for your channel. I've never felt more seen than since I've come across your channel.
I also have hypermobility. People always ask "what happened" when I have my knee brace on. They never handle the born this way answer well because I "look fine".
I get this, I was asked by like 5 different people at an airport if I injured my knee playing soccer and I'm just like yep because if I try to explain they won't understand lol
Hare Say I am legally blind. My lenses are too thick for frameless. I also don't care about your opinion on the matter because I like them. keep enjoying insulting women though. real good of you.
Same! I have mild cerebral palsy, not hypermobility, but get the well meaning but oh so aggravating "oh what happened?" everyday cause I wear a leg brace.
I hate it when people say: I hope you get better soon or get well! It is well meant but it is a great source of frustration.
I was diagnosed with Limb Girdle Muscular Dystrophy two years ago. I'm not wheelchair bound and I walk most of the time. I just recently got to the point where after walking long distances I need a wheelchair and it has been a hard adjustment to get used to. P people from my school will see me using my will chair and asked me why I need it and it's so crazy because I went from being healthy and walking and strong to being weak and sick and my muscles deteriorating right before My eyes. And it's hard for people to understand that I am disabled now and just because I wasn't disabled three years ago doesn't mean that I can't be disabled now and have problems now that I didn't have then. But I've been subscribed to you for a few months now and I have to say your videos have helped me a lot. Thanks for what you do ❤️
I'm so sorry to hear you're having to fight for a diagnosis. It took me 5 or 6 years for my Ehlers-Danlos syndrome diagnosis. Unfortunately the consultant who diagnosed me only put the umbrella term of 'hypermobility syndrome' on my clinic letter, so I frequently have doctors question whether I do actually have EDS. Variable disabilities are hard for a lot of people to get their heads round & so often people will jump to conclusions that you're 'faking it' or exaggerating things. This is made even harder when you don't have a diagnosis. You can't tell them what's wrong because, though you may have a good idea yourself, nothing is official. I've tried to push myself to stand up from my wheelchair if I need to despite what other people think & have come up with a response in my head incase someone makes an unpleasant remark or questions me. I really hope you get a diagnosis soon & am always here if you need any support. Xx
This made me cry. I am disabled as of last December and still trying to figure this whole thing out. I'm very happy I found your channel.
Wow! This is the best video. I am disabled and learning how to love myself 100%
I've been a C4-5 incomplete quadriplegic for over 8 years and I experience everything you do all the time. People saying I'm too pretty to be in a wheelchair is not a compliment. Saying I need to get better is not motivating or supportive. I don't know what it's like for you with your disability but for what it's worth, I can empathize. Before I had my accident my knee cap used to dislocate multiple times a week. I know that's not the same though. You don't need me feeling sorry for you because sorrow can feel demoralizing but you have my support always :-)
I have trouble just knowing my limits sometimes! We are so used to pushing ourselves to try to be “normal” and fake wellness. I am too hard on myself and worry too much what others think. Goals ❤️
Also I'd love a video about size-ism and disability. It's something that has been on my mind a lot and you touched on it in this video. People expect chronic illness to take the form of malnutrition; being thin and pale, not people carrying more weight. I've been heavier all of my life, actually fuck it I'm going to call it like it is because fat isn't a bad word. I've always been fat. I've never had interest in sports and/or I've been unable to participate because of my chronic illness. People like to blame my weight for my pain. I had a PEDIATRITION saw I should "consider losing weight to take strain off my body" I didn't say anything at the time, but I called back the next day and promptly told her why she can't just say that. It's fat shaming, it's size-ism and if she had said that to someone else, they may have stopped eating.
...
...
I'm now exactly 180lbs and I'm terrified of breaking 200. But I know it's going to happen because my pain means I can't exercise and food is one of the few things that bring me comfort. I know that is supposed to be bad and I'm not supposed to comfort eat, but fuck it. I've had nothing but problems with doctors. With physical illness and mental illness, they minimize my pain, they distrust my own assessment of MY body and the deny me the support I need. I'm not getting help. So I'm going to take comfort where I can. My body is amazing now and 20lbs won't change that, but I've been told so many times that I'm not supposed to think that way I feel like I'm going hanged, drawn and quartered
(Ps if you do make a video about the topic you are welcome to reference or read this. I don't mind.)
+Kein Chris I know you don't mean to, and you are just proving a point about size-ism, which is totally valid and needs to be discussed. But as someone with gastroparesis, who is only 95 pounds due to malnutrition and lack of an ability to eat, "corpse" may not be the correct terminology. I am human. I am not dead. But you have great points! And I want to see this video, as well.
+meowy53 I appriciate your comment and I'm sorry for being inconsiderate with my language. I'll go back and edit it in just a moment. It was a mostly stream of consciousness comment and I'm honestly glad to be called out for that because it reminds me I still have some self work to do. Thanks and good luck on your journey.
+meowy53 Actually, as I'm looking at editing, I'm having some trouble deciding on the best words. If you have some input on what could be better, I'd really appriciate it.
Nice video. Your confidence is inspiring.
my first video i have seen of yours and your honesty and genuine personality has made me have to subscribe to get to know you more!
thanks for your honesty and insight! p.s your hair ROCKS!
Thanks for the awareness on hypermobility....people forget we all have freedom of speech in the U.S. I get your point entirely and there was no need defending yourself because on top of everything, you qualify as disabled under the ADA. So forget about those idiots telling you....move one with your life. I don't have what you have. I was in a car wreck and I can walk. But I am not the same anymore. I have pains, injuries that are permanent and this limits me to how much I can walk and lift physically. Take care.
I hope you get a diagnosis soon
Thanks for posting! I have EDS but not diagnosed yet because of the same reasons you mentioned.
It was great meeting you at the event yesterday. You are a fantastic person and I thank you for teaching someone like me about you and your life through this video.
Still loving your hair!
Thanks, Julian! pleasure to meet you as well!! 😊
+Annie Elainey I'm terrified to do this...come out as disabled. I have a stepdad that compares my symptoms to his, says your only 40 you can do this this and this (is AGEism a thing...if so he's doing it all the time), and I have a spouse who is constantly worried about when I can return to work because we are low income WITH me working. I get his fear 100% but I can't place a date of when or if I'll be well enough to return to work. I'm on year 2 as well for diagnosis. Drs believe I have Cushings Disease, but I dont have insurance atm so I'm waiting to be tested. In addition to Cushings, I have nerve damage, ruptured discs, scoliosis, and walk with a pretty severe limp. I used to push through that but the illness (poss Cushings) pushed me over my breaking point. I literally live in bed 80% of my life now.
Im waiting for my diagnosis & then plan on announcing it on FB so i don't have to tell all separately...but like I said before, I'm terrified.
Is a Video better than FB post iyo?
Sandy DiVenanzo coming out is an ongoing process, one status, one video, will never be enough, you'll always be coming out to someone. I even just had to do this today, again with family asking why I'm not "better yet", and I have to lay everything all out.
+Annie Elainey I get that, but it's actually more for the friends from HS who knew me before my disease, who I haven't seen in 2 decades but recently have been inviting me to 40th birthday parties (and of course I accept...then more often than have to cancel last minute). But yes, I realize it's going to be an ongoing process, just like it's an ongoing process for me to accept that I can't do things I used to do (like walk for more than a block or two). It doesn't make it any less scary. You're really an inspiration for me, I love the eff it this is who I am attitude! Hopefully I'm come to be accepting of myself enough to get close to the place where you are right now. Thank you for posting these videos :)
It's definitely a huge adjustment, you're absolutely strong enough to do it even if at times you may feel like you're not. It's okay to break, it's okay to rest, it's okay to cry, but you'll get back up, because at the end of the day, you're still here, you're still breathing, and we just have to adjust and make the most of what we have. Share however it makes you comfortable, write or make a video, just do what feels right.
Yesssss. It took them 10 years for them to find part of what I had. Many years more to find other bits and they're is remaining mysteries. This video is awesome. Rock on
You are inspiring. Thank you for sharing.
Thank you ❤️
There's so much misinformation out there. Sometimes people have all of these assumptions and are not open to actually listening. Thanks for sharing this. I've learned from it and I think a lot of others could too!
Thank you for these videos!
Thank you for helping me to feel less alone. I have a chronic illness as well and the struggle with stigma can be so hurtful.
You may find this video I put together helpful too: ua-cam.com/video/O6yIOLgW1UM/v-deo.html Glad you can feel less alone, chronic illness is no joke.
I love the way you explain everything. I'm sitting here up at 4.00 am feeling extreme pain , tomorrow when I can't go out from being tired I'm going to show my friends your videos. I'm going to share it on Facebook.
FINALLY someone else with hypermobility! I find that for me, I can walk further than people may think I should be able to but in many situations I do have to use my wheelchair. People who know me in a small setting often don't particularly accept me using a wheelchair - you can walk, why do you have that!? I've had someone from my youth group (adult) telling everyone that I'm 'not really disabled' and I 'don't really need a wheelchair' when I took it in once. This video perfectly explains how I feel. Thank you. :)
hello, I've just found your channel and I was watching this video of yours. I agree with what you say about people being rude when they see you walk or use a power chair. I have EDS3-HT. I ride a motorcycle as my main transport and you can imagine the words spoken to me when they see me get off my bike and unhook the smart crutches off the back. I'm slowly loosing the mobility now and heading for a wheelchair but I can still ride my bike (thankfully) also my bike isn't a small one, its a sports motorbike 600cc. It is however adapted to suit me. Unfortunately I can't park in a disabled bay because our government doesn't seem to think bikers can be disabled! (grr!! *angry face*) lol
Some of the remarks I hear or some of the mucky looks I receive when I park close to the store doors is unreal. Thanks for making this video and hopefully opening some narrow minds out there. Take care fellow Zebra :) x
I understand the struggle of not getting a proper diagnosis, it's very frustrating :/ I'm going on two years now of progressing chronic pain that's spread from my knees to my ankles and hips, and I do have hypermobility (but not as severe as yours). I'm scared of it progressing in the future. I hope you have a diagnosis / find one soon! also, I love your videos very much :)
I had stage 4 cancer and pneumonia and was in the hospital and a Eucharist Minister
said I looked healthy. I then started high dose chemotherapy with failed. I then started immunotherapy. So much for looking healthy.
I love learning more about you. i think this really just opened my eyes to your disability and others who are disabled. i actually didn't know the extent of your disability and you having hyper mobility. thanks for making this video.
Oh, girl. I am watching this because I am doing some research for my work that surrounds bridging barriers for disabled individuals.
I, being a disabled person myself, really relate with you. I wonder if we both have the same thing. I have the same dislocation issue that you are speaking of. I switch between using a wheelchair and walking as well. I can't use a cane though; it dislocates my wrists badly. I am always in pain too. All of this started two years ago after I toppled over turnstiles that jammed and tore discs. I used to be super flexible and had mild dislocations every now and then well before that, but the weakness and miserable dislocations and constant pain began only after. I have been waiting for a proper diagnosis for years as well. It really is a struggle.
Love your video and channel!
I love this video!
loveee your room 💙
I agree with you. It sucks. I have problems that are painful and people don't believe me and say I look fine. I've been on VA disability since 2004. I'm a disabled veteran.
I know exactly how you feel. I don't look sick so even if I tell someone I'm feeling tired or getting to work is getting increasingly difficult they'll say "me too" or "I know how u feel" and I want to scream at them "No you don't!" because I know they mean well. I haven't come out as disabled to myself yet even though constant pain and stiffness in my lower back and thighs (from fibromyalgia) make standing or walking for a long period of time difficult. I know on the bad days I'll need a cane but doing that wud mean that I'll have to come to terms with being disabled.
You are saying everything I am thinking. Thank you for making this video!!!
omg, you are a fantastic person
good video
Someone on my FB feed posted some pics of women in wheelchairs and was bashing them. OH MAN pissed me off. 1- I use them 2-she's a friend and KNOWS I use them 3- she has terminal cancer also.... I was so shocked! I felt like by her bashing them she was bashing me. I shared one of your videos with her. She might unfriend me but o'well. I'm dying soon anyway. Who needs friends like that. You would think by her having a terminal illness where she looks somewhat normal she would be more sympathetic. Really got my motor running. It is pushing me to make my own coming out video!
bless you my child
my PE teachers used to give me into trouble for not taking part in class but I as well as the teachers didn't know it was a disability, i was so misinformed, all i got told is that i have this problem and if you take these harmful painkillers you'll feel better, when i wont feel better the pills help me walk sometimes, they also sometimes help me hold a pen but a lot of the time its excruciating and I don't tell my mum because its all the time but when it gets too much i do then after a week or so she'll take me to A&E to make sure everything is okay but by this time its been sore for two weeks and the doctors wont help. funny story one of my teachers forced me to walk the cross country track and wouldnt let me go inside for a jacket so all i had was a t shirt and trousers on so i suffered a flare up from that and i went over my ankle
Thank you for this!!! I'm also waiting for a diagnosis. And my body is starting to wear down to the point where I feel like I need mobility aids when I go out. Your video on "how to tell if someone has a disability" was so relieving to watch. I'm scared to use mobility aids intermittently honestly. So happy I found your channel. Sending a couple extra spoons your way. ❤
I also have EDS-h! I'm in a wheelchair (and crutches in the house). I love your channel, the awareness you're raising about disabilities and chronic pain is brilliant! I was luckily diagnosed at 11 with ehlers danlos, it's saved a lot of issues with school and meant my doctor has worked close along side me over the last 7 years (and before then actually, she was part of figuring it out).
Honestly, it is SO irritating the amount of people who say "oh been beating yourself up, aye" or "what'd you do to yourself". My current response is just "meh, I have funny hips" if it's a random or "Oh it's just the usual, been on them for years now". I don't get why it's okay to randomly ask these things?! Esp not when it's followed by "oh, but you're too young to have bad hips".
Me internally: please tell my connective tissue and genetics that man.
My most frequently asked question (not just about my health, but in general) is "What happened?!" because I've started using a cane. I have JRA and I was diagnosed when I was 3 years old, but it comes in episodes, 1 year on and a few off usually. It's been 3 years since my last which I hid quite well cuz I felt ashamed. Now I'm 4 months into this flare and it's the worst I've ever had, I started using a cane not because my arthritic knee needed the support, but because I was starting to get pain in my other knee from compensating. It's the first time in my life I've felt disabled. There have been things I couldn't do because of my illness, but this flare has had a lot of irregularities. I don't know when or if it will end. People ask "what happened?!" "I was born with it" or "its chronic" isn't the answer they are looking for. When they ask "so how much longer with the cane?" "I don't know" isn't what they want to hear, but it could be a month or the rest of my life.
+Kein Chris An update if anyone is interested:
This time it's actually a cyst pressing on the nerve in my knee. I don't know much yet, but I have an appointment with an orthopaedic surgeon the 16th of May.
+Kein Chris how did it go? How are you feeling? I hope they were able to lessen your pain by removing the cyst 😔
I'm also a wheelchair user who is not a paraplegic or just using the wheelchair temporarily. We're like unicorns to the general public! Nobody seems to know we exist.
Thanks for making this video. I'm going through a similar experience right now with the people in my life. I feel like we're at a midpoint in the coming out process that people don't talk about. I have accepted my disability but other people are pretty damn convinced it's a phase. I can't go back and they're not ready to go forward. I'm not sure what happens now.
Ugh. Hypermobility. Not as fun as contortionists make it look!
Hi Annie ! Thank you so much for this video ! I know it's quite old but I think it's absolutely necessary ! I just added french subtitles in order to make it accessible for the french disabled community, I hope you'll accept the subtitles soon, I did my best :) bye !
I hate when people say "I know you say you feel crappy...but you are so pretty it's hard to comprehend" like only unattractive people are disabled.
Thank you so much for this video! I also have a sometime visible and sometime invisible disability. I have fibromyalgia and use a wheelchair. I also experience fears and anxiety when I get up out of my wheelchair or out of the electric cart at the store because I often get dirty looks and sometimes rude comments. The microaggressions are truly exhausting and while I've gotten better about coping with ignorant statements/questions and assumptions, it is still difficult. Thank you for bringing this issue to light.
I have major depressive disorder and I can relate to this SO HARD!! Thank you for putting it out there!
The worst part is when people say "drink 8 glasses of water a day for four weeks and you won't have arthritis anymore!" or try to cure my disease with things like that. If it works, I would've tried already.
I know how you feel, I'm in a lot of pain all the time. But I feel like others just don't understand. I hate it that just cause I do take medication that helps...oh i must be all better now..NO I'm not. It doesn't go away..i wish. Thanks I like that I found you cause I feel like I can relate to you. I have a wheelwheelchair too, yes I can stand up and I can walk a little but that's it. I'm not faking.
this. this is so important. yes yes yes! great job on this video ❤
WOW! My Human is sooooo over people saying "get better soon" :( She had a little cry when watchign this video... Thanks for sharing ! Full on stuff, but so important. :( Xx Thank youuuuu. Wow. It is so amazing my Human can relate... and you are able to say stuff in such a great way. ...just...thanks!!! Xx
I have an invisible disability and one of many problems i have that people don't really respect the idea that i am a disabled person, even my parents, didn't care, when i was young they didn't even think once to ask for medical description, i was so depressed and lost wight, i was like a skeleton in my teenage years, which added more permenate problems to my health, even my father bagan to accuse me of things and beats me so i got ptsd, naw i am on antidepretion and hoping to recover
Hi. I also have EDS-hyper-mobility type. It took me YEARS to get diagnosed, and I had to pay privately as the NHS where I live doesn't recognise EDS hypermobitliy. I was offered physiotherapy and pain managment. My neck partially dislocates when I move it, and my neck muscles are in a permanent spams. I find it hard to sleep because of the pain. The worst thing for me is the crushing fatigue.
On top of all that, I have a brain injury- that has worsened the muscle weakness and fatigue. I have two 'non-visible disabilities' and it sucks.
This was so interesting and has made me think a lot more about different types of disability and visibility. I have always struggled with defining as disabled - I have Epilepsy however when my seizures are under control I can lead a fairly normal life. It's only in the past few years that I have accepted that I've been disabled for over 10 years and usually ignored it/ acted abled and rejected the help I was offered. My family are 'used' to it as it is genetic although they are all bad at communication and my only (living) relative who also has it lives on the other side of the world. My disability is completely invisible amongst friends until I have to explain why I don't drive, why I have to take a handful of pills with my dinner and why I have to limit my alcohol intake. It always makes for a massive shock for them if/when I do have a seizure in front of them, sometimes I think they are more upset than myself.
I have spinibifida and your right people don't understand what people like me and you go through your lucky you can even stand up with a cane i can't stand or walk so the next time you people ask her a question think about what it would be like to be her imagine not being able to walk or even stand being "sick" doesn't mean being pale or anything like that It can mean a lot of things.
you know i thought i was going crazy…or that the rest of the world thinks im crazy….i am in somewhat the same situations as you discribed in this vedio… i walk a little…i use a service dog a lot….i use a cane often….and my new trick is that i use a wheel chair 80 to 90 % of the time…i am 60 and have been strugling with disability since 1989…first my feet went numb…oh your a diabetic…NOp….then my legs and sholder went numb….????…next part of my face went numb….then the pins and needles ….still no diabetes ….then i lost my ability to keep my balance ….then i got better….then i got sick again and again….whats wrong? dont know….then my spine started to deteriorate …and the pain wo the pain and still not knowing what is happening….fast forward to 2015 the wheelchair, why do you need that.. i saw you yesterday walking…the fear of being labled a fake or as i mentioned feeling like you are going crazy….i know im not crazy and i know all this is real and i have come to the realisation that i dont need to prove my disability to anyone…and to hear that their is someone else that has gone through simulair situations is refreshing….i do have a lot of “diagnoses” and some make scence but others???? well all of this just to say THANKS for your cander and bravery to tell the world to get a life….we have …...and it is our own. Thanks
i have hypermobility but for some reason they havnt done anything like put me in a wheelchair.
I love this. I experience petit mal seizures and nobody can even tell that I have a disability, even when the seizures are going on
"You don't look sick" is infuriating/ exhausting
Thank you for your video
You are awesome thank you for your videos I have a trach and because of it being an emergency when they put it in it destroyed my vocal cords I can't talk and I hate it when people say oh I feel sorry for you but mostly when they give you that look I hate it yes I would love to be able to talk but I'm alive and that's what counts
I also have Ehlers-danlos syndrome, mine effects mainly my joints with dislocations and my soft is so fragile my ligaments, tendons and muscles break with the smallest amount of force. Mine also effects my bones so have developed bone deformities, I've developed gastroparesis, endometriosis, I have POTS and just found out my hearts has an aortic root arrhythmia caused by it. These are to name a few but the worst outcomes of my EDS. But I can understand what you are going through. On the outside you look fine but inside your body is literally disintegrating.
I'm faking well! Yes! I sometime feel like I screw myself over by only ever faking well. I feel like I can't ask for help or tell my bosses that I need to sit out for little bit even though they would totally let me. I almost wish I had a visible marker somehow so that I never get such stupid comments again. Like "Pregnancy is harder" stupid.
i am also disabled. i have cp and am visually impaired. my cp is small. i think ur beautiful
2:45 i remember that took a long time for Jaquie Beckwith as well.
3:16 I care only about the answer *you* want, although it's probably the same one.
Could you please try to avoid such a big difference in volume as we can hear at the end?
They should make patches that go on wheelchairs that say "Its called a flare up bitch!"😂
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Hey there wonderful video it definitely gets your point across hopefully videos like this can educate the public about people and disabilities and make them realize not to be so quick to judge, I am not completely blind myself but I am legally blind or visually impaired whatever you want to call it I will be honest right now my vision is about 2070 - 2100 and that's with best possible correction so if this is true why do I use a white cane if I have that much vision? Because I also have a very narrow visual field I have almost no proof of vision which is basically the result of optic nerve damage caused by glaucoma which I've had for many years since I was 12 years old. I also have congenital nystagmus which affects my depth perception this is not to say that I have no depth perception I just have issues with depth perception sometimes I can't tell where they're if there's a curb or a step or I can't Define where exactly the step and sore starts this is so true when going downstairs this is my reason for using a white cane in certain situations I need it to help me with these issues I also use it as a form of identification in crowded malls so I don't bump into people so much when I don't see them off to the sides it's more of a safety and courtesy tool for the people around me and a lot less for my benefits I may not look completely blind and I may look like someone who doesn't really need a cane truthfully I probably don't but I like the benefits of having a white cane and the awareness that it brings to other people that I don't see very well.
OOh how uncomfortable that must be for you. :(
Snap!!