Annie Elainey | The EDS Things You'd Miss Even If We Hang Out [CC] @theannieelainey | Uploaded March 2020 | Updated October 2024, 2 hours ago.
Here on the internet, there is a lot about the lives of chronically ill people that viewers don't know about, but today I wanted to talk about the things even the people around me miss, don't suspect about my experience with chronic illness because it rarely ever makes itself known on my face or visibly noticeable on my body. This is not even ALL of it but I wanted to share the EDS thing I feel a lot of people miss even when we share space together IRL.
[Insert apology for not uploading for so long here; a lots been going on, I've been sick and lacking the energy to produce, I felt lots of pressure to produce "perfect" content, and so screw it! Here we are!]
Timestamps:
1:29 Arms + Hands
4:00 Legs
8:12 Dysautonomia
9:59 Fatigue
11:23 Being visibly and invisibly disabled
SUPPORT THIS CREATOR
Patreon: patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
Merch: teepublic.com/user/annieelainey
One-time Donations
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Ko-fi: ko-fi.com/annieelainey
Venmo: venmo.com/annieelainey
Cash: cash.me/$annieelainey
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.
Here on the internet, there is a lot about the lives of chronically ill people that viewers don't know about, but today I wanted to talk about the things even the people around me miss, don't suspect about my experience with chronic illness because it rarely ever makes itself known on my face or visibly noticeable on my body. This is not even ALL of it but I wanted to share the EDS thing I feel a lot of people miss even when we share space together IRL.
[Insert apology for not uploading for so long here; a lots been going on, I've been sick and lacking the energy to produce, I felt lots of pressure to produce "perfect" content, and so screw it! Here we are!]
Timestamps:
1:29 Arms + Hands
4:00 Legs
8:12 Dysautonomia
9:59 Fatigue
11:23 Being visibly and invisibly disabled
SUPPORT THIS CREATOR
Patreon: patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
Merch: teepublic.com/user/annieelainey
One-time Donations
Paypal: paypal.me/annieelainey
Ko-fi: ko-fi.com/annieelainey
Venmo: venmo.com/annieelainey
Cash: cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook facebook.com/ann.e.segarra
Twitter twitter.com/annieelainey
Instagram instagram.com/annieelainey
Tumblr annieelainey.tumblr.com
YouNow: AnnieElainey
TikTok: AnnieElainey
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-Click on the gear in the lower-right corner of the video
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My Associate Store: astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.
![The EDS Things Youd Miss Even If We Hang Out [CC]](https://i.ytimg.com/vi/DAvbnYUaxXE/hqdefault.jpg "The EDS Things Youd Miss Even If We Hang Out [CC]
Here on the internet, there is a lot about the lives of chronically ill people that viewers dont know about, but today I wanted to talk about the things even the people around me miss, dont suspect about my experience with chronic illness because it rarely ever makes itself known on my face or visibly noticeable on my body. This is not even ALL of it but I wanted to share the EDS thing I feel a lot of people miss even when we share space together IRL.
[Insert apology for not uploading for so long here; a lots been going on, Ive been sick and lacking the energy to produce, I felt lots of pressure to produce perfect content, and so screw it! Here we are!]
Timestamps:
1:29 Arms + Hands
4:00 Legs
8:12 Dysautonomia
9:59 Fatigue
11:23 Being visibly and invisibly disabled
SUPPORT THIS CREATOR
Patreon: https://www.patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
Merch: http://teepublic.com/user/annieelainey
One-time Donations
Paypal: https://www.paypal.me/annieelainey
Ko-fi: https://ko-fi.com/annieelainey
Venmo: https://venmo.com/annieelainey
Cash: https://cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Twitter http://twitter.com/annieelainey
Instagram http://instagram.com/annieelainey
Tumblr http://annieelainey.tumblr.com
YouNow: AnnieElainey
TikTok: AnnieElainey
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My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![Suicide, Body Autonomy, and Ableism [CC]](https://i.ytimg.com/vi/E1amNFznnxo/hqdefault.jpg "Suicide, Body Autonomy, and Ableism [CC]
This is another rambly #LetsTalkTuesday where you get to watch my brain travel through thoughts and feelings as I try to figure out where to land. I am unsure where Im going with this, but feel like its important to acknowledge how ableism plays a role in this conversation. Ultimately body autonomy? 100%! But also think hard about how ableism makes its appearance in discussions of suicide and assisted suicide/dying with dignity, how many people de-value disabled lives to the point where they believe they are better off dead
Some reading related to the topic:
Wisconsin teen suffering genetic disease parties at prom thrown in her honor after she made the choice to die: http://www.nydailynews.com/news/national/teen-genetic-disease-enjoys-prom-assisted-suicide-article-1.2723198
Schaumburg mom out on bond after serving 72 days for killing disabled daughter: http://www.chicagotribune.com/suburbs/schaumburg-hoffman-estates/news/ct-mother-killed-disabled-daughter-prison-release-met-20160826-story.html
Mom Found Innocent: http://www.japancrush.com/2014/stories/mother-who-killed-disabled-daughter-found-innocent-of-murder.html
On Sagamihara: https://kpagination.wordpress.com/2016/08/02/actions-articles-and-statements-on-sagamihara-japan/
New Videos Monday-Friday #WithCaptions Subscribe!
READ MORE BELOW!
***IN THIS VIDEO***
Mic used: http://amzn.to/2ahAuT5
Camera used: http://amzn.to/2a5jPCq
My Associate Store: http://astore.amazon.com/annielai-20
***SUPPORT THIS CREATOR***
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
PayPal: http://bit.ly/1D7QYW2
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language.
***FIND ME ON THE INTERNET AND LETS BE FRIENDS!***
http://facebook.com/annesegarra
http://annieelainey.tumblr.com
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Periscope: AnnieElainey
***ABOUT ME***
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.")
![Navigating Disability Fashion and Gender Presentation [CC]](https://i.ytimg.com/vi/E4tlJZ4vQHE/hqdefault.jpg "Navigating Disability Fashion and Gender Presentation [CC]
In this video, I discuss how my disability (Ehlers-Danlos Syndrome); the chronic pain and other symptoms I may experience affect the way I dress and in effect the way I may present my gender expression.
Gender Expression and Disability ft Jessica Kellgren-Fozard: https://www.youtube.com/watch?v=Au1svE1bE8A
Youre So Brave Podcast w/ Chase Ross and Aaron Ansuini: https://www.youtube.com/watch?v EHvVU4cfJI
GenderQueer Runway Radimo LA: https://www.youtube.com/watch?v=tnRNquJDxtU
SHOP: http://www.radimo.la
SUPPORT THIS CREATOR
Patreon: https://www.patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
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One-time Donations
Paypal: https://www.paypal.me/annieelainey
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Venmo: https://venmo.com/annieelainey
Cash: https://cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Twitter http://twitter.com/annieelainey
Instagram http://instagram.com/annieelainey
Tumblr http://annieelainey.tumblr.com
YouNow: AnnieElainey
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![Where Art Thou, Access? | VidCon 2016 PART 1 [CC]](https://i.ytimg.com/vi/G3IC4V4yKZM/hqdefault.jpg "Where Art Thou, Access? | VidCon 2016 PART 1 [CC]
This was my first time traveling in a wheelchair, which I was a little nervous about, but being able to make quick transfers it turned out not to be as bad as I thought! I would still be anxious about my chair being lost or damaged while I was not with it, but it was okay for this first part of the trip. I managed to get my wheelchair accessible room (though originally they told me that they gave to it someone that didnt request it), so I show you around the room a bit. Registration was a bit of a disappointment accessibility-wise, which Ill explain, as well as there werent any desginated wheelchair areas for the outdoor concert area. But being among friends made it all worthwhile. And ending the day at Downtown Disney and having an accessible bar, just made me emotional and grateful for when people actually put in the work and effort to be accessible!
New Videos Monday-Friday #WithCaptions Subscribe!
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://facebook.com/annesegarra
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://snapchat.com/add/annieelainey
Periscope: AnnieElainey
ABOUT ME
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language.")
![Recovery Day & #DisabledTwitter Topics | VLOGMAS DAY 10 [CC]](https://i.ytimg.com/vi/HAgrsZxydIU/hqdefault.jpg "Recovery Day & #DisabledTwitter Topics | VLOGMAS DAY 10 [CC]
This week of activities really wore me out, back pain and fatigue kept me in bed most of the day but my mind was definitely pondering topics and current events from this past week on #DisabledTwittter so half the video is a mini chat about that but definitely want to refine my thoughts and make videos focused on the individual topics later on. Please share with me what you think!
Link to Amythests video on #BoycottToSiri (they created the hashtag) https://www.youtube.com/watch?v=TGBQLBIPAi0&t
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: https://www.patreon.com/annieelainey
PayPal: http://paypal.me/annieelainey
Amazon Wish List: http://a.co/gyCgqsf
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
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LIST OF VIDEOS YET TO BE CAPTIONED
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FIND ME ON THE INTERNET
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Periscope AnnieElainey
IN THIS VIDEO
Mic used: http://amzn.to/2ahAuT5
Camera used: http://amzn.to/2a5jPCq
My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![When an Invitation is Not Enough | Accessibility [CC]](https://i.ytimg.com/vi/HdMI76tC-q8/hqdefault.jpg "When an Invitation is Not Enough | Accessibility [CC]
The theme has been #Dating this week leading up to #ValentinesDay, but #ICYMI sometimes an invitation is not enough. #Accessibility If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://facebook.com/annesegarra
Snapchat: annieelainey
PLEASE SUBSCRIBE AND CHECK OUT MORE VIDEOS
http://youtube.com/theannieelainey")
![Queer and Disabled Pt 4 | Fetishization [CC]](https://i.ytimg.com/vi/I6WgFiLcy7k/hqdefault.jpg "Queer and Disabled Pt 4 | Fetishization [CC]
[CC Available, CW: for reclaimed use of the q-slur] In this series four young women, including myself, answer several questions about the intersection of identifying as queer and being disabled. This week’s question, Have you ever experienced fetishization? How does it make you feel? [CLICK TO READ MORE]
THUMBNAIL ILLUSTRATION by Grace Wilson via Broadly.
[Video Thumbnail Description: an illustration of outdoors, a man on his knees bent over, a bouquet of flowers in one arm as he grab a wheelchair tire with both hands, his jaw dropped, eyes filled with longing as he stares directly at the feet of a woman sitting in a wheelchair, she appears angered at the man beneath her. Text on the foreground top left corner reads, “Part 4 Fetishization” and on bottom center, the title of the series, “Queer and Disabled”]
PART 1: http://bit.ly/1T7ye1a
PART 2: http://bit.ly/1VIMjmC
PART 3: http://bit.ly/20eiH0T
PART 5: COMING SOON
PART 6: COMING SOON
FOLLOW/SUB:
Rachel: http://bit.ly/1MoEA5J
Robyn: http://bit.ly/1VowZLM
Erin: http://bit.ly/1U92qui
New Videos Monday-Friday #WithCaptions Subscribe!
HELP ME GET TO VIDCON: http://bit.ly/1XI8Ez6
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
ABOUT ME
Hello, hello! My name is Annie, my pronouns are she/her, and Im 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.
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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FIND ME ON THE INTERNET AND LETS BE FRIENDS!
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http://twitter.com/annieelainey
http://facebook.com/annesegarra
Snapchat: AnnieElainey
Periscope: AnnieElainey")
![Reacting to Lazy Product Ad Comments [CC]](https://i.ytimg.com/vi/IH0B9YgS8vw/hqdefault.jpg "Reacting to Lazy Product Ad Comments [CC]
In my previous video, we talked about how hatred for laziness impacts disabled people, in this video were going to respond to some comments beneath the ads for some lazy products to discuss how they are used as accessibility tools. You say lazy, we say accessible.
SUPPORT THIS CREATOR
Patreon: https://www.patreon.com/annieelainey
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One-time Donations
Paypal: https://www.paypal.me/annieelainey
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Cash: https://cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Twitter http://twitter.com/annieelainey
Instagram http://instagram.com/annieelainey
Tumblr http://annieelainey.tumblr.com
YouNow: AnnieElainey
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
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My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![OUT OF SPOONS [CC]](https://i.ytimg.com/vi/INNf5G6Z2yE/hqdefault.jpg "OUT OF SPOONS [CC]
Last week I was only able to upload two videos, so for this weeks #LetsTalkTuesday, I wanted to talk about what it means when a spoonie runs out of spoons! READ MORE BELOW!
Tweet: What does out of spoons mean to you?
https://twitter.com/annieelainey/status/768635046391521280
Christine Miserandinos Spoon Theory:
http://www.butyoudontlooksick.com
http://www.thespoontheory.com
New Videos Monday-Friday #WithCaptions Subscribe!
***IN THIS VIDEO***
Camera used: http://amzn.to/2a5jPCq
My Associate Store: http://astore.amazon.com/annielai-20
***SUPPORT THIS CREATOR***
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
PayPal: http://bit.ly/1D7QYW2
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language.
***FIND ME ON THE INTERNET AND LETS BE FRIENDS!***
http://facebook.com/annesegarra
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://snapchat.com/add/annieelainey
Periscope: AnnieElainey
***ABOUT ME***
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.")
![Parking Lot Accessibility (USA) [CC]](https://i.ytimg.com/vi/IRo-utcG8DI/hqdefault.jpg "Parking Lot Accessibility (USA) [CC]
Whether you use accessible parking spaces or not these are some things I think are important things to consider when parking your car. Well discuss what are access aisles and access lanes, why even someone who walks might need the accessible space, why access aisles/lanes are necessary to keep clear, and more!
SUPPORT THIS CREATOR
Patreon: https://www.patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
Merch: http://teepublic.com/user/annieelainey
One-time Donations
Paypal: https://www.paypal.me/annieelainey
Ko-fi: https://ko-fi.com/annieelainey
Venmo: https://venmo.com/annieelainey
Cash: https://cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Twitter http://twitter.com/annieelainey
Instagram http://instagram.com/annieelainey
Tumblr http://annieelainey.tumblr.com
YouNow: AnnieElainey
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
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My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
