My Biggest Secret: I'm disabled.

[@doddleoddle]

OMG POTS MAKES SO MUCH SENSE FOR YOU HOLY SHIIIITTTTT

[@stevie]

I KNOWWWWWWWWWW

[@DottyPowers]

Wow dodie knows what pots is?! I’d never heard of it until my friend got a diagnosis earlier this year

[@XxZoraZ]

doddleoddle for some reason I thought this was a pun, then I realised you aren't Dutch. The word pot means well pot, but in some context it means dyke. 🤷🏻‍♂️

[@RaRa-vf3zx]

XxZoraZ um what?😂

[@Harrison_J_T]

@@DottyPowers The KZbin's Jessica Kelgren Fozard who is friends with Stevie (and so possibly Dodie) has POTS also so that my be why she know what it is. Or she may know for a different reason. 🤷‍♀️

[@larak471]

Pot is actually a dutch slang word for lesbian which is ironic xD Also I have pots too!

[@mochiboy7750]

*slur

[@demidelrey7632]

Lara K true😂

[@LordMickael535]

I'm belgian and this is true

[@bleachneech]

mochi boy tomato tomato

[@jessicaoutofthecloset]

You might be new but you're doing well picking up the lingo! Just don't move to the top of a mountain! 😂 Love you x

[@alex0615]

SARALEIMusic They already have 😂

[@lola75997]

I love you Jessica !

[@neuroqueerjester]

*signs "i stan"*

[@masonadams194]

As some with a chronic illness and who has been up a mountain it is not easier up there, fun but hard to breathe

[@klabeck1097]

@Jason and Julie Smith I am diagnosing you as a complete and thorough jerk. I can only imagine that you or a loved one has a disability. Your anger is palpable. Viscous commentary is unnecessary.

[@breea07]

EDS is way more common than ppl think. I’m in medical school rn and we have extensive lectures regarding collagen and elastin disorders like EDS and Marfan syndrome. Hopefully other schools are following suit and the next wave of doctors will be more knowledgeable. We are also taught the importance of genetics testing which many doctors have so far been reluctant to recommend. Thank you for sharing your story and I promise to be a better advocate when I get my MD very soon.

[@kennaosborne5234]

I was always taught it was rare? I have arthrocalasia type ehlers Danlos and I have never met anyone with that before

[@AffectPho]

Kenna Osborne Most of the other types of EDS, like yours, are rare. But hypermobile EDS/hypermobility spectrum disorders appear to be common.

[@shellsfitnessjourney400]

Yes that would be great, however most EDS/POTS/Chiari patients are on disability and Genetic Doctors will not take Medicaid. Hopefully that changes as well.

[@bregieirofernandes]

EDS and Marfan are very rare. Benign hypermobility is pretty common. I'm a doctor.

[@birdies8397]

Yep! EDS, Marfan Syndrome, Osteogenesis Imperfecta, etc. were all some of the first diseases we learned about in med school when we talked about collagen, cartilage, and bone physiology. I guess the real problems are generational: older doctors don’t know what EDS is probably because advanced genetic testing has only been around for a couple of decades, plus its most recent classification was done in 2017, which means that the medical community is really just now getting to know exactly what this group of diseases are. Now, pretty much all medical students are taught what it is and can easily identify some of the signs, symptoms, and complications. I honestly don’t think we should blame older doctors for not knowing necessarily because it is a fairly rare condition overall and the continuing education classes related to certain rare disorders may not fit under their medical specialty, HOWEVER, if they really didn’t know, they should have just said “I don’t know” and proceed to do some research instead of being dismissive.

[@DaniellePerri83]

I love that you pointed out at the end that doctors are dickheads. A year and a half ago, I was in the shower and found a lump in my right breast. The doctors swore it was only a cyst that kept coming back after they drained it. They were adamant that it was only a cyst because I was 33 years old. Insurance wouldn’t even pay for a mammogram because I was “too young for breast cancer”. I insisted on it being checked over and over again until, finally, one doctor decided to test further and found the issue was a very aggressive and rare form of breast cancer in the breast tissue. You’re so right. We know our own bodies and most times we have to be our own advocate and fight for that diagnosis! Thank you for sharing your story.

[@dudacecconello3285]

Danielle Perri yeah, this exact thing happened to my mom too (only she was a lot older than you)

[@DaniellePerri83]

cecconello It’s so sad that doctors feel they can be so careless. Or think they know more about your body than you do. I hope everything is alright with your mom!

[@ireallyreallyhategoogle]

If only doctors could stop working for insurance companies and their own egos and start working for their patients.

[@LizTiddington]

Can I just say I'm so sorry you went through that and I hope you're ok. What's ridiculous is how it's so varied - I'm in the Uk btw, so you know what health system I'm working with. My uni doctors (every one I've ever seen) are unbelievably hyper-vigilant about breast issues, I've been to the hospital breast clinic for ultrasounds about once every 18 months for the last decade, I get benign lumps a lot, but they always make me feel totally valid in doing the full testing and tell me to come back if I'm worried. Then once I had one checked over the summer where my parents live - I'm used to immediate referrals at uni, they come in the post within a couple of days, and I'm at the hospital within 2 weeks - and my parents' doctor said "probably nothing, keep an eye on it for 6 to 8 weeks, come back if it's still there" - in the end it was nothing, but what if it hadn't been? It had already been there at least a month when I saw them, I always wait a bit just in case it's something hormonal. I seriously doubt that doctor would have ever referred me. Very weird how there doesn't seem to be national standards for a lot of these things.

[@Louisyed]

@@LizTiddington There will be national standards just sounds like some doctors don't apply them. Look up NICE guidelines for identification of breast cancer.

[@megm7006]

I've been watching your channel for like, three years and this made me cry. Four years ago I was diagnosed with POTS and whenever I talked about it, nobody knew what it was. And now you're, like, a role model and you can understand, sort of. I don't know if that makes any sense but it just made my week hearing that it isn't as lonely as it seems at first.

[@autumnboo2323]

stevie telling people to be nice to her because she's not 100% sure about everything is the purest thing ever

[@paytonholtz9448]

Autumn Vance stevie is the purest thing ever :))

[@alyssaborrelli8362]

autumn i knew id find you here!!

[@autumnboo2323]

Alyssa Borrelli duhhhhh

[@alyssaborrelli8362]

ofc she’s the best

[@AmandaCostner]

So adorable I love it

[@mae._.7676]

Stevie I'm actually crying. I was recently diagnosed to. hEDS is so painful and I fought to get a diagnosis. I knew I wasn't ok and it took 3 years to try and get a diagnosis, I finally got it at 16. Also every heds gal I've known is a lesbian including me lopl

[@HoneyDaengdej]

“I’m a POTS HEADS” 😂😂 I died.

[@Iwas15whenImadethischannel]

Doctors be like you are young and pretty so you can't have any real problems..Bye!

[@---nobody---]

15Anne94 For real!!

[@thegraveyard1858]

I went to the ER once because I overworked my arm and my EDS was not having it lol but no one there knew about POTS and EDS and honestly after trying to get a diagnosis and going from doctor to doctor for two years it’s so annoying that no one knows about it!

[@xotbirdox]

Especially if you're a woman. Got so many stories of women in my family being ignored and getting really ill bc of it. I've also been trying to get an endometriosis diagnosis for the past 3 years and at this point, I'm practically bedridden. My auntie had it and got really ill and became bedridden bc nobody listened to her. She passed away in March from Endo blocking her small bowel, which was all she had left bc they nicked her large bowel whilst giving her a hysterectomy after she begged for it for years. I'm so scared I'm gonna go down the same route. I miss my auntie so much and I just know I have the same as her. All of my symptoms point to it. I do now have at least one doctor backing me so hopefully laparoscopy soon but it's been a long time coming! 😅 Had countless ultrasounds and even a flexible sigmoidoscopy and nothing. They thought Crohn's before they thought Endometriosis, even though I was telling them I knew that it was Endometriosis. If I am right, I swear to god I will never forgive them for letting me get this bad. I already have PCOS, Endo is not a stretch. I am at risk of it and I have almost all the symptoms. Like how dumb do doctors have to be?? 🙄

[@KTSierra001]

I’ve been told I’m too young to be in pain so many times.

[@ohmygoshsosh1182]

Yep! Been there since I was about 10 years old.

[@KitsCreations1998]

I'm literally crying. I have EDS Hypermobility and POTS.. Ive been watching you for years... This makes me feel so much better

[@stevie]

OMG STEPH WE TWINS!

[@KitsCreations1998]

@@stevie yes!! I love you so much and also your the best 😍😍

[@makayla6963]

Steph Omg me too! I just got diagnosed a few months ago and I have been watching her for years

[@yeracontra]

I am about to become a doctor in 2 weeks. I feel so sad when I hear people being undermined by doctors 😢 so many of those stories around. Good luck Stevie and i look forward to the doco x

[@briancampos7907]

How’s Dr life going for ya?

[@HLB313]

If you don’t refer to your manager Dan as your Danager please can you start doing so immediately. ❤️

[@oscarh1616]

HLB that’s hilarious

[@IceKreacher]

I had a manager named Dan once. I accidentally spat into his mouth. Awkward.

[@LilaLyre]

Metalhead 1966 can we please hear the story of how you managed that? XD

[@h3rbst_schm3rz14]

I support this!

[@HLB313]

I hate when you accidentally spit in your Danager's mouth. If I had a penny...

[@SikanderG]

"In summation: I'm a POTS HEDS." LOL!!

[@BreanneWilliamson]

Proud of you and excited for you that you FINALLY got diagnosed.

[@stevie]

Thanks bb!

[@ireallyreallyhategoogle]

Hey, hi there. I liked your collabs with Alayna.

[@NotAnotherKuromi]

A while ago you said you could not stand for a long time & POTS crossed my mind but wow another lanky lesbian with EDS & POTS, welcome to the club! #ChronicSpoonie I am so glad you have your diagnosis even if you experienced the dismissal & disbelief of shitty doctors. As well as an explanation now you can peruse appropriate treatment. I really wish you all the best.

[@fabigonzalez6540]

“Invisible disabilities are real” THANK YOU, from someone with spina bifida who fortunetaly can walk... THANK YOU

[@cadycolleen]

Aye! I have spina bifida and I can walk too! I just have chronic leg and back pain. Invisible disabilities exist.

[@brookeggleston9314]

@@cadycolleen Boy, do they ever! I have Fibro, which is now well accepted, but not when I was first diagnosed. In the late '80s, it was often called a "wastebasket diagnosis". It wasn't until the arthritis association classified it as a rheumatological disease, that people started taking it seriously. Your condition, Stevie's, and mine, all cause chronic, intractable pain, which is one of the most under treated conditions known. The current "opiod crisis" makes it harder for people, in genuine pain, to get the medication they need. If doctors hadn't misprescribed drugs, like Oxycontin, which is a very effective drug for long term, chronic pain, we wouldn't have this problem. Unfairly, most insurance refuses to pay for Oxycontin. They'll pay for Oxycodone, but not Oxycontin, which is nothing more than a sustained release form of the very same drug. We need an advocate! Where we'll find one, I do not know. I'm blessed to have doctors who believe in treating pain. Most are not so lucky. Blessings to you! Pray for all of us . . . 💜😿💜

[@luzrosas8153]

Spina bifida is a problem? I got that on a diagnosis...

[@cabright8904]

SPINA BIFIDA AND WALKING HERE TOO!!! Also hydrocephalus, and Chronic Kidney Disease (one kidney, which works fine but needs special attention in order to keep doing so). Do you get the "You're so much better off than most people with your diagnosis - why are you wasting it? Since you're so much more normal, why don't you accomplish everything normal people do??' thing from people you know?? SO MUCH WRONG with that mindset and it drives me positively UP A TREE trying to figure out how I should respond to it. The ableism...it burns...

[@fabigonzalez6540]

Carolyn Bright all the fucking time! People are so stupid it drives me insane sometimes.

[@sestra_kat]

ohhh my god i genuinely started crying when she said “i believe you, and someday everyone else will too” it’s been so hard living life without having anyone believe me when i say i’m not alright just because i have an invisible illness. it sucks.

[@madisonturner4785]

This is the representation I have always wanted in my life, omg. Welcome to the EDS and POTSIE community. I have hEDS and POTS and you've been my favorite youtuber for a while now since I came out a few years ago as a baby lesbian. You've got this! It can be hard to manage, but learning to manage it becomes easier the longer you have it. I was diagnosed 3 and a half years ago and have come so far. You can do this, Stevie!

[@stevie]

[@hayliecassidy711]

Sapphic heds and probably pots party

[@PeepingUkulele]

Madison Turner are you not able to have a job with this diagnosis? I don’t understand how she claims to be disabled?

[@madisonturner4785]

@Jason and Julie Smith As someone with hEDS and POTS and multiple other chronic illnesses, I understand where you are coming from. A diagnosis does not always equal disability, but for me it does. And it is up to each person to decide how they use that term. Unless you know Stevie personally, I don't think we have the right to make the judgment about whether or not she is disabled or not. I know that I personally have flare ups and sometimes I present as completely healthy and fine and productive. But there are days when ai can't get out of bed and can't eat and am in excruciating pain. Just because it cannot be seen doesn't make it real. My life was completely changed when I started to get sick, but it's hard to remember that now because I've adjusted so much. But there is so much of my life that I've lost to being chronically ill. However, I think that it is not anyone else's place to decide whether I fit the bill for disabled or not except for me and my doctor and I would hope you see where I come from similarly to how I see where you come from. Well wishes to you all.

[@madisonturner4785]

@@PeepingUkulele I am able to maintain a job. I am unable to walk long distances or walk up the stairs. I am severely limited in what are considered normal activities for people my age. Disability isn't always about being able to claim benefits or being able to work or not, it's usually about being impaired physically or mentally in some way. Well wishes to you.

[@marilyns8858]

Congratulations on finally getting a diagnosis. Use your new info to support others too just like you plan. You are a great advocate and lovely person. Dont forget the sex stuff cos its really important that disabled people are seen as whole sexual beings too.

[@logh3617]

I was diagnosed with pots last year but before that a doctor legitimately told me that she thought it was because I wasn’t close with my mom

[@hannahmac8483]

Before my diagnosis my gp told me it was all in my head and that I was creating the symptoms 😂

[@---nobody---]

Wow that’s absolutely ridiculous!

[@---nobody---]

I’m sorry to both of you

[@mickibabe5495]

I could only imagine a doctor telling me that (no diagnosis, no reason for a diagnosis) but I would tell her “My mom is dead........” 😂😂😂

[@theasvensson00]

@@hannahmac8483 My doctor literally pointed at her head and told me "it's all in there" sooo brb I'm gonna ask a different doctor if I might have pots

[@dansbury]

I love that the classy open palm comes out when talking about Jess. Just the mention of her makes us all a little more elegant.

[@mariottabuttalapasta]

Oh if I had a dollar for every person that told me to do yoga...

[@DragonDancer]

Seriously. Fuck yoga.

[@Athen239]

I enjoy yoga and love it. But it's not for everyone. Especially with certain medical issues.

[@TheYedad]

have you tried yoga?

[@freefalling767]

Marion D. Haha or a dollar for every time someone asked if it was anxiety, or if I have tried essential oils. Sigh.

[@Athen239]

If I'm going to recommend anything, it would be Martial Arts. There are so many systems. Judo can work well for the blind for example. Tae Kwon Do for those with no arms. There are even organizations which support people finding the right system such as Adaptive Martial Arts. However, everyone's life journey is different. The biggest thing is, what may have been a miracle "cure" for one person isn't going to be for another.

[@alisonroxx9]

Hi Stevie! I have HSD. As far as I understand it, HSD and hEDS are closely related but hEDS has stricter criteria in the hopes of helping scientists find the genetic marker. HSD can be as severe as hEDS, but in my case I don't have the exact same degree of hypermobility in every joint. Still have POTS, dysautonomia, migraines, trouble swallowing, chronic pain, interstitial cystitis and the whole shebang. Welcome to our community, I love it so far!

[@lindsayosterhoff2459]

I have tears in my eyes. This would actually explain everything I've been seeking answers for over almost 20 years now. This gives me hope that I may get a diagnosis and proper treatment someday. At this point I'm basically homebound at 37 with no diagnosis.

[@biber123456789]

ARE👏THE👏76👏DISLIKES👏YOGA👏 TEACHERS👏 Also: Love you, Stevie!❤❤ I'm so happy you got FINALLY diagnosed!

[@deadschooled]

No, they're God fearing christians that know how to exude shame, like normal humans...

[@zacharypope7043]

Welcome to the disabled people club. It sucks but you got this. Please, don't let those people that act like there is a hierarchy to disabilities get you down.

[@stevie]

UGHHHHH I needed to hear this right this second thank you

[@zacharypope7043]

Stevie you're welcome. Being how open you are about yourself in your videos. I am confident that you can handle any issue like the badass you are. Hell, I had to teach myself how to walk again after the doctors and physical therapists said there was no hope. And I am lazy. I can't what to see what you do.

[@PfeifJarobi]

That sounds like some Munchausen by Internet bullshit.

[@randomperson9224]

"I'm new, be nice to me please" literally me every time I go somewhere for the first time

[@AbbySams]

Hell yah chickadee welcome to the EDS fam. We're all falling apart but we're keeping each other together. So glad you have answers.

[@claudiahelen1]

Abby Sams One of my great friends has EDS and I couldn’t never imagine having it like y’all are troopers holy hell. It’s not an easy thing to have.

[@abbyehrenstein2550]

When you said you had EDS I immediately was like “ yup and the second thing will be pots” Lmoa I guessed it. Also welcome to the pots fam

[@Jade-mg9vb]

Love you Stevie, been here for about 4 years and I'm super proud of everything you've achieved!

[@CH-oi2ep]

You’re actually so beautiful that I constantly have to go back and replay everything you just said because I got lost staring at your face😪

[@haleydyson4220]

“Doctors are dickheads” So relatable. I have/had POTS but mine was caused by Lyme Disease/Co-infections and it was SO difficult to get a diagnosis for all of them. So many doctors thought I “just had anxiety or depression.” Like I know my own body and mind. I’ve been symptom free for about a year now so we’ll see how much longer that lasts.

[@abbyehrenstein2550]

Haley Janáe pretty much same except I had mono and Lyme disease in the same year so they don’t know which one caused it. Congrats on being symptom free!

[@thegraveyard1858]

Haley Janáe right!? Like when I learned about POTS and possibly having it the doctor dismissed it (cause I didn’t have chest pain 😒) and they just said I had anxiety! (Two years later I was diagnosed with POTS and EDS by a specialist btw)

[@LizTiddington]

You're joining one hell of a community, so many awesome EDS and POTS sufferers on social media. I'm really glad you got a diagnosis, but I'm sorry it's something not curable. Keep going Stevie, you're awesome :)

[@jazzylev]

Last time I was this early on KZbin I thought I was straight.

[@cheapestqueen559]

Jazzy Lev mE

[@divagamer6009]

Wow

[@cassandraclover777]

as a disability advocate/writer/frequenter of the lovely corner of the world that is disability twitter- i am sending you so much love & lots of prayers. my diagnoses have taken a long time to get too, & i'm sorry you had to suffer so much before getting the help you deserve. welcome to the disability/chronic illness community stevie! this community really is like a family, & i know i speak on behalf of many people when i say we've got your back

[@Tegan97]

Woah Stevie you don't understand how helpful this was! I live in the UK (so healthcare is provided by the government for FREE). My older sister is 30 and has EDS and has been diagnosed by doctors because of her chronic every day pain due to the hypo-mobility. BUT, she's also always had severe anxiety and fatigue. Doctors have told her this is mental health issues and blah blah blah nothing has really helped her to understand it or overcome it. I had no idea until that it could potentially be POTS and related to her having EDS. Now I'm not trying to diagnose anything here but I am going to send her this video so she can go to the doctors with more information and hopefully get her true diagnosis too! Seriously thank you Stevie, this might have shed a lot of light on her condition for my sister who like you suffered for so long and struggled to even be diagnosed

[@stevie]

my eyes are leaking

[@NotAnotherKuromi]

Most people with EDS suffer from fatigue to varying degrees but the people who have POTS too definitely have worse fatigue & anxiety is common. To get an idea if your sister does have POTS or not is to do a 'poor mans tilt table test' get her to lie down & relax (as much as her anxiety will let her) for at least 5 minutes & take her pulse rater, then get her to stand up & take her heart rate again, keep her standing for 10 minutes & take her pulse every 2 minutes. If her pulse raises 30 bpm or more from lying to standing, it is likely she has POTS. I am sure you & your sister know exercise & physio helps reduce fatigue in both conditions as much as possible. You should also check out EDS & POTS facebook groups. Its a good thing you happened to see this video, misdiagnosis & unanswered questions are stressful to anybody, never mind when you have anxiety problems.

[@niamhjacobs4830]

Omg I have both too!! Was diagnosed at 5 and it has been a big part of my life. I actually love how real and relatable you are!! Thank you.

[@rachelheselgrave7802]

I feel so bad that you had such a rotten experience in the health care system. They should have listened to you and taken you seriously. I am a nursing student and I will take this with me to never forget to listen wholeheartedly to the people I encounter. Remember though, doctors, nurses, health care aids, etc they are all human. They are not perfect and they don't know everything. They shouldn't have handled your situation in that way though. I wish you all the best in your journey, you inspire me so much and I love all that you do online :)

[@stevie]

[@ireallyreallyhategoogle]

My mom is a retired nurse, so i have heard how it was in the health care system, in Canada. I think the U.$. system is much worse. Doctors have huge egos and refuse to listen to nurses or patients. Everyone is overworked so mistakes are much more likely. Pharmaceutical companies and insurance companies are always lobbying doctors and hospitals, so you might get what they recommend instead of what you should get. Old doctors refuse to keep up to date and insist on doing things as they have always done them, even after it has been proven ineffective or something has been proven to work much better. Administrators with no medical training end up making medical decisions based on costs and budgets. Not to mention the fact that modern medicine is all about treating symptoms rather than curing or prevention. Good luck!

[@rachelheselgrave7802]

I cannot speak for the US system as I am Canadian, but that does sound like it needs a LOT of work. When people are out of their depth they should be honest, do more research and consult with people of higher expertise, rather than just slapping a label on a person just to be done with it and move on. No one can know everything, but that shouldn't impact people's care. People should always come first before "convenience". We have so many different health care professionals, so why are we not working together?!

[@TheRecoveringButterfly]

I’m proud of you for being vulnerable and sharing this, sunshine! I have chronic pain and ptsd/anxiety and I have a psychiatric service dog who also helps me with light mobility 👏🏻

[@SequoiaParanoia]

Omg I've been watching you for years for LGBT+ advice for years but have also been suffering for EDS and POTS all my life and found out a couple years ago and I know it sucks to relate to someone about this stuff but welcome to the zebra community

[@SequoiaParanoia]

Oh and ya the hole yoga thing sucks it dose work for some people who have it like my mom but not me because I can't stretch anymore because of the damage if done ( I was a gymnastics. Alot of people with it are gymnastics or ballerinas ) but the one thing that has helped with both is medical marijuana and weight training if you have any questions just ask me about them

[@EmpireFamily]

Ohhhh found your channel whilst researching Eds for our daughter ❤️ended up enjoying your channel on a whole different level 👏

[@theannieelainey]

WHY IS EDS SO RUDE??? ❤❤❤❤ also omg I'm crying, I love youuu!

[@jessicaoutofthecloset]

You must feel very smug for getting this diagnosis 100% right! 😄

[@theannieelainey]

We were all the connective tissue gang! Haha!

[@neuroqueerjester]

Annie!! It's so nice to see that at least you're all bonding over how to cope with your disabilities and cheering each other up and I love that you're all working on spreading awareness!

[@shutupsavannah2195]

@Jason and Julie Smith you don’t know how much her life has been impacted, and if she has needed to make changes to her personal life behind the scenes.

[@theannieelainey]

@Jason and Julie Smith as someone who has this same condition, is a wheelchair user, and knows her personally. YOU DO NOT KNOW HOW THIS ILLNESS HAS IMPACTED HER ABILITIES. How she was absolutely symptomatic enough that I, and other people with the same illness took notice.

[@Hippolytica]

Thank you so much for this video. I’m going to see a neurologist in a few days, after close to 10 years of going to my doctor complaining about chronic pain, and I feel so powerless. I’m preparing myself to hear the same thing Ive heard for years: “There’s nothing wrong with you, you’re completely fine”

[@caro3083]

So happy to see a big KZbinr speak out about this! I’ve had POTS my whole life & it was such a battle to get a proper diagnosis. I’ve since been diagnosed with Lupus, fibromyalgia, and Celiac, but POTS was by far the most debilitating. Just know you’re completely supported & loved by the spoonie community. So sorry you have to go through this, but so glad you’ve found comfort in sharing your story! 💗

[@irisfigueiredo6527]

When you started talking about an invisible disability the first thing I thought was “hypermobility!!!” and then I started crying when you said that. I have hypermobility and fibromyalgia and your video was so good to show other people how a part of it works!

[@jasmineblemaster7226]

Oh Stevie! I have EDS too, it's such a weird thing that people have never heard about. I have the hypermobility type as well. My joints are insanely mobile and I have scoliosis on top of it. I also have the super stretchy skin as well. I can pull the skin on my face quite far. I've had this my entire life and I used to just think I was insanely flexible, but then I found out I have Idiopathic Scoliosis about a year and a half ago. It's been so hard to find someone in person who understands why I'm always in so much pain, I constantly have to cancel plans because of how bad my symptoms are. I feel terrible and thank you so much for bringing this to the attention of people on KZbin, I wish my loved ones understood that I'm not trying to avoid them. I've watched basically every single video you've ever posted. I love you soo much, you're an amazing person. Love ya Stevie!!

[@stevie]

omg disability twinsssssss love you!!!!

[@jasmineblemaster7226]

Ahh you responded! I love you sm

[@alison9189]

Omg I have scoliosis too and it's kinda frustrating when you tell someone your back hurts and they're like oh ya I have a bad back too and it's like no it's not the same lmao

[@jasmineblemaster7226]

@@alison9189 exactly but then you don't want to get into the specifics and sound mean

[@feyt.9049]

I feel the need to say that this video has started me down a path of trying to get diagnosed for myself. A lot of the things you say in this video I have experienced for my whole life so I did more digging into EDS and POTS and they make so much sense for what I experience on a day to day basis. I just want to say thank you because I dont know if I would be seeking a diagnosis if it weren't for this video and the ones that people like Jessica have made to share their stories.

[@kale9591]

Stevie we have the same kind of EDS! I know the categories and shit are confusing, they just updated the diagnostic criteria within the last year so theres a bunch of new stuffs. Did ya know theres an EDS learning conference? You've got a whole community of people who are here to support you and know what you're going through and I'm so glad for you that you already found some of us in your friends!

[@angiem6383]

Hi Stevie. When u said your diagnosis, I immediately thought of Jessica & how she might be a good person to get support & talk w/ about this. I imagine Annie is too. I'm so happy that u finally got your diagnosis. (It took me reading & bringing an article about fibromyalgia from Psychology Today to my Dr. to get a diagnosis. Once I was diagnosed & referred to a rheumatologist, he stopped communicating w/ me.) I was diagnosed in 1999 w/ fibromyalgia. I was 24. It is so important to have people in your life that support & can or at least try to understand your struggles. Sending you loads of spoons & matchsticks (see spoon theory & matchstick theory for explanation), Stevie. Take care of u!

[@SpoonieScully]

I have hyper mobile joint syndrome and fibromyalgia so my joints stretch too far (kinda like Stevie) and the fibromyalgia causes all of my joints to basically be in constant pain and there’s not much that can be done to change it. I really appreciate when youtubers come out about their disabilities and such. It just feels so raw and real and it makes me feel a little more normal. Also, it helps so much that Stevie is also a member of the LGBT+ community because that helps give me more validation lol. LOVE YOU STEVIE

[@stevie]

That's what I was diagnosed with before I went to a geneticist and he ruled that I do not have fibromyalgia.

[@SpoonieScully]

Stevie i know that fibromyalgia is commonly misdiagnosed and since I was diagnosed a couple years ago (I’m 18 now) I have a feeling my diagnosis will change later in my life. But we’ll see. :)

[@vamprzhope]

me too !!

[@LizTiddington]

Fybro sucks so much, my best friend has it. I wish you all the best for the future and i really hope there's better treatment for fybro soon xx

[@GabbyPL23]

i have fibromyalgia too! it’s a pain in the ass i’m too young for this shit

[@sjrussell2075]

Welcome to the community! I was diagnosed with the same things around 5 years ago. It sucks to deal with but getting a diagnosis is so important both for improving physical health and mental health. I hope that you have an easier journey going forward :)

[@anujadeore8388]

As a medical student who watched some EDS documentaries as a child (I was a weird kid), I will happily back you up on everything you said in this video

[@paytonstephens999]

I was diagnosed with POTS along with APECED (another genetic immune disease). thank you for making this video, because it is really hard living with diseases that arent physically visible. people question you all the time to the point of just shutting down, which doesn’t help. im constantly on the search for someone to look up to that understands this. so thank you much, and so much love to you xx

[@hadleyray]

SO happy you have a diagnosis after all this time!! EDS is so so so underdiagnosed and the openness and education you're providing will directly help others to get a diagnosis as well. Thank you for being you, Stevie. 💜

[@redweathertiger]

i’m happy for you, stevie!! i have heds + pots and the diagnosis changed by whole life. i hope the world becomes more accessible for you.

[@Vwindisch123]

We love you Stevie! I’ve been supporting you for almost 2 years and never doubt you! I love that you are open about your life!

[@brynnbrewer9639]

This is actually the coolest thing seeing you talk about this. My entire family has EDS and POTS (gotta love genetics), and seeing someone go through what I have and in the process of trying to figure it out is SUPER COOL.

[@Alleycat417]

OH! I'd love to hear more about your experience with... Brainfog, circulation, how you improve your circulation, ANDDDD how you you deal with your disability with your friends, family, and partner(s).

[@stevie]

great video ideas!

[@KitsCreations1998]

Also you should try to get some of us fellow edsers in your vids! We all need some extra representation!!

[@kelseyf2619]

As an EMT student learning about orthostatic blood pressure, this was fascinating

[@HaileyRade]

Must protect stevie

[@Jess.do.you.]

At all costs.

[@miluxor2541]

She is a feisty cinnamon bun too feisty for this world < 3 3 3

[@fictionalhuman]

Hi. I finally got a doctor to tell me they thought I had hEDS earlier this month, and I started crying for finally having a doctor take my symptoms seriously. I’ve known for a while something was wrong with me, but finally having some validation from a diagnosis has been such a huge relief. I’m so glad you got your diagnosis finally, and I’m so thankful you shared this. We need to spread the word more about EDS so more doctors will take the time to learn about it.

[@nicolefrost5517]

We have the same type of EDS and POTS. Having these makes me scared about my future, but it’s amazing to know (from your example) that it’s still possible to be successful and to live a fulfilling life. Thank you. I needed this today.

[@FurryWingedAngel]

Two weeks after first watching this video now I'm watching it again with my diagnosis of hEDS! After being told I "looked fine" and that my pain "might just be one of those things" and "we might never know why you're in pain" and my favourite " you've probably just got a low pain threshold". Finally having a diagnosis is the best feeling ever! Finally all my years of pain is explained and I feel so validated. It's been amazing for me to be able to come back to this video with my diagnosis and to know I'm not alone, so thank you for that!

[@tetsubo57]

I'm glad that you have an accurate diagnosis. Not glad you have the conditions. I'm diabetic and I've lost count of how many 'helpful' bits of 'advice' I've received over the years. Much of it was well meant, none of it was wanted.

[@katiebrooker1437]

Same! Even worse when you work in the health industry

[@tetsubo57]

I've lost count of how many diabetes 'cures' there out there. All being hidden from the public by Big Medicine.

[@cardinal304]

Congrats on getting a diagnosis! My friend has POTS. It took forever for her to get a diagnosis too. As a 12 year old they brushed her off. It took her another 15 years to get her diagnosis. Now she is helping analyze medical studies to help people like her get effective treatment.

[@ijoined4ctfxc]

Glad that you finally got a correct diagnosis! It’s always nice to know that you’re not crazy/a hypochondriac. Also I’m digging the unintentional ASMR @ 8:01 😅

[@nicolethomygentil4360]

I never thought I'd see an influencer with EDS. Thank you so much for sharing! It feels so nice to be seen

[@paigeflorence7523]

My biggest pet peeve about chronic illness is this: just because we have similar diagnosis doesnt mean your treatments will work for me too. Yes I get it being a vegan worked to help your junk but I have been told by multiple medical professionals that that will not work for me. Stop shaming me for not being vegan. Thank you for trying to help but we do not have exactly the same thing and honestly I'm a lot sicker so yeah.

[@NotAnotherKuromi]

My most annoying experience was when a specialist nuerogastroenterologist professor told me different diets would greatly improve or eradicate my POTS symptoms... Only for my symptoms to not improve at all & I lost a dangerous amount of weight. The whole one size fits all mentality is at least stupid & at worse destructive.

[@wittypseudx6839]

literally... like hon i've got them Digestive Issues please stop telling me to go vegan bc i already don't absorb enough nutrients, i don't need an even SMALLER pool to get Nourished from 😩😩

[@ohmygoshsosh1182]

I agree completely and feel that on a deep level!

[@sonicsakura]

Oh yay! SAME FAM! I love your content already and having another KZbinr with EDS to watch gives me life especially on my high pain days when I get down and feel alone.

[@stephanieandmadix1541]

Thank you for sharing! I have POTS as well and I have been misdiagnosed so many times over the years. It wasn’t until a few years ago that I was officially diagnosed. I’ve still been seeing specialist to see if I have any underlying autoimmune diseases. It gets quite frustrating. I live your videos. I wish you nothing but the best.

[@anakik2722]

Hey thank you so much. Not only did you give me the confidence as a baby gay to grow up to be a Huge Effing Lesbian (trademark) but now you’re speaking out on invisible illnesses. I appreciate you so much, you have no idea how you have affected my life. Much love to you on your journey from a gay with chronic pain.

[@lauramoon6211]

Ily sm Stevie. I’m so glad you finally got a diagnosis. There is another KZbinr called Martina from the KZbin channel Simon and Martina. She also has EDS so i dont know if you wanna talk to her or not? Just an option ❤️

[@RacheyBabes]

Came to post these guys too, they are amazing and genuinely brighten my day every time I watch them (past 3 years now!) and she has some amazingly inspiring content about her EDS. Congrats on getting your diagnosis Stevie, I know getting mine (unrelated condition) really, really helped me mentally.

[@LifeOfPia]

I used to watch them when they were "Eat Your Kimchi" and living in Korea. Martina has been really candid about living with EDS and an excellent educator on the topic. Also their food videos are 👌

[@lauramoon6211]

LifeOfPia I’ve been watching them since then too! I love them sm and Martina is AMAZING

[@polybiusnymb6446]

Looked it up. EDS is not considered a Disabled based on Blue Book listings. Is EDS considered a disability? Applying for Social Security Disability with Ehlers-Danlos Syndrome. Like many rare genetic conditions, there is no Blue Book listing for Ehlers-Danlos. However, you may still qualify for benefits if you can match a listing associated with your particular symptoms or impairments.

[@AllThingsLeftBehind]

I also have POTS and HEDS. I've been watching you for years, and I'm so glad you've found a diagnosis. Also, I wanted to punch all the doctors who told me my crazy high hr was anxiety. It happened for years. Welcome fellow Zebra!

[@mcaserio8198]

Your positive outlook on this is inspiring. It took me years to get all my diagnosis's - hashimoto's, ocd, small fiber neuropathy, dysautonomia, and chronic nonbacterial osteomyelitis. your channel has helped me so much in discovering and exploring my sexuality. thank you

[@sanayaford6092]

I have EDS to I was 11 when I found out and I went to a hospital and dressed up like a hero and said I had stretch arms it was amazing

[@sonmihae-joo6286]

waow that's badass !

[@lily08765]

OH MY GOSH IVE BEEN WATCHING YOU FOR FOREVER AND I HAVE BOTH OF THOSE!! I LITERALLY STARTED CRYING IN MY DORM ROOM. CRYING. I LOVE YOU SO MUCH

[@Alleycat417]

Welcome to the disabled community! :) As a former disabled KZbinr, I completely can relate to this video. I have Generalized Dysautonomia so we are spoon-ish cousins (POTS falls under the dysautonomia umbrella)...

[@stevie]

OMG DISABILITY COUSINS!

[@Alleycat417]

Oh honey. You wanna talk ANS dysfunction?! Anytime. My whole career (& now grad school) is dedicated to disability advocacy and special education. Anytime, cuzzzzzz.

[@cemd22]

I just happened to stumble upon this and THANK YOU so much for spreading awareness to POTS and EDS!! It takes the average person 7 years to finally have a diagnosis, hopefully that will change soon! Also, Mast Cell Activation Syndrome usually goes with POTS and EDS, if you have any sort of allergies that just don’t seem “normal”, it’s something to look into. Good luck on your journey!

[@MW-bh7tj]

"Invisible disabilities are real" what I have to tell all the time, I have ulnar impaction syndrome (basicaly my wrist hurts everytime i do anything and even when I don't do anything sometimes) people at my high school would tell the teachers I was lying when I said that I couldn't write quick or for long and the teachers started to believe it cause, at the time, I wasn't diagnosed, it took me a year and a half to be diagnosed. My doctor told me that it could stop at 18 and if it doesn't it means I am going to have the syndrome all my life, I am 20 now ... 😒

[@derekraymond2150]

Thank you for being so open and real with invisibile disabilities!! I do not have EDS or POTS, but I do have two invisible physical disabilities that I've had for 6 years and a few mental illnesses from trauma and whatnot, and you have made me feel so much more hopeful. Seriously, thank you. All my love, Derek XO

[@hannahjade5352]

omg okay, when you mentioned "invisible illness" I was like fuck! I have endometriosis which is chronic hell lol and it's not seen as a disability (I'm from Australia) even though it covers every single ground for a disability but whatever. I cannot stand doctors, and I'm so incredibly sick of people telling me to try random quick fix remedies to cure my incurable disease? My whole experience with endo has been absolute chaos, the pain that I've had to deal with since I was 13, the passing out, vomiting, and convulsing, emergency room visits where I'm treating like a pathetic sook, and holy shit the blood loss that had a nutritionist tell me that there was nothing I could do, and thus setting in worries of a serious heart condition, have left me fucking furious! I'm only 18 and I'm already tired. I've had to have 3 surgeries in 12 months (during my most important year of schooling), and it was so awful I nearly dropped out of school because I didn't think I could go on like that. I remember being in so much pain that I was on the ground outside my locker gagging as my right ovary was twisted and pulled with every movement I made because it was stuck to my bowel, feeling my literal vagina (the actual organ) getting tugged backwards as I tried to pay attention in English. These things happened for 5 years and I was told by everyone that the pain was in my head. My "bad periods" are only one fucking symptom of a horrible disease, something that no one around me seems to understand. My family have had to spend thousands on my surgeries (which I will need to have for the rest of my life), my education has been fucked, and I spent 5 years of my life feeling like a horrible, selfish burden on everyone around me. If something isn't right, do something, do whatever you can even if it seems like its taking forever. I'm lucky, 5 years of waiting is nothing compared to what it usually is, but I only got it cut short because I was furious and was lucky enough to have people around me to make me keep arguing for my health. We know our bodies, not the people around us, so it's up to us to make sure we get the answers we need. sorry for the rant but I'm MAD, nobody should have to suffer just because their illness can't be seen from the outside. **another shitty thing is that my treatment options rely on protecting my "future husband" from being sad. I'm a lesbian, but I still have to make sure that I'm keeping some non-existent man from feeling shit for a bit, rather than my actual human well-being.

[@harrietsnowball4981]

I’ve had a similar story however I was misdiagnosed with IBS, anxiety but those are just two symptoms of my chronic illness I have Hypothyroidism - Girls and guys get your thyroids checked regularly! They affect so much and I didn’t even know what a thyroid was or that I had one till this year! Also I have BPD or EUPD finally this year I’ve been assessed properly! Wahoo! Keep going Stevie you’re awesome!

[@persthecatalyst]

So pure, so strong, so beautiful💕

[@lizardlace9510]

I’m so happy for you that you got a diagnosis!! i know from my experience it can be so validating and make it so much easier to explain your disability and access help for it

[@IzzyKDNA]

GIRLLL I HAVE hEDS AND POTS TOO!!!!!!

[@sidessherri]

I am so sorry! I am disabled and yes I look okay so I must be okay. I have family members who make fun of me and do not support me. I am glad you are building up a great support system!

[@HotPinkSun]

What a great video 💖💖💖 ily and so happy you found a doctor who isn’t a dingus.

[@mstib1472]

You are amazing and wonderful. Soo happy you finally got a diagnosis. I can completely empathize with you. I went YEARS trying to get a diagnosis for my thyroid condition and I’m still working on having that under control. Thank you for being you, being light hearted, intelligent, and sassy as fuck. Love ya Stevie.

[@sadiaxx8904]

💕❤️🔥🌈 u look amazing and your face just glows I’m in bed trying to go to sleep but just randomly watching loads of videos

[@anna-lg1jq]

i was diagnosed with pots over the summer after doctors ignoring my symptoms for years, and it’s so comforting to know that someone else went through a similar experience. i’m trying to get into a geneticist to see if there are any underlying causes and this video honestly gave me a lot of confidence that i’m not minimizing my symptoms, so thank you

[@hmmcms1]

Congrats stevie on finding a diagnosis! Very happy for you 👍❤

[@animeartist4255]

I'm glad that you found out what was the problems. I'm glad that you have an amazing crew to help you.

[@caitlinmohar]

i love you stevie!! we'll be here for you no mater whattt!💞

[@taigha105]

I just started watching you and have been like binging. I feel that shit. I don't have what you have; however, I do know what it's like to have invisible disorders and also be in pain at all times. Like no matter what my body is aching and is in tons of pain so I feel you. We're always supporting you girlie!!

[@Bespeon]

I'm still at the "lol you're probably just depressed" stage of diagnosis, despite some doctors being sure I have hEDS, like what?!?!

[@stevie]

throw them in the TRASH CAN

[@MDWHEELS1]

Hi Stevie I think you’re mint , I watched you for ages and you’ve helped me come out so I wanted to help you ... so here it is - my one day rule -I’m disabled, I’ve got cerebral palsy and I’m wheelchair bound and I live life to the full ... work 50 hours a week , I drive etc , I’m not preaching but I know “ you’re new “ you will get your shit days ... just remember you’re aloud them but I just allow yourself one day! then after a day ...Recognise how lucky you are and you need to see how worse of someone people you are! You’re beautiful, funny, smart and you have your shit together anyway ... thank you x

[@leannuh47]

3:51 made me very happy

[@stephaniew9000]

Freaking love your realness! You explained this so much better than I ever have been able to. Sending this out to my other Chronically blessed friends!