Reviewing EDS/POTS portrayals on tv 

I like what she said about a diagnosis, like of course it’s not a good thing but thank God it’s at least an answer. I feel like many can relate to that

It seems to me like the noises of joints being put back into place are grossly dramatized for the show

I know this is really not the point of the video, but I love that the cat is climbing on the wheelchair in the background.

I watched the House episode and got really excited because I had never seen POTS in a medical show. However, they didn't stick with the POTS diagnosis, he had something else, so that might be why his heart rate was not accurate to portray POTS.

The most unrealistic thing was the doctors on Casualty actually giving a patient that much time and looking at their overall picture without the patient asking them too for years on end. Or even knowing what EDS is haha... At least it's free! Save the NHS!

Honestly I have had multiple doctors say “ I read about ehlers Danlos patients in a paragraph in med school but we were told we’d never see one” if you start looking for a specialist you will see as common as this may be, it’s very hard to find a doctor to recognise. It can take years ( decades even) for many to be diagnosed

"I've got a thing!" "It's not a great thing" I know this feeling much too well! I have only been diagnosed with JHS, but for the longest time thought I was crazy. It's not a great thing, but oh gosh does it feel good to be able to put a name to it.

I cheered when this episode of “Casualty” first aired in the U.K.! It was the first time I’d ever seen EDS portrayed in the U.K.

I can TOTALLY relate to the part where the girl on the last video says "It has a name, I've got a thing! not great but it's an answer, I've never had an answer". Been struggling for years and when I finally got diagnosed I said the same! and felt exactly the same way

I had a doctor try to tell me I had panic disorder! I can relate

I’ve seen all three of those as well, I think personally my fave was the casualty one- yeah it DOES hurt like hell, but after 50 years of daily pain, not even knowing what pain free IS I can be pretty blase at least on the outside. I think I saw this one right after getting my dx, and could totally relate to her feeling validated about having a name for her “thing”!!! Also the eating disorder thing, I still get, which is so aggravating.

A bit late to the party but they actually had someone with EDS help produce the Grey's anatomy episode!

I remember watching these pre-diagnoses with my husband and saying “I totally relate to this. That’s exactly how I feel” and he looked at me as if I had a third eye lol. Now it all makes so much sense!! And how funny I commented on each one and then later got my DX!

Lmao the POTS on house is weird. But laying down your heart rate doesn't go up, it goes up with postural changes. My POTS doesn't affect my BP much, but my Tachycardia gets dangerously high. Although as soon as I sit my HR does start to drop but not rapidly it gets back to normal within 5-10 minutes.

Cool vid! I sublux basically all the time and it doesn't hurt in the moment, but i will feel pain later. I'm not aware of any dislocations except my hip and when it has come out, it feels not painful, but very odd and like something is not right!

I am seriously the biggest house fan but there was also another episode where a woman's ONLY symptoms were miscarriages and hoarding tendencies... and she was diagnosed with EDS. no joint pain, no hyper mobility or skin issues, no medical history and no beighton score yet they came up with that...? I swear I have never been more confused and frustrated at a tv show in my life lmao

I think EDS 3 will no longer be considered rare within a couple years

Tonight they featured a patient on the NBC show Transplant who had EDS. The portrayal seemed to present more along the lines of vascular type, although they only talked about it as EDS as if there weren't variations or different types. Somehow the TV actors confirmed the diagnosis with a skin biopsy. Although I'm happy to see TV shows promoted the awareness of EDS, I'm unsure if this was an accurate portrayal. The symptoms the TV patient had were dislocations, easy bruising, stitches tearing out and reopening a wound, and a ruptured bladder. They mentioned heart valve issues as well. This is very vEDS.

I like your new intro....The grey's anatomy did a pretty good job of depicting it. However, the House episode sounded more like orthostatic hypotension, rather than pots. Since they were more talking about the blood pressure dropping than the pulse going up. On Casualties, I know some of my joints don't always hurt when they go back, so I can sort of relate to that. It was a little off topic here and there, but I agree that the Grey's anatomy episode was the best. I will also say in a way I was happy when they said here is the name now you can not look like you are making things up.

"It has a name- I have a thing!" "I have an answer." That's how I felt when I got my fibromyalgia diagnosis!

I finally got my diagnosis this year and finding a channel talking about eds is amazing

There is a House Md episode with someone with EDS, it's the episode 18 of the 7th season

Reality TV, but I was so excited to have representation on Rupaul's Drag Race. Qween Yvie Oddly even dressed up in zebra drag for the NY con 🦓💜

The I have a thing response is spot on though! Also wish getting a diagnosis was as easy as going into A&E and describing a few symptoms.

I empathize with the girl on that show so much. For years I was told everything I experience was from anxiety... Even when I had ridiculously elevated blood pressure (which is hyperadrenergic POTS) they said that it was from my anxiety. Like how would my anxiety cause my bp to go to 180/110? I had a doctor tell me that numbness I was feeling was anxiety and that I should get a fidget spinner to get my mind at ease. I also had doctors think I was anorexic... I don't have gastroparesis but I have irritable bowel. The offensive things that doctors came up with... It would take a year for me to write it all down. What is unrealistic about this is doctors figuring this out so quickly. It has taken me twenty years to get proper diagnoses. It took my Apple watch alerting me of my elevated heart rate for me to finally figure this out, mostly on my own.

When the doctor said to me that I have EDS, I was SOOOO HAPPY. Like, I finally can tell people that I have something that has a name, and it's not just laziness

I have EDS, too! It’s very painful and I hurt quite a lot from it!

I hate that two of the shows called it “one in a million”. I guess that line on Casualty was more of a joke, because she did mention that hEDS is believed to be more common. But still.

This was really interesting! Thank you for taking the time to track them down!

11:10 AMEN! It's an Answer! I know that exact feeling. I have people not only in my family and friends but I have had "Doctors" that have treated me like I was a faker. I know the feeling. There are some people that can treat you so bad and so many people that think that if your symptoms don't match the Doctors "Text Book" then it must not be real but the pain and struggles are very real. A Diagnosis is a beautiful thing. Unfortunately there are lots of doctors out there that are "ABLEIST"! This is very Dangerous and will not help people. This happens because some one may not be the "Age" that the text book would say you should be to have what you are feeling. Tests will not be done and something is missed because they will only look at what you "should" be having not what you Could be having. For example EDS, your skin is stretchy and your joints can come out of place. Lets say someone can't fit the steps to be diagnosed because they have something else that they are too young to have by the text book and that makes thee symptoms of EDS not seen. Because of these factors a person could be mis diagnosed and never know what is hurting them because people use the word "NORMAL". This is what I have heard so much in my life and it hurts. When I go to my doctor or the ER and I am having a test I "PRAY" that they come back with Something? The saying "No news is good news" is really bad news. This is because everything in this "normal" world tries to make us to be "normal" that being disabled becomes a bad thing and it is making PWD People With Disabilities Suffer and Disappear and no longer exist. Maybe it is not so bad to be disabled and it is a normal thing because it's REAL! Thank You for your videos. Keep it real.

I thought the same thing that if that person had POTS, it would not have a normal heart rate.

I relate to the whole “it has a name” type of feeling. Funny because I came across your channel a couple months ago after looking at things about hypermobility. Which I always knew I had. Then the Eds video you posted. Telling myself not to start thinking things. The next day I went to my doctor and didn’t bring it up. Just was asking if my ankle injury was worse because I’m hypermobile. And he said yea and eventually ended up asking about EDS. At the time we didn’t know anyone else in my family had it. But found out by the time my next doctor visit was (and funny enough I also had my first random dislocation that actually had no reason behind it) and so I’m newly diagnosed. And I love your videos 😊

I know it seems weird for a doctor to say they haven't seen many cases of EDS, but my primary actually is suspicious of me having it and mentioned he's only see one case of it that had been confirmed. And he's been practicing for almost 30 years, granted I am in a smaller town than what greys anatomy is supposed to be taking place in. But it is possible.

My shoulder barely hurts when it dislocates. It aches after. But most of the time the actually dislocation hurts for the three seconds it takes to move it into place.

Really enjoyed this! I watched the casualty clips a while ago but the others were new to me! & I agree with you that it would still be painful to have a joint put back in even if it’s the hundredth time- mine aren’t too bad if I can put it straight back in myself, but when it’s been out for a while and has to be put back in by someone else (like that girl in the casualty one) you definitely do feel it! & I completely agree that the pain doesn’t get better, it’s just that you learn to live with it 😌

i love this! is there enough movies out there that mention these conditions to do a part two?

Finally going on a joint rehabilitation course to learn how to control my muscles spasms that keep knocking my joints out 💜 I remember in my early days of having this and not being able to put it back myself due to fear of it and I went to the hospital with my shoulder disclocated and they sent me home saying it will only come back out again like last time and it should go back in on it's own; I spent a week with it out of joint (very painful for me) and ended up fainting and being sent back to A&E. They once again said no and then I asked for a new doctor, he was a shoulder specialist and showed me how to handle my shoulder and 3 years later hes suggested this rehab in London in Stanmore! Very excited! 💜💜💜

I relate to @7:20 I was told I had an eating disorder for years, it was horrendous. They caused me to lose more weight by forcing me to eat and making me ill. Luckily, I've been getting treatment for gastroparesis and have been able to gain some weight.

none of my doctors had ever heard of Ehlers-Danlos syndrome, so maybe it's not super uncommon that a doctor had only had a couple cases before

It really helps bring awareness when shows or movies try to portray these conditions. Personally as a filmmaker if I can ever manage to get a feature film off the ground I'd love for all my films to have at least one character with EDS or Gastroparesis in particular.

Yesss girl best video idea ever!! Love it 💖 Also, I had the sudden urge to binge-watching all of these clips yesterday, what a coincidence 😂

a big thing i liked about the last clip was how excited she was to finally have an answer, I was recently finally diagnosed with Gastroparesis (I have both mild pots and type one diabetes) its been such a relief to finally know whats wrong and what i can do...but still sucks hah

its funny you posted this because yesterday i actually looked up all these episodes XD thats great!

Firstly I would like to say a great big thank you finding ur videos on here has helped me so very much to understand this condition I've been diagnosed with also if u look for coronation street its a UK soap that has an actress in it that has heds in the program and also in her real life 😊

Omg love the new intro! Also, i didn’t realize that Grey’s Anatomy portrayed EDS!

With the Casulty programme its also the character is very English and the way the doctors sort it is accurate to it over here. There are specialists we get sent to for more in depth things. We are getting there for EDS

Wow if doctors actually KOWING about EDS or taking the time to hear my symptoms instead of just focusing on one and forgetting the rest is normal, I gotta get a new friggen doctor!

Your explanation of your health issues are so good

With that one girl that said she was “used to it” I wonder if it’s because she’s had it invalidated for so long that she doesn’t react anymore. Like I’m in constant pain but I’ve had so many people tell me ‘you always say your back hurts’ or ‘you always say your knees hurt… everyone has aches and pains’ that I was at the point where it was like…. Oh okay I’m apparently fine than, I just need to stop complaining. I had a few Drs just come right out and say “are you here for pain meds?!” And I’m like no… I’m here because my freakin body hurts and I want to know why!

I think he " hardly encountered it " because he probably dismissed it in so many patients which probably happens irl 💀 ik that happens for some things like POTS for example, vs cardiologists

More recently, the good doctor had an episode with vEDS, season 3 episode 16.

I can relate to the characther so much when she got relived that her condition had a name as I have no idea what is wrong with my body as there is something clearly wrong my legs that hurt all the time

I was just diagnosed with POTS, today after having an EDS diagnosis for years. So strange to see both EDS and POTS portrayed (especially together) on TV. I agree, Gray's Anatomy most aligned with my symptoms.

I was SO relieved to get a diagnosis. I wasn’t diagnosed until I was 19 and I felt crazy before that. The orthopedic doctors were even thinking about child abuse because I was in the orthopedic clinic so often!

The house one is postural orthostatic hypotension disorder

Great video! I look forward to seeing more accurate representation but also more varied representation. I have a mild case and don't get full dislocations and if I have POTS/gastroparesis it's very very mild. But still, I have a tremendous amount of pain. Also some of us use mobility aids like braces, canes, wheelchairs. We use tape. Things like that. It could be less dramatic and more practical too, like not playing sad music and making the patient look pitiful, and more dynamic reactions to treatment. Just some thoughts.

Your new intro is great!❤️

The casualty one is great. But in the UK the A&E doctors don’t hang around and ask questions like that. Like the full cut together scene is 7ish minutes and you’d be so lucky to spend that kinda time with a doctor in an A&E if they weren’t doing a resus call. Chances are if a doctor noticed something funny about your joint movements and got a little bit of history, and they were happy your current complaint I.e dislocated shoulder was back in and slinged, plus your sitting obs were normal:.. they’d send you on your merry way with a referral to some kinda consultant, that you’d wait months for...

Love that Casualty portrayed EDS for us brits 🎉 my sister has EDS and I can say from our side the portrayal was accurate, my sister doesn't always feel pain when putting her shoulder or hip back in place. Sometimes she'll just say FINALLY then go about her business 🤣🤣

Interesting video nice to see pots and eds shown in the media I have never seen either illness shown in the media love you izzy

My stomach issues were one of the reasons I started restricting. I do in fact have anorexia, and anxiety, and more, so I always pushed my physical problems aside, because everyone did it too. I was always underweight growing up though, doctors assumed I had an ED since like seven, when I obviously didn’t.

The answer part was incredible. This is why I am pursuing the diagnosis

I’m always popping my shoulders and hips back in. I have every single symptom on hEDS. But my drs won’t even think about researching me. I am waiting on the genetic clinic referral use to the umpteen surgeries I’ve had on bowels,kidneys, gynecological, hands etc. She’d rather give me opioids for the pain/ symptoms than get to the root of the problem. Health care may be free here in Canada, but finding a family dr is like finding a needle in a haystack. 🤦🏼‍♀️

I went through that with my Gastroparesis!!! I was sent to a doctor that scoped my throat. Woke up and the first thing he said to me was well you’re not a bulimic. I was shocked! I had no clue that’s what the scan was for. Then I had a barium scan. And that proved my Gastroparesis. What hell that was to throw up on my back laying down and being scanned.

I dislocate my shoulders 30-40 times a day, and know that I'm past the point where the pain is debilitating, but it's still definitely there. I could not keep a straight face, especially if it was someone else relocating it for me. Overall, I loved your review!! Best of luck with your knee :)

I don’t really react to pain anymore. It would have to be very high beyond the pain I usually have for me to have a strong reaction to it. So I definitely think this is a reflection of not only individual pain tolerance but also very individual behavioral reactions to pain. As for not feeling any pain, I find that accurate for my shoulders as well. They’ve been dislocating for so long that they slid in and out very easily. The only time it starts hurting is if it’s been dislocating in and out several times in a row, within quick succession. And I feel like that’s just the area around my shoulder joint gets very sore.

I have POTS and I actually am listed as Autonomic failure because I can't control a lot of my body's function. My heart rate is always high. A good day it is 105 and a bad day is above 160; laying down or standing up.

There is technically another episode of Greys Anatomy with a character with EDS. She had already been diagnosed and she was in early labor. It ended up not being much about her though because her older son was having seizures and had to have surgery so... but it’s still cool that they had another character.

Can definitely relate with putting limbs back in place after they’ve dislocated and it not hurting. I put my fingers and shoulders back all the time and I don’t even notice. My jaw on the other hand tend to be a bit sore. It locked once and it hurt to touch. And that’s on having hEDS

TBH I first clicked on this video cause I saw Jaquie and I I thought I would get to see Harlow, but I love watching videos like this, u r so beautiful Izzy I love your hair smile and eyes. I hope you had a good day today

Oh my god I so get that: "It's got a name!" Thing. My doctor once said to me, "Well, you don't WANT to have fibro, do you!" I looked at him, so confused. "If it's the answer to all this pain, I want to know. I need to know WHAT it is." Turns out it's probably EDS. We're starting the diagnostics process. But I'm bedridden with pain, I've never seen anyone else that bad.

lmao I love the cat sitting in the wheelchair in the background

Oh and loving the new intro!!

Woah the fainted and fell on the shoulder and dislocated it happened to me like 2 weeks ago😂

I was diagnosed with pots and have been starting to watch your videos and I just noticed that we are actually sorority sisters! ALAM from Missouri state!!!

I had a coworker to put my shoulder back into place after I popped it out of place just by cleaning a table at my work.

You deserve more subscribers

Hi Izzy, my brother has "Cyst", "Most & Rest" also has "Cyst".

It is also more about standing and the blood pooling etc… he was in a sitting position with his legs up. I’m sure she’s portraying that she felt it but is unresponsive to it because she’s familiar… I can tell when my shoulder is out… but I can usually get it back in and while it hurts…. I probably react very differently than most and go about my day.

7:37 I have been a victim of this and it is horrible.

As a UK rainbow zebra, the Casualty representation was pretty accurate with UK doctors

My EDS is very minor but sometimes my knee dislocates for like a whole flipping day anytime I walk. It's so painful aaa

It drives me crazy how House just always instantly diagnoses people. Like "Ok this patient that's barely been here for 10 minutes who I really haven't done many tests on or any at all at times, has a super rare disease!!!"

lol. No pain during a relocation sounds like heaven. One time I was in health class and I passed out from the pain. Thankfully me teacher knows about my issues so she got me some ice and let me chill for a while. She’s the best.

I keep getting random tachycardia even when I’m just laying down with like 0 reason to it. They scanned my heart and said it’s all fine and that random palpitations is natural for teenagers. But I’m literally laying down doing nothing most of the time or sitting down and I get a heart rate of about 100

i have it but the worst it’s gotten physically wise is joints popping out of place like shoulders and knees, but i haven’t gone through the intense stuff with fainting and having to get tubes and stuff like that ;-;

There's another house episode that has an EDS be patient. It's the wife of the school teacher that got blown up. They mysteriously link hoarding, agoraphobia, and miscarriages to EDS.

The last one hit me so hard

Then the strange thing is watching reality television like Dance Moms (Brooke for sure!) and hearing dancers talk about frequent dislocations while also doing contortions in dances and knowing no one has ever picked up on the glaring symptoms. Like, c’mon girl….no, it isn’t normal to have to know how to just pop joints back in. Are dancers flexible because they’re dancers or are dancers just more prone to have EDS because they are hyper mobile?

I live in the Us and I watched that episode of casualty!

On the BBC show with the dislocated shoulder happening with no pain, that actually is possible lmao I ended up needing two MPFL knee reconstructions for my dislocating knee caps, but it got to a point where when I did Brazilian jiu-jitsu, my kneecap would come out of place during rolls (sparring), I'd tap out, relocate the knee, switch my knee brace from one leg to the other, and keep rolling. At a certain point the ligaments were so stretched out that it really didn't hurt to dislocate and relocate! Got the surgeries (sadly had to quit jiu jitsu... turns out a sport meant to break bones and dislocate joints isn't exactly eds friendly) but my kneecaps haven't dislocated since! Side note - if you're getting the surgery, REQUEST A NERVE BLOCK ENDOCATHETER. Healing time on the left knee without it was 4 months til I felt comfortable on stairs. With the nerve block? 2 weeks. The pain is excrutiating and if your brain doesn't have to feel that pain then it won't perpetuate that sensation the way so many of our brains like to do. No extreme fresh out of surgery pain = much quicker and easier to build back the muscle in physical therapy.

love your new intro...

house seems like its talking about another type of dysautonimia, postural hypotension, its less about the heart rate just mainly the bp

I can pop both my hips in and out of socket at will with little to no pain most days. They just came out of socket so much in gymnastics eventually they slide in and out without pain. Now that I'm older on bad days it does hurt terribly but for many decades it didn't hurt at all.

I was recently diagnosed with POTS. They keep ask me if they have EDS. I said not that I know of. But watching this, it makes me wonder. I dislocate my jaw and pop it back in place a lot.

When my shoulder was popping out of the socket, I loudly screamed in excruciating pain for the few seconds until it rolled back into place. And then I finally had it surgically sewn back on. So I'm not relating to the "you get used to the pain" in this instance.

I think if house had him feel some dizziness after sitting up then passing out and waiting to take the pulse would have helped portray it better.

I remember that Greys Anotomy.....i sadly get excited when something i have shows up on the medical dramas.

I don't know about the House episode, when my POTS was at it's worst I would stand and my HR would go to 160 within 2 secs and then lay down and it would go back down to 60bpm in another 2 seconds so I think it ~could actually be possible to happen like that. But it would be quite an unusual presentation.. and super unlikely for docs to catch it so quickly haha

My family have always said I have EDS, my mum and sister have it, and I had more symptoms of it than either of them. We meet going to doctor saying, we think it's this, we are willing to be proven wrong, can you test this? We even went to a rheumatologist, who said "you have more than enough symptoms to diagnose, but I believe its oversiagnosed, and I only diagnose it if you currently have heart complications." Now at 24, I'm finally back at the rheumatologist. For me it's more knees, I'm lucky that most times my joints pop themselves back, rarely I'll have to pop it back in myself.