I was misdiagnosed [CC] 

people need to stop letting doctors graduate without listening skills.

Okay when people are amazed that their doctor actually gives a shit about them, something's really wrong

Was told by male doctor “Your fatigue/symptoms are because you’re a mom of 2 young children - it’s normal” Female doctor: uhh.. that’s not normal - let’s run some extra tests... I have Lupus and Sjögrens disease.

"I want to receive adequate medical care for symptoms I have and I want to know what's wrong with me so I have the tools to manage it" Big mood.

Omg I hate when doctors refuse to help because there’s no cure. Like... ever hear of symptom management???

If a doctor says no after you specifically asked them to run a test or refer you, ask them to document in the papers specifically that they refused it to you.

me: *lists my symptoms* doctors: have you tried ibuprofen?

“Hypochondria is not the same as faking it” I... honestly really needed to hear that. I have pretty bad hypochondria sometimes (list of diseases/ things I thought I had but do not: heart attack, stroke, mouth cancer, throat cancer, lung cancer, skin cancer, lupus, Lyme disease, malaria... I’m pretty sure there’s more that I’m forgetting, it’s a long list) and it’s a shitty thing to go through. Every single time I think “it’s fine, you’re just freaking out over nothing, you’re fine” but my hypochondriac brain is just like: “BUT WHAT IF THIS IS THE ONE TIME THAT ITS ACTUALLY A SERIOUS PROBLEM AND YOU DIE?!?!?!” and it’s very frightening and frustrating. But people joke about it because they forget that being a hypochondriac causes me a lot of stress. I don’t need to be teased or mocked, I need to be reassured. Idk what the point of this rant is, but thank you for that little clarification because it honestly means a lot to me.

Telling people that they’re faking it is literally medicines biggest copout

“The upswing of every story is ‘and then I met my wife!’” Why am I crying in the club rn

"There's absolutely no evidence of this medication worsening depression or hormonal problems, maybe there's something else bothering you?" - 2 male doctors in a row. "Yes this medication is known to cause depressive thoughts, let's switch you to a different kind." - The one female doctor who actually listened to me without being patronising.

I can't go trampolining because of my scoliosis, it's the most miserable thing There is a parallel world where Jessica and I are trampolining together and it's beautiful

British doctors: No, you can't have a referral. US doctors: You can have a referral, but you can't afford to see the specialist, anyway.

I just got told "it's just because you're a woman" "young women often have a bad time with periods"... This was in relation to extreme pain in my leg... Because I mentioned I flared whenever I had a period... - I was told as a kid I had malformed hips and knees. Yet as a teen it was egnored for womenly stuff... Turns out I have Multiple Sclerosis. Who could have guessed.

This makes me furious and scared because you went deaf, blind in one eye and had paralysed limbs, and doctor's still dismissed the potential cause of your symptoms and made very little effort in figuring them out. I mean, do these things no longer require urgent care and medical attention?

I just had a doctor ask me “why did you come here? There’s no cure” when I first went to the rheumatologist for my Ehlers Danlos

"EDS cant be cured" yeah buddy, neither can rheumatoid arthritis and in this household, we do not devalue anyone's pain!

I hate being misdiagnosed, it’s so confusing...

“None of the staff looked like they had been working over the legal number of hours without break” lmao made me laugh. Sadly that is my life 😂

"I want to know what I have so I can have the tools to manage it" ... THIS IS WHAT I NEED TO SAY FROM NOW ON AT EVERY DOCTORS APPOINTMENT!!! I've had multiple doctors look at me and my symptoms, then dismiss me as 'faking' or 'lying' about pain and/or symptoms I'm having because they didn't want to figure out what was wrong with me

“A little bit floppy” - *Jessica 2019*

“You have something, but I don’t know yet” has been my diagnosis.

I don't know if you did it on purpose but the camera changes are almost perfectly timed with the length of my attention span and my ADHD brain thanks you for making me feel normal enough to focus on something this long

Me: hey I get this extreme pain that comes in spasms throughout the day Doctor, Mother, everyone else: Sounds like you want attention

The medical world in general sucks when it comes to disabilities. That’s at least my opinion.

Telling people they are faking it makes no sense, like your not a child lying about being sick to your mum trying to get a day off school

Chocolate button diagnosis sounds adorable, and sad.

It took years for me to find a doctor that would listen to me. No, this isn't all in my head. My skin feels bruised, I'm exhausted constantly, I'm always nauseous, with a plethora of other symptoms.... I was told so so many times that I was faking the pain or it was all in my head. I finally, after 20 years, just a few months ago found an AMAZING doctor that sat with me for over an hour doing as gentle of an examination all while listening to me tell my story. He put his hands on either side of my face (that was swollen and tender at the time) and looked me in the eyes and said "I believe you. I watched you walk in here. Your gait is off, you're having difficulty with mobility, when I touch you, even slightly, you wince. It is NOT in your head. What you're feeling is real and we are going to help get you better by working together." And then I proceeded to sob uncontrollably for twenty minutes while he patiently sat with me and explained that Fibromyalgia can be debilitating, there is no reason we can't figure out something to lessen the symptoms and make me feel better and feel less pain. I was just so frickin happy someone FINALLY heard me. I'm so sorry anyone else has to go through shit with the healthcare system in any country (I'm in the US) finding a doctor that really listens and hears you and wants to help you is difficult and I truly hope everyone gets the help they so badly need.

I love how all of us who have been ill/disabled since childhood heard "there was a lot of crying" and immediately went "oh yeah same haha-"

"You have something, I just don't know what yet." Fibromyalgia has entered the chat

When you said "hands up if you saw that coming!", I raised my hand so fast I subluxed my shoulder. EDS is super fun!

My current diagnosis: You have something I just don't know what yet, you'll probably be fine. Bonus from a G.P. It's probably just a physical side effects of your anxiety. Saw a different G.P. Turns out my ribs are getting inflamed and I'm gluten intolerant.

"You're faking it" Yeah...because faking depression is s funny

"What's the point? There's no cure for EDS." "Uhh I'm no doctor, but isn't it your job to help me be healthier regardless? Doesn't healthy living encompass _more_ than just freedom from illness? Are we really arguing semantics from your first-year-of-med-school bioethics class right now?"

every time Jessica mentions Claudia i LoSe My BrEaTh WhEnEvEr i SeE yOu

I keep getting "there's no reason for this to happen", followed up by no tests, or one blood test, then told it's all in my head. At the moment I'm having issues with pins and needles in my hands. I think I probably just pulled a nerve or something (aka I think it's just a minor temporary thing, not worried) but doctors keep acting like I've told them I think I'm dying. "There's no reason for that! Just relax!!" Like, I am relaxed, chill-

I have Type 1 diabetes. Imagine a doctor telling me, "Treatment? Why? There's no cure anyway." Unacceptable.

When I was 7 I had a hearing test because I had reported, to my shocked mother, that I could not hear at all from my right side. She had handed me the phone in my right hand and I instinctively switched it to my left hand, so I could listen to the call. My mother asked me why I would switch, so I told her that of course I had to switch, otherwise I would not hear the call. I was seven and my mother had no idea I was deaf. I hadn’t been hiding it from her. I just thought I was normal. I knew that some people had wheel chairs, some people had asthma, and some people needed glasses. I just thought, “Well, this is my thing,” it was my normal since birth. I figured my mother already knew. 🤷🏻‍♀️ The technician who performed the test said that I was faking. My mother, the beloved she-devil, threw an absolute fit and threatened to sue the technician for malpractice. All in all, we walked away without a verified diagnosis, and my mother simply believed me. Thank goodness! Now, why would I fake that????

As someone who currently has a “mystery illness” this hits really close to home. I’ve more or less given up on finding out what I actually have but it would be so nice to have something concrete to act on. Thanks so much for making this, it really helps to have some hope still, and boy howdy do I know that talking about this kind of thing is hard. Stay strong!

It has taken until I was 44 for someone to ask “are you hypermobile?” By now I have arthritis throughout my body and have had so many dislocations, I didn’t think my leg was broken when I broke both my tibia and fibula. I simply put my foot back in place, like all the other times. I recently switched to the Mayo health system, where with one look at my symptoms one doctor immediately knew the problem. Apparently, looking a decade younger than I am was a big indicator.

I was misdiagnosed until my daughter was born with the same condition and all her limbs were dislocated at birth. Not my doctor (much too busy to care) but a student doctor, bless him, got both of us into a specialist before we even left the maternity ward. Year's of misdiagnosis for me but my daughter got surgery in the first two weeks to deepen her joint sockets and 3 months in and out of traction and shes 7 now and I mean clumsy yes all flop and bend but running and jumping with her friends and that's all I can ask for.

I was misdiagnosed! The doctors thought it was stress/allergies turns out it was my kidneys failing! 🤦🏻‍♀️😩

My husband sent me this because I was diagnosed with EDS about 15 years ago, with no real treatment or direction. I am now in my 40s and it feels like my joints are getting much worse. I had 3 seperate injuries in about 6 weeks last fall and the chronic pain is getting terrible. Thank you for speaking out. On a side note you may need a workup for Hashimoto's Thyroiditis if you are missing the last third or your eyebrows. Sorry....I am in that boat too and that is a symptom....

"hey I had a migraine and then I went blind in this eye, what's that about?" had me cracking up. Thank you so much for your sassy humor! I really needed it today. (I was having a really bad day, because the friend with whom I normally talked and finally laughed about our medical stuff is dead.)

Doctors can really suck sometimes. Just a couple weeks ago, I got ill (well, more ill than normal lol) and went to the GP to ask what was up. She checked me over quickly, told me I had a viral infection and to go home and sleep it off. Went home, had a nap, and woke up to a fever of 39c and a 155bpm heart rate. Called 111, went to hospital, got a chest x ray.. and it turns out I had pneumonia. Point is, if you feel like something is seriously wrong, trust yourself and don't always take the first opinion you get. Doctors are people like anyone else and you live in your body 24/7, they only get a 10 minute appointment to look you over.

My doctors told me repeatedly that I can't have hEDS because "it's to rare", although I meet all the diagnostic criteria... it's so frustrating. I have just given up getting a diagnosis...

I normally hate adverts, but when they pop up in Jessica’s adverts I’m pleased because they are supporting her!

If it comforts you any: The healthcare-systems and the doctors in it in other countries aren't much better. I'm from Germany and I had all kinds of allergic and non-allergic symptoms for decades and was tested for numerous problems and everything came up negative, to the point to where doctors said, it's "only" mentally. Until I was rushed to the ER with a severe allergic reaction (even though every allergy-test in the past came up NEGATIVE) and only then did the doctor in the ER find out, that I was histamine-intolerant! Which means, I had too much histamine in my body and it couldn't handle this overload anymore. I'm now on a histamine-low diet (had to say goodbye to a lot of beloved foods 😢) but my symptoms have improved and in 2 months I'll be tested for it to confirm the ER-doctor's suspicion. Depending on which kind of histamine-intolerance I have (one that is due to an overload of histamine-containing foods or the genetic version, due to a malfunctioning enzyme in the intestines) it might heal completely or at least will be managable with a strict histamine-low diet. Btw: Histamine intolerance is not THAT uncommon, but doctors still don't think of it, when their patient(s) show numerous allergic symptoms but all allergy-tests come back negative

So my 10 year old daughter is home sick and this made her laugh and then her jaw partially dislocated. She also has EDS.

Sees title "oof big mood"

Holy... Holy SHIT! These symptoms match my sister almost PERFECTLY!!! We've been trying to figure this out for AGES, with little luck. I'll see to it this is brought up next time she goes to the doctor.

13:33 EXACTLY MY EXPERIENCE WITH ALMOST EVERY SINGLE ONE OF MY 26 DIAGNOSIS!!!! All of my doctors refuse to refer me to someone to get diagnosed because (as my GP said) "a diagnosis wont change anything because there is no cure so having a name for it wont help at all so why bother?" and i was FURIOUS because having a name for it MATTERS VERY VERY MUCH! it might not be curable but you can see treat it!!!!! and once you have the simple bit of paper with the diagnosis written on it, PEOPLE ACTUALLY TAKE YOU SERIOUSLY WHEN YOU SAY YOU'RE IN PAIN!!!!!!! surprise surprise.

I have type 1 diabetes, imagine if my doctor had said “well there’s no cure so why would I treat you?” Complain about that doctor!

That one dislike is ur gp who knew they failed you

Meanwhile people in the US are searching on RU-vid how to do surgery on themselves because they can afford basic healthcare.

I have EDS and when I first found out about it it was like everything suddenly clicked into place. All my doctors agreed that I almost definitely had to however they all refused to make a formal diagnosis because "they don't have the qualifications" (like five doctors are experts on EDS. Total. No one is 'fully qualified' if you look at it like that) and because they didn't like making rare disease diagnoses because its 'bad for their seen as someone who just hands out rare diseases like candy' or something like that (I don't get it either). Doctors are whack.

"Trampolines, fun until they snap your ankles" oml that had me dying

I love you Jess. It’s ok to be sad about the trampoline. It is sad.

As an adult with EDS and a vitamin D3 deficiency... I miss dancing. I'm so broken. I feel you, Jess.

You’re allowed to be upset that you can’t do what others take for granted xo

Jessica: I'm a bit floppy Me when I found out when I had a bit of hypermobility: *actual reaction* MOM IM BENDY

(Not-so) fun fact: Over 80% of cancer patients get misdiagnosed at least once before getting diagnosed with cancer!

My favourite (*cough* least favourite *cough*) response that I've ever gotten from my GP when I brought something to her was "That's weird." YES. I AM AWARE. THAT'S WHY I'M TELLING YOU ABOUT IT. Still unsure of why the thing I was asking about happens to me. That was a couple years ago now.

I need JKF to make a viral TedTalk to inspire more rigorous diagnostic practices in the medical community

"And they can't ball themselves up into a kitchen cupboard while playing hide and go seek.... Madness"

I SCREAMED at "Why? It's not curable!" I had exactly the same thing!! My EDS was misdiagnosed as fibromyalgia for SO long even though it made no sense. They're still dragging their feet about actually writing it down, making it hard to talk about, so yes. Me too.

Being told you're faking is the worst, especially when doctors don't listen. When I was 18 and a senior in high school, my lifelong history of stomach problems came to a head, and I missed the last two months of school. My dad was in the US Air Force, so I went to a military hospital. They didn't have enough doctors, so I was assigned to a physician's assistant instead (this was the same reason that my brother and I were kept in pediatrics until he was 21, which-side note-it's very amusing watching a 6'4" man try to fit on an exam table built for 6 year olds). After running only a few tests, the PA couldn't find anything obviously wrong with me and told me that my stomach problems weren't real and that they were a reaction to being bullied. I was not being bullied. In fact, I had texts and Facebook messages from over a dozen classmates asking where I was and if I was okay. I was, however, overweight, which obviously equalled bullying in the PA's mind. So we went private. We found a gastroenterologist who did a colonoscopy and endoscopy on me, and when I woke up, she told me I had six ulcers, five of which, had they gotten any worse, would have required surgery. I'd had these ulcers for five years, and everyone told me that I was making up all of my symptoms (vomiting, stomach pain, inability to eat ice cream or other foods high in sugar, as well as acidic or spicy foods without throwing up). It took 5 years of ER visits and doctor's appointments for someone to actually believe me and figure out what was wrong. Six and a half years later, I'm pretty much asymptomatic and doing well. Also I can eat ice cream again, which is honestly a miracle in my eyes. Doctors need to stop assuming that kids are faking injuries or illnesses to get out of school. I missed the last two months of my senior year, which was devastating for me because it meant missing out on spending as much time as possible with my best friend before I left for college. Always believe kids when they say something's wrong. Odds are, they're telling the truth.

9:05 "you have something, I just don't know what" is the entire history of my mom's health. She has chronic illnesses up the wazoo and we still barely know anything because nobody seems to care + we can't afford to keep digging and getting new doctors. (I'm from America, if you hadn't guessed.) It's really frustrating and she's of course been accused of faking at every turn.

when I hear people's stories of being misdiagnosed and ignored by doctors for so long, I realise how lucky I am that I managed to find a doctor at 19 who agreed with me and sent me to a rheumatologist and physio and occupation therapy. I'm only 19 and for 10 years I've been in pain with no answer and no way to help it. Getting my diagnosis of hypermobile ehlers danlos syndrome and fibromyalgia has made it just that little bit easier :) hope things are getting better for you Jessica and for others watched and reading :) xx

This whole time I actually thought that she knew she had EDS😂

I was diagnosed with fibromyalgia this year (finally!) and at the time my rheumatologist also said I have hypermobility. He also said it like it was just a thing instead of A Thing. My first thought was oh so that’s why I can do the prayer thing behind my back like Yvie Oddly from RuPauls Drag Race. 😂

I have a RU-vid friend whose daughter has EDS and they were trying to raise money for a special wheelchair because walking on uneven terrain causes dislocation of body parts. She can't walk on sand and really wants to go to the beach and help on her family's farm. I'm so sorry you've had so much pain! I have different health problems and totally understand how humor helps! I love your personality.

I regularly have doctors tell me "Not every symptom has a cause." whenever I tell them I don't want to blindly treat the symptoms.

Simon and Martina and Jessica need to team up and talk about their struggles with EDS and Doctors together

Martina from the channel “Simon and Martina” also has EDS. She is really open with he struggles, both physically and emotionally, as well as how living in a foreign country can effect things. If anyone has EDS, or is just looking for another perspective of it, check them out!

Your body may be weak but you’re one of the strongest willed people I’ve seen :3

According to captions, it's Ellis Tan Loss Syndrome. Poor Ellis!

**sees title** oh is this when EDS comes into play?

Me : gives them a laundry list of related symptoms Doctor : *prescribes antibiotics and painkillers* Me :

Her accent is completely enchanting

jess: "my arm span is longer than my height" me: huh that sounds a bit marfan-y doesn't it jess: "...with marfanoid phenotype" me: omg

I was always told that my juvenile arthritis was just “growing pains” by every doctor we saw, then we moved to a bigger city and I got diagnosed almost immediately.

I have hEDS and always thought that might have been what's going on with you, Im glad you finally have the right diagnosis. Took me 25 years!

The 'what's the point there's no cure' attitude is so toxic. My mom has this attitude, she knows she has Marfan's syndrome, I am still pursuing diagnosis because I need to be monitored. She didn't tell me about it until I was 12. I saw a geneticist and simply was not believed, I was so angry, that guy is lucky I am a pacifist, he treated me like I didn't deserve his time or respect, rushed out early. Treated like a liar because it was difficult for them to find decades old medical records. Talked to me as though he saw 2 people with this every day for 40 years, and I didn't 'look like I had it' (I was gobsmacked). I walked out crying. I can hardly describe how I felt besides 'worthless' and 'freak'. My bf and I holed up in the corner of a shop & I ate a hotdog through tears. Even if they can do nothing (they can do more than nothing, and if there is an emergency it is very important they know I have this), I want to know what is going on. I want to know the outlook. I want to know what I can do to be healthy. I have been sifting through obituaries the past few days (stuck in bed with respiratory illness) making my family health history, finding birthdays of people I have never met, painfully, enlighteningly, and I have already run out of pages because I have a big family. I had to find the form online, doing my own research, on the Marfan Syndrome Foundation website. Nobody told me to collect it on my own or how to do it. I've had these papers for years now, it was just too overwhelming to do it. The grief of losing healthy family members after seeing them whither swiftly away. My uncle smiling and driving go-karts in the spring and too weak to watch the movie he was waiting to see for years by July. He went to bed while we watched it and then we went home. No more grilled potatoes on Thanksgiving. The confusing pain of the grandmother I have never known. I have to do it for my sister. This cannot happen to her out of the blue. I cannot stand to see her in pain. I think I will mail that man a letter telling him he misdiagnosed me because he didn't care whether I lived or died, just did not bother to question his simple opinion, and include pictures of my family.

I got diagnosed in the year of our lord, 2019, with female hysteria. Despite already being diagnosed with Ehlers-Danlos Syndrome (which took over 7 years to diagnose, which meant 7 years until they'd give me any pain relief) and other associated health problems, but he turned around and said he doesn't believe me, and thus the hysteria diagnosis. Soooo here we are, 6 months later suddenly going blind with migraines, frequent near fainting, a new doctor, and a "something is wrong, we need to investigate further, so we're sending you to neurology and cardiology." When I got accused of just being hysterical, I was having to try so hard to fight back tears. He agreed to a king of hearts monitor, then didn't tell me it picked up irregularities. I've refused to see him since. With my EDS diagnosis though, there's a lot of the symptoms I don't have, like I never have the scarring problem, but because they don't expect you to have every symptom because of the new diagnostic criteria, I actually got taken seriously. However I had to see a geneticist to get the official EDS label. Getting the label does hugely change the access to things available. I got access to orthotics (to stabilise everything from the hips down) and an OT for hand and wrist braces, I got a home assessment where they raised my sofa up to minimise hip strain, I got new bathroom taps, a perching stool for the kitchen, a special chopping board etc. It's been incredible!

In America both a rhumetologist and an orthopedic specialist told me "they don't diagnose that" in refrence to EDS. So many people cannot afford to go private to get medical care.

My best friend has EDS and it is absolutely INFURIATING how typical it is for folks with EDS to go years without a diagnosis and to be so utterly neglected. They recently got Smart Crutches, which were designed with with EDS in mind, and they’ve been so so so happy with them.

Despite not having paralyzed my arms this is basically the story of my life, and you just gave me a huge epiphany about why I had problems with trampolines. I’m happy you got your diagnosis. It is a terrible pain in the ass to find good doctors to help you, I’m also happy you found someone that can helps you! Zebra hugs ❤️

Misdiagnosis always feels like a betrayal, by both drs and, in a way, of/to yourself

As a physical therapist, nothing makes me happier than when my patients can advocate for themselves and get the care they need and deserve. Knowledge is power.

well, welcome to the dazzle, Jessica. It took me 32 years to be diagnosed, despite showing symptoms since early childhood as well. So many doctors missed it and my rheumatologist laughed at me and misdiagnosed Fibromyalgia...I recommend seeing a geneticist to confirm the type. Apart from that, the online community is very helpful and resourceful and I'm sure they can point you to NHS doctors who can help treat the symptoms. Sending gentle hugs and lots of strength from the Netherlands!

"And this is NOT me advocating for the privatisation of the NHS, I could not think of anything worse! This is me advocating for the government doing their job, and allocating the NHS the resources they both need and deserve." It's three years after you posted this video, and I'm in Australia, but you probably still heard me cheer.

Jessica : "I have EDS, who saw that coming ?" Me : *raising my hand the Hermione Granger way* Seriously, I'm no doctor, but following two people with EDS (and different ones) on youtube, I thought your symptoms matched perfectly when I first started watching your videos ages ago.... Now somehow it makes sense ! ^^ Having a good doctor and health care around you is the best. Always trust your gut when you see something is out of the ordinary (especially when your ordinary is already being sick - thank you chronic disease). Story time : I have UC. When you get gastroenteritis, it makes things really bad. One night in 2015, I started getting pretty sick. I thought "I must have gastroenteritis, I'll just go to bed and call the doctor in the morning" cause all I wanted to do was sleep because of the exhaustion. I did. Not the way I planned. I woke up at 5 am, paralized in my bed. I reached for my phone and called directly for an ambulance. I knew something was wrong. I felt really bad. There is no words to explain the feeling I had. Turns out, I was doing a sepsis. After two days in the emergency room, fighting against it... I died. My heart stopped the fight. They tried to reanimate me. My heart didn't want to do his job anymore. They linked me to a machine to do the work of my heart : pumping my blood to my organs so my body would still work. Then, they called my parents : "your daughter is going to die by the end of the day, if you want to see her one last time, you have to come now". I was 21. Guess what, I survived. I got lucky. A miracle, they said. And I learned my lesson : when things are not normal, not making sense, I call the emergency number right away. Jessica, I'm so glad you finally got a proper diagnosis. I'm so glad you have Claudia in your life. I'm so glad you chose humor (and the vintage sass !) but also a good cry once in a while is perfectly fine. We keep fighting. Our own way. Always. Cause I ain't dying today. Nor tomorrow. But if I do, I want you to know, whoever is reading this : you're amazing, taking care of you is the right thing to do. Reach for help. Get good people around you. Cry a lot. Smile a lot. Laugh a lot. Enjoy the good and the bad. Embrace life. It's yours and you've only got one.

The fact that NHS doctors are so unwilling to even refer people is horrible and so common ugh

You're such a lovely person. I love watching your videos. I cried when you started tearing up while explaining some of what you've been through. I'm so sorry that you've been treated poorly in the healthcare system and so glad that you've finally found a doctor who takes your condition seriously and is giving you the diagnostic care and treatment you deserve. And bless Claudia for coming into your life and making it better.

I am a doctor, got hospitalized due to complications of an undiagnosed crohns disease, no one knew what was wrong with me at the time and filled me with antibiotics, when by my test results it was clear it was something autoimmune. On the 4th day of antibiotics, I had to severly argue with my doctor, using myy OWN medical knowledge, because I was getting worse and worse by the hour, and knew that the right course of actions was corticoids and not antibiotics. Thank God I convinced him, otherwise I woudnt have survived. After I was discharged, I went on, and "diagnosed" myself with crohns disease, because I knew no one would do it or belive me. Later on, I found a doctor who actually officially diagnosed me and now I am happily taking immunomodulators. Also, am being investigated for POTS and hEDS. Dear lord

My EDS was "diagnosed" as growing pains for years so I feel your pain (probably literally)

Since you can’t do trampolines i feel like you deserve a zero gravity experience! It’s low impact right? I feel like the only issue might be the cute dresses...might wanna wear cute pants instead.

My first thought was EDS. I was only diagnosed when I was 40. I’m 44 now. Spent my childhood and teen years constantly falling down/tripping over my feet bc my ankles were so loose and wobbly. I have scoliosis, arthritis in my back and shoulders, bursitis in my hip.. all bc of how my joints function (or dont)... glad they finally figured it out.

I totally get your trampoline angst, I was relatively healthy as a child and loved trampolines and always wanted one. Then SURPRISE as a teenager I got my own.... after being diagnosed with a chronic illness. So I had a lovely big giant trampoline in my backyard that I couldn’t really enjoy because I could t jump on it for very long and then the slight incline to get back into the house was excruciatingly exhausting. Eventually we said goodbye to our sadly underused trampoline because insurance companies HATE THEM.