Disease Begins Before Diagnosis | Brianne Benness | TEDxDeerfield

Most people who are diagnosed with a chronic illness go through a totally predictable diagnostic process but we never see this process represented accurately in the media. Misconceptions about the process can put undue pressure on doctors to diagnose quickly, isolate patients from their healthy peers, and prevent patients from seeking life-altering accommodations as soon as they are needed. When they first become symptomatic, many patients head to their primary care physician expecting the kind of rapid diagnosis we see on TV shows like House. Patients (and their friends and families) often expect that diagnostic testing will quickly reveal the cause of their symptoms and suggest a clear path to treatment. Despite the prevalence of stories like these in television and film, they are not at all typical for patients who are eventually diagnosed with autoimmune diseases, genetic disorders like Ehlers-Danlos Syndrome, and sometimes- controversial clinical diagnoses like fibromyalgia, ME/CFS, and Lyme Disease. Statistics vary by individual condition, but most patients wait at least five years for a diagnosis. People in this stage are often classified as problem patients, the worried well, hypochondriacs, malingerers, and even drug seekers. People in this stage feel isolated and crazy and scared because their bodies are failing them but nobody knows why. Their mental health is often seriously impacted and they clog up emergency rooms that are ill equipped to handle chronic issues. People in this stage have little support from friends, family and employers because many members of the general public don't know that you can be sick for years without a diagnosis. They watch House or Grey's Anatomy or ER and they believe somehow that diagnosis is instantaneous if you have a good doctor and a real illness. Everyone with a diagnosed chronic condition has lived through this diagnostic limbo, and almost none of them knew that it was a totally normal part of the diagnostic process. Most people don't find out how common it is until they've been diagnosed themselves. Until they've connected with a support network and realized that other people went through that same period of fear and uncertainty. My talk will explain the diagnostic process in more detail with a few specific stories, outline the support gaps that are caused by delayed diagnosis, and offer a few specific ways to support friends, family, and colleagues who are navigating diagnosis right now. Brianne Benness is a writer, editor, and the host of No End In Sight, a podcast about life with chronic illness. She also co-founded a monthly storytelling event in Toronto called Stories We Don’t Tell, which recently published its first anthology of personal stories about tough topics. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx

[@ry.butterfly]

"I felt like I was losing myself" Scuse me while I go cry over how impactful this sentence was. I feel the exact same way

[@Caleb-il7om]

Going on 7 years undiagnosed...one of the few videos on the internet to make me cry. I push too hard, all the time, and all I get are suggestions from people. It's the loneliest place in the world to be (on my experience anyway)

[@cillamoorat3828]

Hello Caleb. Sorry for your experience 😢.

[@lyubaflanagan569]

I am in the same situation and understand you 100%. Wishing you to recover soon.

[@redflag4255]

A decade for me. lonely is an understatement. Hang in there

[@Amped4Life]

@Caleb - I understand. Hang tough. I know how you feel.

[@Caleb-il7om]

@@Amped4Life It pains me to know other people experience similar things but at least we're not alone right? :(

[@stuffwelike7184]

Im pouring tears right now. Im so tired of hearing "well its just chronic pian."

[@max_x]

This has been my life for years, it's horrible how many of us there are just sitting in limbo not knowing what is wrong with us

[@ericmontgomery7339]

Horrible. The doctors want to go straight to anxiety and depression. Turns out that watching your life slowly crumble in front of you can be a bit depressing. I wish you all the best.

[@Caleb-il7om]

@@ericmontgomery7339 I'm in the same boat brother, stay strong, we can do this

[@Doughkat777]

I honestly don’t even care what my diagnosis is at this point. I just want help managing my symptoms so I can function

[@imapandaperson]

Thank you --- the medical gaslighting is so real, it can make you feel like you're nuts and it's somehow your fault you're going through this. The number of doctors that just can't be bothered, dismiss you, and act like you're wasting THEIR time...it's astounding. I wish doctors could just say "I'm sorry, I don't know what's wrong, but i'm going to help you find out." What is so wrong with admitting you don't know? Your patient is already sick, why make them now feel sick and crazy just because you can't admit you don't know what's wrong?

[@michaelobrien5891]

Their pride and arrogance.

[@theOlLineRebel]

'I wish doctors could just say "I'm sorry, I don't know what's wrong, but i'm going to help you find out."' - EXACTLY. Except, the word should be "WOULD", as opposed to "COULD". Emphasis on the last phrase - HELP YOU FIND OUT. Not just exam appointment time, and a few (standard) tests for the (usual) ideas. But trying harder outside the appointment to research and see if anything matches. I fear it's not just RARE diseases, but common diseases that don't "fit" the most popular symptoms and presentation.

[@pulkitgupta7453]

because of their dogshit egos

[@TheStoniak]

Spot on!

[@YTStoleMyUsername]

​@@theOlLineRebelYes. Not all bodies go "by the book" and tests are never 100% accurate. You could certainly still have one of the "common diseases" they ruled out and go undiagnosed for years until an astute doctor puts the pieces together. I've heard many stories like this.

[@emjdigresmj4451]

By the time I got a diagnosis (years after the trigger!), I broke down in tears. My doctor was confused, and kept telling me 'it isn't that bad' ... I wasn't crying because it was bad news. I was crying because I finally had (the beginning of) an aswer.

[@hayleeedwards3072]

Yep!!!

[@hayleeedwards3072]

What hurts me the most is I didn’t have a promising childhood, so by the time I hit my mid 20’s I was incredibly eager to become something & make myself proud. I was working my tooshie off & flying up the corporate ladder, so in love with my life. Then 1 morning I woke up to a sickness that took it all away in an instant & left me bedridden for years. 10 years later & I still can’t work. THATS what hurts me.

[@NathalieOfficial]

I was diagnosed after 13 years of being called crazy. I have Hashimoto and Endometriosis. This video truly made me cry…I remembered the endless times I went to the doctor, the endless times I had to stop in the middle of the street because I was in excruciating pain being certain that I would pass out from it anytime. I too had antidepressants given to me by a general doctor, not a psychologist. I too was told it is all due to stress. Now that I’ve been diagnosed this is only the beginning as so far the treatments haven’t worked. I’m now on a strict diet to see if that will work. It’s exhausting and debilitating. Good luck to everyone who is also suffering.

[@zimbofox5412]

I got diagnosed with Ankylosing Spondylitis at 24 after nearly 10 years of chronic back pain. No one listened or believed me, and because of this I abused anti inflammatorys for a solid 10 years almost destroying my kidneys. If this sounds familiar please get help, keep pushing, never give up.

[@les2150]

I am living what you’re talking about. After being in hospital for a week and having every test, they found nothing and told me it was in my head. Was sent to mental hospital where I got worse and down to 77 lbs. they told me I was refusing to eat and delusional. I had so much pain, dizziness and difficult breathing I couldn’t eat or stand up straight and I looked sick, but they wouldn’t believe me. I still have symptoms almost 3 years later but milder and I can eat and walk better. Still looking for diagnosis. It’s been a horrible nightmare and, yes, I still hear “it’s all in your head” from family and friends. I have no history of mental health issues, never been on psych meds, never even been in counseling. I had a perfectly normal productive life before I got sick. YES, I want to be believed!! The psychiatrists were mean, rolled their eyes at me, and acted like I was inconveniencing them because I couldn’t eat. I still have trauma over the way I was treated by the doctors.

[@kron277]

So sorry you went through this. I believe you!

[@HighFiveFriend]

I'm sorry and I believe you. Your story is VERY similar to Ally Hilfiger who was finally diagnosed with Lyme. You should read her book "Bite Me" or look her up here on YT. Dr. Horowitz has a quick online quiz to help you screen for tick-bourne illness. lmk what you think :)

[@celestekaminska8797]

Don't take mental health dope you will be treated worse than a criminal. Don't end up homeless. You will be treated worse than a criminal. Don't take hovt welfare trap benefits. You will be treated worse than a criminal in usa.

[@friendrus3147]

It took me 24 years to find out I have Stiff Person Syndrome. I was careful not to complain too much but was still considered anxious. Who wouldn't be anxious knowing their body is failing and they don't know why?

[@Litigation-Queen]

I’m scared of losing my job and everyone in my life…in fact I’d rather die than being a burden and suffer in silence every day

[@lauraray611]

I can relate to that feeling.

[@tonyhylt]

Wow this is eye opening. It seems like doctors of all people wouldn't label someone as a hypochondriac because of how often they do correctly diagnose something. That's a problem to pay all that money and have to fight to get tests done

[@stuffwelike7184]

Im so tired of "why don't you go to the doctor" I have several and its always the same.

[@dotcassilles1488]

My health challenges started before puberty, got worse when puberty hit and I got my first diagnosis at the age of 21 after being unable to walk for 3 months due to a back injury... I'm now 41 years old and still struggling to find doctors and specialists who will listen and help me to get better. I am never without pain. I experience chronic pain all over my body, chronic fatigue syndrome and a rare type of bipolar disorder as a result of how doctors discounted my symptoms. I've been vomiting every day for almost 2 years and arguing with my doctor about going to the gastro doctor since the vomiting began. On top of the way health professionals treat me I also have family who don't believe anything is wrong. I'm just being dramatic, exaggerating my symptoms or being lazy according to my family. Having a diagnosis doesn't change people's attitudes to you. It's only recently that I have had anyone say "I believe you". I truly believe that there are three life changing words that people need to say when you tell them about symptoms you are experiencing. Hearing "I believe you" was so life changing. Most of the people who say "I love you" to me regularly don't realise that by not saying I believe you they just make it worse. I hope everyone has one person to sat to them "I believe you" and then actually try to help. Blessings from South Eastern Australia, Dot

[@scifirocks]

I have a currently undiagnosed neurological condition which means I can't work and have also had a history of severe depression and Ehlers-Danlos Syndrome. There's also little financial support. One of the things that hurts the most is the lack of understanding, sympathy or empathy from family. My sister had a small malignant melanoma which was found very early, treated surgically and eradicated within a few months of even being noticed. Our family rallied around her and gave her lots of attention while ignoring me. She also had her mortgage paid off due to an insurance payout. I've often found wishing I could swap these chronic illnesses for an easily treatable cancer like hers, which makes me feel guilty.

[@umaimauneeb]

same here, somethng like cancer are treatable, atleast u know whts wrong, but people like us are wondering whts wrong and endup taking psychatric medicines

[@emma5092]

It took me 15 years to receive a diagnosis for Ehlers-Danlos, this was perfectly articulated. Thank you ❤️

[@bitter2sweet]

Same for me. I love this 😀

[@0xEmmy]

Why am I not surprised that the top comment is about EDS?

[@odin4306]

@@0xEmmy I think a lot more people have EDS than we previously thought. Or at least it seems that way online. I have severe EDS, I'm not saying this in a judgmental way. I'm glad people are finally getting help.

[@mediocreatbest9203]

I feel so seen. I was diagnosed with thyroid cancer (the "good cancer" if you will), and I also identified deeply to that period of uncertainty before the diagnosis. After the diagnosis, I finally felt validated and could attach my suffering to a label. It was no longer an abstract worry, it was "thyroid cancer". And even right after diagnosis when I was showered with attention and people around me believe my story, I still felt guilty because my worry & symtoms was still there even though my illness was very tame. I didn't think I deserved to complain. It felt like I was overreacting and playing a victim as "the cancer patient", when I knew other patients suffered much more than me. And even long after diagnosis, even when my type of cancer has a clear treatment plan, I'm still caught off guard with the symptoms that my body experiences. I'm expecting an "easy" disease, but instead I live in chronic condition. I thought I only need to take daily medicine, but I didn't expect that I still have to handle some symptoms daily. I still have to have a lot of doctor's appointments. And my routine scan that I take every 6 months still cause me great despair (mainly because of the awful side effect of the pre-scan preparation, and how nobody near me truly understands how massive this affects me). I know what to expect, and I still struggle to piece together my own life. I know that it would end someday (I hope) because I don't have the agressive cancer. But the day-to-day moment of excruciating pain and self-isolation feels like eternity, and I find it hard to believe that it will get better. I feel like I need to push every atoms of my body just to reach tomorrow. I know it'll get better, but nobody seems unable to provide me a clear answer when I ask them "when?". Anyway, my heart goes to everyone who is still trying to get their diagnosis to this day. And also to those who already receive a diagnosis but are still unsure about the future. I see you. I hope it'll be better. I hope you'll find your answer. And thank you so much for this talk, thank you for representing our voices.

[@burnswhenpees]

Almost 46, and been unwell with a plethora of symptoms my entire life. Any chance at a normal life, or happiness, is long gone. Out of options, and hopeless at this point. Merely typing this as a way of coping. I pray to pass in my sleep every night, and curse God upon waking each morning. Truly sorry for everyone else with similar circumstances.

[@mumsie8578]

8 years of actively searching for a diagnosis... Finally they looked at my toes and told me I have psoriatic arthritis. They should have looked at them twenty years ago. It's such a lonely time. Part of me is relieved to have a name to put on it, now I have to get to know this disease

[@McHoneyBunnyLPs]

The problem starts when you don't have the energy to visiting docs anymore. I'm diagnosed with ME/CFS but still i hope it's something else. Im on the point where it's too exhausting to visit doctors. It's a 6 year diagnose journey and 4 of them not able to work (I'm 27 at the moment). It's really hard. And if you look in the comments you find lots of people with this kind of fate. It's sick.

[@breannapiscitelli3941]

I would love to write to her about my story. I am legit, crying watching this video. I’ve never felt so alone in my life before I got diagnosed. I also went through years of suffering, and being told I was crazy. I was put on so many different medication’s, and no one took me serious until my health took a turn for the absolute worst. It got so severe that right now the only thing that they can give me as a diagnosis besides all the other diagnoses I have is mixed connective tissue disease. I have a whole list of other diagnoses that mostly have appeared in the past two years but for years, I wouldn’t even let myself admit. There was anything wrong, and I pushed my body physically and mentally to the absolute limit. This was so validating. I still feel like no one knows how I feel but at the same time I think that’s more because when I was not diagnosed, everyone treated me like I was absolutely crazy. When I finally started getting very sick and I started getting a lot of very bizarre test results back. Everybody started acting completely different around me but now it’s more so of a depressing feeling. My entire life I’ve just wanted to be happy and live a normal life and I feel like it’s been a struggle since day one. I’m still in the process of finally figuring out everything that’s going on, but it feels like the list it’s just never ending. I was diagnosed with Hashimoto’s when I was 13 and I’ve struggled with learning disabilities, as well as ADHD, and possible autism since a child. I’ve had issues with chronic gastrointestinal issues. I literally don’t even know how to describe it because I’ve been through a lot of stuff with the Gastro, and it was very traumatizing. I got through colitis Difícil and it took me over eight months. I had a colonoscopy they found a polyp in my colon. And basically they tested me for Crohn’s and ulcerative colitis but both came back negative so they completely disregarded me and told me they would see me again in five years. I just had a rheumatologist appointment yesterday and my blood test came back positive for Crohn’s disease. I get tests like this constantly and it’s so frustrating having to go through all of these tests that feel like they’re all contradicting each other. Like there was another time where I went to the hospital because I had severe abdominal pain while I had CDF and I thought I had a bowel obstruction and it turned out. I had a ton of cysts on my ovaries. I genuinely think I actually have a genetic disorder called EDS. I think I possibly have the vascular kind but I don’t want to even bring it up unless it’s some thing that is for sure. We haven’t gotten to genetic testing yet but it was brought up because my family has a history of EDS I guess the most frustrating part is I was told my entire life that if I try hard enough, I would be happy and there was a point where I did and then after a while I gave up and then I’ve been trying again, but it seems to always make things a lot harder. It’s absolutely crazy how we are basically talk to ignore clear signs of our bodies and distress from a young age. That’s really what I blame all of my severe health issues from at this point. I’ve never really been able to identify why I’m in pain or what is in pain just that it hurts. I think the thing that has been very hard for me to move past is what you said. The fact that there is no cure, and that it is a toll on upkeep of medication, and just life management. I am about to be 29 years old, and I have actually been struggling, for I would say no about seven years, but I’m finally actually qualifying to get the help that I need because of the medical part. I don’t even think I’m going to have to get a lawyer, but I never wanted it to come to this in the first place. I never wanted to have to struggle so hard just to live. I want to be able to do things I did when I was younger that were fun. I want to be able to ride roller coasters and Run and pick up my daughter among other things like leaving the house. All of these things are incredibly hard when you have this many issues. And when you don’t have a diagnosis, everyone just thinks you’re crazy and they try to force you to go into the situation’s with no help. I genuinely feel for anybody. Who’s had to feel like that. I genuinely also believe that this is why so many people have anxiety. I obviously am diagnosed with anxiety and I am on a lot of medication to try to treat it because of my health problems. But I know I’m not the only one with that. My aunt is very honest about her health problems and it’s the only reason I’ve even found out we’ve had genetic issues on that side, at least. My dad refuses to talk about anything and basically refuses to go to a doctor. His dad passed at 55 from complications, leading from diabetes, being overweight, smoking, and lung cancer. He had an array of health problems that were diagnosed, and he had another array of health problems that were most likely undiagnosed.

[@dotcassilles1488]

Oh dear, now I just had to write you a comment.... Your life story is much like mine. The general practice doctor I see suspects I have Crohn's disease, EDS and possibly ADHD. I've been sick for many years and have a list of diagnoses that don't fully explain why I'm so sick. My family doesn't believe there is anything wrong except I'm avoiding work and being lazy. They don't see me being sick but I have spent the last two years vomiting every day and trying to convince the doctor to send me to a gastro doctor. Because of how sick I am I had to stop taking pain medicines and psychiatric medicine. I would normally take them to keep my chronic pain, chronic fatigue syndrome and rapid cycling bipolar spectrum disorder. I simply couldn't take the tablets without them coming back up. I've been arguing with my doctor for 2 years to send me to the gastro. I had to save the money up to pay for a private consultation (I'm on a disability pension) and I finally saw the gastro doctor yesterday. He was rude and rushed through the appointment, ran more than 30 minutes late and wouldn't listen to the details of why I needed an urgent investigation to find out what is wrong. He spent 10 minutes asking me questions and feeling my tummy before saying he would refer me to the public system (a more than 2 year wait) . I'm no closer to getting help.... He didn't want a full history or list of symptoms or to know about my strong family history of Crohn's disease and gastro problems. It felt like he had made up his mind before I got there that I wasn't worth his time because I have to save up to pay to see him. It was like his body was there, he was parroting information that didn't suit my circumstances and his mind was elsewhere. Maybe he was having a bad day but he could at least have listened. I'm thinking of writing him a letter to complain about his treatment of me, to explain the whole situation. I'm also thinking I might need to find a different gastro who will listen if he won't. It's sad how no matter where we live in the world, we all go through the exact same horrible situation and experience the same treatment from Doctors and specialists Blessings from South Eastern Australia, Dot

[@allytee3427]

Thank you for sharing this video. It made me cry so many times, just having someone who gets it is so validating and powerful. The past two years I have had a chronic illness. It’s changed my life. Many doctors don’t understand this illness or know anything about it, but there are thousands of others suffering with it in silence and getting misdiagnosed. It’s called chronic UTI. It is so painful and causes bladder wall damage, kidney damage and daily pain.

[@73spijker]

Brianne, you're doing such good things in raising awareness for the ones who suffer from a chronic illness. One day I will translate your TEDx Talk in Dutch so as many peopleas possible in my country can hear/read your sensible words.

[@Kadebody]

life is very difficult with chronic illness of any kind!! You definitely mourn your old healthy self. And if you've been sick most of your life, you desire health! 🙏

[@downshiftingpath]

It took 2 yrs in and out of hospital to be diagnosed with a very rare neurological condition. Thank you for talking about this.🦋

[@ThatOneEpikLuca]

What were you diagnosed with

[@Shindai]

I remember when I was about 22, I walked down the hill to the shop and back home, and told my gf I feel weirdly drained, like I'd been on my feet all day. She just told me I was unfit. But I was training in karate, ninjutsu, wing chun, and tai chi four days a week, I was in really good shape in terms of fitness. But that day.. even before then, I walked to the leisure centre and back home, a walk of about a mile, and I collapsed on the sofa unable to move for an hour. Things like that happened from time to time, even though I was in good shape and able to train. Then when I was 25, I helped my brother move house, and it ruined me. Within a week I needed a walking stick to walk. About a year after that I was diagnosed with fibromyalgia. I only pursued it because I'd recently met a woman through work who has fibromyalgia and she told me my symptoms sound a lot like hers when she has a bad flare. I might have gone to the dr years before but everyone around me shrugged it off as a bad day or I'm just unfit coz I weighed 102kg.

[@Vulvex]

Took me 4 years before I got my Crohn's disease diagnosis... Finally found a doctor who listened and believed my symptoms were real.

[@seicatsu]

I hope you are doing well now

[@TheRandomTubeTV]

I was only able to get diagnosed with Dermatomyositis because I went to a good dermatologist who is very insightful and had a sneaking suspicion of my condition being that even though it's rare. He ran a skin biopsy on some samples and it confirmed what he was thinking for the first couple months, I couldn't be happier on that.

[@aimeemayer9309]

I’ve been seeing a rheumatologist who has basically been dismissing my concerns, but a rash I have has finally had him mentioning this and cutaneous lupus. Waiting for the next skin rash flare to get a biopsy to see which, if either.

[@stuffwelike7184]

Yep my doctor keeps telling me i have depression.

[@REmm-rf8fl]

I couldn’t watch this without pulsing with rage.

[@bert422]

I'm in this situation right now. It is 3 years that I can't leave my home due to strong pain and strong inflammation in my legs. Can't sleep because of the pain, cant stay sit, can't do anything. The best years of my 20s are passing by but the worst part is that I really feel isolated, even not trusted by family and friends,..

[@ericmontgomery7339]

You aren't alone. I've been going through it for 10 years. It has gotten to the point that I fear losing my career that I love. I'm finally getting serious about getting help. I've spent the last couple of months with an endocrinologist, but that has offered no answers. Hang in there.

[@redrooster3420]

I've been housebound for the last 6 years due to my severe chronic illness symptoms as well. I completely understand how isolating and scary it is. You're not alone and this is not your fault. If you want to see others' stories about dealing with chronic illness too, I recommend following the twitter account of the Tedx speaker here, Brianne Benness, if you'd like. She tends to share other chronically ill people's tweets there and it helps me feel less alone. Wishing you so much gentleness and care.

[@bert422]

@@redrooster3420 @Eric Montgomery Thank you so much for taking the time to answer me and for your kind words. I wish you all the best as well from the bottom of my hearth

[@TheRandomTubeTV]

Have you tried to get a rhumatologist?

[@AlixMay]

Google lipedema if you haven’t. It’s a super underdiagnosed leg pain issue.

[@rebeccahesser8057]

I have been called all of those things drug seeker, hypochondriac, attention seeker, depressed, anxious. It’s been 30 years things are still getting worse and lumped into fibromyalgia. I don’t believe it. Something else is wrong. It’s just getting answers because after 20 years I’m about to say you’re right it’s all in my head. Because now the pain, insomnia, and unconcerned people is to the point of frustration that I’m about to just give and hope my body eventually give up.

[@ElizabethDohertyThomas]

100% accurate! Thanks for putting together this nuanced, educational talk! You also reminded me of things I'd forgotten about, like the first week of my MCAS diagnosis, I've never cried so much in my life, as I went through the "I'm NOT CRAZy after all" with "OMG science can prove this is real" along side the "THIS IS SO HARD TO MANAGE INSTEAD OF IGNORE."

[@adinashenry5474]

That is not true severe ME/CFS is life threatening. I know of a lot of people who have died from this, not just from suicide but because of the progression of their illness to the point where they can no longer feed themselves etc and eventually they can die. Also being a severe sufferer myself, I also know that not being able to do any physical activity is having horrendous effect on my health. Weight gain. muscle weakness etc

[@susanm5807]

Overall, well said. I feel the same grief of losing my life and who I “was” plus note live with the unreliability of my body. I’m currently diagnosed with: IBS, hEDS, chronic pain, small fiber neuralgia, peripheral neuralgia, sciatica, osteopenia, fibromyalgia osteoarthritis, eczema, rosacea, esophageal reflux, and I’ll stop there as it’s late/very early a.m. and I’m brain foggy so I am unable to think well. The comment about ME/CFS is correct but I didn’t pick up that you were saying it wasn’t serious/possibly fatal. Maybe it was an example of her feeling of others not hearing her and being sensitive to it?

[@umaimauneeb]

same here, how do u manage it?

[@rhondamarks8044]

My 22 year old daughter diagnosed with pots has been bed bound causing anxiety and depression. With her first flare cardiologist said in hospital it was anxiety. 2ND Inpatient hospitalization wonderful cardiologist treated her for a while until she called her pvcs hypochondriac pvcs when heart rate was at 160 laying down.

[@oaklengallagher-armstrong7164]

Similar story with me. I'm 17 and have been struggling with POTS-like symptoms for just about a year now. My first flare, my mother told me to stop pretending even when my heart rate was 130 bpm+ while sitting in the ER waiting room. That number didn't drop below triple digits until 4 hours later, and it had likely been that high for several hours before my admission. Between the ER docs and the following cardiology referral, we did 2 event monitors, maybe half a dozen EKGs, every blood test under the sun, an echocardiogram, and a chest x-ray, all for "oh, all we've found is the tachycardia. Weird that sedation doesn't affect it 🤷‍♂️🤷‍♂️." Since then, I've now experienced both fainting and seizures in clusters of between 2 and 5 in one attack, my family still doesn't think I need a cane to walk (because balance issues), I've had to drop school completely, I'm stepping away from working, and dancing has become so difficult that it's hardly fun anymore. Diagnosis limbo absolutely sucks, especially without a lot of much-needed support.

[@vikhashiniananth7601]

my disautonomia (including pots) testing is this week…. i pass out almost every day. it’s not fun at all 😕

[@sticky9129]

@@vikhashiniananth7601 How was it?

[@sticky9129]

I have severe pots also. I ended up pacemaker dependent after a sinus node ablation. My rate was over 160 daily-220

[@vikhashiniananth7601]

@@sticky9129 they sent the results back untranslated to my neurologist- we have to wait longer also the sweat test was literal torture- i swear it was a torture chamber. I passed out like 4 times in there.

[@athenapromachos3027]

My girlfriend and I are working on getting her a diagnosis for her chronic pain. We don't know what it is, but she's 19 and has to use a cane if she doesn't want to wake up in agony the next day. Colds and flus can last weeks or months for her. Her family is antivaxx and didn't help her at all. She's with my family now, vaccinated, and getting help, but it's such slow going. Thank you. This helped us feel heard.

[@HighFiveFriend]

God bless you for helping her. Dr. Horowitz has 2 great books about chronic pain, and lots of YT videos on it and a free online screening quiz. PLEASE include him in your research. I have a playlist on my channel as well (its a lot!) that go super deep into this. If I can be a resource or answer any questions lmk. Also, it is estimated that 1 in 7 people have Lyme, and can look just like what you are describing. She CAN heal, and you are part of her story 💚. Sandy

[@urbanyolk]

Very well said.

[@mmcguire6286]

Thank you for talking about this!

[@raemills3089]

Waiting to find out if I have EDS for sure. Spent years being told that it was mental health. once I had support from three different mental health professionals that it was not, I was STILL told - it's MS, for years -, then Lupus, then RA... Then Fibromyalgia.... Currently I sit with fibromyalgia, IBS, neuropathy, hypermobility and early OA. Tell tale signs of EDS

[@FangirlRandomscrew]

thank you Brianne!

[@andreawisner7358]

Thank you for this video.

[@terrijennings8492]

Beautifully said! You have portrayed my story perfectly!!! Thanks

[@pwear2528]

Thank you so very much.

[@nirmaladrieskens4338]

Great video, thank u❤️❤️❤️

[@tt2524]

Well done and accurate

[@Jaebee2626]

THANK YOU so much for this video. 🫶🏼

[@siis2170]

Great video

[@Bobinvr]

Great 👍🏻

[@bonnierobinson8684]

I am here right now

[@bhaskartaneja6293]

I liked what she said a lot. I feel like 1 bottle of Benadryl taken.. slow .. difficult to collect thoughts.. Suffered lot with psychiatry. Now suffering without diganosis after 4.5 years off medications. Passed my 20s in this state .. What I don't like about doctors that they don't believe ?

[@barbiegott8847]

Beautiful ❤

[@caredfor6872]

I have interstitial cystitis. An autoimmune disorder of the urinary bladder. GERD gastriopresis, carpal tunnel syndrome

[@0xEmmy]

3:00 *laughs in undiagnosed despite lifelong symptoms consistent with EDS*

[@georgeduncan5178]

incompetance keeps people sick 🤢🤢🤢🤢🤢

[@cmj5281]

It took many years for my diagnosis.I’m now on permanent disability. I pray for Gods kingdom to come on earth as it is in heaven. Isaiah 33:24 And no resident will say: “I am sick.”

[@Malcolm-Achtman]

When I listen to this talk and read the comments I begin to think of Mikhaila Peterson who had many serious autoimmune problems and found such a simple fix.

[@babibratzko1744]

Even with diagnosis I struggle with using my mobility aids because my family makes fun of me and people say I'm over reacting so I just don't leave the house.

[@monawilliams9950]

, ,I will never forget dr ewoigbe Abumere on KZbin for the job well done. With your medication am free from herpes virus thank you sir. You too can get cure off any disease

[@andreawisner7358]

Never quit your job before being fired because you lose the possibility of receiving unemployment compensation.

[@veereshvastrad3501]

Active b12 MMA test

[@altheaduncan4126]

Are any support groups available? Thank you for replying

[@samrobinson5130]

Following

[@Authormikamathews]

After a decade I'm getting my answers...CFS is what they're calling it!! I felt seen and there is power n it!

[@Victory.In.Jesus95]

It took me 20 units of blood, 2 lumbar punctures, 2 MRIs and one misdiagnosis before the doctors realised that I have MS (and therefore, even though I’m not a doctor, I jumped straight

[@sticky9129]

What are your symptoms? Why didn't they see on first MRI?

[@ArtingFromScratch]

24yrs to get a diagnosis. I feel like this is me

[@pippysmusic]

❤️

[@contentsavvy3517]

I suffer GERD daily it really is most worst chronic disease whenever i eat i pay the price later 😕 i suffer 3 times a day

[@carolinaorleans8351]

I spent 12 years looking for aswers until I received my diagnosis of focal epilepsy (a type without falling on the floor or fainting). The psychiatrist always classified my symptons as anxiety, fadigue and depression, but it was actually seizures. He never asked me for an MRI and when I did, I found out that I was born with epilepsy.

[@maryrichdard4068]

I want to say a very big thanks to doctor Ben Uda on KZbin channel for his marvelous work in my life..

[@yousif_268]

شنهو الجمال البيها سحر كلبي

[@veereshvastrad3501]

Vitamin b12 deficiency and d

[@Jamal287]

What kind of disease did she have/has eventually?

[@Caleb-il7om]

EDS I believe, found out recentlyish

[@naciye3827]

Unprocessed emotions especially grief. Often materialise as physical symptoms.

[@Caleb-il7om]

No need to rehearse the 'chicken or the egg' thought experiment for us; we're all very aware

[@veereshvastrad3501]

B12 deficiency

[@veereshvastrad3501]

D3 deficiency

[@veereshvastrad3501]

B12 deficiency