Louder for people in the back: Just because you can't afford either the time or money for diagnosis does _not_ mean your symptoms are not valid!!

I’ll never forget overhearing one of the doctors in a&e telling a nurse that he was certain my stroke-like symptoms were because I must be pregnant, even though I had 5 minutes prior to this told him I definitely wasn’t pregnant. After days of tests in hospital, I was then diagnosed with a neurological condition. The speed at which male doctors disbelieve young female-presenting patients is astounding.

When remembering "doctors are human" remember that means: "Doctors can be bad at their job" My aunt should lose her license

One tips if you’re not a cis male that I’ve noticed during my medical journey: focus on how the pain/symptoms is effecting your every day life. Example: instead of saying “I have a hard time to fall asleep due to my anxiety” say “the sleeping problem I got bc of my anxiety is effecting my ability to work”.

Litterally started sobbing at this. Medical gasslighting is too real

God, there is nothing more soul sucking than going to doctor to doctor and countless appointments knowing that something is wrong and undergoing test after test only for them to tell you that everything is normal, maybe you just need more sleep/a better diet/ maybe it's all in your head. Even when doctors are genuinely nice and understanding, I feel like I'm wasting their time or an idiot and that I'll never feel better and never know why. It doesn't help that I do suffer from sometimes quite serious hypochondria, meaning there is a very serious chance something COULD be all in my head. And it makes me feel guilty to even go and get tested in the first place.

Lovelies please remember that just because you may have some psychosomatic symptoms that doesn't mean you have ONLY psychosomatic symptoms, treating your body means treating your physical and mental health issues. Both types of issues are valid, if you don't feel right something is wrong. No matter what.

It took me over 5 years to get my diagnosis because doctors didn’t want to run a test, that when finally done, diagnosed me. My husband was told over 5 years they had no idea what was going on with him, and maybe it was psychosomatic. It was Lung cancer. We are both learning how to become better advocates for ourselves, and for each other. To any of you still on your medical journeys, my thoughts are with you!

The "all in your head" explanation is ironically comical to me. I have anxiety, clinical depression, ADD and brain damage. I have a dark sense of humor. Thankfully due to my obsession with the sciences I actually do know what most medical terms are, and if I don't my doctors will happily explain them.

As an able-bodied medical student this is such an important watch to ensure no one with chronic illnesses go dismissed

I’ve been sick for 31 years but have been actively seeking a diagnosis for 10 years. During those 10 years I received no treatment while My health continued to decline and I encountered a lot of medical gaslighting, trauma, and outright cruelty. I was told over and over that I was crazy, attention or drug seeking, lying, and most often...experiencing a psychosomatic issue. However, as of yesterday, I finally received my 3 primary diagnoses! Ehlers Danlos Syndrome, POTS, and MCAS. I am now being prescribed much needed medications and therapies. I have access to assistance and accommodations. And the symptoms that aren’t covered by my current diagnoses are now being taken seriously and comorbid conditions are being considered. I definitely agree with all of these tips. Be your own advocate, keep very good records and symptoms journals, don’t stay with a doctor who is unhelpful or straight up abusive, stand up for yourself, and educate yourself on your symptoms and experiences.

I don't think I will ever forget that hospital doctor that looked at my MRI and was like, "This thingy here is odd, but you're just imagining everything. :)" and me walking out the hospital crying like a baby. And now I'm terrified of ever going there again. Fun, fun.

I’m still building up the courage to email the neurologist who told me to stop journalling and focusing so much on my symptoms, and they would just go away. He told me my pain and other symptoms were psychosomatic, so by just relaxing and ignoring the pain, it would go away on its own 🙄 Then my psychiatrist, following the neurologist’s “diagnosis”, tried to put me on medications that I didn’t need to treat the “psychosomatic” symptoms. He also told me that with mental illness sometimes comes unexplained pain, and accepting that it wasn’t physical, and start ignoring it, would help it go away. Basically: as previously established, you’ve got the crazy. Here’s some mood stabilizers, now get out of my office. Thank God I chose not to use their advice, because after several more months of pain, I got in to see a physiotherapist and was almost immediately diagnosed with a treatable physical condition. Anyway, there’s a big part of me that wants to email that neurologist to tell him how wrong he was about my condition. The amount of stress and pain I went on to experience because he didn’t believe me is unacceptable. It bothers me to no end he may be giving that same advice to other people with treatable pain.

As a child in the 60s : asthma was something I did to myself to get attention, allergies didn't exist and I was just "showing off" and when the school were told I had a peanut allergy, my Mum was told that I should " just take the peanuts out". And of course my parents were just being over protective and paranoid.

the feeling of being sat in your doctor's office and saying "I'm fine actually, I'm doing great" when you're obviously not doing great at all is too relatable

its so weird because they just kinda told me ''idk what you have bro but your pain is definetly chronic'' and then kinda dropped me. after 2 years of going to a lot of doctors, lots of all kinds of doctors, too. they cant figure it out and except to accept that its just some chronic pain and take strong pain meds. and im 17 so i dont know where to go at this point. im in paralising pain

Literally every single therapy session starts with an uncomfortable silence after which my therapist will reliably ask "How are you?" and about 95% of the time I start by saying "oookaay" and then proceed to spend an entire hour talking about some of the things I've been struggling with in the 2 weeks since our last appointment. In case you're wondering, 5% is when I say "Surprisingly well right now, although..." or something along those lines.

As an American, I second Jessica's warning to not ask for medication in the US prior to getting a diagnosis, especially as a woman. Both my mother and grandmother have chronic nerve pain and have been accused at various points of faking their condition in order to access "unnecessary" medication. Neither of them was provided with medication until after they received a diagnosis, and that required visiting multiple doctors until they found one who listened and believed their pain was real. I will also add that my girlfriend (who also has EDS) went undiagnosed for years and received no medication, as her doctors blamed her joint pain on being overweight. It wasn't until she lost a significant amount of weight that she was finally diagnosed and was able to access medication and physical therapy.

Whenever my sister goes to an appointment about her conditions she asks the doctor either let her record the full conversation or to give her a plain English summary of the appointment (also recorded) - with a focus on the actions she needs to take. We've never had a doctor or nurse turn us down yet (our mother had similar issues) and it really helps us provide her with the extra support she needs with her memory and continuity of support when different family members are doing the hand holding (she's a very good self advocate).

I'm 22 and have just been diagnosed with arthritis. I've already had waaay too many people questioning the diagnosis because "Isn't this an old person disease? You can't possibly have it this young." and it is so tiring to be invalidated constantly. The pain has been with me for some time, but I ignored it for a while, dismissing it, thinking "everybody feels pain in their hands, right?". I started being vocal about my pain to people around after having the diagnosis, now I've heard something like "do you think that maybe some of this pain could be psychological? You've never complained about it before". Now I'm struggling to make them understand what I feel and how they can help.

hEDS here! I was medically gaslit for a decade before I got my diagnosis. Now I am one of the very few openly chronically ill people who is "out" about my disability in my field. The more we talk about it and normalize discussions like this, the better off chronically ill folks are in future as they pursue diagnosis (or don't), move through the world, ask for access needs being met and more. Thank you, thank you, THANK YOU for the hard work you put into this.

lol a doctor tried to tell me my ibs was anxiety like. ma'am. im in my 4th year of psych. i Know whats anxiety. also every "consider losing weight to solve every single problem ever!!!" makes another finger on the monkey paw curl

If it wasn't for you talking about chronic illness and disabilities online, I'd probably still be gaslit into believing it was 'just hormonale imbalance' or depression and driving myself into the ground. But you talked about ME/CFS some years ago and after some reading, I brought my suspicion to my doctor. Got sent to a specialist and got diagnosed with ME. I can never thank you enough for making the videos you do. It changed my life ❤️

I’m autistic and watching how you talk so openly about your disabilities inspires me to accept my own :) Thankyou

As someone with ADHD, my brain works in a very similar fashion to 5:50

For my fellow US folks, here's what I found helps with talking to doctors about pain. Sorry y'all, it's a thesis. But just in case it helps. 1. First, know that most of the time, when a doctor is side-eyeing you because you need pain-relief, it's because they're scared. The DEA - the Drug Enforcement Agency - monitors how much pain medication doctors prescribe, how often they see you, how often patients change doses, how many scripts they write, which pharmacies they send to, etc. And if they don't like what they see, they'll interfere in their practice, tell them to change *patient care*, or medications, or how many scripts/month...or they can lose their prescribing abilities. While it's definitely prejudicial - "Hey, I'm gonna make a snap judgment that you're drug-seeking or drug dealing based on race, age, sex and ability" - it's not all motivated by _pure_ racism/ageism/sexism/ableism/etc. There's a lot of doctors that want to help, but they're anxious or don't think it's worth it. 1a. After the FDA and CDC released some _recommendations_ for how to prescribe pain medications, some states took it as gospel and made it _against the law_ for doctors to prescribe over a certain dose. Other states made another hoop for doctors to jump through, where they have to document why they went over that dosage. So they literally can't prescribe what works for you, or are overwhelmed by the State *and* DEA document requirements. BTW, this almost become national law a couple of years ago, until disability advocates stopped it in committee. 2. So, given this, never ask for specific pain meds. I know, it sucks. You know which ones work. But that is red flag #1 of drug-seeking, the whole reason doctors are getting regulated this hard, so it freaks them out. So instead, you can bring in a list of all medications you've tried, along with side-effects and efficacy info for you. "This one worked well, but it made me sleep all day", "This one made me a little groggy, but the sharp pain in my back was bearable". That kind of thing. 2a. If possible, get a genetic test (ex. GeneSight) that shows which pain medications your body breaks down the best. It helps you both know maybe why one works better than another, or which need dose adjustments. And it SERIOUSLY helps with insurance companies that try to tell you which pain meds to take. 3. Bring in a pain scale with descriptors on it, and go over it with your doctor together. Like, printed out or on your phone, physically viewing it together, lol. Most of us have learned never to say "11" - again, those doctor side-eyes. But since pain is subjective, it really may be your 11, and we are desperate to be heard. Problem is, doctors have a scale _they've_ been taught. And for them, a "10" means the patient is unconscious from the pain. It's reserved for things like devastating car accidents. Pain also causes physiological responses, like increased heart rate and blood pressure. So if you come in, normal heart rate and blood pressure, speaking in normal tones and say it's an "11", they think "Liar" or "Malingerer", not "This must be really bad for them". So, we have to accommodate the doctors and use their pain scale terms. So, for me, I learned that despite being in pain all the time, if I'm able to distract from it, that means I'm at a 4-5. Once I can't distract and nothing else helps (medication, ice, heat, stretches, shower, sit, stand, lay-down), I'm up to 6. My best days are a 3 (ooo, that's bliss) and my worst was an 8, where the pain made me puke. But I have never, ever hit a 10 on their scale. Just sharing that part in case it helps you understand the kind of range doctors are looking at. That's why I say have that pain scale ready, so you both know what you're describing. If they still won't believe you, or if a doctor thinks a 5 "isn't that bad", or are dismissive in any way, if possible at all, please find another provider. They aren't gonna believe you anyway, so if you can help it, save yourself the crazy-making gaslighting.

The bit where you’re talking about organizing medical letters and how your memories about it work is SO relatable. I have ADHD and possibly autism, so my brain just files information in weird spots sometimes or saves the least helpful details 😂

I'm able-bodied but watching this in hopes of understanding people's experiences better! (And maybe help someone in the future)

The dislikes are all the doctors we’ve been to that asked “if it was really that bad” and prescribed Advil 👍

When you got to the part about doctors outright telling you that you are lying, I began to quietly sob in my recliner.

Could you please also make a video (if you haven’t already) on your favorite products for chronically ill/disabled people? Obviously some would be disability specific but others (such as favourite heating pad or favorite pain relief device) would be applicable to most people.

I've never had to deal with a chronic illness, but I grew up with mother who is a Christian Scientist. Any medical issue was bombarded with questions like "What's the emotional cause of your migraine?" (lol yes lets talk about emotional trauma and pray about it while I can't see straight) "Is this stomach ache because you got into a fight with your sister?" "Oh you're feeling depressed? Count your blessings and get glad again!" There is a reason I don't talk to my mom about anything health related (mental or physical) anymore and I have a visceral reaction when she asks about it.

I have an eating disorder that was only recognized a few years ago, ARFID. Hearing that it wasn't just 'in my head' was so cathartic!

Every doctor I’ve gone to about my chronic pain has said things along the lines of “I’ve never dealt with this before...” “You’re too young.” “The only name for chronic pain I’ve heard of is Fibromyalgia, but you don’t have that.” Even when I drove multiple hours to see a neurologist at the best hospital in my state. And, yes, I live in the USA, so my parents have paid a LOT of money to get told I had chronic pain. I diagnosed myself with chronic pain in 5th grade!

A point, for really anyone, that was made here..."you are never too old to have someone hold your hand"...I am terrified of dental surgery, and being put under...I am in my 30's and still asked my dad to come with me. Its ok to have someone you trust when you are doing anything medical, I repeat...ITS OK, you are not less of an adult or a person, or weak for that matter.

Jessica as someone who's been having a 16 month diognosis during covid I am in love with you for this

That last part really hit me. I'm not trying to get a diagnosis for a chronic illness, but I'm trans and currently in the process of getting HRT (Testosterone). So essentially, I'm trying to get diagnosed with "trans". I was very recently told that my case is very "untypical" and the process was stopped because of that. I wasn't told, I'm not trans, but it's still a major setback and shock in my eyes. It honestly brought up a lot of self doubt(which is essential to the process I'm being told, but still) the reminder that just because you arent diagnosed yet, it doesn't mean you do not have the thing you think you have is really helpful and meaningful to me right now. If you happen to read this: thank you, Jessica, for being so helpful, kind and uplifting.

I was misdiagnosed for twelve years and the previous treatment undoubtedly made me worse 😔

Actually had a doctor tell me my migraines were all in my head. 🤬 am getting a diagnosis done for joint pain (chronic lifelong) at 62. Will let you know. Thank you so much for all you do.

i am currently in the process of getting diagnosed with what i believe to be Chronic Fatigue Syndrome and this video made me feel so understood, i'm actually crying while writing this :') being gaslit or simply dismissed not only by doctors but also by the people who are supposed to be my immediate support system was and still is an incredibly disheartening feeling and sometimes i feel so hopeless and alone because I KNOW there is something wrong with me and just because it's not showing up on paper it doesn't mean it's not there... this video made me (and i'm sure many others too) feel so heard so thank you, Jessica

Thank you so much for this video 😔💜 it took me 20 years to get a diagnosis for endometriosis. One (male) doctor even told me women tended to be paranoid thinking we had endo, and once a nurse looked at me after being brought it by ambulance and asked the paramedics why they’d “wasted” an ambulance on me. Sighs. It’s one of the hardest battles I’ve ever fought (and still fighting...)

My doctor won't even treat my brain injury that I've had for 4yrs. I just wanna get better. There's no doctors here so I can't even switch. She's currently refering me to mental health bc I keep crying while she gaslights me. Like ma'am I can't walk straight

As a future doctor, thank you for sharing your experience. I am sorry you have gone through so many problems in the medical system. Your experience with your chronic illness is very interesting and educational to me....I hope your videos will help me do better than the other MDs :)

My father-in-law always said, "doctors are practicing." That was so freeing when we were trying to find my diagnosis. Any time I meet with a new doctor, or something new is happening, I bring along a family member...usually my wife. I also attend others' important doctor appointments for support.

I’m beginning my journey to try and get a diagnosis after my sister encouraged me and told me that I don’t have to just sit there and suffer, and that maybe its not normal to hurt all over all the time for the past 10 years. she’s honestly the first person whos told me that I didnt just have to deal with my pain and that I deserve to try to figure out whats wrong and treat it. thank you for this video. I need to remember to trust myself & advocate for myself

I got a diagnosis but still cant find a dr that wants to treat me. Ive been trying to deal with it for 8 years since by myself. This community means the world to me

I once had a doctor suggest that maybe my physical symptoms were “just” a physical manifestation of trauma from potentially being molested as a child. I was NEVER molested as a child but that was his best assumption since my symptoms started around the age of 8. That appointment was so traumatizing, I left on tears.

As someone who's been told it's in my head for 18 years, many, many doctors and just being released from the ED for the 5th time in 6 months with "we don't know what's wrong" I really terribly needed this video. Thank you so much Jessica!!!

Not an illness, but I have my first autism discussion with a doctor next week and this video is well timed to say the least. I've heard a lot of horror stories from women trying to get a diagnosis. I needed this

Yes to the gaslighting thing by doctors. I hate that so, so, so much!!

Jessica, you really are doing an amazing job in educating us! I’m so glad I found your channel. You broadened my horizon and helped me to have a better understanding of chronic illness and disabilities. Thanks to you I started learning sign language again ♥️ much love from Germany!

On the mental health front having a supportive psychiatrist who can verify to other doctors that your symptoms are physical and not a product of mental illness while also looking after your mental health to help make sure you are only having to deal with your physical symptoms makes a huge difference. That piece of paper saying your depression is reactionary to your illness not the other way around is essential to being taken seriously.

I just got diagnosed with ASD and CFS/ME at around the same time so it’s been hard coming to terms with two pretty large, life altering diagnosis’ :^} but I’m slowly becoming a more authentic version of myself which is lovely! Tysm for this 💌

I didn't come here to cry, but here I am, crying. I've been treated for depression and anxiety for over 8 years now but no one is willing to put their name on a bit of paper for me for official stuff. It's easier now I have an autism diagnosis, but man was it a pain in the ass before that getting accommodations starting uni for a mental illness I DEFINITELY have without someone being willing to sign on the dotted line. It's not even like I have an uncommon condition! So many NHS professionals will say they don't have the training or it's someone else's job to make the call and be ever so kind about their hands being tied by bureaucracy but damnit NHS why is it easier to get a cocktail of crazy meds than a bit of paper saying why I need them?! Best of luck for all fellow spoonies hunting for the bit of paper that will make their life easier

I do not have a chronic illness, (though I do have a speech impediment so I guess I do have a disability) but hearing you talk about your disabilities so openly has changed my view on chronic illness and disability significantly this past year or so, and I will forever be grateful to you for opening my mind and showing me an entirely different worldview than I've had the (displeasure) to experience at home. Thank you so much for that. Thank you for inspiring other people with disabilities or chronic illnesses who watch your videos to share their own experiences, knowing that there are people out there who will listen to and support them. Thank you for being such a positive influence in *my* life. You're a wonderful and awesome human being, and I wish you all the best. ❤❤❤❤

Almost three decades of living, almost a decade with depression, almost 4 years with chronic pain and horribly declining physical and mental health, almost 2 years of actively trying to fight my way to somehow get a diagnoses and help... and some months since almost giving up everything... how is it that it took this long for me to hear the words "You matter"... thank you, Jessica.

i have gastroparesis suspected heds, as well as pots. i got sick 2 years ago, and saw three different doctors, all telling me i was doing it to myself and it was good i had lost weight (60 pounds in 3 months). i was finally diagnosed this year. i’m now starting a liquid diet to hopefully avoid tube feedings. the biggest advocate is yourself 💚

Having a chronic illness that manifests as both "ew, what is that?" and "why can't you walk/climb/do this thing faster?" is a nightmare. Luckily I moved after my diagnosis, and when people asked, could just be, "oh yeah. my body's all fucked up. I'm just like you, just wonky in this one weird way most people don't get." My coworkers have largely been, "oh. That sucks. Let me know if you need help, ok?" But I understand how wonderful my coworkers are, and how privileged I am to have a job that brings in supportive and awesome people to work around me. After a decade (in the past) of fighting through doctors, I finally found one that was like, "you know they have drugs now for that?" and got me a prescription, and my quality of life increased SO SO SO SO SO SO SOSOOOOOOO much! Now I know to just tell new doctors: "I have X. I like drug Z. It has been effective for me, and has solved symptom A, B, and C. Let's get me some Z, if you don't have any concerns." Usually it's just, "yeah, that's 100% what I would say. Let's get some bloodwork done so we can get this going." Occasionally it's "damn straight. Prescription's submitted, you should have it in two days, and it should last a season or so." Love and Peace to you all!

I’ve been on disability since a work injury in 2016. I had to get referred to a new neurologist and when he told me “your fine, just go back to your job” yet my chronic pain and weaknesses caused from my injury make it hard for me to do basic things like brush my hair, vacuum and chop vegetables (had a physical assessment and there results were I need permanent restrictions and limitations, but yet a man that met me for 20 minutes thinks I can work a job where I need to lift and move people who can’t physically move themselves. I was like 🤯 huh .......

I realize I haven’t ever commented on how much I love the asides to the side camera. Because I do. So I did. Thank you.

This was so helpful! Thank you! I literally just spent all of yesterday with a doctor telling me, "Well, since you're a teenager, and you have just been diagnosed with depression and anxiety, you're pain is all a result of that." Like, yes that can happen. But I haven't been depressed my entire life but I've had pain my entire life. Sometimes I wish people would just actually listen ugh.

Grey's was emotional enough to watch over the course of 16 years, and you watched it all within the span of a few months. That's...a LOT! Are you okay???

I've been dealing with doctors who haven't found anything wrong with me despite having chronic back pain for about 23 years...and I've finally found a doctor who's taking my pain seriously and I cannot even begin to tell you how relieved I was.

I’m a doctor. I also have a couple chronic illnesses (mostly diagnosed, but one that isn’t beyond “yeah something’s wrong but we don’t have a name for it so byeeee!”). I will add under that “your doctor is human,” bit that remember it’s not your doctor’s fault that a test comes back normal. It’s not (most of the time) because they did it wrong or didn’t explain how it works well enough. Sometimes it’s just the wrong test, but ruling things out is important. Yes, the ultrasound I had was completely useless for diagnosing my endometriosis. But if it had shown something else I would have been spared the surgery I had instead. Only blame them if they stop looking, not if their process doesn’t necessarily lead where you want it to go.

Getting a diagnosis on my chronic knee problems took about eight to nine years. I started having knee issues in late grade school, but at first I got told I would grow out of it (despite one of my older sisters needing knee surgery at 20). When I brought it up to my doctor later, he said it was just overexertion from working in the fast food industry. Doctor #2 said the same thing a year later. While they were not technically wrong, my knees get overexerted much faster than my peers. At the end of January this year, I ended up in the ER from how bad my knee pain was. The ER doctor was awful and pretty clearly did not thing my knee pain was as bad as it was. He ordered x-rays, but not a full set including what my current doctor described as sunrise view (which would have made my diagnosis pretty clear). He also did not order an MRI. The tests he ordered came back with everything listed as normal besides me being slightly hypokalemic. I had a follow up appointment a few days later with my current doctor where he looked at the x-rays and showed them to me, and he could not believe that the x-ray reader did not see that the track for my kneecaps is too shallow. Because of this, my knee caps don't track right and are starting to deteriorate my cartilage even though I am only 19. I am more or less guaranteed to knee surgery, but since I finally have a diagnosis I can better delay the need. Please please PLEASE do not stop advocating for yourself when you know something is wrong. A diagnosis that can get you better treatment and improve your quality of life is better a little late than never!

I've been really looking forward to this ever since it was announced! I've been having this 3 year ongoing battle with doctors because no-one will take me seriously. I'm in pain 24/7, somewhere, somehow! I'm weak all the time, sometimes I can barely get myself out of bed because of the pain I wake up with in the mornings. I've done blood tests, nerve conduction tests, x-rays, seen a physiotherapist, ruled out arthritis, ruled out muscle sprain. Every single doctor keeps dismissing my pain, first it was just growing pains, then anxiety pains, and then it was autistic pains, and then it dyspraxic pains. With every doctor that dismisses me, the voice in my head keeps getting louder and more persistent because I'm getting tired with this pain and no answer, no access to treatment for it. I'm so passionate about neurodiversity, and I always advocate for and validate those who self-diagnose neurodiversity. And yet I've been so apprehensive to self-disagnose myself, I've been apphrensive to questions the doctors or be more forceful with them. I haven't seen a doctor in a while, because I've been so beaten down and exasperated, but this time I plan on marching into that doctor's office with my diary entries and all the research I've done, I need to be taken be taken seriously and I plan on telling him I truly believe in my BONES that I have fibromyalgia and how I identify with so many of the symptoms. But I'm also fucking terrified lmao

Thank you Jessica. my wife has a chronic illness and it was remarkable how quickly we got a diagnosis (7 Months). Best of luck with your journey!

"Process of collaboration" is such a key thing to remember. I've had such better interactions with doctors when I approached it as "I'm looking for a partner to help me with this journey, so let's work together/I'd like to try x thing and see if it helps, are you open to that? " they've been so much more open to my ideas and what I'd like to try.

Living in the US, I have found that avoiding the words drug or medicine, I was able to get the appropriate treatment. Seeing a MD over a DO will also increase your likelihood of receiving medication. The best phrasing I’ve found is ‘seeing the impact on my daily life, what would you recommend to allow me to do _________’.

Thank you for talking about this, Jessica. I'm currently trying to get a diagnosis for an issue and just passed one year of tests and treatment. It's so frustrating.

Heads up, this is a long one... I've been trying to get a diagnosis for my health issues since I was a teen... my mom wanted to find out what was wrong asap but we kept being ignored or told we were exaggerating/ making things up. Since about 2007 I have been having worsening symptoms. It used to be where I would be tired more than everyone else after little to no activity. Then I started having bouts of paralysis where I couldnt get off the school bus to go home and had to be carried off my my brother and/or my other family members. Fast forward to 2013 when I was a sophomore in college, I was having more muscle fatigue on a regular basis, my knees would hyperextend while walking to class, I had severe migraines that would last for days on end, and I started having trouble holding a pencil to write or draw. My cognitive function started to suffer and even still I couldn't get answers from doctors. In 2014 I transferred universities and thought I was doing better until I ended up having to go to the hospital for stroke symptoms that they could find no cause for since everything looked "normal". From there I had daily complex migraines for 2 1/2 years that made me walk funny and barely function in general despite me having to go to school and work every day because i had to "suck it up." I ended up being homeless twice since my health made it impossible to keep a job that paid little and only gave 4 to 8 hours weekly. I'd get back on my feet long enough to crash down again harder. In 2018 I finally got a job that was willing to pay well and give me full time hours (3 towns away from home), and my manager was willing to work with me and my mental processing issues and occasional flareups in mobility troubles. A year later she was transferred out and replaced with someone who didnt believe someone my age could have my issues and who tested and pushed my limits daily to the point that I would get to my car and not be able to drive home because paralysis would take over... my customers saw and worried since they saw me stumble and collapse several times. Now I cant even leave my house except for small excursions where I use store scooters and/or a cane to get around. My tourettes is worse since an EMG that was done and paralyzes me by overexerting my muscles. I cant work and I dont qualify for disability without a diagnosis. If not for my boyfriend and bff I would've been homeless a third time several months ago. Sorry for the long comment, I just needed to get this off my chest. I've been crying a lot out of frustration and fear that I'll never know what is going on with my body.

Last time I was this early,I thought I was neuro typical

Incredible : I was literally (true sense of the word) talking to my mate about my fears of chronic illness via long Covid that are now linking up with my military ptsd, when this episode popped up in my subscriptions via Notifications. That was a long sentence!

Haven't watched the video yet but I can already tell im gonna relate. It took me YEARS to get a diagnosis and even then when I get a new doctor I have to explain my illness over and over again. I shouldn't have to feel like I'm more knowledgeable than my doctor

Hello everyone, how are you all? I hope you are doing well. Have a fantastic upcoming weekend and remember that someone out there cares about you and you will always be valid.

Thank you so much for this. 10 years ago doctors indirectly accused me and my mum of faking my seizures just because they didn’t present “typically” there are over 100 different types of seizures! I also have GAD, ADHD,OCD, CPTSD and I’m autistic (I personally don’t see my autism as a disability but everyone’s different) a lot of the time unless they’ve experienced something similar themselves, doctors dont seem to understand how important a diagnosis is to people. They talk about not wanting to give someone a label but for me a label is everything!. Wanting a diagnosis doesn’t equal wanting the illness/disorder It means I’m not alone and if you name the monster they you can slay it. “It’s all in your head” is the worst phrase, where else would I keep my ADHD? In my foot? The song ‘a diagnosis’ from crazy ex girlfriend describes it perfectly.

Everything about this video made me feel infinitely less alone. I can't thank you enough. Finally got a rheumatology appt two years ago after decades of pain, only to be told to go and see a shrink. Needless to say I haven't been back to the doctor since. I can barely walk at the moment and feel so helpless as I can't cope with being turned away again. The bit about how your brain works with important papers etc literally made me shout out "That's ME!!"🤣

RE Medication requests: I just dealt with this. Another friend of mine with Ehlers-Danlos was put on a certain pain patch and she sang it's praises for it's ability to help cut her pain down. I was just getting established with my own pain management doctor and he was taken aback that I requested the same one until I explained that I had already tried other medications and that she has the same disorder as I do.

I’ve spent my entire life trying to make doctors listen to me and my symptoms even though every time they would tell me I was lying, that it would go away or it was inside of my head. I did every test possible and eventually developed trauma of doctors because I associated them with pain and lack of care. They looked down on me because I was a little girl and couldn’t possibly now what I was describing, even when I passed down from pain. Eventually they convinced me that I was lying, I convinced myself it was all in my head and stoped complaining about it. I thought it was normal to feel pain and that everybody lived like that. Last year I had had enough, it was my last year of high school and somedays I could barely walk without screaming. I ended up stumbling across a tiktok in which a men talked about his wife that had EDS and her symptoms, and that video was scarily similar to what I had been feeling my entire life. I decided to look more into and after months searching about it, I went to a doctor trying to see if it was really that. He dismissed me without sparing a blink, I will never forget how I felt while he looked at me with so much disdain. I broke down when I got in the car, I was furious that he didn’t even considered or heard any of my symptoms, but I continued looking for someone who would listen to me. I found my angel, a doctor that sat down with me and analyzed every single symptom until she diagnosed me. She has been helping me for the last few months, I was diagnosed with hEDS, POTS, MCAS and more in the beginning of this year. This wouldn’t have been possible if I hadn’t fought for a diagnose, I still have to learn more about how to advocate for myself, but I will never let anyone convince me again that I don’t know about my own body, that my symptoms don’t matter or that it is all made up. Thank you for sharing your story and creating a space for other people to share theirs.

Me watching this: "Yes, YES, EXACTLY YES!" I will be sending this video to all my friends and family. All of this is incredibly important and helpful, thank you very much, Jessica!

Wish I'd had a video like this back when I was first going through diagnosis/fight for benefits. This is a fantastic resource for people, thanks for making it!

i literally cried at the end of this video, the talk on mental health not only touched me but absolutely hit me deep, i haven't had the best of time with my mental health lately and this whole video was just one big cyber hug and it made me feel less alone, even for a minute, that meant a lot.. thanks Jessica. my question is - do you use something like a teleprompter when you do videos with long quotes like in history videos?

Thank you for this. I often catch myself thinking "do I actually have chronic fatigue, or am I just lazy?" and I know it's a product of having so many doctors doing so many tests and then saying "the test results say you're fine" (and I'm sure the eight years of being misdiagnosed and taking the wrong meds didn't help), but it's so nice to know that I'm not alone in that worry. That other people understand.

I've had CFS for 10 years, and have just recently been able to get a diagnosis after years of medical gaslighting from so many different doctors who told me the classic "your tests are normal so I guess you're fine!". It's so hard to be persistent in looking for answers when everyone is telling you it's in your head. If it didn't get bad enough that I had to quit my job, I probably would have never gotten a diagnosis.

Still waiting on a diagnosis of my own since around 2017. Doctors don't want to give me one because a lot of them don't believe it's real. I've been told countless times that everything will get better if I just exercise more and move my body, but I've tried that for years and it hasn't made a difference. One of my doctors has diagnosed me with "having the symptoms" of my pain disorder, but won't give me the actual diagnosis because I'm young and if I exercise more, I might grow out of it, and also because there's no official treatment for it. Spoiler alert: just because I was young when I started having symptoms, I am no longer that young and the symptoms have only gotten worse. Now that I can barely walk without increasing my pain exponentially, hopefully I'll be able to get some improvement. Cheers to all of you going through the same struggles.

This may be helpful for my US friends trying to get access to pain medication for chronic illness that are having issues with their doctor or currently undiagnosed: Request from your primary care physician to see a pain management specialist. While your primary doctor may be worried about you "drug-seeking", the specialist is trained in taking people seriously and trained specifically in painful conditions. Meaning they can actually tell when people need help and can grant you their services and access to medications if necessary!!! This helped me after years of "well the tests say you are fine, so it must just be because you are stressed and we can't give you any more medication for that"

Lately at my physical therapy and/or doctor appointments they’ve been trying to convince me it’s either somatisation, or “Have [I] considered that maybe there’s not an explanation,” or it’s my nervous system just turned all the way up. My last physical therapy appointment she managed to say it was both no explanation and my nervous system being out of control, and I basically need to meditate a bunch. I believe they are all wrong, but what tf do I know. It’s so disheartening, and I feel like I’m going out of my mind :(

I spent my whole childhood reporting symptom after symptom, sitting out of activities and ending up in the ER because I was in so much pain and couldn't communicate why. I was told time and time again it was growing pains, I was exaggerating, I just needed to be more active. For the past two years, aka as Soon as I had control of my own medical visits, I've been looking for answers. They threw out fibromyalgia, juvenile arthritis, and of course just "needing to lose weight" (despite being at a perfectly average weight) and after a while, I gave up. Your videos made me realize my bendiness was a much larger part of the problem than any of my doctors thought. This past month I started physical therapy, got ring splints to allow me to write again, and yesterday I was finally diagnosed with Hypermobile Spectrum Disorder. I know this is just the beginning, but it's so relieving to have an answer, even if it isn't something that can be "fixed". If it weren't for sharing your own journey I can't imagine how long it would've been before getting this kind of help. Thank you

I've been on disability for 6 years now with anxiety and depression. Thank you for validating me!

I started getting migraines (my father had them, but was never officially diagnosed) at 11. They looked, but couldn't find a physical reason so I didn't get treated. What we didn't know then, but it was probably when my food allergies started. I was 22 before I discovered the food allergies. Then I had a serious reaction to my #1 food allergy - corn - and became way more allergic to lots of foods, that was about 8 years later. I suffered for about 18 months before my mother decided to take me to a different allergist. I swear he saved my life. About 5 years later I started having lots more body pain than before. It took discovering a book about fibromyalgia that I went to my doctor. He sent me to a rheumatologist who officially diagnosed me. I now go to a pain clinic and get some of the good meds, but I can't take some of the 'go to' meds because of my corn allergy - in may be considered an 'inactive' ingredient to some, but my body thinks it's an alien invader! Oh, and to let you know how long I suffered, the headaches started in 1965. I got the fibro diagnoses in 2001. I have only been going to the pain clinic for 10 years - I am 67 years old and will be 68 later this year.

I'm getting diagnosed with Cushing's a disease, a rare disease, after many years of struggling and being misdiagnosed and told I was crazy and had psychiatric admissions (this disease also causes depression, panic attack, insomnia etc). Thank you so much for this video. I've met so many doctors who told me I am perfectly normal because I achieved important results in my life (a degree, driving licence etc). They always thought I was just being dramatic, they now think a brain tumor caused Cushing's disease and caused all of this. It lead also to me having osteporosis at 20 and a spinal fracture. Thank you again for this video, your words give me hope and you look like a super kind person! Hugs to anyone who's struggling with chronic and rare diseases in the comments :)

I really recommend the Bearable app for tracking symptoms. It’s comprehensive enough that I can log all my complex symptoms but the interface is very manageable and way less overwhelming than other apps I’ve tried

I'm trying to get into med school and have wanted to be a doctor since i was very little. My biggest motivation has been my mum who has a very severe version of marfan syndrome. Luckily I have been able to learn about Ehler-Danlos syndrome a lot and hopefully I can help people get it diagnosed easier and earlier some day.

This is so useful for me right now, I'm fighting for a PoTS diagnosis after dealing with "long covid" for a year and just need support and unfortunately here that means needing a diagnosis and fighting uphill for maybe $500 a month

It took me close to 11 years to get a diagnosis, and because it’s a diagnosis of exclusion (plus the oh-so-fun medical gaslighting), I definitely still deal with a lot of doubt/invalidating my own symptoms (funny how that happens when your symptoms get invalidated for years 🙄). The online chronic illness community has been so invaluable for me, not only in making me feel less alone, but also in helping me take better care of myself!

The mental health struggles while seeking a diagnosis are SO real. I have CPTSD in part from medical trauma and medical gaslighting. It's frustrating seeking a diagnosis for a physical problem but just as problematic to not be believed or treated with kindness when seeking mental health help. I am allergic to everything and I've had psychiatrist after psychiatrist not believe me about my allergies then not help me because "i refused treatment." I didn't refuse treatment, I'm allergic to the medication and you refuse to adjust treatment plans. I still don't have a full diagnosis or treatment plan for my physical symptoms. This is coming from a place of huge privilege in the US, but if you can pay out of pocket to see a specialist it might be worth it. I've received all my diagnoses so far by paying privately and bypassing health insurance.

I know this is completely off topic, but I keep admiring it: Your eyebrows are _on point_ today! Gorgeous!

Aunt / uncle is a pibling. The same way that niece / nephew is nibling. Both based off sister / brother being sibling. Edit: Pibling is the contraction of parent's sibling.

Took nearly dying more than once for doctors to listen. I’m from United States. Meds and tests are very expensive. I often hear the phrase (you’re too young to be this sick).

Excellent advice. My sister was told it was all in her head until she was so physically ill she could no longer function.