When I was 21, just home from my second tour in Vietnam, I started experiencing sharp pains in my groin. I went to a doctor, who told me he could find nothing wrong with me. The pains persisted so I went to a second doctor. He told me the pain resulted from the "fact" I wasn't having enough sex - his less-than-scientific medical opinion was that I had "blue balls." The pain persisted so I went to a third doctor who said I was probably suffering from "combat fatigue" caused by my two tours as an infantryman and later as an adviser to a Vietnamese infantry regiment. "That can result in odd pains..." I finally went to a fourth doctor who - correctly - diagnosed me with testicular cancer. He sent me to a specialist who demanded to know why I had waited so long to seek treatment... a day later I went into surgery. Months of chemotherapy and cobalt trreatments followed. Years later I started losing feeling - and strength - in my hands. I went to a VA hospital where the first order of business was to tell me that I was not eligible for a disability. This was before a doctor had even seen me. When a doctor did finally see me, she diagnosed me with carpal tunnel syndrome even though my symptoms did not indicate that. When I said that she wrote in my medical file that I was "non-compliant." I'm still not sure what that means exactly. .... I won't go into the whole sad story but it turns out I have diabetes and a primary symptom is losing strength in your hands. I went to several other doctors about this problem, which was getting worse, until finally one of them did a blood test and said, "oh yeah, you have diabetes likely caused by your exposure to Agent Orange in Vietnam." The point - which you so eleoquently made - is that you have to be your own advocate when it comes to your health because far too many doctors are not advocates for their patients. To them, you are just another fee. Thank you for sharing your story.
My God, you are so right. When it comes to health, we have to be very awake because the doctors aren`t. I wonder how many soldiers fell ill after the Vietnam war, the Golf war, the Afghan war, the second Iraq war, and all the other wars on this planet. Our governments fail us, our doctors fail us, sometimes our parents and families fail us, our so-called friends fail us, and in the end, our health "fails" us. Isn`t it funny, when we don`t need anybody`s help so many are willing to provide it? When we are in need, helpers and "know-howers" seem to have disappeared into thin air. Man, one has to be tough to be a human. Thank YOU for sharing your story. Sending love and best wishes your way❤
That I know of, the soldiers that served in the first GULF war that all got sick because of the vaccines and injections the army gave them so they wouldn't be susceptible to bio and chemical agents the enemy might use on them NEVER got acknowledgement, recognition, compensation or treatment for their illness. They were all just swept under the rug. That's our government!
Thank you. I've had parallel experiences. A classic example was one doctor who diagnosed my chronic cough as "depression". There was a terrible doctor that I suspect was a sociopath, a friend who had a heart disorder diagnosed by a cardiologist went to the terrible doctor - who diagnosed mononucleosis instead of heart disease - based on nothing, no tests or anything.
Sadly, some counselors do. We had had problems from day one. My sadistic, sociopathic covert narcissist of an ex-husband insisted we go to counseling. All of our problems were my fault. (Did I mention that he was a pathological liar?) The therapist talked to him first. He was in the office for about half an hour. When he came out, he gave me a smirk, almost instantly covered. (Nowadays, we'd say that his mask slipped.) He told me the counselor was ready to see me. I had barely sat down when the counselor told me that he didn't want to hear a single word. He said my ex was a fantastic man who I did not appreciate. (Did I also say that my ex could charm anyone's socks off when he wanted?) The counselor said that my family and friends would be better off if I committed suicide! I walked out of the office in a haze. I don't remember the drive home (well, the house where we lived; I wouldn't call it home). I don't remember cooking or eating dinner. I do remember crawling into bed and soaking my pillow with tears. I began to wonder if the counselor was right, if everyone would be better off? Suddenly, I remembered a friend that I had had many years before. He always had my back. I knew he would hate it if I did something stupid. It took me another ten years to get out of that toxic relationship. I reconnected with the friend I thought about that night. We have been happily married now for over ten years.
Both my parents were abusive, so I ended up with CPTSD & chronic depression. it made getting my physical diagnosis harder, cuz those were correct, but I know my depression, I've been depressed since I was 9. My first therapist put me off therapy after 1 visit, until I met my step dad's mother who is a therapist (step dad is the only good parent of my 4 parents he is the best). That first therapist flat out told me that he was surprised that I was not a homeless and pregnant with a drug problem with what I told him. I was 14 or 15 at the time, and had tried to unalive myself when I was 9. It literally took my grandmother finding someone she trusted would mesh with me for me to feel OK attempting therapy again. It is not even just if you dont feel comfortable with what a therapist says. The person my grandmother found was what I needed to try again, and while 1000% more understanding than the 1st one, just long term was not a good fit for helping with the core issues. Helped to get over the wall that the previous one created, and then we realized that it would not be a long term situation. The best one I found unfortunately only works with uni students, and the uni only provided a certain number of visits normally, but because of the whole situation she took me on as a regular client & I saw her probably every other week for at least 2 years of my time at uni, until I left. Still have not found anyone who has been as good of a fit, but also am in a way better place.
As a person with an autoimmune disorder as well, that doctor's response was infuriating. When I hear "eating food makes me feel sick" the first thing I think is "oh, you are probably having an allergic reaction." It happens to people in my family all of the time because we all have bad allergies. Why in the world would they go to the extreme first? Mental diseases should be after they tested for everything else not before. Especially when there is no history of mental illness and an already diagnosed autoimmune disorder! My mom got that kind of flak from doctors before so she changed to a doctor who is always learning. He specializes in autoimmune and is constantly educating himself. My mom trusts him because he actually wants to cure his patients. It's funny though because when she disagrees, she doesn't budge anymore. At this point, whenever he prescribes a new treatment for somebody in our family, he tells my mom to read the book about the treatment because he knows she's going to do her research first XD
Yes! It is amazing how doctors are so fast diagnosing certain things, sometimes completely ignoring the patient experience! Maybe it has to do with farmaceutical business? 🤔
Dr. Brooke Goldner )Goodbye Lupus) is one of those Dr.s who cares about people & has helped people heal of many different autoimmune diseases. Her info is free on line. She charges to meet with her, but you can figure out what to do on your own for free.
I'm an elderly widow (76) who was diagnosed with Multiple Sclerosis only a few years ago. Your story about fatique resonated with me. I was always told I was depressed when complaining about being exhausted from minimal activity. I am also very clumsy and uncoordinated, which my Neurologist says sounds like I had MS since childhood or high school at the latest. And my adult diagnosed dyslexia was labeled "sloppy & careless" behavior. I didn't feel I caused my problems either, like you. It was very different in the 50's & 60's when I was in school. The student was always blamed for inconsistencies from standards. I was able to weave myself around the difficulties, but at a price to my self worth and confidence. I'm pleased you have found your way to overcome the injustices heaped upon you! Brave, resourceful, wonderful you!
You will probably find out you have àspergers orcimbined ADHD just lost my mum.to severe ms heds surelyhad àspergers I have asperger's heds fybromyalgia cfs
@@chanaheszter168 things not to say to someone with MS…. Terri Wahl had whole body chemo to obliterate her immune system as a “reset” like Selma Blaire. THEN she did the diet. Likely the chemo reset would have worked without the diet. Read about her before suggesting such a dangerous treatment.
I am so sorry that this happened to you. I was also mistreated by a therapist. As an RN, I can tell you from my experience working in a hospital that many of the people who work in mental health are interested in mental health because they are not the most stable or mentally healthy people themselves.
Yes, true, but that can be a good thing. As long as they deal with their own problem appropriately a therapist who can relate to the client's suffering will have more empathy than a therapist who's never had mental health issues.
@@EmVeeBeen we're not talking about major mental illnesses. I was a secretary for several mental health teams over the years. It wasn't unusual for the therapists to have a past history of depression or an eating disorder or an addiction they've overcome. Some had troubled families of origin or histories of trauma. Many were a touch neurotic too. Face it, without any of these it's unlikely that a person would be interested in the field.
Very true, this is very common in the social sciences. My professors told us to basically make sure that our own mental health issues, if we had any, were addressed so we could be clear-headed and help others. Many people in mental health industry go into mental health to "fix" themselves, was what our professors told us. There are also bad eggs who want power and of course, many wonderful professionals who are loving and healthy and just want to help people get whatever holistic help they need. These are the ones you want in your corner, who refer you to nutritionists, especially if they think you have an eating disorder, and sleep professionals, etc.
As a medical student, thank you for sharing your experience. It really opened my eyes to look out for more unlikely diagnosis and not just the basic ones. I'm so sorry you had to go through this, but I'm glad you got diagnosed properly at the end :)
They say think horses not zebras because you're more likely to see a horse than a zebra. I think some doctors internalize that as zebras don't exist or they'll never see them. Thanks for keeping an open mind. I'm currently struggling for diagnosis and seeing someone coming into the field with what I wish I had available is promising.
I have yet to meet somebody that I had some sort of serious illness. That was not something common like an ear infection, or a broken bone that was treated correctly and fairly by the doctors doctors. Today are great at common illness when it comes to real severe disease, this is what we go through on a regular basis, almost ALL of us! We are told we are stupid and don’t know how our body feels. The healthcare system in USA has become about prescribing pills and not about making people healthy and this is the effect of it.
I'm an autistic woman and it took me 30 years to do the work that health professionals are trained to - but wouldn't. I too was put on zombifying meds as a teenager and quit on my own after a year. It angers me how such medication is pushed even on patients, as I was, whom it clearly does not help (I would just sleep all day and lose some neurons on the pills). I believe there's more focus on sedating our symptoms than solving them. God forbid I'd mention to a doctor a rare physical disorder. They sense my neurodiversity, they frame me as a somewhat young woman, smile with knowning carelessness and start prescribing those same meds. They get offended when I reject the suggestion. I've stopped trying to heal my body because even in front of visible symptoms I would be dismissed. There are studies showing that women tend to receive psychotropic medication when describing pain, when men are simply put on painkillers. There's only that much condescension I can take on, especially from figures that are supposed to care and express knowledge and hope. I agree about the lust for power in this, and any other profession that allows it: it's an obvious reality that's deemed in bad taste to point out. Sad when our happiness is at stake.
I hear you. I've never received a formal diagnosis for ADHD after literally being laughed at by a physician for suggesting it. My son has it and we have so much of the same lived experience but he was fortunate enough to have been hyperactive as a young child and therefore easier to diagnose.
It's always been like that. Back in the day so many health conditions were lumped under 'hysteria' for women, and men usually didn't get diagnosed at all, because they wouldn't even talk about it. I'm not sure which is worse! But if you are going to go tell a doctor about your symptoms and make their life easier in diagnosing you, they ought to have the basic reciprocal courtesy to take you seriously and put in the time and effort to make the right diagnosis the first time around. I mean, I always just assumed that was a doctor's JOB. But you deserve to get the right treatment. Don't give up on finding the right health plan for you. There's loads of information out there, and frustrating as it is to feel we are doing the doctor's job for them, in time we can often figure out what is wrong with us and what treatment we need ourselves, and it's harder for doctors to reject a plan that is already working because we've done our research and tried as much as we can of it on our own?
I don't know where you live and whether you have the luxury, but I and other ND women I know never get prescribed meds for mental illnesses instead of ones for bodily complaints in belgium. But then again, I don't feel like there's a big "meds for autism" attitude in my country. I'd definitely encourage you to look for a new doctor because you deserve treatment. No treatment could lead to so many horrible things, the current doctor is literally making you suffer or worse, shortening your lifespan, by not researching and treating your symptoms. I really hope you will one day find a good one.
The funny thing is, women have a higher pain tolerance than men. It's not a sexist thing, it's biologically proven. Or else we would die instantly before the second stage of childbirth was finished. So to tell a woman that she is not in pain and instantly thinking she is insane is an outdated and cruel medical practice that MUST stop!
And not just our happiness, but our *lives*! Looking back now, I showed symptoms of EDS in grade school (double-jointedness, excessive flexibility, being able to “pop” joints in and out, rapid heart rate) when grade school was the early/mid 70’s. Nobody said a thing and my parents never thought to have me checked. Even always telling doctors about my abnormally high heart rate never set off any bells. Now I’m 57 and have had my *first family doc* to take these things seriously. Don’t give up.❤️
I’ve always thought doctors should have hoops to jump through before they tell you its all in your head. Like they have to get a committee to sign off, or run a set of tests. Or something. So they stop blowing off people, especially young women. It happened to me and so many women I know.
I think sometimes (and I really mean sometimes, some doctors just aren't good at their job) it's because as a doctor you face many people who actually aren't physically sick or come to you with some self diagnosis that doesn't make sense at all. Experiencing this too often can probably create some bias over time. Also, some tests are very complicated and probably expensive, so some doctors are hesitant doing them if they aren't sure they are needed. And last but not least, depending on the country some doctors have to care for an incredible amount of patients in too little time
Autoimmune diseases often come with friends: celiac with psoriasis in my case. My GP was fantastic - my dermatologist is also amazing. It’s hard navigating multiple illness without feeling like you’re a hypochondriac. I’m glad you got the diagnoses that help you find better health!
I have Crohn’s and that came with arthritis, eczema, anaemia, heart palpitations, headaches, and my retina trying to detach because of inflammation. Sadly it’s only the specialists who know that this stuff groups together. The regular doctors are always so skeptical and I’ve definitely been made to feel like I’m a hypochondriac.
Oh boy, I've had health issues all my life. My story is somewhat similar to yours. As a teen I was constantly tired, in pain and just like I wasn't me. I got dizzy frequnetly and had this sharp pain in my lower right side of my abdomen. No one listend. Then I started having panic attacks, depression and anxiety, still I had to struggle to get help. Not untill I broke down at work did someone actually listen. I was diagnosed with depression and anxiety. Got therapy - group therapy - with the worst shrink ever. He just sat there waiting for the session to be over so he could collect his money. The ammount of bullying, and even physical fighting in that group was insane. Not once did he interfere. I wanted out but he refused to let me. I was held hostage there for three years! I was also put on various antidepressants and anti anxciety meds, which all gave me severe side effects like losing my eyesight. Yeah, I went completly blind eating the meds. My eyesight came back as soon as I stoped eating the meds. I still keep feeling tired, like all I want to do is sleep. I sorta functioned on autopilot and had gotten used to all the sprained ankles, bruises and joint pain. I was also underweight. Like you could see my ribs under weight, but I ate like a horse. My doctors just thought I should be happy I'm able to eat a whole cake and not gain weight. Fast forward a decade. I get more and more exhausted. Eventually I tell my doctor to do something, so he started testing for everything form arthritis to HIV (like lets rule that out too), I was sent to various specialists, one of which stated that I have hEDS, which is EDS-hypermobility. That explained my twisted ankles and joint pain. But nothing else. Then I read online a story about a girl who had ME/CFS and it all clicked. Told my docktor to see if that could be what I had and he just laughed at me and told me I was just burned out, nothing more. Well, two and a half years of waiting for the specialist (only one active in my country at the time), I finally got the diagnosis of ME/CFS. Turns out I also had severe D-vitamn deficency which when treated took care of most of my symptoms. The thing that triggerd my ME was my pregnancy. It ended in emergency c-section and during that sergery they found out that I had endomitriosis. Which explaind a lot too. The issue is that I only have ME and depression as formal diagnoses, even if hEDS is in my journal and so is endomiriosis, but those specialists weren't my doctors and couldn't give me a formal diagnosis. So now I've spent 5 years on trying to get someone to give them to me. I also strongly suspect that I am autistic/ADD. It took me over 7 years to get the ME diaganosis and who knows if I ever get assesed for autism. I've been missdiagnosed with all kinds of shit. Like Severe personality disorders only because I questioned my psychiatrist ( he lost his lisence due to too many complaints). I have made numerous written complaints to administrations (last one said "too bad, you don't like it here you're free to leave. So bye Felicia!"). My ASD referrals have come back as " we cannot accept this referral due to the patients journal not stating that she has ASD, therefore we cannot do an evaluation of her", or the very confusing "we do not accept referrals from doctors". The underweight issues turned out to be a combo of overactive thyroid, high metabolism and a gene that prevents me to gain weight. I feel your pain. I'm glad you finally have your answers and know how to fight for your rights! Stay strong and don't forget to be awsome!
I have endometriosis. Went undiagnosed for 15+ years. The amount of times doctors (female doctors, no less!) brushed off my complaints of severe pain was astounding. I finally found a MALE doctor who took me seriously and gave me a diagnosis and surgery/treatment. I feel you!
I just got diagnosed with two different chronic illnesses. It took 11 years! That sentiment of "my body's anxious" is the HARDEST thing to describe and you did such a great job!
I had that same experience. Body anxiety, not mind anxiety. Ive had both and they were somehow different and I could tell but nobody would listen. For me it really felt like my body was trying to tell me something was wrong and I just needed to understand how it talked to me.
I can’t believe that doctor threatened to commit you and then never apologized when you turned out to be right. I’m so sorry that happened, what an insane doctor. I love that throughout all of this you learned to trust yourself and really tune into what your body needs to feel well. I’m hoping I’ll figure that out someday too.
I was chronically fatigued for 20 years before a doctor (a psychiatrist, actually) suggested I change my diet radically. And it worked! Her best guess is that I have some autoimmune disorder; since the diet she suggested is a low inflammation diet. The fatigue is gone now; I wish we'd figured it out about 19.5 years earlier than we did.
"What doesn't kill us may leave us with psychological scars that take years to heal" YES I'm sick and tired about how the old '...makes us stronger' crap leaves the impression, that you somehow magicly get stronger. It doesn't mention how much time and selfcare is needed to not be left crippled after the 'what doesn't kill you' part. Thank you for sharing your journey with us 💙
I am so PROUD of you! While I have some minor and manageable chronic pain issues myself, one of my closest friends has yet to be diagnosed and it's crushing to see her struggling with no answers. She's also a literary nerd and a high achiever. Your story reminds me of her and I hope that she can also find a diagnosis.
My heart goes out to you. I find male doctors are the worst for women. I don't know how many times I was metaphorically patted on the head and told it's all in your head! I'm so glad you finally got the diagnosis you needed!
I remember being told as a young woman that my migraines were "all in my head". I said of course they were - that's the definition of migraines - but they were not in my imagination. At least I had enough presence of mind to change doctors. The doctors never said anything so ridiculous to my father, who also suffered migraines.
@@sweetdaydreamer8868 yes I agree, all my difficulties have been with female doctors - I follow some good (ironically female) doctors on insta who talk about how some drs don't listen to their patients, and most women in the comments say they've had difficulty mostly with female docs!
Well she said in the video it was the female doctor who threatened to put a feeding tube down her throat, and the male one who listened to her. Maybe it’s not a gendered problem and you’re just a misandrist?
Interesting - I've had the opposite experience. My female doctors have come across as patronizing and paternalistic. They have a lot of ego wrapped up in being right, so when their treatments aren't helping they don't want to hear it, and just want to blame the patient. Male doctors in my experience are more willing to let me have an active role in my own health. I'm sure it's not universal, and that there are great female doctors and lousy male ones.
While certainly not to the same extent, I can relate to being brushed off by doctors. I have a still-undetermined digestive issue, and when I described what I was experiencing to my former doctor, she just said that what I was experiencing wasn’t a thing and dismissed it. Fortunately, I knew enough to understand that just because I was being blown off didn’t mean that I wasn’t experiencing what I was experiencing, and I found a different doctor who is absolutely fantastic and all about figuring out what’s going on and getting his patients what they need.
I have had such a similar experience. It took me almost 40 years to be properly diagnosed, and I have a lot of what you have. It’s not for lazy people… it’s hard work to use these defective meat suits and make a life around our symptoms. I didn’t know you’re a fellow zebra, explains why I love your videos so much! 😹
I’m so happy that you’re honest about what happened. I cannot even fathom what you went through but you know that we’re rooting for you and supporting you along the way.
I’m so proud of you!! What an ordeal I recently got diagnosed with celiac two years ago at 31 years old, and the wave of relief was insane. Every symptom I had (brain fog, skin problems, fatigue, vertigo, depression, mood swings, digestive problems, joint pain) all diminished after a few weeks. I’m still having issues with acne that persists on my chin, and some tiredness on occasion but it’s so much less painful than before. Im thankful to have an amazing doctor that zoned right in on my symptoms (I put it off for so long because this illness starts small and just gets more intense over time and you don’t realize how much you’re suffering until it all hits together). I hope that autoimmune disorders will be taken much more seriously and wish you all the best in your recovery, Ellie! Thanks for speaking about this topic ☺️ I look forward to all your fun videos!
Hearing your story and how your clinicians blew you off totally infuriated me.... women in particular are often ignored or their pain/symptoms downplayed. I also get utterly fed up with the "lazy" label because it's a social pressure about finding your place in the economy and completely dismisses your legitimate issues. You have had to fight for yourself against a challenging body AND a medical community with a bias against women. You are awesomeness
Hi Ellie, I’m a 59 year old woman and a new subscriber, who is thoroughly enjoying the content on your channel. Your story mimics my own in so many ways. I have multiple autoimmune issues also. Two of the most awful comments I’ve heard from healthcare “professionals” are: Me at age 20: I feel sick every time I eat. General practitioner: You’re underweight for your height. You have anorexia nervosa. Go home and eat a hamburger. (Can you believe he said that? No tests were undertaken; psychological, bloods, nothing!) Me at 32: On the anti-depressants I became suicidal, so your assistant suggested I stop taking them, which I have. Pain Management Specialist: I can’t help you if you won’t be proactive in your recovery! After so many years of being told all my issues were psychosomatic, I received my first diagnosis in 2000, which opened the door to understanding what was really happening to me. By this time I was an over achieving mother of four, and doing it all on an empty battery (not narcolepsy though, thank goodness). I have come to the conclusion that some doctors/specialists become such, as they have a desire to help others, and some do so to prove how clever they are (these are the ones that believe you, or other medical professionals, couldn’t possibly know more than them). I’m happy you’re now in charge of your health journey, as I feel I am with mine. Keep up the great content. I am, and always will be a Jane Austen fan.
Omgsh that person should have their license taken!!!!!!! Thank goodness one thing my therapist does is to help me advocate for myself and help me to remember that I am not “mentally ill,” I am a human being who struggles with mental illness. I’m a PERSON! And I’m valid and how I feel is valid. Nothing is invalid due to my mental illness. Anyone who EVER tells y’all otherwise, you need to get AWAY from!!! 🥺 Also after years and years and second opinions, I finally found a sleep specialist to evaluate me. They thought I had narcolepsy at first. Now we know I have RBD (REM behavioral sleep disorder). I’m not paralyzed during REM sleep. Which means I’m not getting proper REM sleep! Explaining all my narcoleptic-like symptoms. I’m so here with you!!! I’m so so glad you finally found professionals who LISTEN! ❤ I’m also struggling with not being able to eat. You spoke my exact thoughts and physical feelings when it comes to food. You’re making me really think about going back to the doctor and asking more questions about this!!!
My dear Ellie, I am sooo very sorry that you had to endure all that. You are such a delightful person with a wonderful sense of humor and zest for life. I’m glad you’re on an upward trajectory, and I’m sure you’ll make the most out of your life. You’re a blessing to all of us who watch your videos. I wish you all joy! ❤️
I am SO sorry for the way you were treated and undermined, all while experiencing enough difficulty from your body. I could relate to so much of what you were saying. Your comments on the typical doctor's approach and methodology is bang on, sadly. When they can't find it, they tell you [me] "it's your diet, exercise and mental health" and then stop looking. I am at the same time shocked that you weren't taken more seriously after your first conditions were discovered, but also sadly not surprised. I have two autoimmune conditions, but it wasn't until I had cancer that anyone started taking me seriously, which in my case was pointless as my autoimmune conditions have a much larger impact on me than my cancer did. I am so glad that you learned to advocate for yourself, but sorry that you were forced to so out of necessity. Thank you also for that point about bad therapists ...both doctors and therapists are not God, their word isn't necessarily fact. If it doesn't sit right with you, try another doctor or therapist. most importantly, trust yourself...you are the expert in your own body. Thanks again for sharing this.
Type 2 Diabetic here. Diagnosed as a teen. I actually had a decent doctor that went "Well, she'e over weight. I see her father for type 2 diabetes care. Better monitor her for signs as well." They caught things early enough that I'm on fairly low doses of meds and can manage with diet and exercise. And that's mostly because I was a bit of a rebellious teen who didn't take meds regularly until things got too serious
Thanks for sharing your experiences with being misdiagnosed! I was misdiagnosed not with a chronic disease but with a stroke. Took two trips to the er before they caught it. I was high functioning which made it harder to detect, but when I first felt it, I said to myself, I’m having a stroke. You are so right, you have to listen to your body! And you have to communicate that to your doctor. Long story short, worst experience of my life but I’m almost 100% back to normal a year later. 💜
You're a queen for surviving and sharing your story! I had a similar experience - been struggling with PMDD, ADHD, and GAD and have finally been diagnosed.
Wow you’ve been through so much! Reminds me in part for Jessica Kelgren-Fozard’s journey to diagnosis. It’s so scary to think you can be medicated for a depression you don’t have 😱 those meds can be a journey in themselves. I can’t even imagine the sanity it brings to have your proper diagnoses 💕
I was watching your video and practically jumping up and down (on the inside), screaming out, “Me too! I’m not alone!” I, too, was misdiagnosed and shuffled from specialist to specialist starting in the 9th grade. It seems puberty triggers a lot of things in certain of us. My journey has led me to a diagnosis of Fibromyalgia, as well as a host of other little things. I am still trying to figure everything out with my doctors, and I’m 52 now! You are not alone! Thanks so much for sharing your story. I know it helped me to know there is at least one other kindred spirit out there, willing to share her story.
Puberty is a trigger for a lot of stuff and it can make things muddy and more mysterious. My teen doctors would never have been able to figure out my disease, IIH, with my symptoms then. It takes going into crisis (usually in your thirties) to get the disease diagnosed and you have to be super lucky to have a doctor who is open to zebras,
So sorry that you have to go through all that! I was diagnosed with Chiari Malformation two years ago, after years of earing: you are just stressed, it's just a headache, you think abut it too much, just a migrane... Good lord! Sometimes doctors are just unbelivable!
Super excited and happy for you that you found doctors that take you seriously and you got your diagnosis! Unfortunately I can’t watch this video because I am still in the undiagnosed phase and this is all just super triggering for me, so if there’s anyone else out there still struggling know you’re not alone!!!
I think the key to a lot of these stories is changing the mindset of visiting the doctor. I used to see doctors like teachers, they knew more than me, I had to listen. In reality, it's more like I'm the boss of someone who has a skillset different than mine. They know things I don't, but ultimately I'm the one in charge and if they don't listen to me I can fire them. Good luck on your journey!
That’s a hard road. I hope you find the right doctor to get you the answers you need. There’s so much relief in getting a diagnosis and to be validated that it is not all in your head… even if you have to live with the diagnosis or diagnoses for life. Rooting for you. (I can’t listen to this now either; it’s been a rough couple weeks, even though I am diagnosed)
Getting the right diagnosis, especially when you have rare conditions is so frustrating. I also have narcolepsy, mast cell activation syndrome (MCAS) and celiacs. My MCAS is paired with orthostatic intolerance, autonomic neuropathy, and gasteroparesis. It took years and several misdiagnosis to finally figure out what was causing all of my symptoms. I was diagnosed with a conversation disorder and while it's an accurate diagnosis and I do occasionally have stress induced conversion disorder attacks everything was blamed on the conversion disorder. I'm glad you were finally able to figure out what was causing all of your symptoms and that you've found a way to work with all of your diagnosis.
Lyme Disease, Pernicious Anemia, and suspected EDS here! I know what it's like to get tested and have "nothing wrong" with me. And then being called lazy, a snob, anti social, too sensitive or whatever, just because I didn't have the energy to keep up with non chronically ill people. I'm so glad you finally got a diagnosis! You should check out the Cusack protocol for EDS! I'm busy working on my Lyme and Anemia, but if I get better with those and still have EDS symptoms I'm definitely going to try it!
My husband was just diagnosed with EDS after suffering from the symptoms for about 15 years. He was treated as a psych patient since he was a teenager much like you were. I hate hearing how common it is but it's also relieving to know he's not alone in that experience.
My mother has MS so I know the signs after watching her live with it for years, so when I started showing these same signs I asked my doctor if I could be diagnosed and they said "No, MS is not a hereditary condition!"... It took me 6 more months and 2 lost jobs when I landed in the emergency room (for something else.) and they saw the signs just by looking at me... My doctor did apologize for this but she shouldn't of had to and she should have just gone with my concerns because an MRI is not that hard to recommend...
Thanks so much for this video. I struggled with lung illness for 12 years before I was finally properly tested and diagnosed with eosinophilic asthma. When the doctor finally told me i broke down crying out of joy. Finally, someone listened to me. This awful illness has a name and a treatment. Thanks for talking about these things. It can be very lonely and isolating. It's nice to know someone I like so much gets it.😊
Wow! I usually don’t watch videos like these, but the way you explain things in such a loving and compassionate way, I watched the whole thing. I’m so glad you finally got the help you needed to live your best life ever. I’m rooting for you and all the people to just keep seeking the help they need. Never give up; you never know if your just one Pinterest post away from finding a solution.❤️
This video… this. Video. I felt all this so much. From the fatigue as a young person (undiagnosed mono. Imagine spending high school with mono and being told you are depressed and lazy) to the bad therapy, to the bad meds I “needed” to take that made me feel so much worse, to the desperate search for doctors to the googling and anxiety disorders and all of it. I’m so glad you have answers and are finding a good path forward. I’m sorry to see so many of us are in this boat.
Sweet Ellie, I am so sorry that all that happened!!! I have a very similar story and it sucked. If you haven't already looked into neuro-rehabilitation, neuroplasticity programs like DNRS or Gupta, etc I would highly recommend it! I did the practice for a year and a half and I'm now fully recovered from all the autoimmune diseases I had painstakingly gotten diagnosed with. It sounds too good to be true, but it saved my life. Our brains are so intricate and amazing! Hugs to you 💓
Whoa! You’re an army?! I recently found your channel, and I love it! Lol you don’t know what a shock it was to see the Proof poster! Sorry to hear about your chronic illnesses. :( My mom suffers through so, so, so, many of them, that our whole family thought she was either cursed, or sometimes we even thought it was maybe mental. Like, it’s taken decades for her to find a doctor that is actually is following through with all her illnesses, and sending her to specialists. Like our family felt so useless because she was in so much pain, and there was nothing we could do. Glad to hear you’re doing better now.
When seeing your doctor is as traumatic as the condition you're going there for. Thank you so much for sharing your story. It breaks my heart that there are way too many of us going through the hell of not being listened to. I have hope though, saw a new doctor who listened and has treated others with chronic fatigue syndrome. I went to my car and cried.
I am proud of you, too! I started eating a carnivore diet (meat, eggs and a little cheese) which improved my health dramatically. I stopped listening to my doctor years ago! I would never go to therapy after working in a psychiatric hospital as a social worker! At a party the therapists were making fun of their patients! I was appalled and didn’t socialize with them again!😳🙄🥺
That tends to happen when too many therapists work under the same roof. What begins as appropriate and necessary debriefings with colleagues can over time devolve to a culture where clients become the butt of jokes. It's best if the health care team sets up structured supervision sessions so therapists can get advice on their challenging clients and also deal with their own vicarious trauma. Then "hallway consultations" and inappropriate discussions of clients in social settings are less likely to happen.
@@sweetdaydreamer8868 Honestly people should just keep their mouths shut about other people's diets. If this diet doesn't work out in the long term, she'll make a change. If it does, then great, and no amount of pearl clutching about it will matter. I've been on diets that were supposed to be the end all be all, the master cure, the optimal way to live for health and long life, yadda, yadda, yadda. You know what I learned? The diet that is healthy is the one that makes you healthy. The diet that puts you in the hospital despite being the "only way to eat" is garbage and nothing anyone says can change that.
Oh WOW! I was describing my salt cravings/extreme low blood pressure/high water intake to a friend yesterday and she mentioned I might have POTS. One thing she asked me about was the sudden increase in heart rate and when I thought about it, I described it as “sometimes it’s like my body get a surge of anxiety and I am looking around to see why I feel sudden anxiety.” I can’t believe you just said that (around 22:00)! Very interesting, thanks for all the information you shared along with your journey to healing.
ELLIE, IS THIS A BTS POSTER BEHIND YOU?????😳😲 I didn’t know you’re a fan - they’ve helped me SOOO MUCH through the years, omg! Also - (my name is Ellie too btw!) - I am so sorry for everything you’ve had to go through! As someone that’s dealt with multiple mysterious conditions through the years, and someone who is tired all the time, whose joints hurt and who deals with so much anxiety on the daily - I understand how hard it is. I am proud of you for trusting yourself and not giving up, and being at a place where you can manage it! I really like your content, thank you for everything you do, even tho it’s probably hard some days to film and edit. 🙏♥️
I am so sorry you had to go through all that. I learned to advocate for myself after I was in an accident in which I ruptured a disc in my back, but my doctor insisted I was "depressed". He eventually sent me to a physical therapist who realized within moments of baseline testing that it was not in my head, but I suffered agonizing pain for about 3 months before I was able to have surgery. I feel very lucky now to have a doctor, a dentist and an optometrist who all pay attention to me and are always willing to investigate any issue I have. Good luck as you rebuild your life and health.
Thank you so much Ellie. It is very kind & generous of you to share your health realities. I too have had some very similar experiences & it is very helpful to hear of another person’s similar story. I’m 70 & my family still believes that if I just tried harder I would be all well-& it is my fault. I feel such empathy for you I had tears. I like the idea of you telling your past self that it is not your fault. I try to do the same by sending love back in time to my earlier self. No one believes me that doctors are not always very bright & ask why I do not just think whatever they tell me; or why do I question them. In my state in US we have very mediocre health care providers every where in the state & I can not afford to go to good medical centers where I could receive the help I need, like John Hopkins, Mayo Clinic. Places that look at whole body for more complex problems. Every surgery I have had done here has gone wrong. And my diagnoses for a variety of problems were very wrong & by the time corrected it was too late for me. I too had to find my own diagnosis in many cases. I also was threatened as you were & still am. Thank you-not a big enough phrase to express my gratitude. I do not feel so alone. I wish you the best health you can possibly have & happy trails in your future.
This video is incredible and very personal to something I’ve also gone through… I’ve had doctors refuse to take seriously pain when I was nearly pass out because “You don’t look like someone who’s in pain”. It’s very important to be persistent, I really appreciate how you’re using this platform to drive awareness. I’m a long time fan of the channel, love this new part of your content ❤️
I’m sorry you went through the bad experience with doctors. So proud of you for knowing and sticking up for yourself. It took me 12 years to get Celiac diagnosis so I understand. I got POTS from Covid vaccine too, so I can sympathize with your illness. Please take care of yourself, you’re so sweet and smart and I love your channel. 🥰
I'm so sorry this happened to you. I also was told that my chronic illness was just depression in high school (I have a host of digestive disorders) my doctor even suggested I was just wearing my pants too tight! I was lucky that the therapist they referred me to was amazing and quickly told the doctors that I wasn't depressed, not to put me on anti-depressants, and go back to the drawing board. Glad you eventually got it figured out!
When I was diagnosed in my mid-20's with Hashimoto's Thyroiditis, I was in a serious relationship, just starting my career and a perfectionist. I've spent the last few years being criticized for being lazy, being told I shouldn't do things I want like have kids, get a pet, upgrade to a harder job, because I won't have the energy and I'll fail. It's made me feel stressed and depressed. Luckily, I'm the kind of person when someone tells me I can't do things it just makes me want to succeed harder. Thanks for this video! ♥️
Currently going through the doctor rigamirole to figure out what's wrong with me - I suspect EDS and MCAS. I spent so many years growing up being told "it's just growing pains", or that people thought I was faking my symptoms. Thank you for making this video and I hope going forward you only have doctors who believe and listen to you x
One of my friends was diagnosed with EDS. She went through a bit of the same situation where she had to go to multiple doctors and have multiple tests done before she found a doctor who listened to her and looked through her medical records and was able to finally diagnose her with EDS. It took her a long time to finally get that diagnosis.
I've had the same Dr since 2008, and we would treat the symptoms, but just could never put an actual reason to why a bunch of stuff was happening. It did not make sense. We were just not putting my dizziness, constantly spraining ankles, back issues, weird stomach issues & a bunch of other smaller things that happened, not all at the same time but across 13 years, together as being from the same root issue. It was only when I stumbled on a "draw my life" video that I had seen when I was still in high school that I was like, wait a second, I relate to this wayyyy too much. Asked my Dr (once I remembered to... I also have ADHD and wil forget things I need to bring up to people...) and she literally was like "... ... my cousin has that why did I not think of that... I am so sorry, for that, give me a second I'll go get the criteria and we are gonna go through it." It was really a moment of everything suddenly makes sense & we got to the answer at the end. The only thing that changed was that now that we know there is a specific cause, I can get tax credits & my PT prescription is now for just whatever hurts when I go in instead if specifically my ankle (injury caused by rolling my ankle by walking + an extra bone the size of a golf ball just above the arch of my foot that took 3 years to figure out it was not just 2 "normal" bones fusing together). It is a genetic thing, so at the end of the day, all you can do is treat the symptoms. It is very much still worth having the diagnosis, cuz I can just say "I have ESD, look it up." instead of "well these joints are loose..." that the best response I've gotten was "everyone says that..." and then my podiatrist proceeded to wiggle my big toe for a solid 20 second "oh... you were not joking..."
I'm sorry you had to go through all that, Ellie. It's a testament to how awesome YOU and all the others who have shared similar stories in the comments are to keep fighting to get the help you need instead of getting discouraged and giving up when nobody would listen to you.
You don’t say whether you had any support from your family, Ellie. If you went through all this alone it must have been really tough. Well done for fighting for your diagnosis. My daughter had a similar experience at the age of 14/15 - and her mental distress might have led her to therapy, but I saw she had physical symptoms too (digestive problems, tiredness, gynae issues and chronic pain). After keeping a health diary for 6 months she was diagnosed with CFS. A few years later when her health worsened, I Googled her symptoms and it came up with EDS. It took two more years to have it confirmed at the age of 22. It’s a complex illness and is frequently misdiagnosed.
POTS is also connected to the Vagus nerve, which can be compromised by trauma. Of course, without the Vagus nerve, our organs don't get their orders from the brain to actually do anything, so if it stops working so well, you can get very sick or even die. My Vagus is literally falling apart (trauma-caused) and if I don't heal it, I'll die in due time. I've been doing EFT directly for it and it's been getting better! My adrenals are suddenly working better, my ovaries are working better. My Vagus nerve exercises do help, but it's like stretching a muscle--you just feel better until you need to stretch again and nothing's being healed permanently. While it has to be very slow to heal, I just hope the healing of the nerve is done in time before my heart stops beating. Congrats on figuring it all out on your own and realizing doctors aren't really interested in helping if you are a strange case. Most will never go that extra mile for you, as we all expect them to. But you will go the extra mile for you and sometimes you just need to think and act outside-the-box to get the help you need.
A doctor once miss diagnosed me and prescribed medication that would have exasperated the symptoms of what I suspected I had, they also in the same appointment refused to run tests that would have correctly diagnosed me. I switched doctors, which is privilege, got the correct diagnosis and then went back to the first doctor, told them they were wrong and that they didn't listen to me and I demanded an apology from them. One of the best moment of my life tbh. Doctors don't know best and they certainly don't know everything. They will never be in their patient's body, to feel that they feel. Advocate for yourself and if possible always get a second opinion and do everything you can to find a doctor who listens and actually wants to help you.
All of those horrible doctors. I've had my fair share, but never any so horribly blunt. Not being listened to is a huge problem. I gave up after not finding answers to a few problems I have, and you've inspired me to stop living with the issues and try to find answers.
What a journey! I'm glad you've been able to discover what's going on. I have many of the same conditions that I only figured out from googling and then taking it back to a new doctor who listened to me to confirm. Thanks doc. It's so sad we all have such similar stories.
You are great! I am so glad you got help finally! I have a similar story as far as the chronic illness. For two years before, I was diagnosed with Rheumatoid arthritis, I was told it is in your head, nothing wrong with you and etc. I was losing a lot of weight which I was trying to do. But, I was in so much pain, I was popping pain pills and I didn't want to get up in the mornings and tired all the time. One doctor finally told me to get off all meds, which I did, but it only helped a little. In the meantime, I was researching, and all the symptoms I had pointed to RA. So, I made an appointment to a rheumatologist and he took one look at me and said he thought it was RA. So, I had to wait for blood tests and it was RA! I was actually happy I was right! It felt good. Since then, I keep going with each new change chronic illnesses bring. Love your videos.
You are amazing for speaking out about your journey and diagnoses!!! I'm trying to figure out why I'm having chronic fatigue/brain fog etc, and I'm running into a lot of roadblocks, too. I am doing research and pushing my doctor to look into specific diagnoses. I'm leaning toward an auto-immune issue. This video is making me feel like I can get it figured out!
Thank you for a great new video Ellie! I’m so sorry you went through all that. Thank you for being who you are and sharing/creating so much content. And keep being awesome because you’re the one that’s really awesome!❤️
I also spend many years struggling against doctors that gave me wrong diagnosis... I know what you lived... You are a very very strong woman!!! Bravooo!!! 😊👏🏻❤
I am so sorry you went through this. I went through something similar when getting diagnosed with mine and even today during chronic illness flares where I am not able to be treated by my doctor when I am out of state. It’s not ok that the medical community treats people that way. Thank you for sharing to let your experience help others
This video was a big help. I’ve been struggling with all these things too. I’m still fighting doctors’ biases to overlook a patient’s intuition and the mental illness labels they keep throwing my way. I’m definitely going to bring up the “trifecta” at my next appointment. It all must be connected somehow for us both to have so many of the same problems. Thank you for telling your story.
I swear we zebras have a sixth sense. Did I actually know, no probably not, but when you mentioned your health and breif illnesses I had an idea of EDS. I was diagnosed with EDS at 8 years old because of my immune system and fatigue, then when I was 12 I had a flare up and have been in lovely chronic pain for years now. I feel what you said about missing school and lazy-ness I had a therapist like the one you mentioned. Not the best. I appreciate you ellie
Amazing advice Ellie and I'm so impressed with your bravery on taking care of yourself, spreading the love and calling out the truth of abusive professionals. Light and love to you!
Thank you so much for sharing this! As someone who is currently trying to get a diagnosis, it was reassuring to hear that eventually you got your diagnoses and found doctors who listened despite dealing with dismissive healthcare workers similar (although likely even worse) to some I’ve encountered. Edit - I’ve been reading comments. Does anyone here want to start a support group for those of us struggling to figure out our conditions/get them taken seriously?
Dear Ellie, I am glad that after a very long struggle and despite all the erroneous and harmful professional advice you have been given that you have finally pinpointed out your health problems and are now on your way to living the best life possible. In my long experience, no professional - doctors, mental health workers, lawyers, accountants, etc. - will ever admit making a mistake and offering an apology.
This was so relatable in so many ways. It's been 5 years since my 2nd burnout from chronic stress & I still have not recovered because trying to find help has been so difficult. My GP just wanted to lump my chronic exhaustion under the depression umbrella & refused to believe burnout is a real condition even though it's been recognised since the early '80s. I have finally found a GP who is going to refer me to a chronic exhaustion specialist. As for your personality trait of perfectionism, I totally get that too. Perfectionism & people-pleasing traits are how I burnt out twice.
Thank you so much for this video, I am currently mustering my courage to change doctors in order to get properly diagnosed. My current one likes to shout at people and belittles them -.- It is a real tragedy, that once you get (mis-)diagnosed with a psychological disorder it gets so much harder to get people to listen to you even though you have so much less energy to get them to listen. I wish you all the energy and happiness in the world! Also kudos to your cat, he is looking very handsome for a senior ;-)
I have a lot of learning disability’s autism and am what is known as twice exceptional where I have really strong strengths and really bad weaknesses. Took me until 8th grade to be diagnosed because every one thought I was just being lazy. I’m also currently being checked for EDS and something I don’t remember the name of that makes me dizzy constantly and have severe brain fog. It’s been years but I finally found a team of doctors who actually listen and try to help and I’m doing a lot better
Ellie your video made me cry with empathy. I used to think the “you’re awesome” part of your videos seemed odd but I suddenly understood why you say that & that you REALLY mean it! My own issue is chronic migraine. It got set off in college in a painting class by a flashing fluorescent light & got worse over the next 40 years until I was having 15 to 20 a month. I’m at about 11 a month now. There are now many wildly expensive new therapies for prevention that I’m working my way through. The frustration of family thinking I brought them on myself & that being sick was somehow self serving emotionally was & is an issue. When I go a whole 7 days without migraine I am so happy! I feel like my true self again. I “look” at my head & it just feels clear. I’ve had to set so many limits on what foods I can eat, drinking nothing alcoholic & doing no vigorous exercising. I’m slim. Pretty much I can’t do anything extreme. And I still get migraine a lot. Oh one thing that sets off migraine every time for the last several years is napping during the day, even for one minute. My poor lap cats!! So I rarely just sit down cause I’ll drop off. That is one familial thing that my Dad, brother & I share is dozing off in the daytime, even at college, work & in meetings. Dad famously dropped off in a meeting of the Joint Chiefs of Staff at the Pentagon😳.
I'm so so sympathetic with your pain on that and I'm so sorry that you had to go through it. Its been almost 15 years since my PCOS problems started and for some huge periods they have lowered my quality of life to levels so low that it felt pointless to keep going. Can't say it got any better with medical professionals telling me that getting pregnant would solve all my problems (I was 19), that I have bipolar disorder (after one session), rolling me round on hormones without running any tests, performing tests that were not only painful but mentally damaging and then concluding that - hey - I'm depressed (really, wonder why :D). Right now I'm on a new medical path that seems structured and logical and I start to understand that all the other issues were probably merely a myriad of symptoms of an undermined serious condition. I really hope with all my heart that you never ever go through this again! You're awesome!
I am so sorry you had to deal with such dismissiveness for years. I'm glad you stood up for yourself and finally got correctly diagnosed. I have autoimmune immune issues myself, (RA, Hashimoto's) as well as fibromyalgia. Its taken years to be taken seriously and get treatment. I also have a friend who's been diagnosed with celiac aa well as EDS in the last couple of years. They're struggling to find out what else is going on. It's truly awful when our own bodies are enemies... having medical professionals that are in opposition to actual treatment is just another slap in the face. Kudos to you... and thank you for sharing your struggles. ♡
Ellie! ❤❤❤❤ I feel so seen. I can’t relate to every part of your story, but SO much of it I can. The overwhelming fatigue that others just assume is laziness is absolutely crushing to the overachiever. I was the overachiever that always pushed harder/longer until one day my body literally could not push any longer. There was nothing left. I’m so sorry that you endured so much gaslighting and misdiagnosis for so long. I’m glad you have answers, even if they are what they are. 😢 EDS sisters
Ellie that was heartbreaking and life affirming. Your road was tough, but you are here today, an amazing and awesome woman. I was in my 40s before I was diagnosed with Narcolepsy, then Autism and ADHD and well lets just say, the list grows. The journey to diagnosis can be so traumatic, and take such a toll on our mental health, that it feels like climbing out out of a hole and arriving at the bottom of a mountain. That’s ok though, because I always remember that Ellie Dashwood says I am awesome! 😊 Thank you.
Autoimmune diseases are like wolfs (I'm not just saying that, because I have lupus), they like to run in packs. In my case it's SLE/systemic lupus erythematodes, POTS, fibromyalgia, Hashimotos, Sjögrens. Keep being awesome Ellie, 'cause you're awesome! 💜
I’ve been misdiagnosed with multiple sclerosis once. Since than all doctors in my life have been telling me that all the problems in my life are from sclerosis… finally I just stopped telling them about that story, and now they listen to me.
Lots of love ❤ so great that you are using this platform to talk about this. My mother also has EDS and only got her diagnosis between 35-40, and that was after years and years of her and my dad fighting the health care system. She was depressed on top of that and ended up retired young. Now she is better and living her life as fully as her body allows. When I started displaying symptoms my doctor said "since your family has a different medical history you just think normal post-fotball pain is a chronic disease." Which wasn't at all what I was experiencing. 15 years later all I know is that I haven't inherited my mom's disease, but still no clue what is "wrong" with me. "Its probably just stress" On the positive note, since both my cousin (fibro) and I couldn't do what the other teens did we ended up becoming very close friends till this day.
Ellie, I’m so sorry you’ve had to deal with so many chronic illnesses. Any one of those would be a serious challenge, let alone the whole chain of them. You’ve been brave, persistent, resourceful, and smart enough to be a first-rate detective. You’re setting a great example for all of us! I wonder if you’d consider doing a video combining your knowledge of all these dramatic symptoms and interest in 18th and 19th C. literature and lifestyles - for example, whether “ladies fainting in times of high emotion” could be caused by POTS or narcolepsy, rather than either too-tight corsets or hysterics. Or if all those sickly, pallid Victorian orphans and little seamstresses were suffering from celiac or other severe allergies, not being Too Virtuous and Frail for This Wicked World. There’s scholarly precedent for this kind of exploration. Once people stopped thinking the Salem “witches” were literally drawing on powers they got in contracts with the Devil, explanations for the witch trials ranged from religious hysteria to sexual repression to patriarchal fear of independent women (depending on the intellectual climate of the era). One current theory is that New England’s grain harvests in the 1690s were sometimes infected with ergot, a fungus known to cause hallucinations. Anyway, keep up the good work - we enjoy whatever videos you make for us!
That is quite the journey. I am so sorry you experienced physicians that would not listen or take your word for your health. I am proud of youfor advocating for yourself. Be well. And keep being awesome, because you are awesome! And such a survivor!!
I worked as a Community College guidance counselor. I used to refer students to therapy but I'd tell them people spend more time shopping for the right pair of shoes. I don't care if it's a matter of "I just don't "click," find another therapist!" However, if any therapist tells you that you're worthless or implied or or in any of the many ways that behaviors make it clear that that is what they belive, RUN don't walk away! In struggling myself to find a doctor who understands hEDS, but I'll keep looking! Thanks for this video it's truly affirmative!!!
Thanks so much for this video! I have at least 3 family members who have multiple autoimmune disorders, and it's so hard to understand their mysterious symptoms. Some of these symptoms look to others like they're psychological. I appreciate you sharing your perspective.
I have CFS, POTS, Fibro, SNAS, Status Migrainosus, MCAS, Type 2 Rapid Cycling Bipolar, Graves Disease, and probably some other four letter acronym that I'm forgetting or not diagnosed with because the other ones run my life more (e.g. I probably have EDS). I feel this so much. The big one that messed up my life was CFS, and a few of the other illnesses were caused by CFS stressing my body out to the point where something just stopped working right. As a kid remember just feeling like I had the flu all the time. We'd go in to the doctor, I'd get tested for youth arthritis and mono, the tests would be negative and I'd be told it was in my head, I had to stop faking and go to school. I came down with CFS when I was 7. I actually don't remember ever feeling well anymore, just remember exactly when I freaked out realizing I wasn't going to get better. I remember being in my teens, watching my younger cousins run around and thinking "Wow, getting old sucks, how do they find the energy?" I really did think my energy level was normal and did not understand how everyone else had it in them to do twice as much as me. I'd come home from school and crash, all my energy would be used up just going and often I couldn't even manage that much. In my late twenties I got sick of being ignored by doctors, getting sick this often was NOT normal, and decided I was going to get diagnosed no matter what. So I took my temperature every day for about two weeks and noticed a slight spike in my temp on bad days. Went in to the doc with this info and suddenly I was literally told "Oh, temperature changes mean it can't be in your head. Huh." and sent to an infectious disease specialist. He tried to prove I had some illness he was trying to get his name put on for discovering, but that didn't work out so he basically said "You have CFS, don't come back." I thought it was a dismissal diagnosis, and honestly it probably was, but it turned out to be correct and the key to me finding the best doctor ever, my CFS specialist, who has been helping me navigate the disaster film of health problems I have ever since. I'm disabled now, my CFS went untreated for so long that my body doesn't work as well anymore, but having a diagnosis and some treatments in place has helped me get a semblance of a life back, and gotten everyone who didn't believe me, parents included, some proof that I really am sick and need help.
My impression of you from your videos is the opposite of the picture being painted here. You seem so healthy and normal. I would have never suspected all this suffering. I feel empathy for your struggles.
Ellie, you have no idea how much this video was needed!! I was diagnosed with a rare autoinflammatory condition called FMF and I fought so hard to be diagnosed, and having been misdiagnosed with so many things, including being 'anxious' before I was properly diagnosed. I always say, keep fighting if you don't feel like something is right, because no one else will fight for you
Thank you for making this video, so important! Yes, I have ME and POTS and experienced tons of medical gaslighting when trying to diagnose it. From, "it's all in your head", through "your test results are normal, so you are healthy", "don't try to get diagnosed, it will make you believe you are ill and you will never recover". It's especially important to talk about it in the context of being a young girl, because that's the most disbelieved patient group and if you are of colour other than white, that reduces the chance of being believed by medical professionals even further. It is not only a cultural problem of medical professionals dismissing young girls for being depressed, hysteric or attention-seeking, but also a problem of not equipping girls with tools to be able to be assertive and advocate for themselves. We are raised to be calm, quiet and agreeable, taught to apologise and be considerate of others and the highest quality is suffering in silence for the sake of our families. After being conditioned that these qualities make you a "good girl" and the opposite behaviours make you a "bad girl", it is really difficult to stand up for yourself especially to authority figure, such as doctor, when they are telling you what you feel is wrong.
What a road you have traveled! It’s a wonder you can maintain any trust in the medical community. I am proud of you for trusting in yourself and being a determined advocate. I hope there are therapist who specialize in medical trauma, because the fallout from those awful experiences must have a lasting effect. Keep taking care of you. ❤️
I seriously thank you for how you express your _body_ being anxious, before or instead of your mind. Now I don't suspect I have MACTS, I have probably another issue (and I have a good grounds for guessing what it might be), but that description is so spot on and I think I'm gonna use it too.
Any therapist that says your friends do not actually like you and no one would miss you if you were gone is a sadist. That's a harsh thing to say to a person.
Impressed by your persistence. Living in the UK I was I’ll in the 80’s and all my persistence got me was a misdiagnosis of a personality disorder which at the time meant doctors would refuse further treatment since “I was seeking attention as a result of my supposed disorder - and giving me any would only waste NHS resources”. A couple of years later I was diagnosed with fibromyalgia and chronic fatigue syndrome. I was too tired to persist with attempted diagnosis beyond that. I continued to get worse and instead sought self medication. Twenty years later I was correctly diagnosed with bipolar disorder. Also with both visual and auditory disabilities. I have other chronic health conditions but I’ve been mostly housebound for the last 25 years and am now mostly bedbound so can’t pursue diagnosis. I’ve never had the money for private healthcare and the NHS is entirely - as you say - check the most obvious. I was so lucky to meet 2 real doctors. The one in 1990 gave me my CFS diagnosis then referred me to a consultant who gave me a fibro specialist. Not that the NHS provided treatment for either besides “graded exercise” that I was too I’ll to undertake. The second consultant really listened to me and diagnosed the bipolar - as well as noting in my medical records that there was no sign of a personality disorder. The treatment she prescribed worked brilliantly. Unfortunately I still have a lot of symptoms, mainly around digestion. I got my bipolar diagnosis partly from my own research so I’d definitely recommend it, if your health allows you to do it.
2.3 minutes in I pause the video and think, I bet she has narcolepsy, pots, maybe eds… let’s looks… yep! Girl, I’m so sorry! I have had the exact same experience!! I am extremely impressed that you do this channel with all this! How?! I couldn’t! You’re a rockstar!
