It’s so important to have more people talking about this!! For 20 years I thought I was alone in my medical PTSD. And it has nothing to do with any specific illness. It’s all about how doctors handled me when I was a child.
@michelleheidler983
2 жыл бұрын
I love when doctors say someone is lieing because THEY can't figure out is wrong. I explain it to people by saying what is you broke your leg and the bone was sitting out. You rush to the ER and beg for help thinking these are the people who will come to your rescue. And they look at you in disgust and say something like "Does it really hurt that bad? You don't look sick. Ect. " And then they do nothing and on the way out accuse you of being a drug addict who's lieing to get pain pills. I had CRPS. I went from fully able bodied to being in a wheelchair in excruciating pain. They basically said I was attention seeking and refused to do anything for me. "Illness induced" my ass. This affects everyone but women and POC especially. We're just being emotional right? 🙄
@meghannpalmer7417
3 жыл бұрын
And I’m so so so tired of people or healthcare providers giving me advice about my own body. When I say something is wrong, it’s friggin wrong!!!
@maxinehillary9136
Жыл бұрын
It’s scary how arrogant doctors are. I’ll spare you all details, but I was advised during the pandemic that a single level of my spine needed to be fused after I lifted something. Despite my attempts to get patient education, a look at images, etc. nothing came. Didn’t even know when surgery was until they came to get me. Woke up with TWO levels fused. I’m really active and went from fit to s&$t overnight. 10 days in the hospital and my doctor who has offices there didn’t even call, even sent a doctor I’d never met to tell me I needed surgery. 5 whopping minutes. I’ve not trusted this doctor since and felt like I’d been violated because when I finally saw the MRI report it looked like the need to fuse two levels wasn’t necessarily there. I had him take the hardware out almost a year ago, but the pain persists and I’m furious as he’s now telling me to go to pain management this isn’t his fault. He made a non-life threatening decision that should have been mine. Every time I had to go back to this surgeon i got triggered. It was like facing an abuser. I am still in pain and it’s been so hard to stop looping back to what happened and how this would have been so much better if my doctor had taken just a little time to talk with me, tell me what was wrong, walk me through it along with any potential problems. I could have explored options and asked educated questions. In looking at some of his reviews, I see my experience isn’t isolated, but it’s taken a long time to physically recover and overcome the PTSD it caused. Medical PTSD is real. I’d had other major surgeries and procedures and they didn’t impact me emotionally. This has been horrible.
@ellieinBG
3 жыл бұрын
I've been there. I have soo been there, screaming in the car because ANOTHER doctor told me my symptoms are not real. I definitely have PTSD from medical professionals.
@confidentialname2213
Жыл бұрын
How about MEDICAL MALPRACTICE INDUCED PTSD? In the US, medical mistakes constitute the 3rd leading cause of death, after heart disease and cancer, in spite of the fact that researchers widely acknowledge that malpractice mistakes are extremely underreported (for obvious reasons). I'm experiencing that at Kaiser Permanente. In the past 15 years, I experienced dozens of minor and major mistakes at KP--from an unsupervised patient walking into my room at 3:00 and waking me up by touching me my thigh, to wrong dose of medication given by doctor, etc, etc, etc. This needs to be explored more because this kind of PTSD tends to meet with a lot of denial and gaslighting in a system with secrecy codes where medical professionals won't "snitch" to avoid lawsuits, etc. There's some research about this. Worth exploring the topic.
@zanleuxs
Жыл бұрын
Yes 1000 time to calling it medical malpractice induced PTSD, that leaves no doubt to where the blame lies, and it's not with the disease, at this point I'm suspicious of the reason behind patient right to privacy, it seems to enable medical malpractice more than protect the patient
@katb607
8 ай бұрын
They literally lied in my ER chart last year saying they asked me certain questions and MADE UP ANSWERS! Then when i got mad they tried to diagnose me with borderline personality disorder. Not to mention my second ER visit my doctor said to me "you need to go home. There are real sick ppl here"
@christinahurt7505
5 ай бұрын
Yes!! Changing name to illness induced PTSD would be a cover up and allow the mistreatment to continue.
@magicsamart2343
Жыл бұрын
I was born with severe Marfans syndrome and I have ptsd from the way I was treated in the hospital and at many doctors appointments. The name changing away from “MEDICAL PTSD” angers me immensely. The hospital and doctors traumatized me directly. We won’t be able to prevent more children from being traumatized in the hospital if we don’t address the ptsd as CAUSED by the medical field. I also notice when I search for information on medical ptsd it seems to be suppressed or all the information is only about how ICU nurses are traumatized. Where are OUR STORIES? I know lots of people deal with being traumatized by medical professionals
@Anastasia-pi1yp
3 жыл бұрын
I feel this so much. I used to be a “perfect kid” but then I got sick. Whenever I went to doctors they just said I wanted to skip school, when I’m reality I loved it. I have been too so many doctors that either say it’s all anxiety or just can’t figure out what’s wrong and send me to a therapist. At this point I just shut down whenever I’m in a doctors office. I wish people could do better. Some kids are faking but most of us are not. No one should be scared to ask for medical help.
@Jenny-mo9ug
3 жыл бұрын
Can 100% relate to all of this. Literally everything being said here. I also cannot go into appointments with new doctors anymore. Have been dismissed, neglected, injured from bad care, couldn't walk for weeks.... I finally have some really good doctors taking care of me so I have been happy about that. My appointments take a lot of energy out of me.
@bloop9531
2 жыл бұрын
Finally someone actually talks about this!! I really thought I was crazy. I’m 14 and since I can remember I always had extreme trouble speaking to people but when I talked about it literally everyone said that I was imagining it, like no I just had to act like I didn’t for people to treat me like a human being. The first time professional actually listened to me was when severe depression started to show about 2 years ago. The ONLY time they did something to help me was when I told them I was sh and that I was sewersidal. It really just feels like they only want to help me when they think I’m gonna d!e under their treatment. Now the worst thing is they know very well that I don’t do well outside/far from my home, yet when I started to get better they sent me to a psych ward 6 hours from my home because apparently they want them to do some tests. I really did not want to go because I felt in control of myself and was starting to talk to my friends again. I ended up there 5 weeks, sleeping with multiple roommates while my social anxiety was really bad and I was watched at all times. Oh and I didn’t get to see my parents because they were so far away. So I was watched at all time, forced to be with a lot of people 24/7 and I couldn’t even see my parents. The worst thing is the doctors near my home could have done the tests that they made me do at the psych ward, when I realized that and told them they started to say that I wasn’t well so they were taking care of me. Like no,sir, now I just can’t bring myself to trust anyone and I’m constantly terrified you are gonna take me away:) Then they manipulate me into doing what they want me to do because no matter what I say, if I refuse something they can get the court’s permission to do wtf they want because I’m a minor and I don’t know what’s good for me apparently.
@SerendipityArtandGaming
2 жыл бұрын
Life
@bookbeing
Жыл бұрын
That sounds like a terrible experience.😢⛈️
@taradale811
Жыл бұрын
Fellow zebra who passed it onto my child and been accused of Munchausen's and Munchausen's by proxy because the medical field suck only 2 specialist in the country I have 3 official diagnosis as well and been treated horifficlly. Been through a very similar story, at some point I will also share what happened.
@timm2428
Жыл бұрын
Wish id seen this before. 2 years ago I had to have emergency surgery to remove over half my large intestine due to a blockage. 11 hrs on the slab that time. Now mind you my back utterly sucks so being on that hard plastic slab they operate on caused my back to go out and seize, once in my room the pain from my guts being ripped apart caused my back to seize even more causing my stomach to cramp even more. The pain burning through whatever they gave me so spent 24hrs screaming in pain until my voice gave out and I had to drawl into my brain to survive. Yeah ptsd followed rather quickly.
@selenagolden3145
Күн бұрын
Honey, I feel you so hard. I have hEDS & POTS, dysautonomia, etc & bpd & generalized anxiety disorder. When I was first sick with SMA syndrome, I had to be tube fed and they removed my mom from the room when I was 14 and it took 5 nurses to hold me down and shove the NG tube down my nose, down the back of my throat, into my stomach. They treated me like I did it to myself, I physically couldn't keep anything down due to the SMA syndrome but they treated me on the eating disorder ward and treated me like I had an eating disorder which wasn't true. The worst part was when they told me at Miami Children's Hospital that my mom had munchauusen by proxy and she was making my symptoms up for attention. That fucked me up for life and I'm banned from an entire hospital. I've had doctors laugh in my face and say medical PTSD isn't a real thing. But it is real and you've inspired me to start writing what I experienced and still experience to this day 😢 I hope we get the healing we need ❤
@tae.bae.
2 жыл бұрын
As soon as you said JRA I got chills. I just requested my medical records to fact check my memories for my polyarticular JRA i suffered with for all my life and it has been life changing. I am trying to heal from my traumas but because my parents were't emotional supportive through my growing years I have suffered so much. Thank you so much for sharing this. I feel so alone.
@Emmajic
Жыл бұрын
Hearing this kind of story makes me so, so angry. (Probably because even if my experience is completely different, I also have medical PTSD) As if it was that complicated to just listen to what the other person is saying! So yeah I'm really sorry you went through all of this. I hope you are now surrounded by people that listen to you and understand you. I wish you all the best and thanks for the video !
@melissabenfer3311
Жыл бұрын
I just want to add that I noticed a lot of the responders on here are female. This is unfortunately a major issue with medical providers not taking female patients’ problems seriously. They think we are being overly-dramatic or we are all hormonal and so we really don’t mean what we are saying. It reminds me of a time when women with mental health issues were diagnosed with Hysteria. Hyster is Greek for womb and is also the root word of hysterectomy. I believe the idea of women’s “hysteria” is still alive and well even in 2023 as far as medical professionals are concerned and we are being totally discounted regarding any medical needs we vocalize because of it!
@jimjenandi
3 жыл бұрын
I totally can relate!! I have EDS & MCAS and now I'm to the point where when I need to use my Epipen I hesitate due to a terrible dr that made me feel like its "all in my head"!! I had been brought into the ER by Ambulance with Anaphylaxis and having used 2 Epipens and my Inhaler that contains Albuterol. When I was wheeled in the nurse was Amazing but when the Dr walked in I vaguely remembered him. He sat down and proceeded to tell me that I DIDN'T have MCAS and that it was Only a Panic Attack (which I do have and am taking meds for). He told me that I need to take my anxiety meds 1st before jumping to conclusions that its Anaphylaxis....he also told me that I appeared to be "Amped Up" then told me he'd give me some Anxiety meds and that's all. I politely told him that he was wrong that I do have MCAS and if I waited any longer to take my Epi then I wouldn't be alive long enough to talk to him. I regret not telling him that the reason why I "appeared to be amped up" was because he was making me very nervous but all I could say was "I used my inhaler twice and 2 Epipens ". Finally when the nurse returned I was able to get him to realize that the ER usually gives me a steroid and it helps my reaction calm down quicker. But because of that Doctor and a few others like him I have now second guessed if I tuely was having Anaphylaxis or was it Anxiety which is very dangerous. Thank you for posting this video as it reminds me to Trust my Gut because we know our bodies and when something isn't right.((hugs))
@TheWhiteLily44
3 күн бұрын
Thank you for this video. I thought I was the only one. The gaslighting is real. I am convinced that some people in the medical field are psychopaths. It took 10 years for my issue to get diagnosed and I am terrified of doctors and nurses now. The people meant to help are doing more harm.
@Chanpanzie
2 ай бұрын
I'm watching your video right now, I have CP and I can relate to your video. One of my therapists' homework assignments is to look at and discover medical trauma because I have some too apparently! For me, it was both the doctors and the physical pain that flashbacks that I can't seem to get over. This video is making me cry since I really resonate with this, thank you so much.
@nicollem.anthony9289
11 ай бұрын
Oh…my…God. GIRRRRLLLL! YAASSS! Thank you so much for your courage to share and the time and energy you took to formulate your thoughts for this video. I don’t need to share all the details for you to know I understand and I’m so sorry this was your experience. I’ve been looking in everything from the DSM to all these videos learning about narcissistic parents and abuse and CPTSD and digging for what’s wrong with me. But you just named it. It’s not what is wrong with me it is literally my literal nervous system breakdown bc I went misdiagnosed for literally years before Neil I near dropped dead and then was told that after treatment I’m medically fine. All the issues I’m having from severely decreased cognitive like processing like beyond brain fog to an inability to get through a normal day bc of exhaustion until my world became very very small. It must be second nature at this point to chronically second guess myself when medical professionals and family and colleagues and even friends are certain I would feel better if I just got a job. Ohhhh! Why didn’t I think of that? Wait. I was fired bc I couldn’t even speak. Literally. It was my thyroid literally cutting off my vocal cords and being told I was everything from bipolar and fat to having an addiction to food ??? ( How this would make me tired I don’t know. Sugar overload?) I was told I have sleeping disorders, bipolar, anxiety, PTSD and not one blood test on my thyroid. And I’m the crazy one. I had one doctor falsify my medical records and the hospital straight up lie in certified letters mailed to me explaining how I never got the tests she ordered and would no longer be a patient. She never ordered one test. She was an endocrinologist and gave me a literal three hour lecture about walking five miles a day and not eating canned beans only soak them and how people in Africa sell their children for salt and she doesn’t allow her husband to even bring sweets into the house. Poor guy. 3 hours. I just left and cried bc apparently I just needed to have self control and exercise and get over my food addiction and all my other symptoms would go away. Clearly you’ve hit a nerve here. Despite all of this, I feel like I have a very very limited few people who believe me and support me and what I’ve been through. Hearing your story was first an awesome distinction between how your disease didn’t give you PTSD. The medical and mental health community did. So we’ll put and I really needed to hear this. You have no idea how your single voice has reminded me I’m not the problem in this. Thank you again.
@special-princess
Жыл бұрын
This is my life story, told by you... I suffer from multiple chronic illnesses (not EDS by the way) and even had a cardiac arrest hours after an ER nurse told me to stop complaining or she wouldn't help me anymore. I've been told so many times that I'm overreacting, that it isn't that bad or it's all just in my head. When I'm in fact have now being officially diagnosed with at least four chronic illnesses and some symptoms have not been diagnosed yet. I also always need someone with me whenever I visit a doctor, often have had panic attacks and disociadid during or after apointments and even have a PTSD service dog nowadays to help me cope with everything stress related. It's an exhausting fight, especially because it's something that isn't being taken seriously by the mental health field. I live in the Netherlands and it's the same thing here, it's happening everywhere in the world and it still doesn't get prioritized by doctors. I applaud you for your honesty, your openess and the time you put into making this video. Hopefully it will help raise some awareness for this problem. I wish you all the best, thank you for this and good luck with everything.
@leschatsmusicale
3 жыл бұрын
I completely relate to this! And I am so sorry you went through all of that. I have been sick my whole life but took me a long time to even realize it. I used to believe I was really healthy because I rarely got sick...except I had frequent episodes of severe menstrual pain, back pain, difficulty walking, migraines and blackouts in sunlight, bizarre reactions to medication...but all of that was just no big deal, right? Doctors never understood at all and I was so frightened by the medical system I tried to just avoid it altogether. Then I learned about porphyria and everything clicked...but I still didn't really believe myself, so I didn't take all the precautions seriously enough. I believed I was agoraphobic because I didn't want to go outside...nope, the sun was making me dangerously ill. I ended up having such a prolonged attack, I never really recovered from it. Since then I have been bounced from one specialist to another. My problem doesn't show up on their tests, so they don't believe me. They are so disrespectful, they insinuate that I am lying about my symptoms, accuse me of trying to commit disability fraud, or try to interpret all my health issues as having some sort of emotional or psychological basis. I am past the point of being able to forgive their ignorance, I want to overturn the whole medical system and stop this garbage from happening. It doesn't just happen with rare conditions - they miss even the common things like knee injuries, just because they are too arrogant to take the patient's complaints seriously. But when your condition is rare, doctors can just mentally abuse you with their ignorance. Then they label the side effects of that abuse as "anxiety" or "depression" without understanding they are causing barely suppressed rage over denying you the diagnostic testing or treatment you really need. The treatments that would help me the most are simple and inexpensive - and could save my life in an attack - IV glucose or dextrose, therapeutic phlebotomy. But instead they waste thousands of my insurance dollars on useless tests so they can feel satisfied that they have ruled out everything else and say that there is "no evidence" that you have anything wrong. It is really evil the way this whole evidence based system operates, with a doctor acting as a kangaroo court, judging your entire life and character and deciding your fate. I literally feel like I am trying to prove myself innocent of a crime I never committed. The only evidence I have is that my urine turns dark red from an attack. No matter how bad my attacks are or how much pain I have, the way the medical system has treated me feels far worse. If I could go back to work I would suffer all the attacks on my own just to avoid the necical system. My body just doesn't work anymore.
@sherrys5172
Жыл бұрын
Oh someone else with a form of porphyria. Love to you dear. And so much understanding.
@meghannpalmer7417
3 жыл бұрын
Just found this. I’ve had hundreds and hundreds of procedures because of cystic fibrosis. I just had a double lung transplant recently and I know I have medical trauma and possibly PTSD from the transplant. When I’m in hospital, I freak out over little things now.
@erinpreslar1591
2 жыл бұрын
Thank you for making this! I really relate to it as someone who is being diagnosed currently (or not we'll see). It's an ongoing process and everyone wants me to try but I've been burned so many times that I just want to give up most of the time.
@misschiflyer9779
Жыл бұрын
Thank you so much for posting this video. I have EDS (not diagnosed till I was 31) and have medical PTSD. Unfortunately, it was exacerbated over 2 back to back hospital stays recently and I had to file a grievance against one hospitals because of the trauma that was caused by an unnecessary procedure. I still struggle to advocate for myself and my reality in the face of doctors spouting medical text on the organs instead of the human attached to them. It IS crazy making and medical professionals need to be held responsible for the affect they have on patients (especially with the huge social value we put on them and expected trust). They are gatekeepers to all access of ability in our society (work, disability aids, insurance, money, etc) and that should be held to a higher standard with the patient is seen as a whole instead of an organ. Thank you for the post and I hope you are well. EDS and its comorbidities is hard to manage and handle, your honest and graceful post was much appreciated.
@osiris7945
2 ай бұрын
I got it from a hospitalization experience years ago, almost critical, but it left a scar that never gone away. since then I have medical induced ptsd everytime i visits hospital, especially relating to electronic medical devices, syringes.
@cathsrq
9 ай бұрын
Oh i so so agree! Been there, i overcame it by planning my doctor visits very carefully; studing medical journels; using their medical jargon, ;presenting extremely succinctly and logically left brain. Not emotionally. I had to take a xanax to get through the visit. And after i finally got the generalized to recommend the specialist, ( who i already picked out) and firmed asked the generalist doctor to support me. When we estsbled a team atmosphere, almost collegiate, i got action. Fyi the problem was i had rare tropical parasite causing havoc. I am still furious .the trauma of being treated like a stupid crazy young woman was inexcusable. Im very angry about the medical and psych professions.
@mathew-marcus7862
3 жыл бұрын
I’m so glad you are talking about this i find it odd that all the people I have spoken to about it don’t actually know what it is or how it is caused
@NotYourAverageZebra
3 жыл бұрын
Yes same. I get so embarassed when I have to explain it because i know its either not understood or not something one thinks would happen.
@the_robynnes_nest
21 күн бұрын
You have no idea how much I’ve gotten from your video, this was a big eye opener for me. Thank you so much for having the courage to make it.
@sophielouise1094
3 жыл бұрын
Loved growing up thinking that I was fully crazy but actually having eds etc. now I have ocd because im afraid im a hypochondriac , it’s fantastic ( not it is not )
@NotYourAverageZebra
3 жыл бұрын
Oh wow. I wouldnt have thought of this in this way. I'm new to understanding OCD. Im sure that is difficult to deal with when you need to get help for something. Thank you for sharing🙂
@user-ws4rq7ci2o
Жыл бұрын
Hi, Josie! Cute outfit/room! first of all, im really sorry you had to go through all that. i can really relate to the medical ptsd part and just wanted to add my 2 cents. from my experience medical ptsd is almost always accompanied by complex ptsd (childhood ptsd) and learning how to deal with it really helped me.
@caralee5783
3 жыл бұрын
I want to command your courage in making this video. It has made me reflect on my own responses as I work with children and youth in a school setting. Thank you.
@venagunches4045
8 ай бұрын
I have it bad and I am a retired nurse and I have it. Docs today need a new referral for derm where I have been a patient 25 yrs. I need the med so bad and they know it's imperative and don't care. My psych cancels today's says she will call in meds did not nor ever call back. My primary now has to call as a non military doc to refer for something I have had them caring for 30yrs and all of a sudden today when I really need to be seen and nope need referral even ppl seen just days ago. Ok obviously a doc no nurse is that stupid.
@debbismith-moore8940
Ай бұрын
Thank you for this. Also struggling.
@MariaJose-wr1fm
5 ай бұрын
Ohhhhhhh, I have this shit, I am totally afraid of doctors, I go to the doctors with anxiety. Years after years hurting me. I am terrified of doctors and nurses.
@SerendipityArtandGaming
2 жыл бұрын
OMG THE HAPPINESS I FELT WHEN I HEARD EDSSSSS- I have it and I know how you feel. Doctors just saying to wait it out or them not know what to do. And my legs always heart- and like you are so relatable I’m so happy to be included. I’m sorry you have to go through it
@alix73
8 ай бұрын
Thank you so much for sharing this!❤
@stefaniescura6787
9 ай бұрын
THANK YOU
@finnroohomebrewing
3 жыл бұрын
I suffer alot of anxiety and major panic attack s since surviving Stevens Johnson Syndrome 6 years ago. I live with CFS. The psychologist I see ask me why I called an ambulance when clearly i was just having a panic attack and not a heart attack. I managed to catch on one of my videos called Wigram Bristol Bitter and real panic attack what my panic attacks are like. Check it out on my channel. I posted it to document and show him they aren't a walk in the park. Lol. Take care.
@user-dj7gc1wo7b
Жыл бұрын
Great video!
@carolynzedpi4385
Жыл бұрын
I hear you ❤
@jazzombi9680
3 ай бұрын
I also got misdiagnosed with juv arthitis… shit sucked given meds i didnt need so much pain so much distrust from drs. Every dr had no clue what was going on the trauma of going and asking for help and being forced to do it on my own as a 13 y old. Wanting to die simply cause of the pain. Finnaly past two years i found the only dr in my state who knows about hEDS (he legit came put of retirement hes british cause he saw how fucked up the us is) and i reached out to him and now i know i have like 30 disorders. Levadopa has helped me so so much so far! Used for hEDS in france. Had a dr tell me hEDS wasent real cause theres no genetic testing…….. and about babies and birth when i went for a mcas rash…. Told me it was poison ivy… i laughed in his face and freaked him tf out and i hope he got fired lmao….. I always have my mom with me in appointments i dont think i could function or remember any of my information it sucks i also have the dissociation response i hope we get better soooooon!❤❤
@sultantech6986
Жыл бұрын
😢😢😢😢😢😢
@kuolevainen
10 ай бұрын
Hey. A beautiful share. ♡ Stay well.
@blowitoutyourcunt7675
11 ай бұрын
Idiopathic - I'm an idiot and can't figure out what is wrong with you! Cheers
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