Diane O’Leary, PhD presents - “All in Your Head”: The Problem of Psychogenic Diagnosis for EDS
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- Опубликовано: 24 июл 2024
- Diane O’Leary, PhD is an Associate Adjunct Professor in philosophy at University of Maryland University College - Learn more at: www.chronicpainpartners.com/fr...
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I was given a link to this amazing webinar by someone on a UK Trigeminal Neuralgia FB group. Hearing Diane O’Leary speak so edifyingly about this kind of medical gaslighting (neurologists being worst offenders I can confirm from experience) seems to dovetail so well with the more recent #MeToo movement. I hope the very courageous Diane O’Leary will follow up her ethics/ lived experience journey by doing another webinar.
But having been subjected to some online abuse myself for just sharing this RUclips link on a forum for functional neurological disorders - I feel that we need a worldwide movement of our own to force greater accountability from the international medical profession, who continue to diagnose psychogenic disorders all too readily - particularly in women.
I was told it was all in my head from age 25 to 43. I finally got diagnosed w/ Ehlers-Danlos. To my surprise I still am not getting any treatment. I’ve had docs tell me it’s all in my head after the dx. Now I have head to toe osteoarthritis that they can see w/ the naked eye & still no help. One rheumatologist wanted me to take antidepressants for a torn meniscus. I have completely given up on doctors at this point. This vid is chilling b/c it gives me a perspective on the system of disregard in place. It’s a system that is set up against ppl like me. It’s not just one random doc after another. It’s a medical culture of dismissal & disrespect.
I am so profoundly sorry!!! I Do understand, it happened to me too I was 'gaslighted' , denied test, x-rays, given psych drugs... This is Torture, and there is Nothing ethical nor scientific about it. This is why members in our EDS, POTs and greater rare disease comunity commit suicide... I know it, and only by God's grace I am even here now. I have an article up on my Facebook page The Insufferable Movement where a teen talks about being Locked up in a psych ward instead of being treated for her EDS and very legitimate symptoms and now suffers PTSD , I'll be glad to send it to you if you'd like a link to the article but I'm probably going to post it at the very top of the comments on this video as the Only thing that should be said to any doctor telling a patient it's all in their head! A sadistic practice this should be banned in medicine completely, and would never happen if patients were treated with individualized compassionate ethical care for as I found in my research even with conversion disorder the treatment is listening believing and even giving pain medication to the patient which guess what... It helped them! Probably because they of course have something wrong that just hasn't been found as you and I know.
Doctors have been successfully sued and had regulatory action taken against them for denying care to EDS patients. When I was going through denial of care for my EDS, I complained to my insurance company that the doctor was not providing the care that insurance was paying for. They went after my doctor for medical fraud, removed him from their list of approved providers, and in the end that doctor is no longer practicing medicine.
@@LDuke-pc7kq , I would love to see that article. I’m 65 now. I am about to give up getting care. Impossible attempting to get care when your physicians education about Ehler Danlos is so old and not up to date , I’m becoming so ill.
Diane O'Leary is a well informed and very intelligent bioethicist and philosopher who isn't afraid to say it like it is. She basically helped save my sanity from an erroneous diagnosis of psycogenic Conversion Disorder/Functional Neurological Disorder where I was able to prevail long enough to find a very experienced neurologist who changed this diagnosis from functional to organic Paroxysmal Kinesigenic Dyskinesia/Choreoathetosis with parkinsonism and started me on levodopa/carbidoba which is helping me immensely with some of my parkinsonian symptoms. Thank you professor O'Leary, you are an angel!
Let's also talk about the epidemic of psychopathy in the medical field. It's exactly the type of position a sadist would be attracted to.
YES!!!! This field of 'medicine' is so sadistic that it shouldn't even exist!!! With our condition we have no issues of psycho-somatic illness in Russia, because we have good doctors funded by the state that won't have to scam you for money!
Yes, teaming with Narcissist! Grandiose, Covert and Alterous types as well. I have been exposed and been gravely harmed by many of them!
@@mahjorimahjewicz6027 psychosomatic illness is a lie for lazy, uninspired and lacking in knowledge Dr.s to say to legitimate patients to make Themselves feel better, and a form of Gaslighting/ patient abuse! I have lost unbelievable amounts of respect for the medical profession in the United States over the past decades. Science, analytical thinking and ethical treatment are officially Gone here, and it is a disgrace
Yes, sadly it’s true, and it doesn’t matter whether the practice is state funded or not. I went to see a psychiatrist who displayed all the hallmarks of some form of narcissistic disorder. And he could get away with it because of confidentiality and because no one listens to the testimony of a patient at a mental health clinic (which is an ad honimem fallacy but then medical practitioners and their enablers aren’t usually very good at critical thinking).
Thank you for this excellent webinar. Viewers might like to know that, according to the ‘Bare Essentials, functional symptoms in neurology’ paper, part of the reason the word ‘functional’ is used is because it maps onto an understanding of modern imaging techniques (IE fMRIs). This seems to be deliberately deceptive misuse of language to try to hoodwink people into thinking there’s something scientific involved, rather than supposition, confirmation bias and possible cognitive dissonance from certain doctors. The same paper also suggests that the term ‘functional’ is used because it is ‘easy’ to use with patients which is dumbing down and not in keeping with Health 3.0. What I find interesting is that few people can agree what ‘functional’ means. One consultant (as she attempted but failed to misdirect me into believing that the symptoms of Mal de Debarquement Syndrome are ‘functional’) told me it meant ‘medically unexplained symptoms’ which made no sense at all but she refused to explain further, despite being one of the people who trains doctors when to diagnose ‘MUS’. Another told me it means ‘a change in function, not structure’ which does make sense but is a far cry from the comments of two neurologists I’ve met more recently. One said ‘it’s lazy psychological profiling’ and another (a migraine specialist) said it was a way of ‘blaming the patients’ - I agree with both these viewpoints.
Meanwhile I admire Professor Rodney Grahame who wrote this in a paper about JHS:
‘There is a common tendency in medicine when faced with medically unexplained symptoms to assume that they are psychogenic in origin. This is a high-risk approach that can have disastrous consequences. The joint hypermobility syndrome (JHS) story is a good illustration of this.’
He also writes:
‘To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession. More often than not, JHS is still overlooked, misdiagnosed and hence untreated.’
Mistaken psychogenic diagnosis at age 17 delayed my hEDS diagnosis until I was 37. The specialist who should've diagnosed me at age 21 read the psychogenic misdiagnosis in my records, and then didn't bother to screen me for EDS. The psychogenic misdiagnosis put me in a mindset where I started to believe that none of my health issues mattered or were real, and I didn't take the signs of my testicular cancer seriously. This stigmatization in my past makes it difficult for me to take other real medical issues seriously, such as COVID-19.
if anything, it should have made you take everything more seriously than your doctors have, but that's my experience and my experience of others around me
@@moonmoon6591 Yes. I should clarify that it caused me to take my non-EDS issues such as cancer, colds & flus, high cholesterol, etc. less seriously. I went through two decades of hell due to the delayed diagnosis and denial of proper medical care, had a highly invasive abdominal surgery that went horribly wrong due to my EDS being undiagnosed, and had adverse reactions to inappropriate medications - two of which were nearly fatal. The PTSD from all of the malpractice probably led me to react differently than most other people.
@@Dulcimerist tbh I’m not too surprised, when you get dismissed early in life, it tends to leave a mark on your developing brain. This is very difficult to change. It’s probably even more difficult if you’re male and expected to be tough about health issues (which is of course why most male doctors are so rubbish). I have also had a hard time speaking up about my physical problems and still feel embarrassed that I have them because I don’t believe anyone will listen and wonder if maybe I’m just exaggerating it all. Rationally I know I’m not exaggerating anything but emotionally, I still struggle to consider myself disabled and worthy of social support. I’m 56 now so I am more capable of fighting ignorant doctors but I still have to overcome my own embarrassment.
I have all of the associated problems with that go along with EDS along with having it. I recently found out I have Chiari and the neurosurgeon was mad that I didn’t want to have surgery because I have PTSD from all the complications I’ve had in the past in my 13 surgeries. I just recently found out that I have all these conditions after years of suffering and going to multiple doctors. I was told anything from (rheumatologist) “your too young to have all these problems and that much pain,” also said I have fibromyalgia which is pretty much saying its all in my head and tried to prescribe me depression medicine (I’m not depressed), to (Neurosurgeon) “you need to quit being so hard on yourself,” (pain management) “your too young to have this much pain and you look fine and all of your spine problems are mild and you could have surgery to repair all your tears,” (primary care) “all your labs came back fine maybe you need to get a better sleep schedule and take the tv out of your room, take some ibuprofen and your also Asian,” (neurologist) wrote in his notes that he thinks I’m over exaggerating and have high anxiety, my emg came back fine nothings wrong with me. He also never mentioned I had low lying tonsils which MRI showed 8 years ago which has further descended. He said everything was normal there’s nothing wrong with me.” I can’t tell you the plethora of comments and doctors insults in their notes. It’s ridiculous that people have to go through this! Thank you for advocating
There is no comfort in knowing other people have been mistreated also. It's shameful on the doctors that cause it.
This is absolutely brilliant . Books such as " Its all in your head " Are the enemy of EDS and ME patients . Its all too easy when your speciality is to negate minute detail and to seek out the basic and easy way out of looking into the issues in order to discredit a patients real and complex condition and experiences . Also cheaper to hope a systemic illness that affects every part of the body is psychogenic . The EDS knowledge from most doctors is incredibly formulaic and underdeveloped, especially in the UK . The need to diagnose "something " rather than to admit confusion and inexperience lies in the Doctor ego . There are many, many ,many of us experiencing medical abuse and negation due to connective tissue disorder being systemic, IE in EVERY SINGLE PART of the human body . The fact that most clinics are compartmentalised and no longer general means that we are anatomically seperated from the whole , which is utterly redundant. IN EDS you have to look at the sum total/whole as everythig in a connective tissue disorder is < ahem > CONNECTED , and that is why dangerous and disabling issues are missed and left to deteriorate . You cannot compartmentalise EDS patients . Their spinal and gut health are so important and yet in 35 years of being a patient not one doctor has ever discussed diet with me . The need to demoralise EDS patients is endemic as this talk evidences, re the percentage rates discussed . There needs to some kind of watch on this as it is akin to the maltreatment of MS patients before the MRI was discovered as a feasible and viable way to understand the illness . What is happening is actually rather barbaric . Nearly every patient I know or talk to has been medically gaslighted . Many of whom have now had genetic tests, some whom were carrying the most fatal form of EDS , VEDS . To have a standard reaction medically to negate , is a problem . The medical community need to learn to deal with this differently . They are causing harm . Other models need to be looked into used in holistic practice . Medicating and operating , and "re hab " which involves intensive pysio, which often damages EDS patients further , at this time, seem to be the only pathways they can come up with . To this date I believe they've discovered 13 different genetically identifiable sub types . Science mutates . Its is not this steadfast thing . Doctors need to learn to learn and listen , look and adjust . Psychogenic diagnosis is often steeped in sexist belief systems too . Implications on EDS patients , re relaxin . The matrix of connective tissue disorders is complex . Psychogenic diagnosis or treating patients like idiots , is out of control . I am very grateful to have found Diane O'Leary 's talk . We need advocates like this . Thanks Diane .
Yes! Well said
Yep. It’s hard to believe that doctors are worse than mediocre until you put yourself out there to be treated like an imbecile. Ultimately, they are just projecting their own inadequacy so I don’t know if they can really be trained to think differently. If we could at least stop them from diagnosing ‘something’ instead of admitting that they don’t have the answers, that would be progress.
After years of exhausting allopathic medicine, I saw a well known naturopath (one of the founders of Bastyr University here in Seattle). He truly gave me the info and tools to change my life for the better. There are so many natural things that work and most have less or no side effects. I felt better than I had in years. I am forever in debt to that man's determination to help me find a better way to deal with my wonky body and its fuel system.
This explains even more than we knew about the ridiculously hard fight we've had for my daughter. How does one fight medics just not believing symptoms?
This talk was awesome! I think about this all the time: how could something be “in the head” and NOT in the body.... isn’t in the head, in the BODY by definition... philosophy problems!
Or... it could also be called 'Gaslighting', unethical substandard care, and patient abuse... Doctors pronouncing such things they themselves can't even prove has led to many patients committing suicide and being denied care to devastating. consequence. Maybe a more helpful quote would be : Just because we as Doctors haven't Found the source disease yet, does not mean it's not there. Just because I don't see and feel your pain, doesn't make it less real.
Typically in cases of conversion disorder doctors found treating the patient symptomatically including pain control Helped the patient in subdued there pain; let's think about analytically why this happened? I would say because it was Always real, and in truly ethical medicine where individualized care, respect to autonomy and personhood are the paramount goal, We Treat the complaint whether it's understood or not at the time. For it wasn't very long ago in medicine M.S. wasn't seen as 'real', nor the pain of cancer, need for anesthesia on babies and those that had diabetes were suffering from hexes of witches. It is always dangerous and Bad Medicine to deny a patient of their human rights which includes their experience in their own body.
I had to go from walking to wheelchair in 3 weeks in January 2012 at 45 with a massive "onset cascade" of hypermobile EDS symptoms and laxity before I got diagnosed with anything besides IBS and depression and CFIDS. I'm still gaslit today by some doctors. Right SI joint split, right leg came out, fingers ribs and toes came out. Oh, yeah, I guess y you're not "just depressed". Uhm, ya think doc?? SMH. And have been attacked by one PCP who assumed I was drug seeking. When do we get to turn the tables on our doctors??? Oh, but no, we have to just take it and suck it up. No complaints allowed, or you will be black listed and your chart flagged as difficult. And you wonder why we're depressed???!
It really is not rare, it's rarely diagnosed. In fact, doctors see undiagnosed EDS patients every single day, but just don't recognize it or know it. (If you can't connect the issues, think connective tissues - anon.)
If anyone is suspecting hEDS or any variation there on, I'm a co-author of the EDS Toolkit for Doctors published in 2018 you can find on my website: ohtwist.com
I am so pleased you have shared this...I am feeling positive about my next steps! I'm in the UK and hope to spread the word!!
Lissy, Thanks for your comment. This is very important information that patients need to understand.
BTW .... We have an EDS support Group in Lincoln, UK.
I have joined the group....but want to say to anyone out there who has been told it is all in there head and deep down they know it is not...please don't give up!! I am 33 and live in England, UK, I have had to fight so hard and endured so much to finally have a Consultant tell me this week that I have an obvious Connective tissue disorder and have been suffering even worse from the effects of POTS...he has now taken over my care and is referring me to professor Grahame at the UCLH!! Finally...I am so grateful of your webinars...now my whole family will be helped. Ty from my heart.
It's incorrect that CRPS "just means unexplained pain". There's a specific presentation.
That is great news...could you point me the right direction to the group? Many thanks.
Lissy,
Here is a link to their web pages
www.chronicpainpartners.com/eds-support-lincoln-uk/
I would call all of this medical mythology. It’s fraught with irrational belief systems and poor reasoning.