I was in the hospital with an undiagnosable physical illness that presented with multiple, some would say peculiar, symptoms. After test results revealed nothing, I was handed over to the head psychiatrist who noted in my files that I was delusional, had factitious disorder, somatic symptom disorder, psychosis due to psychotic delusions, was a danger to myself, very mentally ill, and was not aware of my mental illness; and over 20 psychiatrists at this teaching hospital simply agreed with these diagnoses. And none of it was true—not even close.
Before being admitted to the hospital, I had become bedridden, had to go on family medical leave from my job, and had to have my son drive me everywhere and even carry me up and down stairs because of my painful debilitating symptoms. I showed actual physical disabilities: my voice was almost inaudible due to breathing difficulty, I weighed 77 lbs at the height of my illness because I could not eat due to pain and adverse reactions to food, I could leave my bed only once a day to go to the bathroom because of extreme dizziness, disorientation, and weakness. I could not hold my body up straight, it took everything I had to try to stand and walk, and my hair was falling out. Yet, in spite of all this, the psychiatrists would not believe I had a physical illness simply because there were no test results. I probably would have died in the psych hospital because they refused to let me go to the medical hospital for a feeding tube. A friend who was formerly a nurse had to get a doctor outside the hospital to order my transfer, against the psychiatrist’s orders.
I lay in the bed at the psych hospital for 10 days unable to do anything: in pain, debilitated, and emaciated. I was called a liar; told I had a bad attitude; told I was putting on a show; yelled at to just get up, walk down the hall, get my food, and eat it; and ignored by the psychiatrist and staff members when I finally made it to the door of my room and screamed down the hall for someone to help me. They would not even bring me a phone. The phones were at the end of the hall, and I could not have made it there if I tried.
I had no history whatsoever of mental health issues or mental illness. I never sought medications for depression, anxiety, or any other psych issue. I never even so much as attended counseling. I lived a very normal, productive life. And now, all of a sudden, I was “very mentally ill” and committed to a psych hospital against my will. Why is this allowed to happen? How can this happen?
The whole time I was calmly and articulately explaining to the psychiatrists that I absolutely was having all these horrible symptoms—they were not in my head—and I even offered suggestions on the origin of the illness, but these suggestions were noted in my files as “delusional,” “illogical,” “poor insight to her condition,” and “poor judgment.” As I found out later, all the information I offered to help the MDs find a diagnosis was correct, but they would not listen and would not go to the internet to research my symptoms.
Early in my illness, my Google search revealed mast cell activation syndrome as a possible diagnosis, but I did not feel safe or comfortable sharing this information with the psychiatrists because no matter what I said, or how intelligently and insightfully I communicated with them, my statements were countered with psych jargon and used against me.
I had refused the heavy-duty psych meds they offered, olanzapine and risperidone, because I kept telling them I was not mentally ill, I was physically ill, so they finally obtained a court order, based on the incorrect information in my files, forcing me to take risperidone, which caused a scary flare-up of my symptoms. I did not report the flare-up to them because they did not believe me anyway.
Once discharged, I finally found the correct diagnosis after 2 ½ years. It was mold toxicity and mast cell activation syndrome (MCAS). I was diagnosed by Dr. Neil Nathan, one of the leading chronic inflammatory disorder doctors in the US, and I started on his protocol for healing.
Some excerpts from Dr. Nathan’s book Toxic:
“I have seen patients react to drinking a glass of water with an intense histamine response. Uninformed … physicians look at these suffering patients and think: ‘That’s impossible. No one can react to drinking a glass of water.’ But they can. And they do. …there is a true cause of this reaction, and it is not psychological. What we have is an individual who has become so reactive that he or she does not know which direction the next assault is coming from. These patients often resist eating or drinking anything because they cannot be sure of what will have a debilitating effect on their bodies.
“I want to emphasize that mast cell activation is a real, physiological process. And, as I hope you can immediately see, it is frightening, chaotic, random, and very hard to deal with.
“…mast cell activation is often triggered by mold toxicity….” (pgs. 102 & 103)
“…most patients with mold toxicity symptoms are summarily dismissed as being psychologically disturbed.” (pg. 46)
“The unusual constellations of symptoms described by my patients (often misinterpreted as psychosomatic by physicians who are unaware that there are medical conditions that can cause them) include intense reactions to stimuli such as light, touch, sound, smells, foods, chemicals, and electromagnetic fields.” (pg. 87)
“These conditions are far more common than is currently appreciated by the medical establishment, who, by not believing the descriptions they are hearing, often abandon these patients to the psychiatric world.” (pg. 23)
“Mold toxicity goes so unrecognized by most medical practitioners that a patient bringing it up as a possible diagnosis is usually met with a blank stare or, worse, incredulity. This requires patients to become their own healthcare advocates because they cannot rely on their physicians to make a diagnosis of which those physicians are unaware.” (pg. 41)
“In about 75 percent of the population, the immune system recognizes these toxins and uses its defense mechanisms to destroy them. Unfortunately, the remaining 25 percent are genetically unable to make antibodies to these toxins. These are the patients who are prone to becoming progressively sicker as toxins accumulate in their bodies.” (pg. 43)
“The underlying theme for all of these conditions, whether they are triggered by toxins or infectious agents, is inflammation…. Toxins and microbes stimulate the immune system to produce inflammatory cytokines…. For reasons we are slowly beginning to understand, the body is unable to turn off this inflammatory process once it is stimulated by these specific causal elements. What begins as a normal, healthy immune response over time develops into an out-of-control chronic illness.” (pg. 39)
“We are just beginning to appreciate how widespread mast cell activation syndrome is. It should be considered in the diagnosis of every patient who presents with an array of symptoms from many organ systems, and especially in patients with mold toxicity and Lyme disease, since I find these to be common triggers for mast cell activation.” (pg. 114)
Once I had proof of a physical diagnosis in hand, I sent letters to the hospital compliance officers with all the information I had showing hard evidence of my chronic physical illness, indicating I was misdiagnosed by the psychiatrists, and asking that the information in my medical records, court order, and FBI background check be expunged or withdrawn; however, they refused my request and I was told all the records would stand because “medicine is an art, not a science.” How does that become a determining factor as to whether to replace incorrect information with correct information? It is unreasonable and unjust.
I am still writing letters to whoever may be able to help me get justice. It is a matter of logic and ethics to replace incorrect information with correct information, but the compliance committee and hospital board members could not be relied upon to demonstrate basic morals. I have no recourse in this one-sided dictatorial system based on subjective observation without medical evidence. And I have had my 2nd Amendment rights stripped for the rest of my life based on false information. This is abuse of power, and dare I say, a delusional stretch of the imagination on the psychiatrists’ parts if they think I have any inkling of ‘mental illness’.
I wrote to the American Psychiatric Association (APA) asking them to re-think their definition of somatic symptom disorder (SSD) since it does not take into account chronic inflammatory disorders unknown and undetectable by the majority of the medical community because they are not taught in medical schools. I have sent two emails to them with no reply.
The following excerpts are from the definition of somatic symptom disorder (SSD) on www.psychiatry.org, which is based on the definition of SSD in the DSM of Mental Disorders:
What is Somatic Symptom Disorder?
Somatic symptom disorder is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning.
Pain, weakness and shortness of breath are some of my symptoms and the symptoms of MCAS, and they are scary and debilitating.
The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms. The physical symptoms may or may not be associated with a diagnosed medical condition, but the person is experiencing symptoms and believes they are sick (that is, not faking the illness).
A person is not diagnosed with somatic symptom disorder solely because a medical cause can’t be identified for a physical symptom. The emphasis is on the extent to which the thoughts, feelings and behaviors related to the illness are excessive or out of proportion.
My thoughts, feelings, and behaviors were not excessive or out of proportion with my symptoms—I had to go on FML, I could barely get out of bed, I couldn’t eat and got down to 77 lbs, my son had to carry me up and down stairs because I was weak, dizzy, and in pain. My symptoms were real and debilitating. My entire life was disrupted. And I was diagnosed with SSD and other mental illnesses based solely on lack of a physical diagnosis for my symptoms.
Individuals with somatic symptom disorder may experience difficulty accepting that their concerns about their symptoms are excessive. They may continue to be fearful and worried even when they are shown evidence that they do not have a serious condition.
The test results do not show illness because most doctors have never heard of MCAS, mold toxicity, or other chronic inflammatory illnesses. They do not know how to recognize it, test for it, diagnose it, or treat it. And they do not go to the internet to research symptoms when they are stumped.
I repeatedly reported my painful debilitating symptoms to my doctor, while showing obvious signs of physical disability, but her only response was “But nothing showed up on the test results,” indicating to her that there was nothing wrong with me. Therefore, the mental illness diagnosis was based on no test results for my physical symptoms and the definition of SSD from the DSM of Mental Disorders. This definition does not take into account chronic inflammatory disorders that do not show up on conventional tests. My so-called somatic condition was real, very serious, and life-threatening.
Based on the information here (and I have much, much more), it looks as though truly physically ill and suffering folks are being misdiagnosed with ‘mental illness’ and sent to psychiatrists instead of doctors who can help them. Can we please do something about this?
Obviously, this psychiatric system is not working if an intelligent, stable adult of sound mind can be involuntarily committed to a psych hospital and forced on antipsychotics simply because she sought help for her physical illness whose root cause could not be discovered within the confines of traditional medicine. This is a dangerous system that needs a complete overhaul so that psychiatrists cannot continue to harm innocent people without accountability or the patient’s ability to have false records expunged based on hard medical evidence of psychiatric misdiagnosis.
Thank you for sharing your story, Laura. I, too, had mainstream medical malpractice covered up with psychiatry’s “BS,” so indeed such criminal abuse of psychiatry is likely quite common.
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I knew someone with ME who doctors believed was suffering from a psychological illness. They put her wheelchair meters away from her bed, too far for her to walk to at the time. Luckily a friend got her out.
I know another woman who was detained in the UK under the mental health act. She had no idea where she was as no one had told her. She tried to escape, a restraint team broke her arm but the staff refused to believe her when she said she was in pain. It took about three days before a junior doctor believed her and got someone to take her to A&E.
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This story speaks volumes. The level of malpractice involved here is incredible and violates many constitutional and human rights. Laura you are amazing and I send you such love and healing for having to experience these horrific events. There are literally hundreds of thousands of people in the US at any given time who have undiagnosed and rare chronic conditions that are not easily detectable by conventional diagnostic testing. The Undiagnosed Disease Network Foundation demonstrates that at any given time because of prevalence and variety of rare disease 1 in 10 Americans has one. It is unconscionable that a human being who is clearly exhibiting real physical symptoms could be so greatly dismissed and then made to be delusional simply because modern medicine does not keep up with the reality of disease prevalence in humans. This is a disaster and inhumane. Additionally the way medicine was practiced before the 90s really was by precisely listening to a patients story through their description of symptoms and there was a lot less reliance on diagnostic testing to tell the whole story. Much has changed in that realm obviously but many doctors-most now in functional medicine or naturopathy-understand that diagnostics are in no way meant to give you the entire picture. If anything they are aids to expand upon ideas and provide more clarity if possible. It is incredible and truly terrible that there is a disorder in the DSM that basically states “if you’re having a hard time coping with undiagnosed or rare disease it’s your fault and you’re also delusional because you’re not as sick as you think you are, mostly because none of the tests you did (which are in NO WAY comprehensive) say you are and your doctor didn’t bother to do any research”. This is truly delusional thinking. What a disaster this system is and it feeds on itself. Doctors get to be lazy and psychiatrists get to feel like gods. What a system.
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Laura,
What an absolute horror story you endured. Thank you for sharing. I am glad you finally found a doctor with ethics and integrity to correctly diagnose and treat your physical illness.
“This is a dangerous system that needs a complete overhaul so that psychiatrists cannot continue to harm innocent people without accountability or the patient’s ability to have false records expunged based on hard medical evidence of psychiatric misdiagnosis”
Yes, 100%.
I can relate as something similar happened to me while in cancer treatment. (effects of chemo and steroids made sleep difficult so a surgeon sent me to a psychiatrist to supposedly “get help with sleep meds”)
The public doesn’t realize if you mistakenly come under the crosshairs of psychiatry while dealing with physical illness a psychiatrist can write whatever absurd, damaging nonsense they want about you. A person dealing with physical illness and who has NO mental health issues can still be defamed and their future destroyed with psych ‘diagnoses’. Then after you gather and present all the hard evidence proving the judgements and ‘diagnoses’ were erroneous it is impossible to get medical records corrected. For some reason psychiatrists are entitled to make hasty, biased, incompetent and unsupported ‘opinions’ and will not be held to account or have to correct erroneous ‘diagnoses’ aka biased opinions. Whereas all other types of ACTUAL medical diagnoses on a person’s records can and will be corrected when shown to be erroneous. So the trauma and harm inflicted by a psychiatrist is often ongoing and compounding as it negatively affects your future health care for the rest of your life.
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THAT’S what a “psychiatric diagnosis” is: A BIASED OPINION.
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….and a harmfull one.
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Thank you for telling your story. It’s frightening how often especially women patients are simply not believed. And when people aren’t believed, doctors love to slap the mental illness label on them. What happened to you was wrong and I am so glad you got away and found help.
When I developed ME/chronic fatigue after a mono infection, I was given antidepressants (which caused akathisia) and then yelled at when I stopped them due to these severe side effects. The doc actually asked me why I “ liked going to the doctor so much”. I finally lost it, told her I hated the appointments, couldn’t afford them and was not coming back. Only then did she mention the possibility of ME, but said a diagnosis “doesn’t matter” because there is no treatment.
Hoping that maybe with the research on long COVID doctors will begin to take those with chronic illness a little more seriously.
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As others have mentioned, thank you so much for sharing your story and insights. Very disturbing. As well concerning psychogenic nonepileptic seizures and access to appropriate treatment:
“Patients with epilepsy have an elevated mortality rate compared to the general population and now studies are showing a comparable death ratio in patients diagnosed with psychogenic nonepileptic seizures. The latter is a top differential diagnosis for epilepsy and the unexpected mortality rate in these patients underscores the importance of an accurate diagnosis. Experts have called for more studies to elucidate this finding but the explanation is already available, embedded in the existing data. To illustrate, a review of the diagnostic practice in epilepsy monitoring units, of the studies examining mortality in PNES and epilepsy patients, and of the general clinical literature on the two populations was conducted. The analysis reveals that the scalp EEG test result, which distinguishes a psychogenic from an epileptic seizure, is highly fallible; that the clinical profiles of the PNES and epilepsy patient populations are virtually identical; and that both are dying of natural and non-natural causes including sudden unexpected death associated with confirmed or suspected seizure activity. The recent data showing a similar mortality rate simply constitutes more confirmatory evidence that the PNES population consists largely of patients with drug-resistant scalp EEG-negative epileptic seizures. To reduce the morbidity and mortality in these patients, they must be given access to treatments for epilepsy.”
Source (fulltext link below): Catherine A Carlson. Psychogenic Nonepileptic Seizures-High Mortality Rate Is a ‘Wake-Up Call’. J Pers Med. 2023 May 25;13(6):892. doi: 10.3390/jpm13060892
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10302674/
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Yes. So sorry for your horrible treatment. Autoimmune disorders are another whole group of conditions that have many different symptoms, including emotional and mood issues, and often are overlooked for years. 70-80% of many autoimmune disorders attack women. Doctors and health professionals need to be retrained.
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Yes, it seems a misfortunate event happened to you. But it can be a big lesson for others as not to repeat it.
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Hi Laura, hi everyone. Thanks so much for your story. I have ME so I have unfortunately heard of many stories of misdiagnosis and medical malpractice / psychiatric violence that people have experienced with this ailment. According to the documentary Unrest by Jennifer Brea (at the moment you can watch it on Youtube) who also got ME and wasn’t taken seriously by medical staff this goes on for decades.
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Especially hard when your landlord by force of desperation internment is ministry of heath of canada and you tested for mold and can’t get it in heard in court mold affirmative and landlord fights for alleviating their liability actually since 1984 I have lived with high mold ottawa ont flooding has cause a ton of black mold in living situations I don’t see the govt workers arbitrarily detained and misdiagnosed especially in my case79 microbial experimentation gynecological…yes psychiatry is a profession of invalidating and discrediting without proof or logic just ignorant statements by forked tongue two faced classist unconscionable narcissistic gaslighting liers.
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Wow, I’m surprised you were even allowed to say that about psychiatry on this website.
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It’s a metaphor, I am no lawyer, but it, in textual analysis, I am no expert, does not contain factual statements that could be considered, I think harmfull.
“psychiatry is a profession of invalidating and discrediting without proof or logic”, without proof or logic sounds factual to me, but harmless, sounds like an informed opinion 😉
” invalidating and discrediting” follows from that premise, even if its, as conclusion, before.
Like in: claiming something without proof or logic is invalidating and discrediting when, hidden premise, for example is also stigmatizing.
“just ignorant statements”, looks a claim, but it’s part of the argument in the previous part of the sentence, it clarifies the without proof or logic. And even if a claim, it’s undefined, but “without proof or logic”, actually could be considered ignorant of proof and logic.
And it might be very defendible as claim going to the DSM itself.
” by forked tongue two faced classist unconscionable narcissistic gaslighting liers”, that’s a metaphor, it starts with forked tongue, who is going to believe in a court of law, as average citizen that it’s a factual statement?.
I can’t imagine or interepreting it as inflamatory or causing economic harm to any non forked tongue person. So other than the eye grabbing quality, I think it’s relatively harmless and quite artistic. As art, it’s even more defensible.
As art, it’s quite a riposte…and not only very appropiate, almost unavoidable…
Don’t take my analysis as factual, it’s just fun 🙂
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Dear Laura, Thank you for sharing your experiences with this condition. How unfortunate that you had to suffer and be mistreated by doctors unwilling to take you seriously and to research your condition. It’s a crime what psychiatrists are able to get away with as they harm people. I wish you the best of luck with your recovery and with reaching out to make change to improve the medical system. I admire your tenacity and courage.
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Thank you. It’s been a long road and still longer yet. But all for a good cause. I was not aware of any of this until these illnesses struck me down. And I want everyone to know how these people suffer, not just physically but with not being believed by the ones who are supposed to help them and even their family members.
I filed a complaint with HHS who helped the hospitals create a form to offer patients who disagree with the information in their records. Unfortunately, it’s only an amendment. But I’m working toward expungement laws and educating physicians because chronic and difficult-to-diagnose illnesses are not going away. In fact, they’re gaining on the population while the medical community seems to know less and care less. Not a good combination.
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I am not encouraging nor advising, but from what I understood from the narrative, one big problem I noticed is that apparently during your hospitalization there seems to be a confusion between signs and symptoms.
Certainly medicine can be considered an art, but signs are not open to artristry. There is competence and excellence, mastery at being a clinician that uses signs and symptoms.
But sings can be made objective and are easier to spot, easier to study with laboratory, imaging, etc., than mere symptoms. Which can be more easily dismissed as “psychological/psychiatrical”.
So, weight loss, hair loss, anemia, weakness, and some, are studied with clinical tests: visual inspection, neurological/muscle clinical tests, etc. Not with mere “interrogation”. Not doing clinical neurological, specific, tests in a patient with weakness might be negligent (maneuvers in the lingo). Beyond the little hammer and knee jerk reflex. Inspection of the thyroid gland by touching it for instance.
Looking at the patient is not doing a physicial exam, I can look myself in the mirror and I am not giving me a physicial, so to say. Following on the findings of signs, not symptoms, might be more easily seen and proved as negligence than “mere” failure at symptom analysis.
Like missing a “mole” that is cancerous is way more negligent than missing a headache that, alas, had a brain tumor as cause. I think. Specialy if given the signs, not the symptoms, it had to be done, it’s undeniable that it was visible, so to say…while a symptom is more open to interpretation, I think.
And tending to show harmfull negligence when, if done, it could have lead to the diagnosis earlier, and without the at least delay in treatment. That would be a harm, innappropiate treatment would be another. But I am no lawyer nor giving legal nor medical advice.
So if there was demostrable negligence maybe it would be easier to show focusing on the omissions in signs analysis, not just the symptoms.
Even not documenting those could be negligent, as in “how could they miss that?”, which, again, is easier to defend with just symptoms. And the physical targeted exam has to be full and systematic.
Saying someone is underweight is a symptom of something sounds lacking expertise, it’s a sign, not a symptom.
And again, harm has to be proven, I think for negligence.
Maybe trying to correct the record not because it is wrong, erroneous, but because it’s incomplete, and that is or could be harmfull for the patient’s health. It needs to be ammended, added, full, so it’s not used in a risky manner against the patients health.
Like I am allergic, the record does not say that, then that needs to be in there, just in case, sort of thing.
That could lead to some sort of expungement, I don’t know, I am not an expert, at least at that…
And being complete for health reasons seems only medical, and is something, perhaps a medical board is uniquely authorized, has specific jurisdiction to act upon. As opposed to legal issues. And perhaps it can push it farther enough to address the legal issues.
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What a nightmare. Thank you for sharing your story. And…
Honestly? I had very serious physical problems caused in part by psychiatry and the response was punishment for so called non compliance and over billing…plus no actual treatment for my health problems. Long story but I can relate because…
Especially when dealing with psychiatry the level of cruelty is extreme. And it’s not a couple of horror stories here and there….
It’s the whole industry.
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Yes, I believe it’s the whole industry because they’re afforded so much protection from the laws, hospitals, and judges — even when they have no proof of mental illness, only their subjective judgement. The laws are backward and dangerous and breed corruption in the psychiatry field, with no rights or recourse for the patient. They need to be stopped.
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Regarding your medical records, and the statement that they refuse to remove records because medicine is an art, not just a science, I had a similar experience with misdiagnosis. When I inquired at the hospital about correcting the records, they stated they could only correct facts. They also stated to me that I could add to the record any additional medical documents or a personal statement in order to correct information I felt was not accurate. But this is all about what I was told. The best thing to do is look up the state statutes in your state regarding the actual law in regard to your medical records, or consult with an attorney, or preferably do both. People can say all sorts of things. What counts is what the law states. So find out what the law says and insist upon your rights based upon the law. That’s my recommendation for what it is worth. My medical records said all sorts of stupid things including that my father was dead when he was very much alive. Sometimes medical records from another person can get mixed up into yours which is also what happened to me. Best of luck and thanks so much for sharing your story which, awful as it is, provides validation for others in similar situations.
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Thank you for your comment. Yes, the laws in Texas, where I live, don’t allow for expungement, just amendment. The hospitals weren’t even aware that they needed to have a form to send to patients so they could request amendment of the information in their files, but I contacted HHS and they worked with the hospitals to create this form which I finally received.
I found out that New Jersey and Pennsylvania patients with misdiagnosed mental illness and unwarranted involuntary commitment use gun rights attorneys to have these records expunged, so I’ll be presenting elements of those state laws to our lawmakers. I know it won’t be easy, but someone needs to do something to give innocent ppl rights.
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Totally agree on that, but perhaps a mixed medical/attorney approach could be more effective?.
Like a medically assisted strategy to anul the bad effects of the clinical record as it stands now. Like make the “bad claims” in the record ineffective by using not just the law, but medicine, and it’s logic to achieve it’s nullification.
That might not be in the expertise of a lawyer, and it might require a more mischievious approach that might not be evident to a lawyer, perhaps not even as possibility.
Fighting “medical” facts with other medical facts in a way to cancell what is to be canceled is uniquely medical, not legal, and that is not always clear for the non-medicals 🙂
In a court of medicine, instead a court of law, even if “administrative”, in a targeted, deliberate way. Don’t know the legality of that, but physicians do it all the time: it could not be that because there is this, kind of thing.
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Wow! Sorry to hear this happened to you. Thank God you got help. While reading the article the most glaring thing screaming at me was……… There is NO test for Mental Illness, yet they jumped on that bandwagon instantly. How sad, Lazy , Uneducated Doctors are becoming the Norm. They think Chemistry is the answer to everything! I read the book, ‘I’m Dancing as Fast as I can” years ago regarding a woman that had severe withdrawal symptoms when she stopped her Valium instantly. She went to Bellvue in NY. The book revealed how it was a true crap shoot as to whether you got a Dr. that cared or a sick twisted one that liked to play games with their patients head. Then on a long trip I listened to the audio book, Weekends at Bellevue: Nine Years on the Night Shift at the Psych ER. The Dr. made Fabulous money taking the weekend shifts. This had nothing to do with truly helping people, it was a Triage deal. Weed out the fakers looking for drugs, quick check for illness interview, then transfer to Medical and are they a risk to themselves or others dangerous category. Drug ’em and get in a bed, pass on to weekday Drs. The author finally comes to terms with all this and stops the ER Psych work and opens a private practice to actually help people. It finally dawned on her, she NEVER actually helped patient. Then did a 180. It’s truly jungle out their when you go near a Dr. or Hospital for any reason. Sad day when the patient had/has to find the diagnosis to get proper care! We all need to Manifest a better way forward.
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Thank you Laura. Your story is so validating to me. I spent the last eight years going from doctor to doctor (85 total), spending over $150,000 only to be told it was all in my head, or because I am gay or because I have a tattoo. Even my therapist at the time told me to stop searching for the cause, which fortunately I would not. This past spring an acupuncturist was able to link my symptoms to MCAS/mold and I found an MCAS/mold literate osteopath and I am finally improving.
I hope you get 100% recovery and justice, and I hope the health industry gets their act together for the welfare of the thousands of those undiagnosed with MCAS still being medically abused.
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Thank you for sharing your story too and it’s great to hear an acupuncturist was able to help you.
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Thank you for your comment. There are so many of us out there who go through this horrible ordeal, and it’s just wrong–and fixable, but no one will fix the problem. We’re so advanced in so many ways, but not in taking care of our chronically ill. Yes, I was told by a psychiatrist that I just needed to “get up, go back to work, go back to the gym and quit looking for a doctor to help me.” UNBELIEVEABLE! Did he really think I wanted to be in that hell hole of a mental hospital? Yes, I spent probably over $100K on everything as well.
I’m so glad you found someone to help you and that you’re healing.
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“medicine is an art, not a science“
OMG!
I can’t even count the ways that this response is offensive and harmful. You can’t have it both ways!! How many times have they also said “evidence based medicine” last time o che led ART has nothing to do
With evidence. Science is designed to be objective and guided by data; art is subjective and deeply influenced byfeelings and opinions.
Well if medicine is an art and art is based on opinions and feelings then are they saying there’s no way we will ever progress or learn from our mistakes and change any current or past feelings or opinions. That sounds like the words of someone abusive and insane.
And are they saying “artists” are not liable or responsible for their mistakes in our society? Is once a piece of art in place in let’s say a museum, it can never be removed because it’s “art”
That’s ridiculous!! Art works are destroyed or removed all the time!!!
This is awesome actually. I think that next time I make a mistake, I’ll just tell whoever I hurt it was
An act of “art” and then I will no longer be responsible for my actions.
Wow! The things That come out of the mouths of these people! And these people are in charge of whoever they deem delusional? The animals are indeed the zookeepers her.
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Yes, great points! Thank you for your comment.
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Great story, Laura.
Here’s mine: I had celiac
as a teenager before it was
recognized as a disorder in
the early 1950s. Because
of massive doses of antibiotics, it morphed into
classic fulminating pyoderma
gangrenosum which went unrecognized till I was flown
to Miami before doctors could
amputate my leg. As I lay dying, the pilot finally accepted
my mother’s check because
she didn’t have cash. The dermatopathologist made the
correct call, but was overruled
by the resident in charge of
my case. Her diagnosis was
factitious dermatitis secondary to paranoid schizo-
phrenia. I was eventually given
trilofon to shut her up. A couple of years later I made
it to Mass. General and Thomas Fitzpatrick and the
problem was solved. The scope couldn’t even pass the
splenic flexure. I was a bloody
mess. The GE guy and endoscopist were embarrassed because they
thought I was a nut. Fitzpatrick had a good laugh
at their expense.
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Oh, that sounds awful; I’m so sorry. Yet another life-threatening blunder made by the physicians that’s blamed on the patient. This makes me so angry — there just aren’t words strong enough to describe these idiots.
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I experienced a medication induced psychotic break. I took all 11 of my pill bottles to two different physicians before it happened. I did so to ask if there was some way I could take less meds. I have four chronic conditions. One doc’ did nothing, the other changed one of the meds. I contacted my PCP through the portal when I started to become psychotic. She never saw the message. Had I not already been psychotic I would have handled that part differently. I won’t want to take up anyone’s time with such details as explaining things to a host of medical residents at the hospital. Nor, the ongoing results when a charge nurse became furious with me about something I told an MD. My cat was home with no water or food for, four days because no-one called my emergency contact. While my records indicate my psychoses was due to medication; any professional or educational articles I have since come across listing the causes of psychoses, NEVER include medication.
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Dear Laura,
It is so impressive how you have shared your compelling story with such a clear, concise and to-the-point approach. It is also wonderful to hear that you were able to find treatment for the underlying cause.
Without lived experience, I don’t think most individuals in our society understand how being labeled with a psychiatric diagnosis can impact our personal freedoms and rights, including the right to medical assistance.
When used as professional opinions, the concepts created by the American Psychiatric Association and listed in their diagnostic manual, can easily allow others to take authority and control over restricting our personal freedoms and rights far beyond what a reasonable person could ever imagine.
Recently a Florida lawsuit against Johns Hopkins All Children’s Hospital resulted in the jury awarding $261 million in total compensatory and punitive damages to the family of Beata Kowalski.
The hospital suspected child abuse and hospital employees accused Beata of having Munchausen syndrome by proxy.
After almost 3 months of being separated from her daughter, Beata committed suicide in January of 2017, at the age of 43. “I’m sorry,” she wrote in an email discovered after her death, “but I no longer can take the pain being away from Maya and being treated like a criminal. I cannot watch my daughter suffer in pain and keep getting worse.”
The Kowalski family sued the hospital over allegations of malpractice, false imprisonment and wrongful death for causing Beata to take her own life.
Their story was chronicled in the Netflix documentary Take Care of Maya.
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That’s intense. As someone who has experience with how the medical system will back you into a corner myself, I wonder if that was the only way she could see to get her daughter’s case taken seriously. It shouldn’t have had to be that way. I’m glad that her tragedy at least has made a statement, as sickening as it all is.
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I’ve got mold toxicity too. That and undiagnosed sleep apnea. Misdiagnosed and misbelieved since childhood.
It’s horrible. It’s destroyed my trust in myself and others. Your mold sickness is much worse than mine. I can hear your frustration and and in your sophisticated attempts to become super articulate in the face of an incoherent and oppressive system that simply will not listen. I hope you find relief now.
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Does the state where you were committed have expungement procedures through the courts? I hired a lawyer and got an involuntary commitment expunged, 2nd amendment rights restored.
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No, I’m in Texas and we don’t have those laws. But I’ll be working to get new legislation here. What state are you in. I saw that only Pennsylvania and New Jersey have expungement laws.
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Pennsylvania. My lawyer happened to be a civil rights attorney rather than a gun rights advocate (referencing your comment above). But I can see how the gun rights angle may get you farther with Texas legislators than civil rights.
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Wow Laura, what a story – I have deep empathy for you! I’ve had two experiences where doctors misdiagnosed physical illnesses as mental illness. The first was in 1996, when 2 days after I got a flu vaccine, I woke up with what felt like the worst flu I’d ever had, but also included neurological symptoms of extreme weakness and vertigo. The symptoms went on for weeks – I had to quit a full time job suddenly, and as a single mother of a girl about to graduate from high school, had to apply for state welfare, and then Social Security disability. I found a lawyer to help with the Soc. sec.
application process, who said I’d need strong paperwork documentation to get approved. I found a doctor who diagnosed chronic fatigue syndrome and fibromyalgia. Because I was still experiencing neurological symptoms, especially extreme vertigo, I went to a neurologist at a big Boston hospital. She was in her first year of practice. She seemed warm towards me at first, and I explained which tests I wanted done – an MRI of my brain, and an eeg test of brain waves. She ordered these, and they both came out abnormal. I asked her what the diagnosis was, and she said epilepsy n.o.s.
(Which means “not otherwise specified”; when I asked her why, since id never had a seizure, she said “We have to have a diagnosis for insurance so they’ll pay us!”. I saw her a few times after that, and she grew increasingly cold and impatient with me, as if she’d done her job and was finished with me. I was blindsided when I got my paper records of my visits with her, to give to Social Security. On the last page, she had written that I kept asking her for unnecessary medical tests, and that in her opinion I was suffering from “hysterical conversion reaction”! I looked that up, and was furious to discover it’s basically a fancy name for hypochondria – when the patient imagines they have all kinds of illnesses. I also discovered that it was a diagnosis used by psychiatrists (which she was not), and that it had not been used since the 60’s! Needless to say, this completely sabotaged my application for Social Security disability, since I had to submit her notes to them! It made me so angry that I had to fight the hardest I’d ever had to fight, at a time when I was sicker than I’d ever been. Soc. Sec. denied me immediately, and I had to get a more aggressive lawyer, who found other doctors who saw me, gave me their own tests, and eventually I got approved. The second, more recent experience I had with this, was a year ago, when, following three intense unstoppable nose bleeds in one month (requiring trips to the emergency room, with doctors working on me over an hour each time to stop the bleeding), I started feeling very weak and dizzy again. I was experiencing intense anxiety, depression, and dizziness. My primary care Dr. started pushing antidepressants and anti anxiety meds. I resisted, since I had a gut feeling that wasn’t the problem. I asked her to test my iron levels and ferritin, which she did, and they came back very low. I was anemic! Not surprising following losing so much blood. The Dr. said she thought the iron would “resolve itself” over a few weeks. I told her I wasn’t comfortable with that, and started researching the best-absorbed iron supplements. I now have raised my iron level back to normal, and have more energy than I’ve had in years. I used to be very passive and submissive to doctors – not anymore! I now take my health into my own hands, as much as is possible and reasonable. Medical “gaslighting” of people, especially women, is very real!
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Yes, there’s a lot of bias toward women in medicine — even from women doctors. The PA at my gastroenterologist’s office told me when I caller her in tears because of the extreme pain: “Laura, you’re not in pain and you’re not having difficulty breathing. You just need to help yourself. If all you can do is drink a banana shake, then that’s what you need to do.” It was unbelievable. I definitely could not drink a banana shake. I refused the meds she gave me bc they caused a very scary reaction due to the MCAS, so that made her angry and she became very short and firm with me and rolled her eyes at me, then offered me Xanax, which I refused. It was such a terrifying and hopeless feeling to be in this situation.
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Wow Cynthia and Laura, I am so sorry for everything you have experienced with the mental health system and medical system that is in an extreme crisis. I’m reading the comments from you Cynthia telling your story and I want to thank you for sharing as I have been through the ringer of the mental health system and medical systems that have misdiagnosed and mistreated me greatly affected my health in major ways. I’m not sure how much I can share as very lengthy long journey that began 30 years ago but even before I this was in suffering much. I had a long very difficult and dangerous journey with anorexia which began at 9 years old and thankful to God was healed,it will be 5 years in February and I will be 62 years young. My eating disorder was result of many years of multiple sexual abuse and trauma. I was not the girl who wanted to be skinny as was always underweight and I never wanted to look like anyone else in magazines or other things that people would say about young women who have eating disorders. There is so much more attention given now than when I was younger and I must say that the attention has only increased incidence of eating disorders and misdiagnosed disorders in very young girls and it’s very harmful and dangerous and damaging to them. I have been working on writing my journey story for years and I now feel ready to actually do it yet need guidance with someone else as will be reliving experiences and I don’t want to do alone. Well getting back to all your stories and mental illness I reached out finally 30 years ago to get help with help me to eat. I realized that the Holy Spirit led me to the end to ask for help when I had been taking care of my nephew from when born until he was almost 2 and one day as was the daily routine he fell asleep on floor on his blanket and I was leaning down to pick him up to put him in his crib and I couldn’t because I didn’t have the strength to lift him up and he was a average baby. I sat on couch and started to cry which I had not done since I was a toddler and I got the phone book and called every hospital in the yellow pages and I was on the last one and I prayed God please let someone have a answer for me and I asked and they said yes we have a eating disorder program and I said ok what do I need to do next. I honestly don’t remember how I got to the hospital but I remember the first thing was an intake which was very invasive and demeaning. The nurse then led me upstairs and opened up the door and said go ahead and I walked in and she behind me and then I heard the door click and I looked around and I knew that I was not in a place that looked right for help and I was right as was a locked psychiatric ward. That was the beginning of being stuck in the system and then the abuse of nurses etc and treatment began. I never took medication not even Tylenol and the first morning the nurse flipped lights on at 5 am and came over to me with a little cup and said here take this and I was terribly shy and I asked what is it and she just said the doctor said will make you feel better well for 3 mornings she came over and I said no and she said your being non compliant and so the 3rd morning I was frustrated and I had enough with the nurse so took the medication and right after she left thank God I had a roommate as I fell on the floor and had a seizure. The roommate went get the nurse and she said that you look fine you didn’t have a seizure and get up and get dressed for morning meeting well I couldn’t feel my legs and I couldn’t get up. The nurse came in and I was in bed and she came back with another nurse and dragged me to the meeting. I was petrified. The story of many psych admissions began and I don’t have the time to tell all. I will say that about 6 years ago I was on 21 psych medications and I asked myself one day who am I? I prayed and prayed and asked Jesus help me get off these drugs and I want to know who I am. Please note that I did this very carefully and I titration the medication. Do not ever just stop taking medication ok please. I was told by my psychiatrist that one of the antipsychotic medication I would have to take for rest of my life or everything that it has taken away will return. This was frightening to me yet I prayed asking Jesus if can help me get off this medication and no side affects and none of the symptoms came back then I can do the rest of medication. I’m off all psych medication and I have never felt better. I came to thinking about this and I realized that a lot of the so called diagnosis that I was told had I believe wholeheartedly that they were medically induced and caused my symptoms that before medication I didn’t have any symptoms that I was diagnosed with. I also have medical conditions that were not diagnosed and still have been trying to get doctors to listen to symptoms and not just test and the numbers game that everything is normal and yet the symptoms have gotten worse and they are not to do with anything mental illness. One last thing as I could tell lots more stories of psychiatric hospitals and doctors and nurses that would make your blood curdle for sure. I have often said that I have been treated very poorly and different by doctors and going to er and new doctors and I learned that the name is gaslighting is so real and very very dangerous and causes me not to seek medical help much unless extremely necessary because of the fact of the demeaning and disgusting treatment if call that of professional medical professionals who come in say hi ask questions and leave and return and the attitude has changed drastically and I know that they have read my chart and long history psych diagnosis that most are not true and they treat me like I am crazy or worse. I have asked to have diagnosis removed from my medical chart because it is wrong misdiagnosed issues and I was told that they don’t remove because it’s my history. History that is false and not me yet I am stigmatized and judged by words psychiatrists have documented. I will say one last truth of my misdiagnosis of having dissociative identity disorder and I was told by a couple of therapists in sessions over the years that I have past tense had 23 personalities. When I say that it’s done a number on my life it’s just one diagnosis of misdiagnosed disorder which I have to say that I am just me one me that I am a child of God who loves me and accepts me and has completely transformed my entire life and I will say that I’m so grateful and thankful for who God made me to be. I am free!! Thank you all for sharing and praying my sharing helps another. God bless you all.
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I have been going through a similar experience since 2022, after living in a very wet, moldy environment for 4 years. I have brought up mast cell activation syndrome multiple times, but it always gets dismissed. I am in awful shape, bed ridden and all you said, but all I ever hear from doctor after doctor is “all your bloodwork is fine”, and I’m further gaslighted.
Having “depression” or a psychiatric disorder in your chart is the kiss of death, it makes it nearly impossible to get help because it’s like a free pass for doctors to write you off. And this happens to women constantly, even when they have a findable medical condition (my aunt was forced into psychiatric hospitals for *decades* while she became sicker and sicker, turns out she had Crohn’s). Everything is always “psychological” (or “stress”) if you’re female. The field of medicine is absurdly broken and callous.
I am so grateful that your story showed up in my MIA email! This is such an important topic that needs attention. And I’m sure I’ll be sending this to some of my doctors.
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Thank you for sharing your story. It’s unacceptable but it continues to happen. There are just so many stories like ours. I wish someone would take this seriously and change the way doctors work and diagnose patients. I had one allergist/immunologist tell me not to come back after I sat in his office in tears begging him to help me when I was so incredibly sick and couldn’t get a diagnosis. They don’t even do their jobs and it doesn’t matter because they still get paid. There are no ethics anymore in the medical community; it’s just about money, and peoples’ lives are secondary and unimportant.
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Thank you for sharing this terrible story. So happy for you that you found the right doctor and recovered. Is not it possible to sue the psych hospital? I know it’s very hard to sue psychiatrist, but this is so glaring. And you have documents from your physical doctor.
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The statute of limitations for filing a medical misdiagnosis or malpractice lawsuit is 2 years. I was not able at that point to go through a lawsuit because I was still very physically ill and I didn’t even get the correct dx till 2 1/2 years later. I tried to find an attorney who would sue for libel (the false damaging info in my records that could be disproven), but they never returned my calls and inquiries. Apparently, in Texas, it’s unheard of to try to get false information in medical records expunged. I’m now trying to change this.
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Thank you, Laura for exposing how psychiatry is a potential menace to anyone seeking legitimate medical care, and that psychiatry itself is a social ill that deserves to be eradicated as soon as possible (in my opinion).
Hiding behind the phrase “medicine is an art, not a science” while claiming that “mental illness” is biological without any biological tests to “diagnose” it is not only outrageous but a threat to everyone’s basic human rights.
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Psychiatry is medicines “circular file” (trash can)
They dont like you, in you go.
They cant figure you out, in you go.
And once there no one cares if you have a physical illness or not, they want you to die trying to find your way out.
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Yes, you hit the nail on the head. That was exactly my experience with psychiatrists.
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