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.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.