The following is a comment I submitted as written testimony for a legislative hearing in Oregon regarding reclassifying various pain disorders with Somatoform Disorders in the state's medical code system:
I wish to address the proposal to group Fibromyalgia and chronic pain disorders with Somatoform Disorders. When a patient presents to the doctor with physical symptoms, including pain, there is nothing scientific about assuming that the patient has a mental health condition rather than a physical one, and that mental health treatment is appropriate. Cursory testing does not rule out the presence of a physical condition. Many legitimate physical conditions aren't correctly diagnosed for many years, and may be misdiagnosed many times in the process. For example, on average a person with celiac disease is properly diagnosed 8 years after first presenting to a doctor with symptoms. During those 8 years, it can be said that no physical cause has been found for the patient's distress, but it makes no sense to say that they have a psychiatric condition that they are miraculously cured of when they are finally correctly diagnosed with celiac.
The fact that there are simply so many physical conditions with a significant lag time between the time when a patient presents with complaints and accurate diagnosis should cast doubt on the usefulness and even the existence of actual somatoform disorders. I lost count a long time ago of the number of cases I know of in which a person presented to the doctor with pain and other non-specific symptoms, was patronizingly dismissed and told to get counseling, eventually given pain meds, and then finally given testing only to be told that they have late stage cancer. In a number of cases they were actually told "if only you'd come in sooner, we could have treated it". Many of those people died. It is also worth noting that new disorders are still being discovered, that medical testing is never 100% accurate, and there are over 7,000 rare diseases listed by the National Organization for Rare Diseases.
Somatoform Disorders are basically the updated name for "hysteria", an archaic concept based more on the misogynist ideas of it's time than any physical reality. At that time, medicine was considered "scientific", but not exactly in the way we see it now- as a practice based on the sciences of biology and chemistry. At that time, eugenics was considered science, and was deeply enmeshed in the theory and practice of medicine. This historical reality has been swept under the rug, but the pseudoscience of eugenics still lingers in the medical practices of today- and I believe that the concept of "Somatoform Disorders" is one example.
The practice of medicine requires that patients be listened to and treated as the experts about life in their own bodies. Treating them as misbehaving children, putting on a show for attention, has no place in a scientific practice. I myself was subjected to this gaslighting and abuse for years while struggling to survive an illness which is life-threatening on a daily basis. I was shamed and shunned until I myself arranged to have a tissue sample from a previous biopsy prepared by the lab that was storing it according to the instructions I got over the phone from the leading pathologist in the country for the disease that I knew I had, and then shipped to her hospital by Fed Ex. Once she gave me the diagnosis, I was taken seriously and received more than 10 additional diagnoses.
The delay in treating my medical condition, which I had been both laughed at and yelled at for daring to suggest I had, caused my condition to degenerate such that I have lived on life support since then. At my lowest point, I was on oxygen, unable to eat and dependent on IV nutrition to survive, requiring continuous infusions of 2 medications, needed a central line which has resulted in 2 DVTs and 15 blood infections, was mostly bed bound, my back broken in 5 places, unable to take any pain meds and needed to undergo my surgeries without anesthesia, had skin cancer removed, had all of my teeth removed due to breakage, have had multiple heart attacks, and more. There are many, many other people like me. Most haven't survived. You could say that "Somatoform Disorders" have a very high fatality rate- but not for the same reason that other deadly disorders do. Please, it's the year 2024- isn't it time that our medical system reflected that?
This recent study shows examples of people with legitimate physical disease who were misdiagnosed with psychosomatic and psychiatric conditions, and the long-term harm it did them:
“I still can’t forget those words”: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses
"Patient-reported psychosomatic and psychiatric (mis)diagnoses are
associated with persisting adverse impacts in multiple domains including
mental health, medical relationships, self-worth, and some healthcare
behaviours. Health services and clinicians should consider these
potential adverse impacts on patients and offer support to reduce any
persisting negative impacts."
The Martha Mitchell Effect
Martha Mitchell was married
to the attorney general in the Nixon administration, John Mitchell. She
spoke up about the illegal activities that she was witnessing, but her
claims were written off as delusional until the actual events of the
Watergate scandal became public, when she was vindicated. Sometimes a
patient reports events to a doctor or other health care provider that
the provider finds difficult to believe and considers to be delusions
even when what the patient is reporting is actually true. This is
called the "Martha Mitchell effect"
in reference to her experience of being wrongfully considered
delusional. This is particularly likely to happen when a patient's
symptoms are the result of the malicious actions of another person, such
as harm resulting from harassment or abuse. This might include
poisoning, stalking, gangstalking (group harassment), or gaslighting.
Abusers sometimes deliberately do things to their victims that make the
victim sound crazy if they report it. This is also more likely to occur
if the patient reports harm from a medical procedure, treatment, or
another medical provider, or from someone who is powerful or well known.
This
effect was seen recently when some people presented to the hospital
during the COVID 19 pandemic suffering adverse events from the COVID
vaccines and were diagnosed as delusional when they were suffering
actual side effects that were later acknowledged by the medical
establishment and public health authorities.
Examples of medical gaslighting include:
Inappropriate Sinus Tachycardia
https://syncope.co.uk/inappropriate-sinus-tachycardia/
“Like Postural Tachycardia Syndrome IST is underappreciated by many in the
medical profession and many doctors mistakenly consider it to be a
psychological condition. People with IST can find themselves increasingly
disabled and may experience high levels of anxiety.”
The Case of CIRS (Chronic Inflammatory Response Syndrome) and Mold Illness
There are many examples of medical conditions that were first described by patients and doctors, for which no physical cause was found for many years. They were given "placeholder" names as syndromes until such time as their biological mechanism could be figured out, which they eventually were. There is a list of conditions including Sick Building Syndrome, Chemical Sensitivities, Environmental Illness, Chronic Inflammatory Response Syndrome (CIRS), Toxicant Induced Loss of Tolerance (TILT), Mold Illness, Biotoxin Illness, that had been identified accurately based on patient reports, and in some cases treatments were even discovered based on patient reports of benefits. These conditions are now understood to be manifestations of Mast Cell Disease, Mitochondrial Dysfunction, and genetic variants that limit detoxification of various compounds capable of inducing excessive inflammation, among other things. The biological understanding came in time and validated the experiences that patients reported.
