From demonology to neurology, the medical establishment has a long history of misinterpreting the ailments of women as expressions of their psychological frailty.
Most of us are vaguely familiar with the history of "hysteria," a wastebasket diagnosis used to explain away symptoms ranging from depression to homosexuality to seizures. Hysteria wasn't rejected as an official medical diagnosis until the 1950s, when it was removed from the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association. However, in practice, hysteria diagnoses never really disappeared.
Today, the practice of dismissing the symptoms of female patients as manifestations of psychological distress remains endemic, and this would appear to be generally true for all patients assigned female at birth, regardless of gender presentation or identity.
Conversion disorder, or somatic symptom disorder, is a widely misunderstood yet liberally diagnosed mental illness which describes the mechanism by which survivors of trauma "convert" their psychological distress into physiological symptoms. A diagnosis of conversion disorder can happen in the emergency room, in a general practitioner's office, or during a specialists' appointment, but, notably, a psychologist is rarely present. The consequences of this lack of discretion can be life-threatening, and women are up to ten times more likely to be diagnosed.
It's important to note that conversion disorder is a very real mental condition, entirely out of the control of those who suffer from it. It appears most frequently in those with post-traumatic stress disorder. Conversion disorder is not to be confused with Munchausen's Syndrome or "attention-seeking," as patients are often totally unaware of the psychogenic origins of their symptoms before seeking medical attention. I would argue that conversion disorder's wastebasket status cheapens the experiences of these trauma survivors. Moreover, diagnosing a patient with conversion disorder -- correctly or otherwise -- does nothing to make mental healthcare more accessible, and often ignores and under-treats the functional symptoms of the disorder, leaving the patient stranded and without support. The current system has created a care gap regardless of the diagnosis' accuracy.
While a pre-existing psychiatric history is a risk factor for diagnosis or misdiagnosis, it is by no means a requirement. Patients experiencing anxiety or depression because of their physical symptoms may find themselves trapped in a seemingly never ending chicken-and-egg argument with their doctors. This commonly results in the prescription of psychiatric medications. These patients may even be pressured into seeking out therapy -- which is costly for some, and entirely inaccessible for others -- in order to prove that their symptoms aren't psychogenic. This occurs before the list of possible organic causes has been exhausted. Once a diagnosis of conversion disorder has been assigned, it is difficult to expunge from one's records, meaning it often impacts care for years, sometimes even after a correct diagnosis is made.
Brenda, from Calgary, Alberta, was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2014.
"My care was consistent and seemingly on-topic until my diagnosis of borderline personality disorder following a suicide attempt in 2017. Following my diagnosis, I've had a number of doctors treat me according to what they see as a red flag on my chart," she said in an interview with rabble.ca. Brenda, as well as others who were interviewed for this article, requested their last names be withheld for privacy reasons.
"I've had doctors tell me I should wait for my next psych appointment when I'm having real sensory issues, ones that can lead to serious injury. The long term consequences of having an MS relapse and not addressing it can lead to physical disability. I now have lesion activity on my brainstem that I feel definitely could have been avoided."
Neurological movement disorders, multi-system chronic illnesses and chronic pain disorders are among the most frequently misdiagnosed as psychogenic. This is especially true for conditions primarily affecting women.
Many multisystem chronic illnesses commonly referred to as "rare" or "difficult to diagnose," are often neither; instead, their prevalence is skewed so far in the favour of women that their diagnosis is almost always delayed by the systemic barriers which female patients face. Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS), for instance, often take upwards of five years to diagnose correctly, despite a relatively straightforward diagnostic criteria.
Because no diagnostic tools for objectively measuring pain exist, anecdotal evidence remains the basis for many diagnoses, and doctors are tasked with deciding which patients are reliable historians of their own experience.
Multiple studies have shown that doctors routinely opt to give female patients sedatives as opposed to painkillers, suggesting that their perception of their own pain is often presumed to be clouded by anxiety.
Women are more likely to be prescribed anti-depressants or tranquilizers for the treatment of chronic pain, while their male counterparts are more commonly prescribed opioids. They're also more likely to be diagnosed with histrionic personality disorder, a mental illness characterized by emotional dysregulation and attention-seeking behaviour, while seeking out a diagnosis. This occurs even in the presence of positive clinical tests.
Em, 20, from Vancouver, B.C., was put on several anti-anxiety medications after seeking treatment for their chronic pain at age 15. When their initial blood tests and imaging results came back negative, doctors suggested they may just be anxious, and "paying too much attention to their somatic experiences." It wasn't until they got a second opinion years later that the true source of the pain -- ankylosing spondylitis -- was discovered.
Em believes a prior diagnosis of borderline personality disorder prevented them from reaching a diagnosis sooner. "The delay in my diagnosis really impacted my self-perception," they said.
"I spent my teens going to weekly physiotherapy and being told I just needed to tighten my core and fix my posture. I feel like it's my fault that I can't resolve my pain. Although I now know that it's a systemic issue, I still find it hard not to blame myself."
In the very worst cases, patients misdiagnosed with conversion disorder die from complications that could have been prevented with adequate medical care. Many others spend years desperately searching for answers as their physical and mental health deteriorate. Some lose their jobs, and find themselves unable to apply for disability in the absence of a diagnosis. Social consequences are inevitable, especially when patients find themselves unable to label and therefore justify their suffering to those around them. Suicide is not uncommon. Those who finally receive a diagnosis often bitterly distrust the medical establishment going forwards, sometimes developing intense phobias of doctors and medical settings, or even displaying symptoms of post-traumatic stress disorder. A sense of shame often lingers, and just like other victims of gaslighting, the patient's ability to trust their own perception of their experiences takes time to repair. As does their relationship with their body, which has been a source of frustration and stigma for so long.
This is the case for Olive, 21, from Vancouver, B.C. Growing up, she was repeatedly sent to counselling by her family doctor in response to complaints about joint pain and vertigo. "I went to get a second opinion and he thought I was trying to self-diagnose. I was finally diagnosed with EDS after my physiotherapist demanded I be sent to a specialist. I'm seriously ill often now, and I can't help but feel like I wouldn't be this bad if I had started treatment earlier. I've injured myself a lot in recent years because of my doctor telling me I needed to be more active, and my pain was due to inactivity." She describes being a target for gossip by ER staff.
"What's worse though has been the emergency room nurses. I've overheard them saying 'she's here again.' They often assume I'm faking it, because I handle the pain so well as I deal with it daily. I have serious anxiety about doctors now and avoid going in for help unless I feel it's an emergency. But that's not even the worst of it -- I don't even believe myself half the time anymore."
It is clear that reform is needed in the way the medical establishment approaches the diagnosis and treatment of chronic pain and illness. Misogyny must be addressed within medical curricula, and standards of equitable treatment must be enforced in a way that is meaningful. A renewed emphasis on patient cooperation and empowerment is a good first step. More broadly, we must challenge the underlying beliefs regarding women and the weight of their narratives.
Kelsey Davis is a chronically ill student, disability activist and educator based in Guelph, Ontario.
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