Functional Neurological Disorder
Contemporary Hysteria and the Continuation of Disbelief
I’ve written before that Long Covid is a heterogeneous concept. Many people present with symptoms that resemble ME/CFS, with the debilitating fatigue, memory loss, struggles to focus and do things they did before they were sick, dizziness, muscle pain, and many other diverse symptoms that affect some people and not others. However, some people don’t have any of this. There are some people who had really severe acute COVID-19 and still carry with them pain in the chest and the lungs. Many women still cannot wear a bra because the pain in their chest lingers so deeply that pushing on their chest is uncomfortable. Others have a deepening of symptoms that are linked to struggles they had before the virus that were then provoked by further inflammation and dysregulation of the nervous system.
It’s important to point out that most people who report Long Covid are women. Some estimates suggest that perhaps twice as many women are diagnosed with Long Covid than men. These gendered trends should not be surprising. Those who present with ME/CFS, chronic Lyme, MS, and autoimmune diseases are overwhelming women-presenting people. Another thing that should be not surprising is that the higher number of cases among women is one reason there is such a broad dismissal of these contested conditions as real.
Art is the most provocative way to illustrate how real conditions like ME/CFS and Long Covid are and what lived experiences of common symptoms of these conditions look like. For instance, in Jennifer Brea’s breathtaking film, Unrest, she illustrates the agony of her debilitating fatigue, showing first-hand what it looks like to quite literally not be able to lift her body from the bed or walk up a flight of stairs. She was working on her PhD at Harvard when this illness took over her physical body. Furious when clinicians continued to tell her it was all in her head, she started to painstakingly document her illness. When her symptoms improved, she started interviewing others in video calls and eventually in person interviews for a powerful documentary (that is freely available to watch on Youtube).
When I was re-watching Unrest this week, there were several important things that aligned with my interviews about Long Covid. The most powerful portrayals are of her physical manifestation of fatigue and how the term fatigue doesn’t do the actual experience justice. I have been struck again and again by the comment that taking a shower can be so exhausting that it can take two days to recover one’s energy. What it means to completely immobilized by exhaustion, cognitive dysfunction, and prickling of the nerves is also something people who haven’t experienced the condition cannot understand.
Yet, there is something that many of my readers will understand. I know this because I have been dismissed in clinical spaces or ignored, like so many other women have, leading to personal physical pain and disbelieving that my own symptoms were real. What’s come up several times in my interviews, and Brea highlights in her documentary, is the common diagnosis of functional neurological disorder for women who present with ME/CFS and many other conditions that cause fatigue or nerve and muscle dysfunction, including Long Covid.
Functional neurological disorder is a medical diagnosis used when there is a perceived misfunctioning of the nervous system, and how the brain and body sends or receives signals. This is perceived, in this sense, to be completely psychological in nature as opposed to an organic pathology or structural disease process like multiple sclerosis or stroke. It’s striking because people with multiple sclerosis were told for years (before a biological origin of the condition was identified as used for diagnosis) that they had hysteria. Essentially the diagnosis of functional neurological disorder, or somatization disorder, which appeared in the third edition of the Diagnostic and Statistical Manuel, the definitive reference for psychiatric diagnoses, is the more recent term for hysteria in women.
Hysteria was the first condition linked explicitly to women. The Greeks linked ideas of women’s health and sexuality with madness: emotional volatility, hallucination, dissociative states, tics, convulsions. When Hippocrates coined the word hysteria, meaning uterus, he theorized that women’s health and illness were irrevocably linked to reproduction. In this way, the womb was perceived to be the cornerstone of women’s power as well as the source of women’s undoing physically and emotionally. The theory was based on the presumption that unlike epilepsy (where the problems were neurological), hysteria was linked to a wandering uterus that couldn’t adjust to societal expectation.
Centuries later the term shifted and transformed. Sigmund Freud famously believed that in most cases women’s pain was a reflection of suppressed trauma expressed symbolically through their bodies (and illuminated through hysteric passions). Essentially talk therapy was developed in order to cure women of their trauma or “episodes of fright” that became imprinted in their minds and inscribed into their bodies through tics, chronic pain in the gut, depression, insomnia, and hallucination. I am the first one to tote the benefits of therapy; it’s been immensely helpful as I’ve sorted through my own trauma and conducted extensive research with people who have shared stories of extraordinary trauma. However, if you have been reading my posts for awhile, you’ll know that many of these are common symptoms of Long Covid and other post-viral syndromes. As Jennifer Lunden described in American Breakdown, “his pseudoscience still lives, predisposing an entire medical system to distrust women’s reports of their own bodily experiences.”
I will discuss hysteria at great length in my book but I wanted to highlight a few things here because it’s important to call a spade a spade. I have spoken with several women who were diagnosed, or had a suggestion of diagnosis for functional neurological disorder. This week I spoke to two. It was a reminder that we have to break apart this myth that women’s suffering isn’t real, and particular women of color and those whose education, nationality, sexuality, income, documented status, or ethnicity create massive divides in the power held within the clinical space between the patient and provider.
I spoke to Michelle (pseudonym) who had a sleep disorder for decades. She is a physician and both her medical training and having young children intensified her difficulty sleeping. She also developed myoclonic jerks in her left arm and leg (known as ‘tics’) as well as some neck turning. She believes that these tics, such as her restless leg syndrome and periodic limb movements during sleep, may have been triggered by carbon monoxide poisoning that occurred two decades ago, long before she became a mother. The tics in her legs ebbed and flowed throughout her life, focusing more disruption when her sleep got worse.
Michelle developed new involuntary movements after her acute COVID-19 infection. New, sudden and brief involuntary twitching and jerking of her left arm developed, as well as some tic-like movement and tic-like vocalization intensified. Everything was worse when she was sleepy and the involuntary vocalizations (like stridor, grunts, laughter, screams) only happened when she was sleepy or actually dozing off.
Michelle explained to me how she had sought care from a new doctor who wanted to document her tics in their lab—where she observed videos of the tics when she was sleeping. The physician was very rushed with her and did not allow Michelle to share much of her history. “I think she had already kind of made a decision before she saw me what she thought it was,” she told me. Although some of Michelle’s movements are very tic-like, the movement disorder specialist did not believe they were true tics because by definition, tic disorders begin in childhood. “And then she's trying to tell me, she thought I had a functional neurological disorder. And I'm like, No, I don't think that's what it is at all. I don't believe that's makes any sense.” Michelle explained to me that typically new onset of tics in adulthood is assumed to be functional neurological disorder instead of true tics.
The doctor went on to tell her that they don’t treat functional neurological disorder tics with medication. Rather, they have a comprehensive behavioral intervention for tics. Since Michelle is an expert on tics—both treating children with them and doing research on neurological dysfunction in children, she felt rather confidently that the diagnosis lie elsewhere. She explained, “I think they were triggered by some kind of brain inflammation; I don't think it's some psychological thing. Still, I wanted to get a brain, MRI. I wanted to get the testing that I had originally wanted. And she ordered the MRI.” (Although, she refused to order other tests that could help diagnose autoimmune encephalopathy—a condition that could also cause her tics).
Michelle looked at the same brain scans as her physician. Michelle noticed vascular abnormalities in the brain that were consistent with chronic ischemia. Although, she was disappointed the MRI did not provide a view of the brain stem or hypothalamus, which are known to sometimes be affected by COVID-19 and (if damaged) may contribute to her involuntary laughter and movements. Since she was experiencing Long Covid, she was observant of these abnormalities and wondered how not getting enough blood and oxygen to the brain might be affecting her tics.
However, her physician disagreed; she minimized the findings that the radiologist reported when examining the MRI, and said it did not explain the involuntary movement symptoms. Michelle said that knew there were vascular abnormalities but she did not speculate on the cause and residue from a previous bleed. However, Michelle was dejected when the doctor was either unaware or disinterested in considering that these are among the type of findings seen post-COVID.
After this experience, Michelle found a new primary care physician who she perceived to be a better listener and more respectful of her. It’s tricky being a patient and a physician, especially when your doctor dismisses your expertise. I think this is similarly tricky for patients who are living with complex chronic illnesses because, in some cases, patients known heaps and bounds more than clinicians do. This is not only because patients are constantly reading the peer-reviewed literature, following discussions on Facebook and Reddit, and reading within and between the grey literature across the spectrum. It’s also because everyone comes to the table with different biological and social histories, thereby making each case unique. This is also why physicians struggle so much to diagnose people with complex and contested conditions.
She also started seeing a new sleep neurologist who diagnosed her with narcolepsy and suggested that some of her odd movements are a form of dream enactment, something that is fairly common in narcolepsy and in Long Covid patients that Michelle has spoken to who have similar tics. Still, when her new primary care physician try to order more tests to explore the potential impact of autoimmune encephalopathy, the order was refused. Eventually she was able to find a sleep neurologist to order the tests; the whole experience was frustrating because “I feel like there are just so many barriers to getting appropriate medical evaluation and treatment, and having Functional Neurological Disorder listed in the chart makes everything more difficult.” Thankfully her new primary care physician believes her and has put together a treatment that is making her tics feel more manageable and her sleep better.
Before I wrap this up, I need to emphasize how many people report autoimmune diseases like Sjogren’s syndrome or unspecified connective tissue disorders. There is data that autoimmune disorder may develop with Long Covid or potentially were there all along without a diagnosis (here and here and here). Michelle has this longstanding diagnosis, and the believes that clinicians who are not reading her chart closely or do not know her full history believe her symptoms are psychosomatic. She had a recent rheumatologist who didn’t even report her new physical symptoms and only wrote “many physical complaints.” This is another way to suggest hysteria. Not everyone is armed with the knowledge and training that Michelle carries with her and even still her fight for legitimacy is long, expensive, and tiring.
In conclusion, I wanted to follow up with Michelle’s concern that some physicians reading this might become defensive of the doctors in their own specialty for cultural issues and wanting to supporting others in their field. I do not mean to, in highlighting this story, contribute to what Michelle is concerned with: perceiving the negative comments about some doctors but positive comments about some others as a defense mechanism called “splitting”. In part, she was concerned that clinicians might perceive her to have some sort of personality disorder in which she can only see good or bad in a particular person at one time, and cannot cognitively accept that there are good things and bad things in any person.
This is not the case at all. This critique of clinical care is not about the doctors but rather about the system. Few clinicians are trained to look for, diagnose, or care for people with complex chronic conditions, and particularly those conditions that are attenuated by the relatively new SARS-CoV-2. Michelle is concerned that some clinicians think too much “in the box”, working in a formulaic manner to assess for common disorders they are accustomed to evaluating, diagnosing, and treating and then seem offended if a patient (even a physician patient, like her) suggests they may be missing something. In part, physicians become frustrated because many people are working from the perspective of “Dr. Google”—which is generally not the case with the people living with complex chronic conditions who I have met. In fact, their depth of knowledge and research is impressive and uniquely related to their individual case. It also may be, in the case of Michelle’s primary care provider, who was a nurse practitioner, that she felt patients might not respect her expertise because she’s not an MD (despite her substantial subspecialty experience in treating rheumatic diseases). Even more, it might be that one or more of the neurologists have been sued after giving a functional neurological diagnosis because the patient disagreed, and therefore they have multiple documented opinions to help protect themselves. This is indeed a problem with the extraordinary litigation associated with medicine that makes most clinicians shudder.
Regardless, it’s tricky to care for people with uncommon and complex chronic conditions. Amplifying what these experiences look like and providing opportunities for clinicians to engage with, diagnose, and care for such conditions is important. The need for diagnosing is essential for people who need disability because they can no longer work. It can be so difficult to keep a job, let alone keep your house, family, and friends, when your physical and emotional selves have been turned upside down.
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