History and Hysteria
On this sunny, way too-hot summer day, I can picture you, reader. Perhaps you are curled up on a couch, or finishing up your work-day dreaming of a nice sit, walk, or bike ride in a sunny park thinking, "Thank God on a day like this, no one would be mean enough to write an essay incorporating everything from the history of hysteria, neurologists like Charcot, neuroscience developments, authors such as Alice James, the James family, syringomyelia, multiple sclerosis AND hypermobile Ehlers Danlos syndrome!
At least I can look forward to an easy blog read that will make me feel really good and activist by the end because I read something relating to disability before I head out on that sunny park trip, or better yet, protest for Black Lives Matter!"
Well, dear reader, you would be wrong. In fact, this essay will delve into all of those very subjects. For those of you who may be rightfully wondering why I'm not using my blog space for Black Lives Matter in this moment, I still have more learning and researching to do before I can write the blog that's in my heart on how much ableism is (and has been used from the beginning) to justify racism against Black folks, and how the more research I do into the interplay of racism, ableism, and capitalism, the more it seems like tackling racism and White supremacy absolutely require tackling ableism at the same time. This is going to take time to research and write sensitively. So anyway, if you don't have the mental energy for this right now, perhaps head out for the park, walk, or protest for Black Lives Matter!!! and then come back when you have the resources.
So here goes if you're ready to get down with some serious content!
Dr. Harold Klawans (1989), neurologist and author of Toscanini's Fumble, describes why he keeps a photo of a topless woman with needles stuck in her chest framed in his office. It is in the essay entitled, "The Eye of the Beholder" and for him essentially, it is about humility. This woman was diagnosed with hysteria precisely because she could feel touch, but no pain. At the time, it was a "well-known fact" that pain and touch traveled together in the nerves that lead from the spinal cord to the skin. Therefore it was "scientific" and "obvious that there was no organic damage, because if there was, she would have lost both the sense of touch and the sense of pain.
Dr. Harold Klawans (1989), neurologist and author of Toscanini's Fumble, describes why he keeps a photo of a topless woman with needles stuck in her chest framed in his office. It is in the essay entitled, "The Eye of the Beholder" and for him essentially, it is about humility. This woman was diagnosed with hysteria precisely because she could feel touch, but no pain. At the time, it was a "well-known fact" that pain and touch traveled together in the nerves that lead from the spinal cord to the skin. Therefore it was "scientific" and "obvious that there was no organic damage, because if there was, she would have lost both the sense of touch and the sense of pain.
But they were wrong. Touch and pain only travel together part of the way, and then when they exit the spinal cord, eventually they cross to opposite sides. There is, in fact, and organic and "legitimate" diagnosis that this woman misdiagnosed with hysteria probably had. Klawans (1989) specifies that it is the only diagnosis that produces this particular phenomenon of still feeling touch but not pain. He goes on to explain that she likely would have been diagnosed with having a spinal cyst called a syrinx, and ultimately with the condition known as syringomyelia.
Of this, he says, "Not only is it true that we can diagnose only those diseases that others have already described, we can see only those things that others have seen and understood (Klawans, 1989 pg. 88)." It is this humility that he wants to remind himself to make space for within himself as a Clinician, and
that is why he keeps that picture front and center in his office, to remind himself precisely of what he does not yet know and therefore, cannot yet see. He poignantly ends this essay by posing the question, "But what illnesses do we still miss because no one has yet described them? Only time will tell."
Of this, he says, "Not only is it true that we can diagnose only those diseases that others have already described, we can see only those things that others have seen and understood (Klawans, 1989 pg. 88)." It is this humility that he wants to remind himself to make space for within himself as a Clinician, and
According to Tully (2005), Hippocrates (5th century b.c.) was the first to discuss hysteria (hysteros). As many of you likely know, the general idea according to Hippocrates, was that women's wombs could wander, and this caused a whole host of dismissible emotional problems. Ironically enough, as we will discover later, it was in this time frame that Hippocrates also first began to delineate Ehlers Danlos Syndrome.
But back to "hysteria", famed French neurologist Jean-Martin Charcot would go on to hold lectures for his students where he would "cure" groups of hysterics through hypnosis, according to lectures I recall from my Clinical neuroscience professor, Dr. Denny (whose gift for apt analogies to visualize complex interactions between neurons, axons, and synapses not only demonstrate his gift for teaching, but also made this essay possible!)
But back to "hysteria", famed French neurologist Jean-Martin Charcot would go on to hold lectures for his students where he would "cure" groups of hysterics through hypnosis, according to lectures I recall from my Clinical neuroscience professor, Dr. Denny (whose gift for apt analogies to visualize complex interactions between neurons, axons, and synapses not only demonstrate his gift for teaching, but also made this essay possible!)
Lest you be tempted to believe that the misdiagnosis of the woman in Klawan's (1989) picture is particularly unusual in lack of knowledge resulting in misdiagnosis (side note: Dr. Klawans has moved mountains to try and find out her name and give her her due respect and identity, but has been unable to thus far). Let's look a little at the history of Multiple Sclerosis. According to the National Multiple Sclerosis Study, women are three times more likely to be diagnosed with Multiple Sclerosis (and you thought you'd get through this blog without any mentions of sexism).
Furthermore, because even though Charcot delineated Multiple Sclerosis as early as 1868, it was not commonly diagnosed as a condition until between 1920 and 1950 (Tully, 2005). Also according to Tully, it was commonly misdiagnosed as hysteria or neurosyphilis (remember, women were and are three times more likely to be diagnosed with MS, so that these misdiagnoses fall on psychological and sexuality-related themes is not insignificant in this case). The reason it took so long to be commonly recognized and diagnosed, is precisely the problem Klawans elucidated, there simply weren't enough physicians knowledgeable enough in its presentation to be able to make the correct diagnosis. Quite literally, they had no way to understand what they were seeing.
As time went on, hysteria became known as "conversion disorder" (Tully, 2005) and also acquired a supposedly key characteristic that came to be known as "La Belle Indifference"(Stone, Myth, Carson & Warlow, 2006). This supposed telling feature was revealed by the patient's seeming lack of concern for the symptoms they are or were experiencing. La Belle Indifference, is, in fact, still considered a telling feature that points to what we now call, "functional disorders despite a meta analysis by Stone et al., (2006) showing that statistically, "La Belle Indifference" occurred no more statistically often in conversion/functional disorders than they do in "organic" disease and that this should not be used as a differential characteristic.
As time went on, hysteria became known as "conversion disorder" (Tully, 2005) and also acquired a supposedly key characteristic that came to be known as "La Belle Indifference"(Stone, Myth, Carson & Warlow, 2006). This supposed telling feature was revealed by the patient's seeming lack of concern for the symptoms they are or were experiencing. La Belle Indifference, is, in fact, still considered a telling feature that points to what we now call, "functional disorders despite a meta analysis by Stone et al., (2006) showing that statistically, "La Belle Indifference" occurred no more statistically often in conversion/functional disorders than they do in "organic" disease and that this should not be used as a differential characteristic.
This is interesting to note, as well as the fact that Doctors who are super concerned with this issue might want to consider the experience many of us patients have had, of finding out that expressing the exact level of concern we have about the symptoms we experience is often met with skepticism, and we are often taken more seriously as patients if we act less concerned about our symptoms.
It is into this backdrop of hysteric diseases, an ever expanding knowledge base of physical-organic disease that still had a long ways to go that Alice James enters the pictures and steals the limelight in Natalie Dykstra's (2001) essay, "Trying to Idle: Work and Disability ability in the Diary of Alice James." According to Dykstra, Alice James passed in 1892, about nine to sixteen years before Dr. Ehlers and Dr. Danlos begin to delineate Ehlers Danlos as a separate condition. Dykstra's essay is a consideration of meaning-creation in the context of Disability, how men and women with similar symptoms and conditions are treated differently, and how cultural expectations of women most certainly played into Alice James' life in the sickroom. All of these are laudable in and of themselves.
the problem I have with it, is how easily Dykstra colludes with her culture and with our continued biases against women with unexplained or difficult to explain symptoms, in relegating her symptoms to the "obvious" bin of psychological or hysterical causes. As I read this essay placed early in The New Disability History: American Perspectives edited by Paul K. Longmire, and Lauri Umansky, I immediately felt an intuitive kinship with Alice James, suffering from debilitating and unexplained fatigue (among other symptoms) using her time recuperating to read, write, and consider deeply aspects of life pertaining to meaning in absence of or vastly reduced "work" and being dismissed so many times with the easy answers of doctors that it was simply "too much stress" and the modern day answer to the "rest cure" of "taking it easy" and "reducing stress in the face of overwhelming and as yet unexplained symptoms.
It is into this backdrop of hysteric diseases, an ever expanding knowledge base of physical-organic disease that still had a long ways to go that Alice James enters the pictures and steals the limelight in Natalie Dykstra's (2001) essay, "Trying to Idle: Work and Disability ability in the Diary of Alice James." According to Dykstra, Alice James passed in 1892, about nine to sixteen years before Dr. Ehlers and Dr. Danlos begin to delineate Ehlers Danlos as a separate condition. Dykstra's essay is a consideration of meaning-creation in the context of Disability, how men and women with similar symptoms and conditions are treated differently, and how cultural expectations of women most certainly played into Alice James' life in the sickroom. All of these are laudable in and of themselves.
the problem I have with it, is how easily Dykstra colludes with her culture and with our continued biases against women with unexplained or difficult to explain symptoms, in relegating her symptoms to the "obvious" bin of psychological or hysterical causes. As I read this essay placed early in The New Disability History: American Perspectives edited by Paul K. Longmire, and Lauri Umansky, I immediately felt an intuitive kinship with Alice James, suffering from debilitating and unexplained fatigue (among other symptoms) using her time recuperating to read, write, and consider deeply aspects of life pertaining to meaning in absence of or vastly reduced "work" and being dismissed so many times with the easy answers of doctors that it was simply "too much stress" and the modern day answer to the "rest cure" of "taking it easy" and "reducing stress in the face of overwhelming and as yet unexplained symptoms.
Though in places Dykstra (2001) alludes to (and maybe deliberately to stir thought in readers) signs that perhaps Alice James' symptoms were, in fact, more than neurotic. For instance, she describes how her brothers William and Henry (yes, she's that Alice James!) both in their childhoods were diagnosed with a variety of physical and neurotic (the language of the day) conditions. They are granted by Dykstra that reality of their physical conditions in a way that she does not grant to Alice. In one place she makes her judgment over the reality of Alice's condition abundantly clear by declaring it, "non-somatic."
Please let me be clear here, there is a bizarre separation we make in our culture between mental and physical illness, and it really is a form of gate keeping in my opinion. People with mental illness are nearly always seen as somehow "lesser" and "less valid" than people with physical illnesses. And this is a distinction that needs to go. All illnesses physical and mental are absolutely affected by emotions, stress, life events, and other aspects of environment as anyone who has ever experienced any kind of chronic condition can likely tell you, and likely describe in detail. Both physical and mental illnesses arise from complex interactions between the brain, body, and environment. This distinction that we make only serves to, again, in my opinion, devalue the harm and struggle that people with these illness experience, as well as their worth.
It also serves to discount and diminish women with unexplainable symptoms and as-yet-unknown medical conditions. And that is harm, when instead of investigating organic illness where treatment or palliatives could cure or lessen the course of the disease, women's time, money, and energy is wasted denying their lived experiences of their bodies, and the cure and palliatives that could restore as much life and life-choices as possible.
Reader, if you are still with me and not on that sunny beach (or seriously protest. If you can go protest for Black Lives Matter, please do! If you can't please find some donations, write some letters, or make some phone calls!) we are actually moving on to my final point. Because to deny Alice James her real lived experience and reality of physical symptoms as Dykstra (2001) does just because the potential disease was as yet unknown, is to continue to gaslight her, as she experienced throughout her life. Whether stemming from quote unquote mental illness or quote unquote physical illness, somatic symptoms are still real and deeply real and felt for the person experiencing them.
Reader, if you are still with me and not on that sunny beach (or seriously protest. If you can go protest for Black Lives Matter, please do! If you can't please find some donations, write some letters, or make some phone calls!) we are actually moving on to my final point. Because to deny Alice James her real lived experience and reality of physical symptoms as Dykstra (2001) does just because the potential disease was as yet unknown, is to continue to gaslight her, as she experienced throughout her life. Whether stemming from quote unquote mental illness or quote unquote physical illness, somatic symptoms are still real and deeply real and felt for the person experiencing them.
Furthermore, there is some real mapping of the symptoms Dykstra describes onto some of the associated conditions with Hypermobile Ehlers Danlos Syndrome. And to deny the possibility that her symptoms were real and based in a now-known disease is to deny her the dignity, even though she has long since passed, that she deserved in life. To know truly why she felt as she did, and struggled as she did, and was put in the position to try and make the meaning she could from it as she lived. I don't want to deny her that reality, as the neurologist who misdiagnosed the woman in the photo on Klawans' wall did. I don't want to gaslight her and tell her we know better, because we don't.
Dykstra (2001) uses Alice James' confounding list of symptoms, much as doctors often do, to dismiss her. "Obviously" according to Dykstra, the list which includes stomach pains, fainting spells, exhaustion, cardiac complications, and something interestingly called spinal neurosis, as well as partial paralysis could not stem from a single condition so they must be false. But she, like many doctors, fail to consider the possibility of a multi-systemic disease such as Ehlers Danlos Syndrome which absolutely produces a stunning array of symptoms which does create a confusing picture until the basis is understood.
Dykstra (2001) uses Alice James' confounding list of symptoms, much as doctors often do, to dismiss her. "Obviously" according to Dykstra, the list which includes stomach pains, fainting spells, exhaustion, cardiac complications, and something interestingly called spinal neurosis, as well as partial paralysis could not stem from a single condition so they must be false. But she, like many doctors, fail to consider the possibility of a multi-systemic disease such as Ehlers Danlos Syndrome which absolutely produces a stunning array of symptoms which does create a confusing picture until the basis is understood.
I started reading Dykstra's essay shortly after having been diagnosed with Ehlers Danlos syndrome (a genetic condition involving the inability to appropriately produce connective tissue) and when I read this list of symptoms I nearly fell out of bed due to the obvious-to-me crossover of her "no organic basis found" symptoms according to Dykstra, and symptoms common to the most common for of Ehlers Danlos Syndrome, Hypermobile Ehlers Danlos Syndrome (hEDs). According to the Ehlers Danlos Society page, hEDs often is associated closely with sleep disturbances, fatigue, POTS, functional GI disorders (interesting to note the use of "functional" here, alongside obviously organic disease) dysautonomia, anxiety, depression (and I can't remember the source for this, but ADHD often coincides as well).
Let me break this down a little. The fatigue experience, I'm told, likely stems from the fact that due to lack of appropriate connective tissue, the muscles have to work two to five times harder to do the job that the connective tissue is failing to. Alice James may well have experienced profound fatigue if she had hEDs. The Cardiac symptoms and fainting Dykstra (2001) described may well have been explained by POTS associated with hEDs. Stomach pains could have been due to various digestive compilations stemming from hEDs. Spinal neurosis, whatever that is, and the partial paralysis could likely have arisen from the many profound spinal complications that can also arise from hEDs and defective connective tissue.
Do I know for sure whether or not Alice James had hEDs? Obviously, without more family history, without more medical qualifications, I cannot diagnose (though I can note that it is highly suggestive that William and Henry experienced symptoms too). the James' family men may have literally had altered courses of their conditions due to the activity and demands expected of them, that were denied to Alice. One of the hidden ironies and difficulties of Ehlers Danlos Syndrome is that as painful as it can be to do, exercise and activity can help restore the muscle strength needed to manage loose joints. The cultural and gendered norms and expectations may literally have led to different courses of their conditions (admittedly, if they had them).
So no, I can't know for sure. But I can ask Doctors to make space for and carry with them that same sense of humility about diagnosis, the bounds and limits of what we know about the body. I can ask them to take more time before writing someone off as having "functional/conversion/non-organic" disease and to enter their craft of diagnosis with a sense of the underlying mystery and questions that still remain about the body, genetics, and all the ways the body can be different and disabled.
I can ask Natalie Dykstra (2001) to end the gaslighting of Alice James and her lived reality with her physical symptoms, whatever the cause of them might have been. I can ask her to examine more sensitively the culture, the sexism that played into our view of Alice James, and ask her specifically to grant Alice the same dignity she grants to William and Henry James. I can ask readers to join with me in adding Alice James to the unnamed woman Klawans tries to always remember, whose diagnosis was clear, but would not be known for years after her passing. To grant both women the dignity of belief in the realities they knew and tried to express, despite the disbelief that their cultures met them with.
And lastly, I can ask readers to take with them that sense of humility that Klawans speaks of when they encounter women (or women-identifying) people who may have medically unexplained symptoms, to recognize that they may very well be real, even if doctors cannot yet find the source. Simply put, I can ask readers to grant women the lived reality of their bodies that has been dismissed and disbelieved for so long. I hope we can look into their faces and see reflected back in them the shadows of Alice James and the woman Klawans described who can only now be remembered by her complex reality which she was denied.
Let me break this down a little. The fatigue experience, I'm told, likely stems from the fact that due to lack of appropriate connective tissue, the muscles have to work two to five times harder to do the job that the connective tissue is failing to. Alice James may well have experienced profound fatigue if she had hEDs. The Cardiac symptoms and fainting Dykstra (2001) described may well have been explained by POTS associated with hEDs. Stomach pains could have been due to various digestive compilations stemming from hEDs. Spinal neurosis, whatever that is, and the partial paralysis could likely have arisen from the many profound spinal complications that can also arise from hEDs and defective connective tissue.
Do I know for sure whether or not Alice James had hEDs? Obviously, without more family history, without more medical qualifications, I cannot diagnose (though I can note that it is highly suggestive that William and Henry experienced symptoms too). the James' family men may have literally had altered courses of their conditions due to the activity and demands expected of them, that were denied to Alice. One of the hidden ironies and difficulties of Ehlers Danlos Syndrome is that as painful as it can be to do, exercise and activity can help restore the muscle strength needed to manage loose joints. The cultural and gendered norms and expectations may literally have led to different courses of their conditions (admittedly, if they had them).
So no, I can't know for sure. But I can ask Doctors to make space for and carry with them that same sense of humility about diagnosis, the bounds and limits of what we know about the body. I can ask them to take more time before writing someone off as having "functional/conversion/non-organic" disease and to enter their craft of diagnosis with a sense of the underlying mystery and questions that still remain about the body, genetics, and all the ways the body can be different and disabled.
I can ask Natalie Dykstra (2001) to end the gaslighting of Alice James and her lived reality with her physical symptoms, whatever the cause of them might have been. I can ask her to examine more sensitively the culture, the sexism that played into our view of Alice James, and ask her specifically to grant Alice the same dignity she grants to William and Henry James. I can ask readers to join with me in adding Alice James to the unnamed woman Klawans tries to always remember, whose diagnosis was clear, but would not be known for years after her passing. To grant both women the dignity of belief in the realities they knew and tried to express, despite the disbelief that their cultures met them with.
And lastly, I can ask readers to take with them that sense of humility that Klawans speaks of when they encounter women (or women-identifying) people who may have medically unexplained symptoms, to recognize that they may very well be real, even if doctors cannot yet find the source. Simply put, I can ask readers to grant women the lived reality of their bodies that has been dismissed and disbelieved for so long. I hope we can look into their faces and see reflected back in them the shadows of Alice James and the woman Klawans described who can only now be remembered by her complex reality which she was denied.
References
Dykstra, N. A. (2001). Trying to idle: Work and
disability in the diary of Alice James. The new disability history: American perspectives, 107-130.
Klawans, H. L. (1989). Toscanini's fumble: and other
tales of clinical neurology. Bantam Dell Pub Group.
Parapia, L. A., & Jackson, C. (2008). Ehlers‐Danlos syndrome–a historical
review. British journal of haematology, 141(1), 32-35.
Stone, J., Smyth, R.,
Carson, A., & Warlow, C. (2006). La belle indifference in conversion
symptoms and hysteria: systematic review. The British Journal of
Psychiatry, 188(3), 204-209.
Talley, C. L. (2005). The emergence of multiple sclerosis, 1870-1950: a puzzle
of historical epidemiology. Perspectives in biology and medicine, 48(3),
383-395.
https://www.nationalmssociety.org/What-is-MS/Who-Gets-MS#:~:text=Gender%3A%20The%20recent%20prevalence%20study,in%20determining%20susceptibility%20to%20MS.
https://www.ehlers-danlos.com/eds-types/#Hypermobile-EDS
Photo by Nicole Wolf on Unsplash
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