FEAR OF THE UNKNOWN: Women´s bodies and diseases

05/30/2014 14:16

Horror, terror, diseases, black magic ‒ I assume these afflictions are all related to order and disorder, cosmos and chaos. Distress and shock make us lose our calm, the security and equilibrium we are striving for in our lives. They threaten the foundations of our existence. Horror lurks where things fall apart, where everything seems to slip out of control, it is approaching us from previously unknown realms.

No wonder that we fear the unknown and even avoid approaching it. Like a friend of mine who fears Muslims ‒ all Muslims. He is a nice man, though he votes for the Sweden Democrats and wants “intruding” Muslims to be thrown out of our country. His neighbor happens to have been born a Bosnian and teaches math at the local school. When I asked my friend why he does not knock on his neighbor´s door and invites him for a cup of coffee, he answered: “You´re crazy! Talking to someone like that? You never know how that may end up”. The neighbor would probably say the same: “Knocking at the door of a Sweden Democrat? You never know how that may end up”.

However, not all dangers are coming from the outside. Even our own bodies are unknown territories that may harbor threats to our wellbeing. Fibromyalgia is described as chronic pain in muscles and joints, even relatively light pressure may be experienced as excruciating agony. Persons suffering from fibromyalgia tend to have other symptoms as well, like insomnia, fatigue, and stiffness. Needless to say it is a painful affliction, worsened by fact that many dismiss it as a psychosomatic disorder, indicating that it arises from the stress and strain of everyday life. Since we all experience such problems it is quite common to consider people who suffer from psychosomatic disorders as weaklings unable to deal with afflictions that befall us all.

Approximately nine out of ten patients diagnosed with fibromyalgia are women, something that has made some people prone to label it as an “old hag´s disease”.  Swedish medical records often branded symptoms reminding of fibromyalgia as SVBK, meaning "scorch, pain and bitch burn" an abbreviation once used by medical doctors to denote pain without a well-defined source.  To write SVBK in a medical record was thus more or less the same thing as labelling acute pain as "imaginary”.

Maybe the term “fibromyalgia” is just another attempt by medical science to attach a label to a number of conditions by stringing them together under a general heading. Naming is often an attempt  to define a phenomenon that so far has been inexplicable, to give it an existence. The word is composed of Latin and Greek; fibro, fibrous tissues, myo, muscle and algos, pain. The term fibromyalgia was first applied in 1983 to describe a disease that seemingly lacks any physically determined abnormalities, meaning that physical causes cannot be defined through objective diagnostic tests.

Writing about fibromyalgia I am entering unfamiliar territory, as an excuse I might assert that my blog is not intended to be a scientific treatise, rather a reservoir for musings and idiosyncrasies. A statement reminding me of the Swedish author August Strindberg, who as an old man ‒ old? He was actually a few years younger than I am now ‒ unconditionally threw himself into the unknown, disregarding established theories and methods. Strindberg´s curiosity propelled him in every imaginable direction, inconsistencies and assumptions seldom bothered him. He wrote like a scientist, but with the imagination of an inquisitive child. Wild speculations charged him with an energy he poured into literature. He moved away from reality, breaking it into fragments that he pieced back together again, all according to patterns of his own invention.

Strindberg´s Blue Book is filled with strange correspondences and transformative discoveries. Does the corncrake really exist? Why is the walnut similar to the human brain? What did God intend when he made the profile of a small mountain called Kinnekulle look like an exact match to the base of a Greek column? The moon is probably a disc of quartz reflecting the continent of North America. When someone asked him if he really was serious when he reached the last conclusion Strindberg answered that it was “just a beautiful theory”, it was up to others to prove it wrong.  I assume that some diagnoses concerning women´s diseases probably are as “scientific” as Strindberg´s speculations ‒ wild guesses, inventive interpretations based on conclusions drawn from shaky research.

In Time & The Other: How Anthropology makes its object, published in 1983, the same year as the term fibromyalgia was minted, Johannes Fabian stated that scientists are circumscribed by the times they live in. Their specific environment and experiences shape their viewpoint and attitudes. When an anthropologist offers descriptions and interpretations of people´s behavior he bases them on his own, very specific perceptions. For example, if a man studies a woman´s behavior and character, his diagnosis is dependent on the fact that he is a man, born and raised within a certain timespan in a particular environment.

An example of how women´s ailments are filtered through men´s mind is the concept of “hysteria”, which was widely debated in the medical literature of the 19th and early 20th centuries. Hysteria was then believed to be a mental disorder that almost exclusively affected women, causing a wide array of symptoms, including faintness, nervousness, insomnia, fluid retention, heaviness in the abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and something that was somewhat indeterminately characterized as ”a tendency to cause trouble".

After the cataclysm of the First World War, when thousands of men returning from the hell of the trenches behaved in a manner similar to that of “hysteric” women, the diagnosis was gradually removed from the female sphere and became related to another origin than the hysteria (Greek for uterus). First the term shell shock was used to diagnose war trauma that lacked physical traces in the form of an injury. The explanation was that loud bangs of exploding grenades had affected soldiers´ nervous system. One reason for the ailment being identified as physical, not psychological, was probably that it was generally considered to be disgraceful if a male complaint became connected with mental disorder. Gradually, a few physicians came to believe that some cases of “female hysteria” might also be linked to physical trauma. However, such suspicions were generally abandoned when “shell shock” and “hysteria” drifted into the realm of psychological ailments. “New” disorders of the mind, like neurasthenia, stress, anxiety, alienation, chronic fatigue syndrome, Gulf War Syndrome, narcissism, bulimia, anorexia, fibromyalgia, multiple personality syndrome,  attention deficit hyperactivity disorder  etc., etc.,  were introduced as diseases of the mind, at certain intervals emerging and disappearing from public attention. The danger was that any published discovery of mental disturbances tended to produce new cases. It even has become fashionable to blame shortcomings and incorrect behavior on mental problems, like when a colleague of mine asked a pupil to stop talking on her mobile phone during the lesson and she answered: “I cannot avoid doing it. I have a diagnosis.”

Psychological disorders are treated with a wide range of psycho-pharmaceuticals, but also through psychoanalysis. Both drugs and psychoanalysis can prove to be helpful, but also dangerous. Drugs and intrusive physical treatment (lobotomy, injections, electrical shocks etc.) can damage people irreversibly and psychoanalysis can do the same.

It is desperate people, searching for a way out of their chaos and pain, who are seeking the help of experts. However, a psychiatrist may become empowered by the trust invested in him/her. In his History of Sexuality Michel Foucault stated that women run the risk of becoming passive, inert objects of a medical will to power and thus persuaded to believe in explanations and treatments bestowed upon them. Men may also experience this. When her marriage broke up after her husband had gone into therapy the novelist Fay Weldon claimed that therapists are nothing but “failed novelists, creating nice patterns out of real people´s lives for their own satisfaction and for money”.

Weldon´s bitter verdict is underscored by a recent Swedish legal scandal. A minor offender and drug addict admitted to 39 murders and was sentenced for eight of them.  In 2002, he interrupted his therapy, stopped cooperating with the police and instead chose to collaborate with an investigating journalist. He was eventually cleared of all accusations; no less than six different district courts had been deceived and sentenced an innocent man. While he underwent psychological treatment after being convicted for a murder attempt a close-knit group had been formed around Sture Bergwall. It consisted of a prosecutor, an interrogator, a psychologist, a lawyer and a group of memory researchers from Stockholm University. For years they toured various crime scenes with the drugged, imaginative Bergwall, all of them convinced that he was a serial killer. The group's conviction was sustained by an influential psychoanalyst, who provided therapy and advice to its members. Ultimately she was, without a scrap of physical evidence, able to rule over the imagined killer´s thinking and behavior, as well as that of the investigators, the police and the Swedish judicial system. This strange affair proves how easily convinced most of us are by “expert diagnoses”, even if they are based on wobbly science and an outlandish display of personal security, pride and prestige.

While gathering information about development projects in rural areas I found it advantageous to approach persons who were not directly involved with the projects. Influential individuals who generally were not contacted by external consultants like me; for example religious leaders, representatives of law enforcement and the army and not the least midwives. In the High Andes I often heard about physical ailments that hindered women from participating in public affairs. I was told about the shame and exclusion connected with venereal diseases and specific female afflictions. The list is very long and varies from place to place; vulvo-vaginal diseases like the horror of intestinal-genital tract fistulae, prolapse and cancer, complications related to delivery as well as pre- and postnatal conditions, everything connected with menstruation, contraception, abortions, breast cancer and the mass of cultural traditions that limit women´s rights and access to decision making and commodities. Other factors that affect women´s health are traditions that defend and recommend body altering abuses, of which genital mutilation is one horrible aspect, or minimize the harmful effects of rape, abuse, violence, incest, early marriages, etc.

Much of such abuse and incomprehension is rooted in men´s fears and dominance. The female body, in particular it´s inner appearance and functions, are unknown to most men and as I said in the beginning of this blog ‒we humans fear the unknown. The mysteries of women´s bodies have for thousands of years aroused dread in men – the growth of the fetus, the flow of menstrual blood, female genital parts. Strange ideas have developed around women´s anatomy. For example, until anatomical research advanced during the Renaissance, most Europeans believed that the uterus could move around freely within women´s bodies.

To protect themselves from the uncontrollable mysteries of womanhood men often declared that pregnant and menstruating women were “unclean” and the community had to be protected from them. I found that such associations still lingered on in the mountainous regions of Bolivia, Peru and Ecuador, causing pain and troubles for women, while they affected the  harmony and love between man and women, making women ashamed of their bodies, hindering them from seeking help when they needed it the most.

While working in a rural area in Mali I asked a midwife about polygamy. She told me: “Please, before you write anything, try to learn as much as you can about polygamy. Some is bad, some is good. You see, for me working as a midwife, polygamy is far better than single marriage. Here single married women are more abused by their husbands than those living in polygamy. Wives take care of one another, they share problems and work together, solve conflicts in unison and above all they look after one another during pregnancy, post-partum periods and in sickness. They know what it means to be a woman. If a single wife gives birth she is out working in the fields within a week, among the polygamists a new mother is able to rest for half a year, only doing light work. I find more venereal diseases, more abuse, desperation and violence among single wives than among polygamists. Please, don´t misinterpret me. I do not say polygamy is ideal, but among us it means fewer problems. However, everything is changing fast, some for good, some for bad.”

Anthropologists have found that women tend to be influential within “possession” cults, where rituals often center on role playing, fertility, healing and communal feasting. Everything related to maternity seems to play a central role in these cults, where men often are excluded from initiation rituals and ceremonies centering on birth and post-natal care. Women´s situation changed drastically when society, particularly within the European cultural sphere, underwent a thorough transformation as industrialism substituted age-old production systems based on agriculture and pastoralism. Social life became more family than group oriented. The social support of women gradually ceased from coming from specific groups and the local community to become more reliant on the close-knit family, as well as professional social and medical services, areas that until recently have been dominated by men.

And what about fibromyalgia? I recently heard from a female acquaintance who for a long time has been suffering from severe pain similar to the current diagnosis of fibromyalgia that she finally had met with an experienced medical doctor who explained that her suffering could be connected with birth and post-partum troubles in the past. His theory was that severe pain, in connection with delivery and post-partum stress had triggered her nervous system in such a way that it was easily activated even after the physical wounds had been healed. If the female body has experienced extreme pain in connection with experiences like menstrual pains and birth, or even worse incidents like genital mutilation, rape and other forms of gender related violence, the nervous system may be alarmed by minor problems as well. Physical pain may emerge even if its actual source cannot be discovered. The nervous system does not remain dormant after severe trauma, but tends to react in an exaggerated manner even by a stimulus far weaker than the one that originally upset the entire nervous system.

I cannot judged if this is right or wrong, nevertheless it made me to think about religious groups that center around exorcism in the sense that demons are collectively purged in symbolic acts that intend to remove the forces of disorder (read pain) that has taken over a woman´s body during traumas related to giving birth, or in the case of girls ‒ menstruation or genital mutilation. Moviegoers may remember that horror movies like Carrie and The Exorcist deal with tribulations befalling adolescent girls. Ecstatic communal rituals, often in connection with dancing and role playing, not the least the acting out of women as men, may also serve a purpose of purging pain, alienation and loneliness from marginalized women.

And now – in our modern society – where can a woman diagnosed with fibromyalgia turn? To science, which is on the constant look-out for non-existent physical sources? To men, who do not understand how a female body functions? To other women, who are as bewildered as herself,  seeking support and solace from public media that indicates that the source of the pain can be found in everything from eating habits, stress, aliens, the stars, social exclusion – whatever. As the philosopher José Ortega y Gasset once stated: “The problem with modern man is not that he does not believe in anything, it is rather that he believes in everything”.

The literary critic Elaine Showalter writes about hysteria in Hystories: Hysterical epidemics and modern media. New York: Columbia University Press, 1997.

By now there are probably many books about women´s diseases, child birth through the time and men´s involvement with these issues, though I became interested in the subject many years ago while reading Shorter, Edward (1984) A History of Women´s Bodies. Bungay, Suffolk: Penguin Books.

The excellent book about the case Sture  Bergwall will probably never be translated into English, though a translation of its title would probably be The Man Who Stopped lying: The story about Sture Bergwall and the woman who created Thomas Quick.

Josefsson, Dan (2013) Mannen som slutade ljuga. Berättelsen om Sture Bergwall och kvinnan som skapade Thomas Quick. Stockholm: Lind & Co.

Other books I mentioned are:

Fabian, Johannes (1983) Time and the Other: How Anthropology Makes Its Object. New York: Columbia University Press

Foucault, Michel (1979) The History of Sexuality Volume 1: An Introduction. London: Allen Lane. 

Lewis, Ion M. (1971) Ecstatic religion: An anthropological study of spirit possession and shamanism. Bungay, Suffolk: Penguin Books.


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