“Could I create myself anew,
I would not fail in pleasing you.
If I could reach from pole to pole,
Or grasp the ocean with a span,
I would be measured by the soul,
The mind’s the standard of the man.”
(Excerpt from the poem “False Greatness” by Isaac Watts which Joseph Merrick, the “Elephant Man”, used to end his letters).
Those of us with chronic illnesses are always painfully familiar with the stigma that is attached to these illnesses. It is often due to the fact that people are ignorant as to the true definition of an illness or unable to empathize with those suffering from it. To counteract this, it is of course vital to raise awareness. It occurred to me that illness-related stigma is in no way a new phenomenon and has in fact been going on for millennia.
This column aims to give you a snapshot of the stigma people have experienced throughout history due to their illnesses and highlights the need for understanding and education in order to abolish discrimination and prejudices and enable those who are ill to live a happier life with greater acceptance from those around them. I dedicate this column not only to you who have suffered stigma due to your respective illnesses, but also to the various personages throughout history who have been ostracized, hated, feared and sometimes even exterminated because of their maladies. I would also like to dedicate this column to a cheerful little girl named Mandy who once taught me a lot (more on this at the end).
Stigma can be the negative views of others towards the subject of the stigma, negative actions such as discrimination against the subject of the stigma and how the subject of the stigma sees themselves. When you perceive negative feelings from others with regard to your illness, it is not unlikely that you will start to see yourself in a negative light despite the fact that you are often unable to reverse your illness, didn’t cause it in the first place and don’t deserve to be subjected to this negativity. As a result, you may become ashamed, withdrawn and afraid to be open about what you are going through, which is understandable, but also very sad because it is precisely such openness that is needed to educate people. One article talks about stigma devaluing an individual’s social identity and sociologist Erving Goffmann defines stigma as “an attribute that is deeply discrediting” where a person is diminished “from a whole and usual person to a tainted, discounted one”.
Illness-related stigma is often bred by fear such as fear of contagiousness (one thyrella was even asked if her Graves’ disease was contagious), disdain because the ill person is sometimes considered weak and out of control (e.g. alcoholism, mental disorders, obesity), immoral and/or irresponsible (e.g. STDs), whilst others consider ill people to be a burden to society because they are sometimes unable to work and thus dependent on welfare. People with illnesses are often thought of as “hypochondriacs who are whining over nothing”, but if you can’t feel someone’s pain how on earth can you classify it?
These days, many illnesses are considered to be “invisible illnesses” – with no outward signs of the person’s suffering (perhaps if they looked close enough, people would see these!), many people are often skeptical as to whether certain illnesses even exist or whether or not the person “moaning about their symptoms” is being a hypochondriac. Such illnesses include Chronic Fatigue Syndrome (CFS), which is sometimes lovingly dubbed “yuppy flu”. Because of this many sufferers prefer the name Myalgic Encephalitis as Chronic Fatigue Syndrome doesn’t describe the half of it – it’s not just fatigue, but also aches and pains, sometimes fibromyalgia (another “invisible illness”) and other symptoms that are actually quite similar to and can also include hypothyroidism (which may indeed be the root of CFS), which is of course another “invisible illness”.
Isaac Watts’ poem quoted in the introduction illustrates human beings’ desperate need to please others, the sometimes futile impossibility of it and the desire to be judged by our minds rather than our outward appearances. This was a most fitting poem for the “Elephant Man” Joseph Merrick, who is commonly but inaccurately referred to as John Merrick due to an erroneous recording of his name. Merrick lived in Victorian England and is said to have suffered from Proteus Syndrome, which caused his body to become grossly deformed. Society shunned him due to his outer appearance and his only chance of employment was to exhibit himself at freak shows. At one such show, the manager stole his savings, which demonstrates the exploitation to which many freak show performers were often subjected at that time.
Merrick’s mother Mary was knocked over and frightened by a fairground elephant during her pregnancy and so Merrick believed that the concept of maternal impression, where the emotional experiences of pregnant women could have a lasting physical effect on their unborn children, was the cause of his affliction.
Due to his repugnant appearance, Merrick was at times forced to wear a cap and hood as a disguise and to isolate himself from the rest of society. A friend once described him as interesting and intelligent despite the fact that many were undoubtedly unable to see beyond his deformities. As a result, his benefactor, surgeon Dr. Frederick Treves, believed that Merrick’s hope was to live at an institution for the blind where he might meet a woman unable to see his deformities.
Treves described the cause of Merrick’s death as follows: “He often said to me that he wished he could lie down to sleep ‘like other people’ [...] he must, with some determination, have made the experiment [...] Thus it came about that his death was due to the desire that had dominated his life – the pathetic but hopeless desire to be ‘like other people’”. Due to his physical deformities, Merrick had to sleep sitting up for fear of dislocating his neck due to the huge weight of his head.
The aforementioned freak shows were popular in the United States from around 1840 to the 1970s. Many of these so-called freaks had genetic mutations or diseases to thank for their condition, for instance dwarves or bearded ladies whose beards were most probably a result of their androgen (male hormone) excess or a rare genetic disorder known as hypertrichosis.
Up until the late 18th century, people had believed freaks to be evil omens and/or the work of Satan or witches, but it was then that the science of teratology posed the theory that freaks were part of the “Creator’s great order of creatures”. In the late 19th century, people believed freaks to be biological throwbacks to earlier races of humans and apes. From the 1950s, such sideshows waned in popularity and the public demanded that freaks be given dignity and not exhibited. Ironically, this was not necessarily a good thing for the freaks who had previously made their money from their unusual appearance despite the fact that some of them (like the “Elephant Man”) were undoubtedly exploited. What this change in attitude meant was that many freaks went into institutions or became dependent on the welfare system.
Guardian writer Chris Shaw made the following comment on modern televised freak shows: “One man’s freak show is another man’s portrayal of heroic triumph over medical adversity”, which very aptly describes people’s lack of understanding and empathy of those unfortunate individuals who are classed as “sick”, a word that in itself appears to carry a lot of stigma as it is also used to describe someone who is “mentally or emotionally unsound or disordered: morbid, unwholesome or someone who deals with unpleasant or macabre subjects such as ‘sick’ jokes”, as per the definition in Merriam-Webster’s Unabridged Dictionary.
Joseph Merrick’s illness was not the only illness to be associated with elephants. In fact, in Ancient Greece leprosy was known as elephantiasis. Anyone who has read or seen Ben-Hur is undoubtedly familiar with the stigma that was attached to leprosy in Biblical times as Ben-Hur’s infected mother and sister were expelled from the city of Judea and forced to live in a leper colony. Similar descriptions are featured in the Bible. Leprosy was once thought to be highly contagious and sexually transmitted, but in fact many early cases of leprosy are thought to have been syphilis, which was first described in 1530. These days, we know that leprosy is neither sexually transmitted nor highly contagious after treatment as approximately 95 percent of people are naturally immune to it and sufferers are no longer infectious after as little as two weeks of treatment. Before treatment was developed, however, leprosy was without a doubt contagious.
In the Middle Ages, the Church considered lepers unclean and forced them to carry bells to warn others of their presence. In Medieval Japan, lepers were segregated from healthy people and flocked around temples and shrines, begging mercy to passers-by, which reflects a rather medieval idea that sickness was often divine retribution as a punishment for the sins of Man. The Japanese Leprosy Prevention Law was passed in 1909 and as a result of this leprosy patients were in later years forcibly taken to sanatoria and their houses were disinfected in the presence of neighbors, which caused their families to be affected by the stigma attached to them. Some sufferers attempted suicide. The law was abolished in 1996. In 1951, the accused in a murder and explosion case was a leprosy sufferer who was discriminated against due to his condition and subsequently executed in 1961.
1950s Communist China created “Recovered Villages” in rural mountaintops for recovered leprosy patients. Leprosy is now curable due to the advent of the multi-drug treatment, but the villagers prefer to remain isolated due to the stigma they are subjected to by the outside world.
Asia certainly wasn’t the only continent to harbor prejudice and discrimination against sufferers of this illness. In the USA, leprosy sufferers were not entitled to vote until 1946!
Syphilis, which I mentioned above, was considered during the Counterreformation to be divine retribution. Young women who lost their noses to syphilis could be disowned by their fiancés as this was often thought to be a venereal or moral disease.
Another disfiguring disease, acne, was believed to have similar causes – in the 3rd century A.D. people thought it was caused by lying! Scars, birthmarks and other blemishes on the skin were also once dubbed the “devil’s mark” and considered by demonologists (rather than dermatologists) and witch hunters to be the mark or seal of possession. The “stigmata diaboli” was sometimes confused with the witch-mark, a protuberance such as a wart or mole thought to be a supplementary nipple used by witches to suckle familiars and demons. Such marks were deemed to be insensitive to pain and one test of a witch was to prick the marks with pins to see whether they drew blood. If no blood was drawn, the person was condemned as a witch.
People were not just discriminated against due to illness destroying their looks. In Ancient Sparta, the life of every person was deemed to be the property of the state. The city elders inspected newborns and ordered the weak and sickly ones to be carried to a nearby chasm and abandoned to die. Sparta hoped to in this way ensure the survival of the fittest.
Millennia later, another regime decided to follow the example of the Spartans. The Nazis were obsessed with their philosophy of creating a Herrenvolk or a Master Race, so much so that in October 1939 Adolph Hitler introduced “Aktion T4”, which ordered widespread euthanasia or “mercy killing” of the sick and disabled. “Life unworthy of life” was eliminated at birth and children up to the age of three manifesting signs of mental retardation, physical deformity and other symptoms defined in a Reich Health Ministry questionnaire were obliged to be registered. Three medical experts then acted like the ancient Egyptian Gods once did and decided whether these children should live or die – based solely on the questionnaire and without any medical examination whatsoever. A red plus mark meant the child was to be exterminated and a blue minus meant the child would be spared. Three red pluses were needed for the child’s extermination by injection or gradual starvation. It was hoped that the decision would be unanimous …
The Nazi euthanasia program grew to include older disabled children and adults. Conditions that had to be reported included schizophrenia, epilepsy, senile disorders, therapy resistant paralysis and syphilitic diseases (those poor syphilis patients never really catch a break, do they?), retardation, encephalitis, Huntington’s chorea and other neurological conditions, those who had spent at least five continuous years in institutions, those who were criminally insane and, of course, those who didn’t have German citizenship or German blood. Things didn’t look very good for Jews, Negroes, Gypsies and homosexuals either.
Six killing centers were established where patients were drugged and then led naked into the gas chambers. Families were lied to and the cause of death was announced as medical such as heart failure or pneumonia. One killing center in Hadamar had local children standing outside, taunting arrivals with “here comes some more to be gassed.”
In 1941, Catholic Bishop Clemens von Galen spoke out against the Nazi euthanasia campaign, dubbing it “plain murder”. Hitler suspended Aktion T4 shortly afterwards and retaliated against the Bishop by beheading three of the parish priests who had disseminated his sermon. The Bishop was left unharmed to avoid turning him into a martyr. The Nazi euthanasia program continued, but the gassing stopped and the Nazis reverted back to drugs and starvation. Doctors were encouraged to give their patients the “death sentence” when deciding their destiny. The Nazis used their experience gained during the euthanasia program to set up concentration camps throughout Europe to exterminate what they thought of as the “Jewish menace”.
Throughout history, people have misunderstood and mistreated diseases and those afflicted by them. Some diseases were associated with an unknown evil. Before the Industrial Resolution, people thought tuberculosis, or consumption as it was commonly known, was a result of vampirism. When one family member died, the others slowly followed. People believed that this was the original victim sucking the life blood out of the rest of their family. The physical traits of TB sufferers weren’t very helpful for dispelling this myth – red, swollen eyes, resulting in sensitivity to light, pale skin, very low body heat, a weak heart and the expulsion of blood from the lungs, leading these ignorant people to suppose that the sufferer was forced to replenish their blood by means of indulging in a vampiric act.
Another theory postulated that the afflicted was every night forced to attend fairy parties, causing the victim to deteriorate due to lack of sleep. At this time, there was held to be a close connection between fairies and the dead. After all, they have not always been deemed to be the pretty, magical and harmless gossamer-winged creatures we see them as today. Others (less commonly) believed TB victims to be “hagridden” – transformed into horses by witches (hags) to travel to their nightly meetings, also resulting in a lack of sleep.
In the 1880s, people realized that tuberculosis was contagious and it was made a notifiable disease in Great Britain, which means that by law it had to be reported to the government authorities so that they could monitor it and hopefully prevent it or at least be forewarned of an outbreak. Campaigns were launched to stop people from spitting in public and the infected poor were pressured to enter prison-like sanatoria where 50 percent of those who entered were dead within five years despite the extolled benefits of fresh air and labor. The middle and upper classes enjoyed excellent care and constant medical attention in their sanatoria. Ultimately, survival sometimes means having the money to pay for the right care, but surely equally good care should be available to all. Even today, we are still faced with this age-old problem.
Albinism is a congenital disorder that is also associated with vampirism due to the fact that some cultures in Neolithic Eastern Europe depicted death as a pale woman with light hair and because of the deathly pallor associated with the undead and vampires in European folklore. Characterized by full or partial absence of pigmentation in skin, hair and eyes due to the absence or defect of an enzyme involved in melanin production, its sufferers are faced with many social and cultural challenges, which tend to be much more severe in places where pale skin and hair stand out more from the rest of the population.
In East African countries such as Tanzania and Burundi, elderly women were in the past killed due to their red eyes, as people thought them to be witches. Currently, albino body parts are considered to bring prosperity. Fishermen on Lake Victoria incorporate albino hair into their nets in hopes of catching more fish or finding gold in the belly of the fish they catch. Albino people have been persecuted, killed and dismembered and albino graves have even been dug up and the body parts sold to witchdoctors to make potions. In Zimbabwe, people believe that sex with an albino woman will cure a man of AIDS, a belief that has sadly led to rapes and subsequent HIV infection of the female victims.
There exists the stereotype of the “evil albino”, which may have its roots in the aforementioned myths. In the Caribbean, albinos were often regarded as cursed, although recently albino musicians King Yellowman and Al Beeno have helped to dispel this prejudice. In addition, an increasing number of positive roles have recently been given to albino or mock-albino actors.
To conclude, I would like to refer back to my friend Mandy whom I met when I was in primary (elementary) school. A group of kids from our school were selected to visit a group of kids from a nearby special needs school and I became fast friends with Mandy. I remember our first meeting, when I saw her in her wheelchair and was confused as to what this was and thought it must be a pushchair (stroller) because that was the closest object I could acquaint it with. That said, she had long outgrown pushchairs, but I think this illustrates the innocence and untaintedness of the childlike mind and how we are yet to learn about children different from us. Mandy and I were quite close, I remember her cheerful disposition and I remember how happy I was when she picked me in games such as Poor Jenny. Apparently, that is the name of the singing game we often played where a child sits in the middle and sings “Poor Jenny is a weeping …” followed by a variety of verses. One of the lines is “She’s weeping for a playmate” and that is when Mandy, who was sitting in the middle of the circle, turned and picked me. It made me happy as Mandy was my friend. One teacher said we had an affinity to each other. A few years later, she died. I guess she never really had a chance at life, but I like to think she was happy because she always seemed so cheerful.
Back when I was growing up, the world wasn’t as politically correct. Kids would call other kids “spaz”, which was short for spastic and both terms are very non-PC these days. The word “handicapped” was still in common use too. This refers back to a time when disabled people would beg for money with their “cap in hand”. Although this has fallen into disuse these days, other words such as the “R” word (retard) are still sometimes used by ignorant people to refer to people with illnesses such as Down Syndrome or autism. It is true that such illnesses affect people’s mental capacity, but it doesn’t necessarily make the sufferer less intelligent. Our society has a predefined idea of what constitutes intelligence, but from what I have read and seen, many such sufferers are intelligent, but they simply have their own way of looking at things, which is something that many outsiders fail to understand.
People also joke about endocrine disorders such as PMS. Men often claim that it doesn’t exist and that the woman is just “putting it on”, but it undoubtedly does exist and is often caused by hormonal imbalances. Throughout history, menstruation has been despised. In the Bible and the Quran, we learn how in ancient times women were considered unclean and during their “monthly curse” anyone or anything that came into contact with them was considered soiled and sometimes a special purification ritual had to be performed.
PMS and periods are not the only hormonal issues that are considered to be a joke. Some comedians make jokes about thyroid disease and the general consensus is that the typical sufferer is middle-aged, overweight and tired. Sometimes this tiredness is equated with laziness and the weight issues with overeating. Someone close to me failed to get it today. We hadn’t talked in ages and the first thing she asked me about my hypothyroidism is whether I’d lost weight already. I really wish that was my biggest problem (excuse the pun), but she failed to get the fact that hypothyroidism means so much more than just weight problems and that it can affect your whole body.
This is why we need to raise awareness and make people understand what thyroid disease really means and that starts with the courage to be honest about how we are feeling and what we are going through. There is no shame in talking about our symptoms, certainly not amongst each other, as this makes us realize that we are not alone. I believe that honesty, awareness and education are the first steps to breaking down the stigma that is associated with this disease and its symptoms. I’d be interested to hear about what stigma you have experienced in relation to your illness and your tips on dealing with it. No doubt it is a tough challenge, but one I believe we can master by sharing with and supporting each other.