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Flying With Broken Wings: Prejudice, Discrimination and the Need for Education

Post Published: 04 July 2010
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Category: Column, Flying With Broken Wings, Thyroid Symptoms and Effects Column
This post currently has 45 responses. Leave a comment

“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[1] 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 As a result, you may become ashamed, withdrawn and afraid to be open about what you are going through, which is understandable, but also very sad because it is precisely such openness that is needed to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[2] 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.

All my love,

Sarah

References

  1. False Greatness by Isaac Watts
  2. Stigma and illness: ethnic conflicts in rural communities
  3. The Elephant Man, Joseph Carey Merrick
  4. Freak shows
  5. Leprosy stigma
  6. Leprosy
  7. Syphilis
  8. Syphilis (a history of plastic surgery)
  9. History of acne
  10. Devil’s mark
  11. Sparta
  12. Nazi “euthanasia”
  13. Tuberculosis
  14. Albinism
  15. Persecution of people with albinism
  16. Albinism in popular culture
  17. Description of menstruation in ancient times

[1] http://bit.ly/aAKXc6

[2]Teratology is the study of abnormalities of physiological development. It is often thought of as the study of birth defects, but it is much broader than that, taking in other developmental stages, such as puberty; and other life forms, such as plants.”

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45 Responses to “Flying With Broken Wings: Prejudice, Discrimination and the Need for Education

  1. faith72 says:

    That’s so sad to hear how society treat invisible illness bacause they could never find cures until later in time when people passed away,by then it was too late.

  2. Lolly says:

    Great article Sarah, I remember growing up when philamide had been used for morning sickness in pregnancy resulting in babies born with limbs missing or stumps for limbs they too were ostracised.

    I really enjoyed reading every bit of this, people are still persecuted for having HIV or full blown aids today the stigma of disease mentla or physicla still goes on.

    I despise people immensly who mock disability or laugh at someone less fortunate, when they don’t understand what they are going through or how there particular disability or deformity effects them. This can be said of thyroid disease hypothyrodism and with hyperthyroidism the opposite are you anorexia, who you looking at.. my nickname when my eye disease was bad was Nemo although I didn’t like it, I learned to just ignore it I know it wasn’t meant in a nasty way but all the same it still made me more conscious of the bulging uneven eyes with the stare that looked like I was going to kill someone.

    I am so pleased that those days are over and my eyes are pretty much back to normal not 100% but they don’t stare you in the face anymore (excuse the Pun double meaning).

    I felt like I was having a history lesson and everything you talked about here I remember reading and studying. My own mother worked in a TB hospital well it was a chest hospital but isolated for TB patients. Now that TB is not as rife in this country although it is making a come back that hospital had closed, and been replaced with something else. I spent many fond memories there as a child not worried about getting TB as a child you just don’t, I was never exposed to the serious cases but loved by the staff and doctors those were the days.

    I think this is one of your best columns so far and I do hate how Joseph Merrick was treated such a sad story.

    Great stuff Sarah loved it.

    Lollyxoxox

  3. Sarah Downing says:

    Hi Faith, sadly a lot of these “invisible illnesses” still don’t have a proper cure. Take Chronic Fatigue Syndrome, for instance. There are so many different causes, so a lot of it is trial and error, although some doctors, such as the one I am going to be interviewing this week (Dr Teitelbaum) do have a pretty good strategy in place.

    Love,

    Sarah

  4. Sarah Downing says:

    Hey Lolly,

    Thanks for sharing your interesting experiences with us. It seems that we never do learn really and people continue to ignorantly ostracise and discriminate against those who are different from them. Ignorance breeds fear, I guess. I remember the thalidomide scandal. It’s so true about AIDS too – many people are truly ignorant as to how it is really transmitted. We need to start teaching children these things, so that we end up with fewer ignorant adults. Autoimmune disease is sometimes associated with AIDS too.

    I also despise those who make fun of others less fortunate, particularly because some of those less fortunate are inspiring and probably live even more fulfilled and appreciative lives than those who are not faced with such challenges. Either way mocking people is wrong and hateful.

    I know that several of our readers battle with TED and the whole stigma and ignorance attached to it. I can’t believe they called you Nemo – that’s so insensitive. I am glad you were able to deal with it, but you shouldn’t have had to. Some people just don’t know when to draw the line. I am very glad that your eyes have now returned to normal.

    It is very interesting to me that your mum worked in a TB hospital. When was this closed down? I remember getting my TB jab when I was a kid. You can still see it. Do kids still get those these days? I am glad that you have fond memories of something that could be potentially pretty horrific. It is great that you were able to build up such a relaxed rapport with the nurses and doctors.

    I’m glad you liked this column so much. The story of Joseph Merrick has always made me cry. I saw the film with John Hurt when I was younger and I found it heart-breaking. From what I understand, Mr Merrick was quite an educated and kind-hearted man. I am glad that there were those who did care for him, such as the surgeon Treves and Princess Alexandra among others, but it must have been such a horrific challenge. Victorian England was a horrific place at times anyway. I once read that women’s clitori were occasionally removed to prevent masturbation, but I also read that that is supposedly a myth, so I don’t know the truth behind that story. Either way, people were even pruder than they are today and so I suspect even more judgemental (if that is even possible!)

    Love,

    Sarah

  5. Anna says:

    All i can think of is Chris Tucker in the movie w/Jackie Chan Rush Hour….There is a heavier and skinnier girl ….and Chris says you take the chubby one…the girl says “I have a thyroid condition” Chris says” WHATS A THYROID” Cracks me up every time but i know that it really is not funny ppl joke about it all the time as well as other disabilities without thinking how it makes others feel.
    GREAT ARTICLE Sarah!!!
    Love reading your and all the other Thyrantic articles written here
    Anna

  6. Sarah Downing says:

    Hi Anna, I have to admit that you made me smile too, although it is sad that there are so many jokes about thyroid disease. When you’re sick or disabled, you are faced with extra challenges anyway, so the last thing you need is other people making fun of you. I don’t always have the energy to educate every f-ing ignoramus who crosses my path, although many of them I try to. So right – they don’t spare a thought on how their evil comments make others feel, but Chris Tucker’s lack of familiarity with what a thyroid is is all too accurate, isn’t it? Glad you liked the article!

    Love,

    Sarah

  7. sarahlemke says:

    While I admit to having had the occasional odd stare and inappropriate comment associated with my various conditions, I’m not sure I would compare it to the atrocities committed by Hitler (in fact, that offends me more than a little bit). Wow. This is only the second article of yours I’ve read now, but I’m pretty sure I won’t be back for more.

  8. Dear Thyroid says:

    Hi Sarah Lemke;

    Thanks for taking the time to share your thoughts and opinions. We don’t want anyone to feel ostracized or like their opinions don’t count.

    That being said, I do have a few questions for you, do you have a chronic condition or illness that has radically changed the way you look and feel? Do you know anyone that was born with or became deformed in some way? If not, I would ask you to consider what that might feel like. I would also ask you to please consider how shocking it is that historically disease is as off-putting and misunderstood as it is today.

    Though you don’t agree with Sarah’s article, perhaps you might consider giving it another read. In my opinion, she’s not only made exceptional points, but factual points, to boot.

    I’m glad that you’ve only had to deal with the ‘odd stare’, as you said. Many of us with chronic illness, the impetus for deformity or obesity, among other things, has deeply impacted us and the quality of our lives. In fact, psychologically these issues can manifest such severe depression, people take their own lives. Imagine that?!

    How sad that we lived, and still live in a society that perpetuates intolerance.

    I respectfully disagree with your points. I wish you well. Thanks for taking the time to share your thoughts with us.

    Katie

  9. Dear Thyroid says:

    Sarah – I am so impressed with this article. As you know, as I’ve said before, your historical pieces enlighten, engage and educate me. I always feel like I’m walking into a vintage library and taking a cultural/historical tour.

    I am SO GRATEFUL and APPRECIATIVE of all of the hard work that goes into writing your beautiful pieces.

    Lots of love and gratitude,
    Katie

  10. Sarah Downing says:

    Thank you very much for your comments, Katie. The whole point of this article was to show that prejudice, discrimination and stigma have occurred throughout history and are still occurring today. One might say that some of these cases are worse than others, but I don’t feel the need to classify or compare them and neither do I think we should. For those affected, prejudice, discrimination and stigma are always horrific and the one thing all these cases have in common is that these are people who were and are victimised due to their illnesses or perceived abnormalities. This needs to stop and the only way to make this stop is to write about it so that people become more aware.

    I am so glad you enjoyed this article, Katie. It took a lot of research, but I learned so much myself and, as you know, I love learning.

    Love and gratitude right back to you,

    Sarah

  11. Dear Thyroid says:

    Hi Sarah –

    Everything you just wrote in your comment speaks so beautifully to why I love this article and so many of your previous historical articles. You take the facts, facts we don’t always know about, and educate us. The only way to invoke change, is to take a proactive posture, which is exactly what you did.

    I learned SO MUCH, I’m still digesting what you’ve written. I absolutely love this article, and I think it is PARAMOUNT for us to have the opportunity to see how LITTLE has changed. Not only is that terrifying, it’s imperative.

    As we go forth as a community, we have to fight for change every single day. This is a wonderful reminder of why we need to fight. Moreover, when you see that things HAVEN’T changed, it’s one hell of a wake-up call.

    Speaking for myself, I’m inspired because I am more aware.

    Once again, Love and gratitude, kid.
    Katie

  12. Sarah Downing says:

    Hi Katie,

    I love writing about history because I feel we can and should learn from it in hopes of not repeating our mistakes. The Germans even have a word for this: Vergangenheitsbewaeltigung (dealing with the past).

    I’m glad you learned a lot as this was my aim. It is indeed a wake-up call to see how little things have changed!

    Love right back to you, Katie.

    Sarah

  13. sarah lemke says:

    Dear Thyroid and Sarah,

    I had my thyroid removed due to a tumor in 1991, so I believe I have an understanding of chronic disease. I am also a physician by trade, although I hesitate to say that since quite a bit of “witch hunting” and “saber rattling” happens to that profession here as well (but I am willing to mostly overlook because I understand that in frustration patients can be quite angry and lash out at their doctors). I was referred to this website by a regular, and have only been reading around for maybe a month or so.

    I completely understand how disease can isolate and ostracize. I also understand how it is human nature to fear what you don’t understand (the awareness point of the article is valid).

    Where I disagree, which last time I checked was my first amendment right, is to equate Hitler’s extermination of the ill with a social stigma from being fat and balding. And yes, I understand that depression is a common denominator among the chronically ill, in some extreme cases leading to suicide, I still think there are several orders of magnitude in difference. To equate “the impetus for deformity or obesity, among other things, has deeply impacted us and the quality of our lives” today to that of the treatment of Mr. Merrick? To that of exterminated mentally ill patients?

    It’s not my objection to the subject matter, as all manner of intolerances and discriminations still exist in this country, and worse around the world. My objection is the comparison made to a man who was/is largely unrivaled in his depravity with the discrimination a person is likely to encounter in today’s world, nothing more and nothing less. I do think the degree matters, or should we blanket every injustice from private golf courses to affirmative action with the actions of Hitler?

    Upon looking at the references listed, considering your “factually correct” and “research” points, it would appear that at least for the Hitler reference this is true. In fact, Ms. Downing’s points are almost directly word-for-word the same as that article.

    My goal was not to start an arguement, but to voice my opinion that part of the article was offensive to me.

  14. Dear Thyroid says:

    Hi Sarah;

    I’m very glad you took the time to comment again. As I said in my original comment, (paraphrasing), we want everyone to state their opinions, even if they/you disagree. Dear Thyroid welcomes spirited debates and disagreements.

    I don’t think you were trying to be argumentative or combative. I think you were stating your opinion. We’re never going to agree about everything. We respectfully agree to disagree when we don’t, and we share our honest opinions.

    Once again, I appreciate that you shared yours.

    Regarding your first paragraph, I respectfully disagree. On Dear Thyroid, we celebrate our good doctors. We refer patient recommended doctors. We have doctors guest post on our blog frequently. We need more well educated doctors about thyroid diseases, thyroid cancers and managing a host of autoimmune diseases. Sadly, many patients have gone years being misdiagnosed and mistreated. That is a fact, a very tragic fact. And, worse, many people have lost their lives to certain thyroid diseases and cancers due to mistreatment.

    The reality is, most people are uneducated about what the thyroid is or what it does. As a result, most patients don’t say to their doctors “Hey, I think my thyroid is imbalanced”. How would they know, to begin with? Most doctors don’t do a full thyroid blood panel nor do they order an ultrasound. Even when many patients are diagnosed, they aren’t always treated, yet they suffer dearly as a result of not being treated, both mentally and physically.

    The last thing I wanted to say, is that I’m very sorry that you had a tumor that precipitated a thyroidectomy. I hope that you are feeling and doing well. Please know that we are here to support you, if you want support.

    Thanks for taking the time again.

    Sincerely,
    Katie

  15. Sarah Downing says:

    Thanks for explaining your position, Sarah. I am a writer and translator for a living, so I make sure my research is accurate even if it takes hours, as this article did, to write. Allow me to reiterate: nowhere in my article did I equate or compare any of these things with thyroid disease. That certainly wasn’t my intention. My aim was to feature a selection of examples to show how illness and perceived abnormalities have been stigmatised throughout history. As for whether I am qualified to write about the Nazi period, I have a BA in German, am fluent in the language and have lived in Germany for over 10 years, so this is something that I have studied extensively. I wanted people to know what has gone on in the past so that we can learn from this and hopefully prevent it from happening in the future. In fact, this is precisely the German attitude to the extent where today’s German children feel that the Nazi period is “shoved down their throats” at school in an effort to achieve Vergangenheitsbewaeltigung (dealing with the past). Yes, I did quote part of that article, but not the entire article, which would have been plagiarism and is not something that I do. That is why we writers include references.

  16. Lolly says:

    Bravo Sarah and Katie,

    I have to admit though Sarah I did find the reference to what Hitler turned my stomach only because most of us know what he did. I undertand why you used this as a reference to stigma so I brushed past it.

    Lollyx

  17. Sarah Downing says:

    Hey Lolly,

    Thanks for your input. Yes, I think we all know about Hitler, the Nazis and the Jews, but how many of us actually do know that he targeted other groups such as the mentally ill? I wouldn’t mind betting that there’s not that many of us – in my experience, this is not commonly known, which is why I included it.

    Love,

    Sarah

  18. Lolly says:

    Sarah,

    I am not offended by what you put these are the facts and it goes to show that things like this happened.

    I still love your article and love what both you and Ktie wrote in response.
    I will asnwer your question later.

    Love
    Lollyx

  19. Sarah Downing says:

    Thanks Lolly,

    I am glad that I didn’t offend you. It’s tough writing about topics like this too because sometimes they affect me quite deeply.

    Love,

    Sarah

  20. Amanda says:

    Sarah,

    Excellently researched article. People have been and continue to be discriminated against and ostracized for a wide variety of things, but I think it all comes down to fear and ignorance. Teenagers do this to other perfectly normal lovely teens, because they want to be liked, cool, funny and “fear” rejection. Even adults, in a small way, discriminate and make judgment about others for the most minor reasons, like what is in your grocery cart…. Yesterday in the grocery store, the young man ahead of me at the checkout had a cart full of store brand white bread and Hawaiian Punch, about $70 worth…. I was only thinking that it was nice that he was out doing the shopping… the woman behind me thought it was her job to whisper to me “white trash grocery day”. I shook my head, and said “shhh”. He took his purchase with a smile and went out to the van in the store parking lot that said “Food Bank”, put the bags in and walked over to his own car and left… this is is a trivial and minor example.. but it happens on so many levels… if you can stop yourself from judging people without knowledge of them or their situation then you can better yourself in all ways. It is never funny or ok to cause someone else discomfort because of the way they look, feel or just “are”. I poke fun at myself, because I am not much of a social type person, I hate crowds, and tend to blurt out bizarre and unnecessary things about myself randomly… but that is my choice, I would never do this about someone else. I know far to well that it hurts to have someone judge you, when they have no knowledge of who you are or what you are about.

    Your examples were horrific examples of what has happened. Being discriminated against or judged wrongly hurts at any level. I have been called “retarded” because I am very quiet and shy, laughed at when I was overweight, and now whispered about at work because I blurted out that I have a thyroid problem when asked how I lost all the weight. No, I haven’t been physically attacked or put on a “colony” but I have felt a pinch of what it is like to be misunderstood. Our best defense is knowledge and information. I won’t be caught off guard again if asked about my weight or why my hands are shaking. Sadly most people don’t really want to know, it is too much work to be understanding and empathetic. Yes, we all have our problems, but there can only be balance in life when we care and understand.

    I am going to show my daughter this article when she gets home from “art camp”. She will love it and I know she will read the references also.

    Amanda

  21. Miriam says:

    Hi Sarah

    What a wonderful constructed article. Very controversial this week.

    Its sad that people make assumptions from looks alone. I do remember reading and seeing Jon Hurt portraying him in the Elephant Man. Sad that the people at the time didn’t see him for the person he was, not how he looked.

    As for Hitler…..yes, I was a little upset reading about that part of history but sadly its fact and I know with you living and working in Germany how the Germans feel about that part of German’s past history, and not your personal thoughts, but that you were only portraying what is sadly a part of history that is fact and has to be told to today’s generation, even though its very upsetting to read.

    Yes, its sad about your friend Mandy. It sounded like she made the best of her short life. I had a disabled friend too when I was a young girl. His name was Anthony, his mother was a friend of my mother. He was a couple of years older me and was in a wheelchair. He was a lovely boy with a great personality. I often went round to keep him company. We often used to play cards and chat and watch TV. He was not a well boy and often in hospital. He sadly died in his late teens/early 20s.

    Sad that there are a lot of people who are quick to judge and discriminate people by first glance or by the way they speak or what they say, but we will always come across people like that in our lives and its up to us not to listen and learn about people before making our own judgements. Not everyone agrees and gets on with everybody, but and we all have to learn to accept this and get on with our lives. We all have our Thyroid conditions that challenges us on a daily basis which no doubt often gets us down and sometimes makes us get depressed, I am no exception.

    I too always felt conscious about how much weight I put on as a result of my Thyroid condition. It bothered me for years, that people thought of me as being lazy and lethargic and probably overeating and using the Thyroid as an excuse for how I was, not realising that it was the truth. Thank goodness I have managed to tackle some of the weight problem and psychologically feel a little better in mind (though not regarding my Thyroid condition) not being as heavy, but I will never lose all the weight I put on over 20 years ago and except myself for who I am regardless of what people think of me.

    Anyway, Sarah, keep up the good work, you do a thorough research and your articles are there to make us look at life from a different prospective, and to say that we Thyroid sufferers are not alone and we all suffer similar symptoms at some point or other.

    Looking forward to next weeks article as always :)

    Love
    Miriam

  22. Dear Thyroid says:

    Lolly –

    I absolutely hear you. Many elements of this article turned my stomach, KNOWING THAT THIS ALL HAPPENED in the past, and that some of it is still happening today.

    Writing about controversial topics is never easy. We believe in an open honest, spirited forum – where each person has the right to exercise their opinions, even if they differ from the ‘Dear Thyroid’ mainstream or the author.

    I am as happy you spoke up as I am that Faith, Ana, Sarah Lemke, Amanda and everyone else.

    Katie

  23. Dear Thyroid says:

    Miriam – Thank you for being so honest and up front about how you feel, too.

  24. Lolly says:

    It is very interesting to me that your mum worked in a TB hospital. When was this closed down? I remember getting my TB jab when I was a kid. You can still see it. Do kids still get those these days?

    Sarah,

    My mum nursed for years in that same hospital back in the 60′s. I’m not actually sure when it closed down but when I went back recently and we passed that area I noticed it had gone and something entirely different had taen it’s place. I guess with more contriols now immunisations and BCG’s the need for these specialised hopstials had become redundant many patients were long term from young to old.

    I had my TB jab when I waas around 14 yrs old, asnd when I started nursing at 19 I had the test for TB whcih showed no antibodies for TB so I had to have it done again so I had a double dose of the GTB jab. funny you should ask about that because when my Grand daughter was born they had decided to give babies born to ethnic families veven if they have never been out the country and of mixed origin the TB jab Shannon had hers i was very skeptiacl and tried to persuade her not to let them do it to such a young baby who was already premature that is how I know that TB is making a comeback in the country.
    Now this year K was told by her midwife they no longer do the TB jab for ones so young. It’s still around 14 yrs old and if the test (heath) you have before shows positive then you don’t have to have one at all just like K.She was covered.

  25. Sarah Downing says:

    Hey Amanda,

    So happy you enjoyed my article. Research is my passion and even when I working on other stuff, I often find myself getting sidetracked reading about additional things.

    Exactly right – fear and ignorance are indeed two of the main culprits. One breeds another. It’s so tough to be a teen isn’t it? – the desperate need to fit in and be accepted. Sometimes, I think that ultimate desire never really goes away.

    I found your shopping story quite interesting and I also learned something – food bank is, I believe, an American term with which I was previously unfamiliar. People can be so judgemental for the silliest of things, can’t they? I hate wonder bread, but then I live in Germany, a country that is renowned for its wonderful breads. That said, Corey’s (my American fiancé) mother loved wonder bread, but we talked about it recently and he said that interestingly white bread used to be a status thing in the US, which I thought was quite fascinating seeing as it sometimes gets quite a bad rap today.

    Ideally, we need to try and give everyone the benefit of the doubt without being put off by how they look or any conditions they might have. I know some people manage this better than others. I think it is good to be able to laugh at yourself, but we also need to cut ourselves some slack sometimes. I think there are quite a few people in your position who are also afraid of crowds. Crowds really freaking annoy the hell out of Corey and I at times.

    You are right. I know I picked some horrific examples, but I also felt that this would make my point better. In my articles, I try to write about several diseases in order to reach more readers and also because I feel this is more interesting. In such historical articles, I rarely write about just thyroid disease.

    Knowledge and information are vital – I couldn’t agree more!

    I hope your daughter loves this article too. Please say hi to her from me!

    Love,

    Sarah

  26. Sarah Downing says:

    Hey Miriam,

    It was rather controversial, wasn’t it? But I do feel that this is a topic to which we can all relate. Talking about such examples of illness-related stigma throughout history serves to illustrate that it never really goes away and to tackle this we need to be aware of it.

    My father also cried when he saw the Elephant Man. It’s a film I have never forgotten which is why I wanted to write about him. He really is a very inspiring man!

    I hear you about Hitler. It upsets me too and sadly it is fact. I’m perhaps used to talking more openly about it a. because I studied it and b. because I live in the country where it happened and where it is still such a big topic. On the other hand, it is interesting to note that the Hitler salute was actually banned here, whereas I believe it is still legal in other countries. This illustrates in part how seriously Germans view their grievious past.

    Mandy was great and I still remember her. I actually cried my eyes out writing about her, but I wanted to honour her in one of my articles. She was a lovely, cheerful girl!

    I really feel for you for losing your friend Anthony at such a young age. I am so happy that you got to know such a precious friend though, but I know it’s never easy when someone you love leaves you. Thank you for sharing this.

    I believe and hope that when we are used to being judged ourselves, we become more tolerant and understanding to others and less likely to judge them.

    I’m with you with the weight gain and people’s retarded and misinformed reactions to this. As you know, I’ve had my fair share of this myself as have many of our other readers. I’ve learned from this that what is most important is that I like myself and the others can quite frankly sod themselves because we can only be the best that we can be and I try jolly hard, as I know we all do!

    Thanks again for your kind and interesting comments, Miriam!

    Love,

    Sarah

  27. Sarah Downing says:

    Hey Lolly,

    It’s both interesting and scary to hear about how TB is making a comeback in GB. It’s also interesting to hear that they now do a test before they give you a jab as they didn’t do that back when I was a nipper! The whole bloody class got the jab. I believe I was also around 14 when I got my jab.

    Thanks for all this interesting information.

    Love,

    Sarah

  28. Lisa Stiers says:

    Hi Sarah, thank you thank you thank you. We get so much put upon us! You get called so many names and labeled for having an illness you never asked to have, believe you don’t want to have hashimotos or any other illness. Why are we in the dark ages with this illness! Why do we become unloveable because of it? Why can’t people you love so much understand? Most of the time they say it’s what they went though and what you put them though, it’s never what did we go though because of an illness that robs you body of so much. It takes you on a roller coaster ride you never stood in line for. This thrill ride isn’t full of excitement for anyone! It’s pure hell on us and the people we love! It even harder when you didn’t know that thyroid could do this to you. This master gland of ours takes you and turns on you, we didn’t ask for this and we don’t have any control over it. So why are we treated like we do? I don’t understand how people could have no compassion for you as a person who could not help how it effect your body, mind let alone your spirit. So thank you again for touching us in away that makes me proud to call you friend and most important of all, someone who cares and is so kind to take the time to listen and give all of us hope!
    Love and a huge hug, Lisa

  29. Sarah Downing says:

    Thank YOU, Lisa for being my friend. I am also happy to know you and always happy to listen and help when I can.

    You have such an amazing way with words and so perfectly encapsulate the feelings of so many of us. There are so many stereotypes about illness, but each of is an individual with individual symptoms that we didn’t ask for.

    For what it’s worth, I think you are a lovable person and anybody who doesn’t see that is frankly quite crazy! Of course, you also make an excellent point about how tough it is when our loved ones fail to accept and support us. Sadly, I don’t have any answer for this, although I have written past columns about it and you are in no way alone.

    Love and a hug right back to you, my brave friend!

    Sarah

  30. Lori says:

    Sarah – I love your articles that are full of history. I learn so much from them and this one is outstanding.

    Stigma, discrimination and prejudice can cut deep on so many levels in each of us individually, I think, whether we have experienced it through our chronic illnesses or from other areas in our lives, or from others that are close to us. I tend to feel others pain instinctively and deeply, even when it’s “invisible”. Although, I also often ask, is it really invisible or do some people just not want to take the time to pay attention? I see it all the time in someone’s eyes, tone of voice, expression, and even in their typed words.

    I learned empathy at a very young age. My Uncle Larry is mentally delayed and physically deformed, and as a young child I remember the mean remarks, faces and the stares from ignorant people whenever we went out in public. You rarely saw a person like this in public in those days. It hurt and angered me that anyone would be mean to this beautiful, kind-hearted human being. It made me want to walk down the street or in the stores with him all the more. Even the police in his neighborhood picked him up one evening when he was walking his dog after dinner and locked him up in jail, as a “drunk”. He laughs and jokes with us about it to this day but it was anything but funny at the time. I could tell you many unbelievable stories that he and his family have had to deal with over the years and sadly, to this day he is treated so unfairly even by some people who work in this field and even worse not long ago when hospitalized he was treated very badly, but that’s another story by itself. He is one of the lucky one’s who has family very involved in his life and still his family has to always be on their toes and fight for him to be treated and taken care of like the important person that he is.

    The history of stigma, prejudice and ignorance in this type of syndrome, much like mental illnesses, have come a long way thankfully from the barbaric ways they were treated many years ago, but still so much has not changed and needs to change.

    I have been judged wrongly by some people for a long time and I don’t think it will ever stop hurting, but it’s one more thing we have to overcome and move on with our journey to “wellness”.

  31. Lori says:

    I was typing and somehow submitted the above comment before I was finished. I have no idea what I did but to end, I just wanted to thank you Sarah, for another well-written article that really got me thinking. I agree we need to continue to speak up for thyroid diseases and cancers for better diagnosis and treatment. We have much work to do to remove the stigma as well. Like many others, I hate the thought anyone would have to experience anything like I did.

    Love,
    Lori

  32. Hey Lori,

    So glad you like my articles and that you liked this one so much. I have a passion for writing the historic ones. I’d like to write more of then, but I need to think up some new ideas.

    I so agree on your comments on empathy. I also tend to feel people’s pain and I also believe that some people just close themselves off to it and don’t care to pay attention as they simply can’t deal with it.

    The story about your uncle Larry made me very, very sad. What a great niece you were to be so supportive of him even when you were little. He sounds like a strong and inspiring guy!

    I so agree that we have come a long way, but we also have a long way to go and speaking out is the key to bringing about change, even when some of these topics are horribly painful for us even to contemplate.

    Thanks again for your comments! I’m glad my article got you thinking. That was my design.

    Love,

    Sarah

  33. Lisa Stiers says:

    Oh Sarah, I don’t know if I’m brave or not, but thank you it means the world to me that you said that. I didn’t ask to have this illness and boy I sure really don’t want it! I didn’t ask it tochange me! Non of us wanted it. We get told because of our memory problem we are less than others! We don’t care, when infact we care more than most people know. We are wore out, not your fault! We are cold or hot not our fault again! We want to be like everyone who is so called normal and we are not! We love and laugh, hurt and cry, and if we do it in front of people sometimes we are put down for it. We are not allowed at times to rest, why because to others we just have normal thyroid so we are not tired or sick. How dump is that! No understanding for what we go through at all. However if those around us get sick we better have it! If we get moody, depressed or have other problems well there is something wrong with our thinking or we are mean and so on and so on and so on. Like I have been told as well as alot of us we are the problem, your lazy, your nuts, you don’t listen and so many other things you would never tell someone else. You know how did my mother feel when she was told she had parkinson and that she wasn’t going to be the same. How do we feel when we are told we have a dieaese that we must live with and monitor for the rest of our lives, we feel the same, disbeilf and ok what’s next for me. We get classified as this illness is normal, that is funny, we have different stages- borderline, graves, hashimotos, cancer and so on, they are finding knew things with this dieaese that non of thought was related to it everyday. So I don’t know if I’m brave or not, all I know is I’m still here wondering what is next, who will label me more, who will leave next or will there ever be a cure? It’s not fun to have those you thought would be by your side threw thick or thin just stop oneday, look at you and say I can’t give you hope, stop telling you you are loved and stop saying they are proud of you and can’t find ways to repect you! That is what this illness does to alot of us. We suffer more than just physical pain, we endure hell and not alot of security in the process!

  34. Sunil says:

    Hi Sarah,
    Its really sad that society treat invisible illness because they could never find cures until later in time when people passed away,by then it was too late,thanks for ur kind information and thanks to sharing with us.

  35. Lisa, that anyone would think we are not normal is ludicrous. After all, it’s a crazy world we live in and what is truly normal today? Normal’s a very subjective word after all. What really counts is what we make of our lives and that we live life to the fullest or as full as we can live it. It doesn’t matter what other ignorami think because they fail to get it. People don’t like hearing about illness, period. It bores and frightens many people, others associate it with death and others fear that they may too one day be “struck down”. This is why education is vital – we need to educate people about what this illness really means and how it affects us. At the same time, they need to realise that this does not make us less of a person – in fact, some of us are greater people because of it because it has among other things given us more understanding and empathy of others who are suffering. It is important, but difficult, to surround ourselves with people who do understand or at least try to understand and people who care about us and don’t judge us because of a shitty disease that presents us with so many daily challenges anyway.

  36. Sunil, it’s not just the invisible illnesses – some of them are very visible (such as that of the Elephant Man or lepers) and that was part of the problem for these people as their outer appearance repulsed others and caused them to judge those who were ill. Glad you liked the article.

  37. Melissa says:

    Hi Sarah, thank you for writing this wonderful article.
    I personally found Dr. Lempke’s reaction negative, something I rarely see on Dear Thyroid. It kind of woke me up because the tone is usually supportive and expressively encouraged (within certain guidelines) My feeling is that although she is a physician and has experienced her own health issue’s, she does not “get it”. To feel or have felt like a freak. I love history and some people believe it or not, are not completely educated on The Holocaust. It is worse, not to talk about painful subject matter because that’s exactly what perpetuates ignorance. Keeping our mouths quiet. Just because we are discussing history does not mean that we partook in it. Everyone knows that history repeats itself and it is best to be reminded of what took place, to not forget. When I was reading it, I imagined myself during those times and know that by Darwins theory of Evolution.. I would not be one at the end of the line for “survival of the fittest”.
    This is a support group, not an academic arena for publication (with regard to her critique on your writing). I apologize Katie if I have said anything offensive here, but that negativity distracted my original thoughts. Thank you Sarah for your contribution and expression. :)

  38. Hi Melissa,

    Thank you very much for your comments. I couldn’t agree more that it is vitally important to talk about the past in order to learn from it and prevent us from repeating our mistakes. I also know that too many people are indeed ignorant as to the full extent of what went on in the Holocaust. I have the opportunity in my articles to educate people and this is exactly what I choose to do.

    As for Dr Lemke, I do not know her personally, so I’m not entirely sure why she took the view she took. Of course, everyone is entitled to their point of view, but it goes without saying that it was not my intention to offend anyone (as I explained above). I am also puzzled as to why anyone would doubt my research and ability to write because this is what I do for a living. I do put my heart and soul into these articles and take many hours of my own time to write them. I have always believed that if you’re going to do a job, you should do it properly and that is also the view I take with everything I write.

    Be that as it may, this is indeed a support forum and that is what we focus on – supporting each other. I think we generally do a good job of this. Of course, we have to encourage freedom of speech, so that people feel at liberty to express themselves and there are always going to be disagreements or misunderstandings, particularly when an article such as this has such a controversial nature.

    Love,

    Sarah

  39. Melissa says:

    As a disabled Mexican-American, I found Dr. Lemke’s argument examples of Injustice of “private golf course” and “affirmative action” offensive and weak. Number one “private golf course” is that an injustice? For someone like myself who can barely afford appropriate treatment, and for many of us who struggle with health coverage or the financial stress of medical bills; I cannot begin to describe how inappropriate and pretentious the Dr. sounds. In addition, with all of the immigrant controversy that is happening in this country in such states as Arizona, do you really believe that “affirmative action” is a compassionate subject for injustice when someone brown like me could be treated unjustly for not carting around my birth certificate? I agree that I dislike when people pull out the Hitler card @ the drop of the hat for weak argument sake, however I believe that in the above article it was used simply as a historical reference and Sarah has entertained us with numerous of them. People’s opinions are welcomed and I would never judge a person after a few comments without getting to know them really well because miscommunication could be a factor. I just found them unconstructive.

  40. Hey Melissa,

    I am very sorry that you are faced with racial discrimination in your daily life. There is no doubt that this is so wrong and it makes me very sad that this still goes on today.

    As you said, I decided to include the part about the mentally ill during the Nazi regime because I was eager to educate people about a fact that is actually not that well-known by many and apparently there are even Germans who don’t know about this.

    I think the bottom line is this: we shouldn’t grade discrimination or stigma because the net result is the same: it’s horrific for the person who is subjected to this and of course there is no way we can grade others’ pain anyway because we are not in their minds.

    Stigma due to thyroid disease is related to so much more than obesity and baldness, besides which there are enough patients who don’t suffer from these symptoms and are still faced with horrific discrimination. Coupled with the symptoms of thyroid disease, many patients also have to deal with additional autoimmune illnesses.

    To my mind, any illness that leads people to commit suicide by spiralling them into a deep depression or giving them the feeling that life isn’t worth living is horrific and needs to be talked about.

    Of course, the circumstances of the historical stigma mentioned in the article are different to those of thyroid disease, but the article illustrates that stigma has always been around and still is today. I could have written an article on just thyroid disease, but I think practically all of us are already familiar with the stigma related to this, so I chose to look at this from another angle. It never hurts to learn new things, does it? I will continue to write about controversial topics because they are educational and enlightening. They are not always easy to digest, but the learning experience makes up for this in my opinion.

  41. Melissa Travis says:

    Wow!! Hey toots!! Love love love all the work and research on this! You are a beautiful brilliant writer.

    I’ve been in the hospital so much with myself and then my dad’s brain tumor so I didn’t get to read this as soon as it came out! BUT OHMY you are brilliant!

    I got goosebumps reading the part of the disabled in Germany – b/c I’m a Jew — so now I’m like – WOW – I wouldn’t stand a chance!! If my illness didn’t get me my ethnicity would! ha!

    I’ve learned a great deal too!

    And yes– one of the things I’m sometimes annoyed by and sometimes grateful for are the INVISIBILITY of all my illnesses – from the cancer to the auto-immunities I’ve often been able to just plug along and not have to TALK about it to the public. My WEIGHT is so much more OBVIOUS… and it goes up and down and people seem to be much more concerned by it than anything else.

    You’re a fab writer and researcher!
    Cheers gorgeous!
    x
    Melissa

  42. Sarah Downing says:

    Hey Melly,

    Thanks for the lovely compliment. You’re a damn good writer yourself, girl!

    The part about Nazi Germany is fucking horrific and that’s why I included it. I know way more than I care to about that time period because of what we studied at uni and I think many people don’t know the half of it. Jewish blood also runs in my veins, so I don’t think I would have been the order of the day back then either.

    It pisses me off that people are so focussed on weight when in fact it is really the least of my worries! I have got to the point where I don’t much care anymore about losing weight because to me it is about being fit and I really am – especially since I’ve been working out with my personal trainer. I went to her wanting to lose weight, but on my journey to getting fit, I realised that there is so much more to it. That’s going to be a subject for another column and I’m also planning to interview my trainer and her partner.

    There are also times when I don’t want to talk about my illness. I can be selective about whom I talk to about it because it stresses me out when people fail to understand.

    I am so sorry to hear about your dad’s brain tumor. Please keep us posted on how he is doing.

    Love and hugs,

    Sarah

  43. Cynthia Ortega says:

    ahhhhh.. wonderful article.. very impressive! Ive learned so much.. i love your historical columns. I also enjoy reading everyones comments.

  44. Sarah Downing says:

    Thank you very much, Cynthia. So glad that you learned a lot. I love writing my historical columns too. I’m always thinking of ways of writing more of them, but I have to find some kind of connection between them and thyroid disease/illness.

    Love,

    S

  45. Wonderful publish which has received me considering in regards to the prospective of the idea. Truly truly incredible.

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