Patient Bulletins

No one with Graves’ disease wants to see another person diagnosed with this illness, but finding other people struggling with the same challenges provides some degree of comfort.

Patients not only turn to their doctors for advice; they also seek informative and comforting stories in the media. However, the reporting of these stories is a relatively new phenomenon. Historically, we haven’t told the faceless public about our problems.

In the late nineteenth century Graves’ disease was referred to in newspapers by a daunting, tongue-tangling name, “exophthalmic goiter,” because the bulging eyes of thyroid eye disease was reportedly necessary for diagnosis. The earliest American newspaper story I have seen regarding this disease appeared in 1879, when the Chester, Pennsylvania’s Daily Times reported that a Dr. Pepper—and I’m not kidding, but not that Dr. Pepper—gave a talk about his work with 70 patients.

Even in the 1800s newspapers were attracted to tidbits of importance and drama. For example, some newspapers listed the causes of local deaths as a way to inform the public in case safeguards needed to be taken to prevent future deaths. So when Virginia Waltmann’s cause of death was listed as exophthalmic goiter in 1895, it was somewhat of a relief for her Iowa neighbors because she didn’t die from the contagious typhoid fever.

Graves’ disease sufferers rarely received personal attention when death was not involved. One rare case was when Ohio’s The Newark Advocate reported in 1902 that Florence Beckel was to travel to New York to see a specialist. Beckel was fortunate to be able to travel as well as seek treatment in the early twentieth century. As reported from Berlin by The New York Times in 1913, “It was not so many years ago when a diagnosis of exophthalmic goiter was equivalent to a death sentence.” The poor survival rate motivated doctors to seek new treatments, and many doctors thought they found it in X-rays’ 50 percent success rate.

Doctors’ columns appeared with more frequency in the twentieth century, and a small number of doctors became national experts through their writing distributed by newspaper syndication services. For Louis E. Bisch, M.D., Ph.D., there was no sense of humility presented at the beginning of his 1930 King Features’ column describing him as, “Famous Authority on Health and Psychology.” We would be appropriately leery if any endocrinologist introduced himself/herself in this manner today, but self-aggrandizing was not uncommon at the time. In one column representative of doctors’ columns, Bisch initially identified the primary symptoms of the disease as enlarged glandular elements, damage to the eyes, and the symptoms of “rapid heart and palpitation, tremor of the fingers, sweating, headache, loss of weight and general nervousness and prostration.” A popular recommended treatment appearing in early columns was rest, both in bed and on the porch with its fresh air.

Doctor’s columns were responsible for not only informing the public of the disease, but also for contributing to the eventual acceptance of “Graves’ disease” as the accepted label. These columns transitioned the naming of the disease from exophthalmic goiter with secondary mentions of Graves’ disease and Basedow’s disease to Graves’ dominance. The doctors’ columns survived as the primary sources of information on Graves’ in newspapers for most of the twentieth century, but scientific reporting and human-interest stories would eventually challenge their authority. The end of World War II ushered in an atomic age that included radioactive medicine as the byproducts of atomic energy produced by the American government.

To understand the emerging technology, journalists turned to scientists and doctors as their sources. Scientific and medical reporting looked at the opportunity atomic energy byproducts offered the public, such as radioactive iodine. The New York Times reported in 1946 and 1947 on radioactive iodine’s use for the thyroid, referring to it as “chemical surgery,” but noting its risk of cancer was unknown.

Doctors’ columns were written rather authoritatively until the 1980s, when these columnists increasingly provided alternatives to patients rather than just directions. In this same decade a style of medical reporting familiar to contemporary readers dealt with Graves’ disease.

In 1985, The New York Times ran a story on the hereditary factors associated with diseases such as Graves’. This reporting on the research of the time closely resembles today’s reporting on DNA and medicine.

Human-interest stories about Graves’ disease began appearing with greater regularity in the 1990s. In one case, a college track athlete’s misdiagnosed Graves’ ruined her college career and she suffered from both seizures and hallucinations. Despite its dramatic elements, the story was simply a local one. In contrast, Barbara Bush’s diagnosis of Graves’ disease became a national story before her husband, then-President George H.W. Bush, was also diagnosed with the disease. Mrs. Bush’s diagnosis was a human-interest story unlike her husband’s, because any president’s diagnosis has potentially serious ramifications associated with it. Her story also fits within the frequent gender associations of news, especially in the 1990s. Human-interest stories often find themselves in lifestyle pages aimed at female audiences. Historically, men are more associated with “hard news” (politics, law, wars), while women are more associated with “soft news” (personalities, recipes).

This female orientation of news—soft news—intersects with the bias of Graves’ disease affecting women more often than men. As we know, Graves’ disease appears significantly more often in women than men. With the exception of President Bush I, Graves’ disease has frequently been presented as a women’s disease. From a gender-bias perspective, women are frequently reminded to conform to norms of beauty. Because protruding eyes is an observable symptom for some Graves’ patients, a disease that affects a woman’s ability to meet these norms may receive greater or more dramatic attention in a patriarchal society. Also, it may not come as a surprise that contemporary reporting on Graves’ disease is preoccupied with celebrities like Missy Elliot and the athletes whose careers are negatively affected. The personal lives of private and public figures have become sources of useful information when the stories educate, not just inform.

© Copyright Timothy R. Gleason, Ph.D.. All rights reserved.

Used with permission of the author.

Dr. Gleason is a journalism professor at the University of Wisconsin Oshkosh.

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