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IN FACT AND FICTION, MS PATIENTS EXPRESS CONCERNS ABOUT DISCLOSURE

Stratmoen, Jo

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The President of the United States has multiple sclerosis (MS). For 18 months, Josiah Bartlett struggled with the decision of whether to disclose his condition to the public. Then, in May this year, in a move that did not necessarily meet with approval of some of his closest advisors, the President went public.

The dilemma faced by this fictional character, portrayed by Martin Sheen on NBC's hit series, “The West Wing,” is one that confronts any person diagnosed with this typically degenerative neurological disease.

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FEAR OF DISCLOSURE

A Harris Interactive survey of 562 people with MS, released in May, bears that out. It revealed that nearly 40 percent had lied about or hidden their diagnosis from family, friends, and colleagues because they were afraid of the consequences if their condition was revealed.

Moreover, more than a third (36 percent) of those surveyed reported that the diagnosis had a negative impact on personal relationships. Of those people not already married or involved in a long-term relationship, 42 percent said that their outlook about marriage and long-term relationships had been affected.

MS is a disease that at least initially lends itself to non-disclosure. According to Michael Olek, DO, Assistant Professor of Neurology at Harvard Medical School in Boston, unless patients experience a series of full blown relapses accompanied by ongoing, overt neurological deficits, they may keep their condition under wraps indefinitely. “If the relapse is relatively mild in nature and we initiate steroid therapy, it is possible for a patient to put up a good front for employers, family, and friends,” Dr. Olek said.

Clinicians take a neutral stance when it comes to advising people with MS regarding disclosure, said Dr. Olek. “I discuss each individual patient's circumstances with him or her and generally would never tell an employer or family member, unless specifically asked to by the patient.

“Only in situations where I feel the patient may endanger others were they to continue their employment, do I get involved,” he added. “For example, I had one patient who was an anesthetic nurse and because of her cognitive impairment, I thought it was unwise for her to continue working in that role.”

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THE POWER OF FICTION

Can a show like “The West Wing” affect MS patient perceptions about the course of the disease? Yes, according to Arney Rosenblat, Public Affairs Director of the National Multiple Sclerosis Society, which serves as a resource to the show's researchers. “To some people, fiction is more real than fact,” Ms. Rosenblat said. “So, if a person with MS sees that President Bartlett doesn't seem to suffer from fatigue, he or she will call us up and say: ‘I don't know where he gets the energy to run the country. Why do I get fatigued and he doesn't?’”

On the other hand, Ms. Rosenblat said, sometimes media portrayals can spread disinformation to the public and people with the disease when the facts are forced to conform to the objectives of the story line. She cited the NBC crime drama “Law and Order” as another example. Detective Ray Curtis, played by Benjamin Bratt, was leaving the show and his wife's MS was given as the excuse. “MS is not a fatal disease and to imply that it was was not worthy of an otherwise superior program,” she said.

Howard Zwibel, MD, Medical Director of Miami's Baptist Hospital MS Center, believes that the more exposure that shows such as “The West Wing” can give MS the better, as long as they remain responsible in their depiction of the disease.

Figure. MS patients ...
Figure. MS patients ...
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“In today's media-driven culture, it is a great boost for people with MS and the public to see that the disease does not prevent someone from performing a high level function in society,” he said.

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COGNITIVE PROBLEMS

There is some concern that a situation may arise where writers for “The West Wing” may stress the possibility of the Martin Sheen's character developing cognitive dysfunction, which can affect nearly half of the MS population to some degree.

“The Society would certainly advise the show researchers to avoid going down this path,” Ms. Rosenblat noted.“We would be concerned that it would only add to the misinterpretation and confusion over the nature of cognitive dysfunction in MS and hurt people who are employed or seeking employment.”

Dr. Zwibel agreed that it would be preferable to avoid this situation. “Should it occur, it would be up to clinicians to make it very clear that mild to moderate cognitive deficits can occur and obviously it would not be wise for the President of the United States to continue in his position. However, this does not mean that all people who develop cognitive problems need to give up their employment.”

Dr. Zwibel said it is important that people realize that the cognitive problems seen with MS are not like those experienced with Alzheimer disease, which are more global.

“In fact, I've often thought that we should try and come up with a term that gets more to the heart of the issue, which is often a more focal problem of processing information that may respond to treatment, either with medication or occupational therapy.”

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CELEBRITY IMPACT

When a real-life celebrity goes public, it can be a double-edged sword, Ms. Rosenblat said. On the one hand, it helps focus public attention on MS and can encourage people with the disease to become more actively involved in their treatment. On the other, people tend to slavishly take whatever the celebrity says as gospel, even when it may conflict with their doctor's advice.

According to Robert Lisak, MD, Professor of Neurology at Wayne State University School of Medicine, most patients who receive their care at specialist MS centers are not influenced by the recommendations of celebrities.

“These patients receive ongoing education about their disease and are generally very well-informed,” Dr. Lisak said, “However, some patients, particularly those that are seen in community-based practices, tend to think that if Montel Williams or another affected celebrity says it's so, it must be so. This can lead to conflicts between a patient and his or her physician, when the physician disagrees with whatever is being recommended as a sure-fire treatment for MS.”

Ms. Rosenblat agreed that this can sometimes be a problem. “Nevertheless,” she said, “we welcome the attention that celebrities such as Montel Williams and David Lander, best known as Squiggy on the old sitcom “Laverne and Shirley,” bring to the disease.

“With their help, we can focus public attention on issues which affect all people with MS. Chief among these, are the questions of whether or not they should disclose their diagnosis and when and to whom, as well as whether or not they should be treated with one of the available immunomodulatory agents.”

Ms. Rosenblat noted that Mr. Lander has said that until about seven years ago there was very little he could do to affect the underlying course of his disease. But since the introduction of immunomodulatory drugs that can help reduce the frequency and severity of relapses and slow disease progression, he has become an ambassador for the MS cause and work of the National MS Society.

“When people with MS ask him how he can bear to inject himself, he says he's just glad that there is something he can actually do on a regular basis to take control of his life and not let the disease control him. He has been an extremely positive influence on a large number of people with MS.”

Whether a person with MS is the President of the United States, an account executive in Manhattan, or a lineman in West Overshoe, they all have to confront the issue of living with the disease and its potential social consequences, Ms. Rosenblat concluded.

“Media depiction of MS, whether in a television show or through a celebrity, if handled responsibly and in consultation with experts, can prove invaluable in raising awareness of MS in the public eye. It lets people with MS see that having the disease does not automatically preclude them from playing an active and fulfilling role in society.”

©2001 American Academy of Neurology

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