Page 179

“You Have MS”

Numerous studies have conclusively documented that communication between health professionals and patients is often problematic.106,107 For people with lifelong conditions such as MS, initial contacts with health care professionals are especially important and can shape patients' attitudes about their disease and expectations about the role of clinicians. Sometimes problems result from general insensitivity, probably not specific to MS per se.

People with MS who write about their experiences invariably highlight the moment when they were first given their diagnosis. It is a pivotal, life-altering moment that remains vividly etched in their memories. Very often, these memories are filled with anger at the way the diagnosis was delivered. Sally Ann Jones, in her mid-fifties with MS, described how her doctor told her the diagnosis many years previously:84

The doctor spent about a minute and a half with me and then he said, “The bad news is, Mrs. Jones, you have MS. The good news is, when I saw you before, I wrote down three potential diagnoses in my notes. If you'd had either of the other two diagnoses, you would be dead by now.” Back then, he never mentioned that to me. I said, “Why didn't you tell me?” He said, “The symptoms of the other diagnoses would have been so bad, you would've had to return, and I didn't want to upset you unnecessarily.” And with that, he left. He didn't tell me what to do. He didn't say, “Do X.” He didn't say, “Come back in six weeks.” He just left. Period. He spent about 10 minutes, beginning to end. I was absolutely in shock.

Because the symptoms are so often insidious, vague, and nonspecific, there can be a long period during which the patient knows something is seriously wrong but is unable to receive definitive answers. The uncertainty is highly stressful, and patients later often resent the long period of concerned waiting or the attitude of a physician who felt it was kinder to offer vague explanations when she or he was strongly suspicious the problem was MS.130 In 1995, Murray wrote, “I have never heard a patient express gratitude for being kept ignorant of his or her diagnosis, but I have heard many express anger and disappointment for being kept in the dark.... While patients are in the dark about their diagnosis, they are unwell without legitimacy, expected to function normally without the physician-sanctioned ‘sick role,' and often under the suspicion of family, friends, employers, and even themselves, of being hypochondriac or malingerers.”139

One study identified four major themes of the experience of being diagnosed with MS: whispered beginnings (earliest signs and symptoms, understood only in retrospect); echoes of silence (worrying, wondering, and waiting, reinforced by relapsing and remitting patterns); hearing the words spoken and beginning to tell others; and refocusing their lives.100 During the period of whispered beginnings, people often tried to minimize what they were experiencing, attributing it to stress. During the echoes-of-silence period, patients frequently felt anxious,

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement