Page 180

lonely, and worried, sometimes trying various remedies (for example, multivitamins, stopping smoking, drinking lots of water, exercising). Finally, the actual moment of being told, “You have MS,” was readily recalled by the participants. They described trauma-filled reactions such as “being in shock, feeling numb, and really stunned” when they heard the news. For some, the crisis of this response lasted for moments; for others, it lasted days to weeks. The experience of being told the diagnosis of MS brought the study participants to a time of being “emotionally wounded.”100

These experiences emphasize not only the value of better diagnostic tools discussed in Chapter 2, but also the need for a better understanding of communicating with patients in the face of uncertainty at the initial stages of diagnosis and—once the diagnosis is confirmed—in the face of delivering devastating information.

Yet the issues surrounding diagnosis are changing. Patients today spend less time waiting for a diagnosis than they used to, largely due to improved magnetic resonance imaging (MRI) technology and its earlier, more frequent use. Once they receive their MRI results, however, they are faced with uncertainties and decisions that previous patients were not. One is the problem of interpreting abnormal MRI scans. Although the scans might confirm a diagnosis of MS, they still provide little information about the prognosis for impairment or disability. Another is the decision whether to start any of the disease-modifying therapies. Patients must weigh the immediate disadvantages of being yoked to a regular medication schedule with possible side effects that diminish their quality-of-life against the potentially great, but nonetheless uncertain, future benefit. In essence, it is impossible for a patient to make a fully informed decision. Patients can only guess, but the burden of decision rests with them. Therapies appear to be most effective if they are begun early in the disease—at a time when many patients might be most reluctant to assume the burden of treatment.

Disease-modifying therapies for MS were first approved in 1993 but have been widely used only in the last few years. In sum, much of the literature on the psychological aspects of living with MS, almost all of which predates the wide use of disease-modifying therapies, must be reconsidered in light of current options, which are themselves in flux. This does not, however, alter the fact that people with MS must adapt and readapt throughout their lives to MS.

Psychosocial Adaptation

MS generally starts just as people are beginning their independent lives, families, and careers. Many will live with the disease across the full spectrum of their adult lives. Repeatedly over time, they adjust, with varying success, to its myriad disabling consequences. MS is a disease that teases with its unpredictably waxing and waning course—debilitating people one month, restoring function the next. Sometimes losses are insidious, gradually mounting and only dimly



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