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To Tell or Not to Tell? New Study Offers Insights into Tough Decisions About Disclosing Diagnosis of MS

December 22, 2022

In a new study involving 428 people with MS, about half do not disclose their MS diagnosis to other people and 40% believed that telling others may have negative consequences. More than two-thirds had not discussed the issue of disclosure with any of their healthcare providers. This study provides useful insights into the difficult decisions that people with MS face about disclosing their diagnosis.
  • Background: To tell or not to tell family, friends, and employers about an MS diagnosis is a deeply personal decision that can cause considerable stress. Researcher Victoria Leavitt, PhD (Columbia University) and colleagues developed a survey called “DISCO-MS” to explore how people with MS approach such “disclosure decisions.”
  • This Study: The researchers administered the DISCO-MS survey to 428 people enrolled in the iConquerMS registry. They also asked participants about their experiences during the diagnosis of MS.
  • Results: Nearly half of participants reported having concealed their diagnosis especially while they showed no outward signs of having MS. Almost 40% felt that telling people about their MS diagnosis would bring about negative consequences. More people feared negative consequences of disclosing to professional relationships, than to personal relationships. And, those who felt that they were given less time or information during the diagnosis of MS were more likely to conceal the diagnosis from others, and were more likely to anticipate negative consequences of disclosure.
  • Seventy-seven percent never discussed disclosure decisions with any of their healthcare providers. Those who had discussed these decisions with their MS healthcare providers were less likely to anticipate negative consequences of disclosure.
  • Meaning: Although further study is needed to fully understand these results, this study highlights how complicated decisions about disclosure are for people with MS and suggests that certain factors may have an impact on a person’s decision to tell others about their MS diagnosis. These factors include how much time and information they are given during diagnosis, whether they discuss the decision to disclose with their MS healthcare providers, and whether or not their MS is visible to others. Elevating awareness of this issue among MS providers is key to helping people with MS navigate this challenge.
Resources are available to make disclosure decisions less daunting. Diagnosis concealment is prevalent in MS, and associated with diagnosis experience” by Drs. V.M. Leavitt, A.M. Kever, S.M. Weinstein, R.T. Shinohara, H. Schmidt, S.M. Aoun, A. Solari, and A.J. Solomon is published in MS And Related Disorders (Vol. 68, 104373, December 01, 2022).

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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