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Johns Hopkins

Johns Hopkins Pediatric

A Confrontation with Uncertainty in Multiple Sclerosis

December 2, 2015

Alyssa Parian, MD

“Because uncertainty is an inevitable part of the MS experience, being able to cope with such concerns is central to the psychological well-being of MS patients.”

- Meghan Beier

When coping with chronic medical conditions, patients wonder, “What is going to happen next?” and “When exactly will it happen?” Meghan Beier, a neuropsychologist who specializes in multiple sclerosis (MS), finds that patients often present as depressed or anxious because of the uncertainty of living with MS, a disease hallmarked by ambiguity.

“They never know if there is going to be an exacerbation, how severe the symptoms will be or how fast the symptoms will progress,” Beier says. “Data show that 85 percent of people with MS have periods of stable health followed by an episode of worsened symptoms that may or may not fully remit.”

In a 2015 paper, Beier examined the concept of intolerance of uncertainty, or IU, and how it relates to MS. IU is the idea that individuals who have difficulty tolerating the possibility of a future negative health occurrence also have worse psychological outcomes.

In a review of the literature on IU, Beier found that people with medical conditions, such as cancer, and who scored high on the continuum of the Intolerance of Uncertainty Scale, had more worries about their health, higher health anxiety and increased threat perception.

“Because uncertainty is an inevitable part of the MS experience,” says Beier, “being able to cope with such concerns is central to the psychological well-being of MS patients.”

To help develop tolerance for living with MS, Beier practices acceptance and commitment cognitive therapy. The intervention focuses on mindfulness, and acceptance and commitment to living a life focused on what is important and meaningful—as opposed to living a life based on avoiding or being stuck on challenges.

“We identify what is most valuable to that person and then uncover a way to obtain that value, despite their MS symptoms,” says Beier.

Beier says research supports this kind of therapy as an effective treatment in MS because it improves an individual’s ability to cope with undesirable thoughts and feelings, and acceptance has been shown to correlate with better adjustment to life with MS.

When one of her patients could no longer do what she loved—riding horses—Beier guided her to explore new activities that provided the same satisfaction. Instead of riding horses, the patient started teaching young people how to ride. “She still used her skills and experience, but participated in a new way,” says Beier.

For another patient, an anxious doctoral student who told Beier she wanted to quit her program because she may not be able to work in a few years, Beier focused the patient on the reason she was attending the program in the first place. The patient started looking at what she was achieving every day—not what she may or may not achieve in the future.

Because so many aspects of a patient’s life can be affected by living with MS, the multidisciplinary team approach at The Johns Hopkins Hospital allows treatment from many different angles. Beier coordinates with psychiatrists, neurologists and physiatrists, as well as physical, speech and occupational therapists, on a regular basis to provide comprehensive care for patients with MS. 

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