Coping with Uncertainty When You Have Multiple Sclerosis

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Multiple sclerosis (MS) is the most common disabling neurological disease in young adults. Most develop a pattern of on-again, off-again symptoms, but some have consistently mild symptoms and others have steadily worsening disability.

Early on, there’s no way to predict how an individual’s disease will play out, and that uncertainty about the future is one of the most challenging aspects of MS.

A study slated for the August issue of Rehabilitation Psychology reports on a new counseling intervention that’s specifically designed to help people with early MS become more comfortable with uncertainty.

The study was led by Ivan Molton, Ph.D., and Kevin Alschuler, Ph.D., both associate professors of psychology and rehabilitation medicine at the University of Washington. As a pilot test of the intervention, it included 48 MS patients diagnosed within the past three years. A larger study, funded by the National Multiple Sclerosis Society, is now underway.

Lifting the curtain on uncertainty

People who have recently been diagnosed with MS are often in their twenties, thirties, or forties. They’re dealing with major life events, such as starting and raising a family, establishing a career, and buying a house. In the midst of this, they're also living with a disease that has an unpredictable course.

“Uncertainty is one of the hardest parts of any progressive and unpredictable disease,” Molton told me in a recent interview. “Again and again, we hear from our patients that the symptoms themselves may be manageable, but not knowing what the future holds makes it impossible to plan one’s life, work, and important activities. Uncertainty therefore becomes the ‘elephant in the room’; it’s there and no one is talking about it. We believe that labeling this issue openly and learning to cope with it is essential for health and well-being.”

No one likes the unpredictability of MS, but some people find it particularly hard to accept. In psychology-speak, these individuals show a high intolerance of uncertainty. They tend to react to their distress over uncertainty in one of two ways:

• Avoidance, or trying to pretend the issue isn’t there. “For example, in the case of MS, avoidance might mean skipping doctor’s appointments or not using disease-modifying medications,” said Molton. The result could be more frequent flareups, more severe symptoms, and faster disease progression in the long run.
• Overcontrol, or trying to create the illusion of control over the uncontrollable. “Someone using overcontrol strategies spends a great deal of time researching every possible disease trajectory or outcome they could have, or ruminating on every possible worst-case outcome,” Molton said. “They put a great deal of effort into trying to predict the future, which becomes exhausting and may lead to burnout.”

These strategies can seriously hamper a person’s ability to live well with MS. They may lead to constant worrying or ruminating, potentially setting the stage for an anxiety disorder or depression.

Learning to live with the unknown

Several previous studies of cognitive-behavioral therapy (CBT), mindfulness, and other mental health approaches had shown that they improved people’s ability to cope with uncertainty. In those studies, however, increased tolerance for uncertainty was a nice bonus, not the main focus. In the new intervention, it’s the primary goal of every counseling session.

The MS patients in the new study were randomly assigned to either receive the intervention or not, in addition to getting their usual medical care. The six-session intervention employed techniques from established approaches — mainly acceptance and commitment therapy (ACT) with a dash of CBT. However, the techniques were adapted specifically to the needs of people with early-stage MS. The goal was to help people:

• Become more aware of their own ability to tolerate uncertainty, both in general and in relationship to MS. “Most people had never really thought about this aspect of their personalities before, and they found this quite interesting,” Molton said.
• Become more aware of when they were engaging in avoidance or overcontrol. “We really focused on helping people give up the struggle to resolve the unpredictable parts of the disease,” said Molton. “Instead, we encouraged them to learn to coexist with the uncertainty without it distracting from their ability to live their best life.”
• Learn basic anxiety management skills, such as mindfulness. These skills further helped people cope with anxiety caused by having an unpredictable disease.

“Because this was a pilot study, we could only report preliminary results,” Molton said. “But we did find that, compared to a no-intervention control group, participants were better at tolerating uncertainty and accepting their MS diagnosis after six sessions of our intervention.”

The next step is to find out whether the new intervention is better than traditional CBT at easing distress caused by uncertainty. The larger study that recently began is designed to answer that question.

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However, because it’s a four-year trial, results will not be available for some time. In the meantime, many conventional ACT, CBT, and mindfulness strategies may be helpful for dealing with the unpredictability of MS.