Need resilience? Insight from patients dealing with MS

The co-director of UW Medicine's Multiple Sclerosis Rehabilitation & Wellness Research Center shares lessons from patients who live with uncertainty.

A survey was sent to people with multiple sclerosis asking how they were doing in the pandemic. Were they distressed? Many patients with MS are on medications that affect their immunity. And risk factors for COVID-19 are also more common in people with MS.

The survey was sent out in April and May and received 500 responses from self-reported MS patients in 40 states.  Half were from Washington state.

The results published online in November in the journal Multiple Sclerosis and Related Disorders showed that MS patients were not substantially more distressed than usual.  This is not all too surprising since stress runs high in the MS population. People with MS live with a chronic progressive condition that presents differently for each person. They never know when symptoms -- including numbness, impaired mobility, vertigo, blurry vision, fatigue, pain, tremor, speech impairments, urinary incontinence, and muscle spasticity -- will appear or how, and how severe. It’s a constant state of uncertainty.

Lead author Kevin Alschuler, associate professor of rehabilitation medicine at the University of Washington School of Medicine and co-director of the UW Medicine Multiple Sclerosis Rehabilitation & Wellness Research Center,  said one quarter of those surveyed were already at the clinical cutoff for depression and one third for anxiety.

Coping skills key

The study found that the strongest predictor of distress was not the severity of a respondent’s MS, it was what coping skills they were using. Were they practicing mindfulness? Were they tolerant of uncertainty? Were they optimistic? Did they have social connections?

“The consistent message we see is that those who are most resilient are those who use helpful coping strategies to manage the situation they face, regardless of how difficult the situation is,” said Alschuler.

Alschuler wanted to share lessons learned on resilience from the MS community, so he gave a presentation to residents in rehabilitation medicine – and the requests have kept coming:  from the UW, the American Academy of Physical Medicine and Rehabilitation (physicians and residents) and the National MS Society.

Top tips

We asked him for his top tips on resilience, and here is what he had to say:

When faced with a challenge to our well-being, we often have a fight or flight response across the physiological, cognitive, behavioral, and social areas. The heart rate goes up (physiological), thoughts narrow (cognitive), efforts are made to mitigate the threat (behavioral), and people either gather with others to reduce the threat or withdraw (social). While this can be a useful response in life-or-death situations, it is not healthy to live in that state all the time.

In the face of our current challenges from the pandemic, we need to learn ways to be less threat focused and instead do things that make our lives better. Do things to counteract the stress and calm the mind: things like meditation, relaxation, yoga. Focus on other things within your control, like exercise or reaching out to people who care about you.

“If we learn strategies like mindfulness meditation or other cognitive exercises, we help ourselves redirect our energy,” he said. “Go for a walk and get fresh air. Don’t watch news for hours. Engage with other people. Work back against the threat-based response.  Help yourself be resilient so the challenge affects you less and doesn’t dominate your life.”

While he recognizes that MS is an unwelcome visitor in his patients’ lives, he also sees an opportunity to lessen its impact. As he tells his patients, “Let’s make MS less bad for you.”

Other team members on the study include Dawn Ehde, professor of rehabilitation medicine, Tracy Herring, postdoctoral scholar, and Michelle Roberts, research coordinator.

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Tags:multiple sclerosis

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