Words of Encouragement for Rare Disease Patients

All-too-familiar with health worries and isolation, they’re uniquely equipped to cope with the current crisis, psychologist says.

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Rare disease patients and their caregivers have earned badges of honor through the years as they deal with the stress and uncertainty of having illnesses that aren’t well understood.

Today that hard-won experience puts them ahead of the curve in coping with the COVID-19 pandemic, experts said during a recent webinar presented by the National Organization for Rare Disorders. Following guidelines like social distancing and staying home are not new concepts to many who live with rare and chronic illnesses.

“We have a lot of practice and experience with unexpected change. We have experience living with uncertainty, for months, for years, even decades,” said Albert Freedman, Ph.D., a Philadelphia-area psychologist. “And, unfortunately, we have experience with isolation. We might not have been able to do things that other families do.”

Freedman speaks from his own experience. He’s dad to a son who has the genetic disorder spinal muscular atrophy. Still, no matter how much adversity one has encountered, the COVID-19 pandemic is taking a toll on emotional health. How can you face a situation that can feel overwhelming? Take charge of what you can control.

“Our feelings are like rooms in a house. We have the power to move in and out of rooms in our house,” Freedman said. “You’ve dealt with things like this before. Stop, think and plan.

He offered these seven suggestions for coping well:

  1. Get enough sleep.

     

  2. Plan your day. Make a list of things you want to do and can do. Make a schedule and follow it. Be conscious and intentional.

     

  3. Limit exposure to the news, especially before bedtime. Instead, watch movies or read good books.

     

  4. Connect with family and friends via video chat.

     

  5. Open the windows to let sun and fresh air into your home.

     

  6. Exercise as much as you’re able to, inside and outside.

     

  7. Try to keep a positive frame of mind and try meditation apps, such as Calm, Headspace, and Sanvello. If more help is needed, seek out counseling. Many centers are offering services online.

A crisis, however unwelcome, can be an opportunity to develop personal strength, Freedman said. The rare disease community can serve as an example of strength and perseverance.

“A positive attitude is contagious,” he said. “Being grateful for every single day is contagious.”