In a year full of social distancing, here come the 2020 ho-hum, glum holidays. But it doesn’t have to be that way, say experts who shared advice for the rare disease community in a recent webinar sponsored by the National Organization for Rare Disorders (NORD). Here are four ways to find some sparkle, or at least a spark.
1. Plan your way through, said Tamara Minsk, a licensed therapist and rare disease patient. Minsk lives in Oklahoma and this year she wishes she could be with relatives in Colorado, who she hasn’t seen for almost a year. Instead, Minsk is using coping skills she developed when her son spent Christmas with his father. If you’re going solo, think about how you’ll spend those hours.
“If I know I am going to be alone, I plan an activity,” she said. Minsk likes to fish and remembers going fishing one Christmas. Another time, she made little gift bags and distributed them like a Secret Santa to store employees stuck working on the holiday.
2. Change up your routine to get yourself out of a funk, says Albert Freedman, a Philadelphia-area psychologist.
“Go outside. Listen to music. Call a friend on the phone. In other words, do something different than what you are doing when you feel in a funk. Do something that brings you comfort, something that makes you feel good,” he said.
Freedman recently took the time to make a few special phone calls. He reached out to the people who help him care for his 25-year-old son Jack, who has spinal muscular atrophy.
“The guy who repairs his wheelchair, the nurse, the home health aide,” he said. “I want them to know I am grateful and am wishing them happy holidays.”
3. Look out for the kids. You might be feeling sad or frustrated, but if you make the effort to remain calm, your children will reap the benefits. The more calm parents remain, the more calm children feel, Minsk said. Find ways kids can safely connect with their friends. Listen to their concerns. Be hopeful about the future.
“Model a hopeful attitude. If you are negative, the kids will feel negative, too,” she said.
4. Don’t let lax family members get you down, Freedman said. Some patients need to be very conservative about the level of risk they take because of COVID-19. But family and friends might not want to change the way they operate.
“Some of our family members might not feel the same way we do about avoiding risk. We need to educate them about the dangers of in-person gatherings, without passing judgment on their decisions,” he said.
Remind yourself that not getting together this year is a healthy choice. Think about 2021, which will hopefully be a better year.
