You can have a vibrant social life with MS, even though it may be harder to get out and about.
In fact, it’s good for you. “Staying active and engaging with others is essential to maintaining function and a positive outlook on life,” says Helen Genova, PhD, assistant director of the Center for Neuropsychology and Neuroscience Research at the Kessler Foundation.
Use these strategies for having an active, rewarding social life.
First, prioritize. You can’t do everything, so decide which activities are most important to you. Say yes to those, and skip the others.
Next, plan ahead.
Shore Up Your Energy
Get extra rest the day before a social event, suggests Brooke Slick, who’s 55, has MS, and lives in New Enterprise, PA. “It's all about energy allotment,” she says. “I make sure I've had plenty of rest so I don't start getting tired and sloppy by day's end.”
Jennifer TenEyck, from Delaware, OH, uses a similar strategy. “I press reset the day before. I also take my shower the night before so I have all of my energy to devote to the activity,” she says.
To limit fatigue, says Barbara Giesser, MD, a fellow of the American Academy of Neurology, plan activities when your energy levels are highest. Go out for small chunks of time. Use assistive devices to save energy. Stay cool and hydrated. Medication and regular exercise may also help.
Boost Your Mobility
When you go out, use a walker, wheelchair, or scooter. Mobility aids help you get where you want to go, save energy, and prevent falls.
Car adaptations that help you drive can make it easier to get out and about. A service dog can help by guiding you safely and supporting your balance.
Know before you go, says Slick. Visit the website of the place you’re going. Find out where it is, if there’s nearby parking, and if there’s an elevator or stairs.
Plan ahead for heat sensitivity. “How you dress matters,” says Jacqueline Nicholas, MD, a neuroimmunologist at the OhioHealth Neuroscience Center in Columbus. Wear layers so you can peel them off when you’re warm and put them on when you’re cold.
Diane V. Capaldi, who’s 56, has MS, and lives in Escondido, CA, avoids humidity and tries to stay indoors whenever she can. “I use a cold neck scarf when I’m going to be outside in dry heat above 80 degrees,” she says.
Stay cool by sipping a cold drink like ice water or sucking on an ice cube or frozen pineapple chunks. Bring a handheld fan or cooling spray. Wear a cooling hat, scarf, tie, or wristband.
Prep for Bladder Issues
If MS affects your bladder, it may help to limit how much you drink before you go out.
Bring protection like absorbent pads. Wear clothes that are easy to remove, like pants with an elastic waistband. Bring a backpack with pads, wipes, paper towels, and a change of clothes.
“I always make a bathroom stop before I go out and check where the restrooms are,” Slick says.
Friends and family don’t always know what it takes for you to go out and be social. Help them understand what works for you and what’s not so easy.
“Don’t be afraid to tell people you have MS,” says Sidney Sterling, a 22-year-old account executive in Miami. “Instead of turning down events and get-togethers, I let people know in advance that I’ll do my best to make it and have a good time, but if I have a flare-up, my health comes first.”
When she’s out and doesn’t feel well, she’ll say, "I’m having a bad MS day. Do you mind if we go back to my house or yours and just hang out and watch a movie?”
Be Social at Home
“Look for alternative ways to be social,” says Vickie Hadge, who was diagnosed with MS in 2017. “I’ve found many online groups that are wonderful, including Facebook groups and YouTube channels.”
When she had little use of her hands, Capaldi started a blog and social media page about living with MS by using her voice to activate the computer. Sharing her story led to a stronger sense of community and connection.
Get Involved With the MS Community
“Try partnering with others facing similar challenges,” Genova says. Join a support group, group class, or research study, where you’ll meet people in the same situation.
“I love Meetups,” Capaldi says. “I’ve been a member of a Los Angeles autoimmune Meetup for more than 5 years.” The group rotates potluck gatherings at each other’s homes. They understand each other’s limits and are happy to help, like offering transportation when someone has mobility issues.