FOMO — fear of missing out — can hit some people with MS particularly hard. The symptoms of the disease, such as fatigue and mobility issues, may limit your ability to participate in certain activities. And even if you can attend an event, you may not be able to stay as long as you’d like. “The fact is, with MS, you will have to miss some things,” says Lyndsay Wright, 31, who lives in New Jersey and has MS. “Some of those things include quality time with your besties or having to sit out a workout because you just can’t. My worst fear is letting my MS dictate what I can and cannot do.” Others share that fear. Here are some of their best suggestions for ways to cope. Explain to your friends ahead of time that your MS symptoms can unexpectedly flare up and interfere with your ability to meet with them. They might be disappointed, but this will help them understand if you suddenly can’t attend. “The best way I’ve [dealt with] my friends and family averting me when making plans is by being 100 percent honest,” she says. “If I suddenly can’t make it, I will tell the person, ‘I’m just not quite feeling myself today,’ or, ‘I’m experiencing a bout of pain and fatigue and I won’t be able to make it.’ Being honest is always the best way; trying to hide what’s wrong can hurt more than it helps.” 2. Schedule plans for when you tend to feel your best. If you’re a morning person, ask friends to meet you for brunch, or schedule other activities for earlier in the day. Same goes if you start strong on Mondays but tend to wind down by Thursday or Friday. Make plans for when you’re more likely to feel up to it. “The fear of missing out … is real!” says Sylvia Longmire, 44, who has MS and posted this tip in Tippi MS: “Schedule activities for the coolest times of the day and during times you know you’ll have the most energy.” 4. Check for accessibility. A little planning can go a long way and save you from worrying the day of your plans. Call ahead to make sure the venue you’re visiting has accessible accommodations: drop-off areas, transportation, elevators, seating, and wheelchair access if you need it. 5. Don’t overdo it. Sure, it’s tempting to push yourself to keep up with friends who don’t have a chronic disease. But odds are, you’ll pay for it later. “Often, I will suck it up just to avoid FOMO, but then the next day [it] rears its ugly head,” says Wright. “Then I sit there going, Why didn’t I just listen to my body?!” Similarly, if you have big plans coming up that you’re particularly excited about, try to take it easy leading up to that day. 6. Have a contingency plan. Whether your plans fall through due to an unanticipated flare, a poor reaction to medication, or just a bad day, it helps to have a plan B, says Kathy Costello, CRNP, vice president of programs at Can Do Multiple Sclerosis in Avon, Colorado. That may mean rescheduling or relocating the event to a place that’s more accessible for you. 7. Join in digitally. If you don’t feel well enough to participate, ask your friends to FaceTime or set up a Zoom call so you can still join in. Or, ask them to send you pictures after the event is over. People may worry that you’ll feel more left out by seeing the fun you’re missing out on, but if you reassure them that’s not the case — or even ask them for funny pics or Snapchats while they’re out — they’ll likely oblige, says Weston. 8. Turn FOMO into JOMO. When MS symptoms force you to stay back, distracting yourself with things you love can be an effective way to find some JOMO (joy of missing out). “Find a way to make the not-so-good days better,” says Trevis Gleason, 52, who has MS and posted this tip in Tippi MS: “Watch a film you love, eat a comforting meal you’ve stored away in the freezer, find a friend to call on the phone. Every little bit helps.” Weston takes a similar approach. “In the times I’ve been left behind and I’m feeling sad, I’ll focus my attention on something else I love doing that’s conducive to how I feel that day,” she says. “I’ll visit the gym and sweat out my feelings, or I’ll pick up the book I’m reading and get absolutely lost in the pages and forget. I’ll journal out how sad I am and set intentions to talk about it with my loved ones later.” 9. Connect with new friends online. While you may not always be able to swing an in-person meetup, you can join Facebook groups and other online organizations to feel included, says Costello. Many people with MS have found friends this way, as well as advice on how to handle the social burdens of the disease. Says Tippi MS contributor theebrookedavis, 34, “Finding and communicating with other people who have MS will provide you with a support group of people who can better understand your daily issues. Other MSers can also help with ideas for life hacks that can make your life slightly easier. They also offer friendship and support.” 10. Talk to your healthcare provider. Even if you think your symptoms are minor or can’t be helped, bring them up to your doctor, says Costello. Often, adjusting your management plan or trying medication can reduce symptoms and help you get back to the activities you enjoy. “The face of MS is changing due to earlier intervention,” she says. Don’t neglect your mental health either. Feelings of sadness, hopelessness, guilt, or depression are not uncommon in people with MS but are treatable, Costello says. If you experience these feelings, don’t dismiss them as normal or put off a conversation with your healthcare provider. 11. Bring the gathering to you. When you educate the people around you about the realities of your disease, they’ll likely be more understanding and willing to accommodate you, even if that means staying in and watching Netflix. “If it’s a plan with your besties, and they can bring the social gathering to you, I am sure they would be more than understanding and willing to do that, because they understand to some extent what you’re going through and want to still hang with you and be supportive,” says Wright. “I’ve learned I need to be true and honest, especially to those who just want the best for me in my fight with MS. Life is short, but if your tribe is strong, they will understand and be there for a night in PJs! No FOMO there, just quality bestie time!”
