“Living alone, holding your first job, dating...these are all challenging issues for anyone in their 20s, let alone someone with multiple sclerosis,” says Traci Paxton, M.S.W., a social worker at OhioHealth in Columbus, OH, who regularly counsels young adults with MS.
With more effective treatments than ever to help manage symptoms and keep flares to a minimum, most 20-somethings with MS live independently, work full time, drive, and stay active in sports just like their friends.
The difference? MS is always there, threatening to get in the way. But with a little planning, you can stay ahead of your symptoms and focus on what matters most: living life on your terms. Get a head start with these pro tips and strategies:
Look for a job with flexibility. When 22-year-old Miami public-relations executive Sidney Sterling was job searching her senior year of college, she looked for—and found—a company with a flexible work policy. “They’ve very open to employees working from home, which is what I need on those days that I wake up and find that I’m exhausted and my muscles just ache,” she says. “This way, I can pretty much guarantee that my MS won’t impede on my performance.”
Sterling also liked the fact that her company had “green” conference rooms filled with plants. “If I’m feeling stressed or having a bad MS moment, I can work in one and start to relax,” she explains. (Research shows that the greener a worker’s office space, the fewer sick days they take, the fewer health symptoms they show, and the greater their productivity, according to a 2017 review published in the journal American Society for Horticultural Science.
Get your financial house in order. Even if you feel fine now, at some point in your career you may experience a flare that requires you to take time off from work. Some employers offer sick leave, but that’s only about five to 10 days a year.
If your company has at least 50 employees, they’re required to offer 12 weeks of unpaid leave a year through the Family and Medical Leave Act of 1993. Your employer will have to hold your job for you and keep providing health insurance, according to the National Multiple Sclerosis Society.
Some states offer additional protections beyond FMLA; check out this U.S. Department of Labor list for info. If you have disability insurance through your job, it may also kick in during this time and will usually pay anywhere from 40% to 60% of your current wages.
Keep in mind that it’s highly unlikely that you’ll be able to purchase private disability insurance. It’s a good idea to begin meeting with a financial planner in your early 20s, so you can start building a nest egg.
Be strategic about how much you disclose. Sterling only told her employer that she had MS after she was accepted and had started her job. Legally, if you can do your job without any accommodations, you don’t have to disclose your MS during the interview process, or at any point after, points out Paxton. The Americans with Disabilities Act protects your workplace rights in many ways.
But if you will need some accommodations—such as the ability to work from home when you have flares, or the need for a private office so you can lower the temperature due to heat sensitivity—then you’ll need to let your employer know that you have a medical condition. It’s best to tell them that you have MS. Although you’re not required to under the Americans with Disabilities Act, you’re more likely to get the assistance and support you need, points out Sterling.
Look for accessible digs. You may be so excited about your first set of keys that you don't stop and think about how accessible your pad is. If your MS is well controlled, and you don’t have symptoms, then you don’t need to make any adjustments to your new home, stresses Paxton. But if you do have challenges such as problems with balance or dropping things, you’ll want to make some tweaks.
And remember that legally, your landlord has to make “reasonable” accommodations under the Americans with Disabilities Act. We've got some ideas for making your aparment accessible, and your local MS Society chapter or your MS clinic can also work with you. Some things to consider:
Look for buildings with portable ramps or elevators so you don’t have to deal with stairs.
Trouble holding keys? Look for a building—or ask the landlord about installing—a keyless entry lock.
If turning a doorknob is challenging, consider replacing them with lever-style handles, which are easier to turn.
Be sure there are quality grab bars on stairs and in the bathroom. This can make a big difference in preventing falls.
Or get a place with roommates. Lots of 20-somethings live with roommates because it’s a) fun and b) more affordable. When you have MS, having that companionship can be important in other ways, says Paxton. You have someone to walk or feed the dog, for example, if you’re wiped, or someone to open that jar of pasta or bottle of wine if your hand grip isn’t having a great day.
Make little tweaks to save energy. Fatigue is a common symptom of MS, so after a full day of work you may just want to collapse on the couch and put your feet up. Unfortunately, you also have to do regular day-to-day activities, you know, like make yourself something to eat.
The Multiple Sclerosis Association of America recommends sitting on a barstool or a sit-stand work stool while you’re doing meal prep. If you get too hot in the kitchen (temperature sensitivity’s a major problem for people with MS), a cooling vest can help as can relying on your toaster oven and microwave more than your regular oven.
Finally, keep everything at eye level, so you don’t have to expend energy reaching up or down.
Invest in some good apps. Memory problems are common among people with MS, but you can help compensate thanks to modern technology. Sterling, for example, swears by EatWise. “I use it every day to remind myself to eat, since my MS makes me really forgetful,” she explains. “This helps me eat something every two to three hours to keep my blood sugar up.”
But apps can do more than just organize your life—they can provide motivation and support. When you’re first living on your own, you don’t have your parents around to remind you to take your meds, or give you emotional support when you’re feeling crummy.
Sterling has Motivation Quotes—Daily Quote set to be the first thing she looks at when she wakes up in the morning. “Sometimes, I wake up and within seconds I can tell if it’s a bad MS day because of symptoms like weak muscles and fatigue,” she explains. “These quotes help me keep my perspective and boost my mood.”
Other apps that are on the top of Sterling’s list: White Noise Deep Sleep Sounds, which helps distract her from aching muscles so she can drift off into sleep, and MS Buddy, where she connect with other MS-ers for support and advice.
Put yourself first. When you’re young and single and first living on your own, it can be tempting to work and play hard. But not getting enough ZZZs leads to fatigue, the most common and debilitating symptom of MS. You need to make yourself a priority. “Since I started working in my 20s, I’ve made it clear to employers that I can’t do a 60-hour work week, ever,” says Valerie Fiordilino Maslow, 34, a physician assistant in Palm Beach Gardens, FL.
Since stress can also trigger her MS flares, she makes sure she spends plenty of time pampering herself. “I get monthly pedicures and massages, and make sure I have time to exercise most days of the week,” she says. “It’s not a luxury—it’s essential so that I can keep my MS symptoms at bay.”
Be straight with friends. If you’ve got MS, making—and maintaining—friendships can sometimes be challenging, especially since some symptoms, like pain and fatigue, are invisible. “People always look at me in surprise and say, ‘Well, you don’t look sick,’ when I tell them that I have MS,” says 23-year old Savannah Karako, who is getting a graduate degree in applied behavior therapy (ABA) in Painesville, OH.
If you don't actually look ill, friends may not understand why you never go out during the week after work, or why you sometimes forget to call them back, or even why you don’t want to get out of bed on the weekend. One good idea is to make friends with others your age who have MS, in person or online, advises Paxton. They can become a crucial part of your support system.
For friends or co-workers who don’t have MS, encourage them to attend an MS function with you, so they can learn more about the disease and better understand your symptoms.
Date with confidence. Many people with MS are afraid to tell a potential romantic interest that they have the condition, but it’s a good idea to let the person know fairly early on. “I waited a few dates, until I was sure that he was someone I wanted to be with,” says Maslow, recalling how she broke the news to her now-husband. “It was a nerve-racking conversation, and after I told him I took a deep breath and said, ‘Hey, do you still want to be with me?’”
She’ll never forget what happened next. “He looked at me like I was crazy and said, ‘I’m here, and I’ll always support you. Just let me know what you need,’” she says. “That’s when I knew he was the one.”