Earlier this year, the National Multiple Sclerosis Society reported that the number of Americans living with multiple sclerosis (MS) was close to one million, nearly double what was previously thought.
“Very often people are being diagnosed in young adulthood and will have to live with this unpredictable disease for the rest of their lives,” says Kathy Costello, MS, CRNP, MSCN, a nurse practitioner and the associate vice president of Healthcare Access for the National MS Society.
That means more and more millennials, those born between 1981 and 1996, are facing the diagnosis — and the challenge of managing MS.
While MS symptoms vary from person to person, some parts of life with the illness are universal for those living with the condition — the need to maintain a sense of humor, for one. Here are 12 things these millennials can relate to when it comes to living with MS.
1. You nap more than most people check their phone.
The number one symptom of MS is fatigue, says Costello. It affects 90–91 percent of people with MS, but it’s hard for outsiders to understand. Fatigue isn’t simply being tired, says Morgan Smith, 29, who has been living with MS since 2017. “I work 15 minutes from my house,” Smith says, “and at least once a week I pull over and take a nap on the drive home.”
2. And still wake up tired.
All the napping doesn’t mean you feel well rested, either. “Sometimes I wake up more exhausted then when I fell asleep 10 hours before,” says Eliz Martin, 32, an MS blogger who has been living with the condition for 6 years.
What Can People With MS Teach Us?
3. You can’t let FOMO get in the way of saying “no.”
“I usually can’t schedule doctor’s appointments and social events in the same week without consequences,” says Kellen Prouse, 34, who was diagnosed in 2010. Between attending medical visits and experiencing symptoms like pain and fatigue, making time to hang out with friends can be really difficult, and your relationships can suffer as a result. “It’s hard to go from being a pretty social person to feeling like an outcast,” he says. “I used to feel guilty about [canceling plans or turning down invites],” adds Smith, “but I have to be okay with it even if friends are not.” It helps to surround yourself with friends who put forth an effort to make it easier for you to hang out, and understand when you have to cancel.
4. You never take bowel control for granted.
Many people who have MS experience occasional incontinence, says Costello. That can add to social isolation because canceling plans seems easier than risking soiling themselves in public.?Prouse?knows this fear too well. He’s numb from his mid-torso down to his toes. “I can’t tell when I need to go to the bathroom until it’s just about too late,” he says. “Like many people with MS, bowel and bladder problems are always on my mind ... because if they aren’t on my mind, they may end up in my pants.”
5. Your sobriety is often questioned.
“Sometimes you might look so clumsy, others will think you’re drunk,” says Martin. Lack of coordination and slurred speech are common MS symptoms, and fatigue certainly doesn’t help. Smith also describes the feeling of waking up from a nap “like being hungover.”
6. You talk about your illness so much, you named it.
Smith and her husband, Nick, call her MS Becky (she swears this was before Beyoncé’s Lemonade) to make it easier to talk about. Nick asks her, “How’s Becky doing today?” And, if Smith is having a rough day, she might tell him, “Becky tripped me.” It can make dealing with some symptoms easier if you imagine that the disease is a separate entity rather than your own body failing you.
7. You never get tired of hearing those three little words: “No new lesions!”
“Going to the doctor is a scary thing, says Lyndsay Wright, 29, who was diagnosed at age 18. But if you get good news, like no new or active lesions, “it’s also probably one of the most rewarding things.”
8. You constantly feel as if you have to prove that you’re sick.
MS is called an invisible illness for a reason — many of its symptoms, like pain and fatigue, can’t be seen by others. Even well-meaning loved ones, seeing how exhausted you are all the time, might offer unwarranted advice like, “If you exercise more, you’d feel better.” This can cause friction, says Costello. People who have MS know how to take care of themselves; sometimes they’re just at the whim of the disease.
9. Taking a shower can feel like Olympic medal-worthy event.
“The more my MS progresses, the harder it is to do much of anything,” says Prouse. “Just accomplishing daily tasks is a full time job.” It’s easy for people without MS to forget that you might be experiencing constant pain and fighting fatigue, and not understand why it’s so tough to do things they take for granted.
10. “You look good” isn’t always a compliment.
“Sometimes people say, ‘But you look so good,’ as if you can’t look cute and be sick at the same time,” says Martin. People may think they’re paying you a compliment, but it can be frustrating to hear about how healthy you appear when you feel so lousy.
11. You get excited when you see a wheelchair accessible sign.
Prouse lost the use of his legs, so he uses a wheelchair 75 percent of the time, and a cane to steady himself when he isn’t in the chair. His wife, Meghann, says, “Kellen and I didn’t realize how many things look accessible but really aren’t until his MS progressed to the point of requiring a wheelchair. We’ve learned the hard way that unmaintained sidewalks are just as inaccessible as no sidewalk at all.” Kellen adds, “most houses aren’t super accessible, either, so it’s sometimes easier for me to stay home and have friends come to me.”
12. You can still do anything you put your mind to.
People who have MS are tougher than anyone realizes. “I call us MRIs — multiple resilient individuals,” says Smith. “Everything we do is a little bit harder than it is for the average person.”? But that doesn’t stop you from getting things done.