All the MS Feels
You don't have to get through this alone: We've got expert advice on how to deal with the emotional mashup that can follow a multiple sclerosis diagnosis. by Hallie Levine
Seven years ago, Valerie Fiordilino Maslow was towel-drying her hair after a shower when she experienced an electric shock sensation that spread from her neck down her entire right leg. "I'd just finished a long run, and it was a hot day, so I just assumed I was dehydrated," recalls Maslow, now 34.
But after a couple of months, when it kept happening—every time she bent her neck—she made an appointment with her primary-care physician, who ultimately referred her to a neurologist.
A week later, Maslow was pulling out of a Starbucks parking lot when the doctor called with news that changed her life: She had multiple sclerosis. "It was extremely traumatic and terrifying to hear, especially since it came out of the blue over the phone," says Maslow, a physician's assistant (PA) in Palm Beach Gardens, FL.
Coping With an MS Diagnosis
Stunned, she called her mother, who immediately raced to the parking lot with Maslow's brother and sister in tow. "I was so shocked I couldn't even think straight," Maslow says now. "I kept thinking, 'I'll have to drop out of PA school. I won't be able to run marathons anymore. I'll never get married and have kids. I just assumed that my life as I knew it was over."
When you're young and feeling strong, you often think you're invincible, which is why a diagnosis of multiple sclerosis can come as such a blow.
"There's no doubt an MS diagnosis is scary for everyone, but it's particularly frightening for young adults who are in the process of finishing school and starting careers and families," says Martin Belkin, D.O., medical director of the Multiple Sclerosis Center at the Michigan Institute for Neurological Disorders in Farmington Hills, MI. "They're trying to map out their entire life when they learn they have a chronic illness that they'll have to learn to live with day by day."
The good news? The recent revolution in MS treatments means it's more likely that you’ll be able to achieve most, if not all, of your life's goals, reassures Dr. Belkin. But that still doesn't take away the fear, anxiety, anger, and other feelings you may face along the way. We've got advice on how to get through.
MS Emotions: Denial
Ok, so denial is not a feeling per se, but it is a familiar reaction that keeps other emotions at bay. It's actually a very common part of the grieving process, explains Traci Paxton, M.S.W., a social worker at OhioHealth in Columbus, OH, who regularly counsels young people with multiple sclerosis.
How to Deal: At the beginning, denial can be a good thing, serving as a sort of shock absorber. But if it sticks around for more than a few weeks, or prevents you from following medical advice like taking your medications, you need to get professional help. "Part of dealing with the disease is establishing some sort of sense of control, and that’s not going to happen if you're in denial about it," Paxton says.
Consider what happened to 23-year-old Savannah Karako in Painesville, OH: When she was diagnosed with MS two years ago, her first thought was about what it would mean for her college-softball career. "I'd missed two games the day before my diagnosis because the MS had caused double and blurry vision," says Karako. She resisted telling her teammates or professors. "It was like if I didn't say those four words—'I have multiple sclerosis'—out loud, then it wasn't really happening," she says.
Karako's parents were the ones who gently pushed her out of this stage. Unbeknownst to her, they reached out to her professors to let them know what was happening. "In hindsight, I realize they had to do it: At that point they were typing my papers for me because the glare of the computer screen gave me splitting headaches," she says.
And once she realized her teachers knew—and were okay with it—it gave her courage to let others know, like her teammates and friends.
MS Emotions: Anger
Irritated. Moody. And just plain pissed off. All of it's normal. Some of it may even be due to very real changes in your brain from MS, which can affect levels of feel-good hormones such as serotonin. "Anger is actually a form of depression turned outward," explains Dr. Belkin.
How to Deal: Your goal is to find ways to put that angry energy to good use. For Maslow, who was no stranger to anger in the first few months after her diagnosis, the solution was to lace up her running shoes. "I'd go for a jog and literally cry and scream at the same time," she says. "It left my body physically tired, so there was less room for anger. I also felt better because I felt like I'd channeled my efforts into actually doing something that was good for me."
Research backs her up: A new study in the journal Explore found that people with MS who took part in a cycling program three days a week for eight weeks experienced improvements in depression and fatigue compared to a control group.
MS Emotions: Depression
Welcome to the club. More than half of people with MS will experience depression at some point, according to the National Multiple Sclerosis Society. "There's often fear and anxiety as the reality of the diagnosis sets in as people assume the worst about their health and their future," explains Belkin. "The key is to get them to feel like they have some control over the situation, so they feel empowered."
How to Deal: One way to fight back against the sadness is to get educated about MS. When Maslow was first diagnosed, she deliberately stayed away from the Internet and instead focused her energies on visiting several different MS specialists across town to get second and third opinions.
"I wanted to focus on getting as much accurate, up to date information as I could, and not to become saddened and scared by reading frightening stories online," Maslow explains. Once she zeroed in on a specialist, and started on a treatment plan, her sadness began to lessen and lift. "I felt like whatever happened, I was doing everything I could," she says.
However, if your depression persists for more than a few weeks, talk to your neurologist or primary-care physician about a referral to a therapist.
MS Emotions: Shame or Guilt
The embarrassment of not being able to do the things you’ve done effortlessly at home, on the job, in the grocery store, at the gym—wherever—can be tough to handle. And turning things over to friends or family can be tough.
"People worry about their loved ones taking on more responsibilities, or if they have a partner or kids, they worry that they're not getting as much attention," explains Paxton.
How to Deal: Set realistic goals while you get a handle on your illness, she counsels. It may mean scaling back on work or classes, for example. "Most people can get back on track with their lives, but it may take a few months or even a year or two while they find the medications that work for them—and learn to deal with their new normal," she stresses.
A good laugh helps, too. "I stumble or drop something at least once a day," says Karako. For her, humor is key. "I just joke that it's because of my mush brain," she says. "I find that if I laugh about it, it puts everyone around me at ease. And it gives me perspective, because honestly, if I wasn't finding something funny in it, I'd be crying!"
MS Emotions: Stress
Having a chronic illness increases stress, and MS is no exception. Whether you're waiting for a definitive diagnosis, adjusting to changing abilities, or navigating your way through "cog fog" (the memory and thinking changes that can occur in some people) MS is a nerve-racking experience.
"When you're stressed, you require more energy in general to deal with day-to-day life, which can be hard if you're also dealing with MS-related fatigue," adds Paxton. That’s why getting a handle on stress is so important.
How to Deal: People with MS who participated in a weekly stress-management program that included learning problem-solving skills, relaxation exercises, and cognitive-behavior therapy had fewer new brain lesions, which often precede symptom flares, according to a Northwestern Medicine study published in the medical journal Neurology.
The antidote, in part, is caring for yourself. "I'm in my pajamas in bed by 9 p.m. watching TV most nights of the week," says Karako. Maslow swears by self-pampering strategies like monthly massages and pedicures. "Anytime I start feeling tinging in my hands or fingers, I know it's my body’s way of telling me to scale back and hit my yoga class," she says.
MS Emotions: Hope
If you've had to wait months or even years to know what’s going on in your body, or repeatedly heard there was nothing wrong with you and that symptoms were "all in your head," getting a definitive diagnosis can be a huge relief.
"It had been so frustrating to not know for months what was wrong with me, so to get answers was comforting," says Sidney Sterling, a 22-year-old Miami public relations executive diagnosed with MS at age 16. This means she didn't have something potentially fatal, like a brain tumor. And that she wasn't imaging things.
Most importantly, she says, the diagnosis meant that "once I started the right treatment, I'd be able to get back out there and start living my life."
Exercise and depression: Explore. (2019). "Effect of Short-Term Interval Exercise Training on Fatigue, Depression and Fitness in Normal Weight versus Overweight Person with Multiple Sclerosis." sciencedirect.com/science/article/abs/pii/S1550830718301277?via%3Dihub
Stress and brain lesions in MS: Neurology. (2012). "A Randomized Trial of Stress Management for the Prevention of New Brain Lesions in MS." https://www.ncbi.nlm.nih.gov/pubmed/22786596
MS and emotions: National Multiple Sclerosis Society. "Multiple Sclerosis and Your Emotions." nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Emotions.pdf