6 People Explain What It’s Really Like to Live With MS
Jamie-Lynn Sigler is finally opening up about a private battle she’s been facing for the past 15 years—living with multiple sclerosis (Photo: Getty Images).
In a new interview with People, the Sopranos actress explained that she wasn’t ready to speak out about her condition until now: “You’d think after all these years somebody would be settled with something like this, but it’s still hard to accept.”
Multiple sclerosis (MS) is a disease in which the body’s immune system attacks myelin, the protective sheath around nerve cells that helps send messages to the brain and other parts of the body. Common signs of the disease include trouble walking and maintaining balance, fatigue, sensations of numbness or tingling, and vision problems. But depending on which nerves are affected and the level of damage, symptoms can vary widely from person to person, and may not surface right away or progress steadily.
Sigler, 34, told the magazine that she was initially diagnosed at age 20 and went symptom-free “for quite some time.” It was during the last decade that the newlywed and new mom began to struggle with the often unpredictable effects of the disease. “I can’t walk for a long period of time without resting. I cannot run,” she said. “Stairs? I can do them but they’re not the easiest. When I walk, I have to think about every single step, which is annoying and frustrating.”
Because no two cases are alike, and MS can be so tricky to understand, we reached out to several individuals who are living with the disease, and asked them what they wished other people knew about it. Here are their stories.
Related: 4 Celebrities With Multiple Sclerosis
“Even when we’re in periods of remission, we are struggling psychologically on a daily basis.” –Meagan Freeman, 41, family nurse practitioner
It was a “strange” transition from caregiver to patient for Freeman, who says she has managed to find a way to play both roles in the six years since her diagnosis: “I have drastically changed my diet, tried to reduce stress as much as possible, and I have learned that I need to say ‘no’ sometimes in order to remain healthy.”
One thing that has surprised her is how people tend to think of MS patients in two ways: “Either complete and total disability, or a perfectly normal person with a minor illness,” says Freeman, who now blogs for the Multiple Sclerosis Association Of America (MSAA). The reality is that some people can become seriously disabled during flare-ups, but remain relatively functional at other times, she explains.
Fear of the future, however, is something they all share, she says: “It is inescapable with an incurable disease.” To escape the worry, she tries to live by the mantra It could always be worse. “There is always something to be grateful for,” she says, “no matter how small.”
“I don’t think of myself as a woman with MS most of the time.” –Liz Sagaser, 35, publishing and campaign strategist for a nonprofit organization
“I am not in denial,” says Sagaser, who was diagnosed on Nov. 13, 2007, her father’s birthday. “But overall, MS hasn’t stolen my function, and I feel hopeful because of this.”
At the time of her diagnosis, she had been married to her husband for eight years, two of which they’d spent trying to get pregnant. “The community neurologist who diagnosed me wanted me to start on a disease-modifying drug therapy right away, but I wasn’t going to set aside our plans to have a family.”
Now a mom of two, Sagaser has been on the same disease-modifying medication for five and a half years, and has not gone through a clinical relapse.
“I experience neuropathy in my hands and feet, fatigue, word recall issues, and sometimes long-term memory lapses,” she says. “But I consider people who seem to have a more virulent form of the disease, and whose health seems to decline more rapidly and noticeably than my own, and I’m grateful that my legs work, my arms work, my hands work. and my mental faculties are intact.”
Related: Could You Have MS? 16 Multiple Sclerosis Symptoms
“I never imagined I would be 40 years old and living at home with my parents.” –Christina Aivazoglou, 40, former personal trainer
Aivazoglou remembers when her days were spent at the gym training clients—no wheelchair, no leg brace. Now, with little mobility in the left side of her body, she requires help from an aid and her mom to eat, wash, style her hair, and more. “Although I am very lucky to have them, it sucks,” she admits.
Although she has tried many drugs that failed her, Aivazoglou continues to experiment with different options. In addition to disease-modifying therapy medications, she takes a sleeping pill and uses medical marijuana to help prevent muscle spasms during the night.
But her biggest challenge, she says, is coming to terms with the role reversal she has experienced with her daughter, who is now 10 years old. “I want to be able to drive my daughter to dance, spot her while she does a gymnastics move,” says Aivazoglou. “Instead my daughter is helping take care of me, calling 911 when I fall.”
“It’s all trial and error in figuring out how our bodies can best cope.” –Stacie Prada, 45, county treasurer
The first signs of fatigue and numbness eight years ago didn’t phase Prada. “I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest,” she says. “I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body.”
On the morning of her son’s graduation, Prada finally saw a specialist. “The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease-modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me [a] book,” she remembers. “I was dumbfounded.”
Today her fatigue is near-constant. “I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water.”
Her new attitude isn’t to “fight” or “battle” the disease. “That [language] never resonated with me,” says Prada, who also blogs for the MSAA. “Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible.”
Related: 7 Alternative Treatments for MS
“A lot of people don’t talk about it, but it does take a toll on your sex life.” –Michelle Tolson, 41, PR executive and dance teacher
Tolson is the first to admit that MS can shift the physical and emotional dynamics between partners. “Sometimes when you have a flare-up, you just don’t want to be touched. You have tingling and numbness in your legs and in your arms and just being brushed by somebody may feel awful,” she explains.
Joining separate support groups helped Tolson and her husband by allowing them to vent about her condition without taking any frustration out on each other: “I don’t try to pretend what it’s like being in his shoes, because I don’t know what it’s like to be worried all the time that the person you love is going to get worse.”
Tolson’s main concern is “staying as great as I am right now,” she says. The former Rockette was back on stage two years ago for an alumni performance, and she’s been teaching dance on the weekends ever since retiring from Radio City in 2002.
“It can be possible to feel completely great.” –Daryl Bryant, 38, founder of a digital marketing agency and author of MS: Living Symptom Free
Fourteen years ago, Bryant began to experience vision loss and eye pain, which “felt like someone was squeezing my eyeball with a wrench,” he says. He saw an eye specialist but was told that everything was fine.
Another year passed before Bryant visited a neurologist who informed him that he had optic neuritis, inflammation of the bundle of nerve fibers that transmits visual information from the eye to the brain. For many people, it is the first indication of MS.
“I was left in shock. All I remember is walking away thinking, MS is the disease that puts you in a wheelchair,” he says.
Bryant went through a difficult relapse in 2007 that landed him in the hospital. “Every time I stood up I would fall to the side. I felt extreme tingling throughout my body, and I couldn’t stop throwing up. I went to rehab and pretty much had to learn how to walk again.”
Following that scare, he began studying any information he could find on the disease. Today, Bryant has found success with an MS medication and adjustments to his lifestyle that allow him to manage his symptoms. “I eat a Paleo diet. I get up every day at 4:30 to go to the gym. I’ve run triathlons. I’m living,” he says. “So far, there’s no wheelchair in sight.”
by Jacqueline Andriakos
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