6 People Explain What It’s Really Like to Live With MS

After Jamie-Lynn Sigler’s announcement, we asked several individuals who have multiple sclerosis to share their experience with the disease. These are their stories.

Jamie-Lynn Sigler is finally opening up about a private battle she’s been facing for the past 15 years living with multiple sclerosis.

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.

“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.

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