A lot of people have still never heard of multiple sclerosis. The chronic illness has been brought to the forefront in recent years thanks to actresses including Christina Applegate and Selma Blair speaking about how the disease has affected their lives and careers. Multiple sclerosis is a disease that affects the brain and central nervous system, but every person diagnosed with MS has a different experience with it.
Celebrity mom Jamie-Lynn Sigler, who is best known for her roles on The Sopranos and Entourage, was diagnosed with multiple sclerosis when she was 20, but she kept her diagnosis quiet until 2016. She has become an advocate for people living with the disease, partnering with drug company Novartis as well as co-hosting the podcast MeSsy with Christina Applegate.
More from CafeMom: Christina Applegate Says She's 'Kind of in Hell' Living With Multiple Sclerosis
What is multiple sclerosis?
Multiple sclerosis is a disease where a person’s immune system attacks the protective covering of nerve fibers, which causes communication problems between the person’s brain and the rest of their body. Some common symptoms of MS include issues with walking and coordination, numbness in the limbs, vision issues like blurriness, or double vision and potential loss of vision, fatigue, and mood disturbances.
There is no cure for MS, and no way of knowing when your symptoms may flare up. Some people living with MS can have prolonged periods of remission, and then others may have a steady progression of their symptoms.
Jamie-Lynn has created a guide for checking in with herself.
Living with MS for over 20 years, Jamie-Lynn has “learned the hard way.” It’s because of this that she created a three-step guide for herself and others who may be dealing with the disease as a way for them to check in with themselves. The Reflect, Reframe, Reach Out Guide focuses on reflection, reframing, and reaching out, three things that Jamie-Lynn has found are important for dealing with a chronic illness.
For her, reflection looks like “sitting with the hard stuff,” which can include mourning for the life you had before, or dealing with the depression that being diagnosed with a chronic illness can bring. Reframing means “accepting your circumstances, whatever they may be,” and looking at the changes you need to make your life more livable. And that leads to reaching out, which can be incredibly hard, especially for women. Jamie-Lynn says that reaching out “allows me to be my best self in all the areas of my life.”
She says that this checklist is something she returns to whenever she needs it. Just because she’s been living with the disease for so long doesn’t mean that she doesn’t need a reminder sometimes, too.
Being a mom with a chronic illness is a constant lesson.
When Jamie-Lynn had her first son in 2013, she found herself “white knuckling” through living with MS and trying to be a mom. “I wanted to do everything,” she explained. She also shared that white knuckling “took its toll on not only my physical health but my mental health, and I burned out pretty hard.” While she found that her other new mom friends who didn’t have a chronic illness were having similar experiences, she knew that the way she was pushing herself was “detrimental to my health and my quality of life.”
“I actually didn't really deal with my MS as much as I thought I was until I became a mom because then it was more than just about me,” she explained. “There's adjustments that I've had to make and I'm not saying that they were easy and I'm not saying they didn't come without tears and sometimes a little heartbreak. Handing my child off to somebody else to do some physical activity that I want them to enjoy and experience but I just can't do is really hard.”
She has figured out how to be the mom she wants to be while also being aware of her limitations.
Jamie-Lynn knows that she can’t be as physically active with her sons as she wants to be, but they’ve found ways to make it work. She shared that they like to watch American Idol together every week, cook, and play with Legos. As a baseball mom, she loads all their gear into a wagon that she can lean on while walking. “It's like, OK, how do I accomplish these things that I wanna do with my kids, but get the help that I need in order to accomplish them?” she asks herself.
Another hack she uses is getting a wheeled suitcase that she can lean on at the airport while they’re traveling. “Sometimes, if we're gonna go to Disney World, I rent one of those Rascals because I can keep up with them running from ride to ride,” she shared. “I don't have to worry about physically feeling like I can't keep up with what they're doing.”
Having MS affects her whole family.
Jamie-Lynn shared that her two sons, ages 10 and 6, react to her illness “very differently.” She says that her older son is “very empathetic and understanding” of the ways MS can limit her. She recalled a day that was physically taxing and how supportive her son was of her ability to get through it. “We don't talk about it because it's just our reality,” she shared. “But I made dinner for them and I kind of plopped down next to him — clearly I was exhausted. He looked at me and he said, ‘you know, mom, you're doing a really good job at this MS thing.’” After he said that, she was “obviously a puddle” knowing that he sees how hard she tries.
“Some people worry that their MS would affect their ability to be the full parent they want to be,” Dr. Riley Bove (UCSF Weill Institute, San Francisco, California) explained. “When you look at the kids of parents with MS, those kids do well. They’re the citizens that you would want in the sense that they know that they have to help and pitch in. They've had a bit more responsibility, which can be a good thing, you know, empowering for children.”
While her older son is incredibly empathetic to his mom’s illness, Jamie-Lynn says her younger son “hates” that she has MS. “He's really angry that Mommy can't run — he's very aware and he points it out all the time.” But that’s OK, too. “I'm very open and I'm very accepting of his feelings around it. I'm like, ‘Ok, well, maybe this also is going to give him permission to talk about things that he's seeing and not keep things inside and feel free to be observant and not judgmental,’” she said. Of course, her understanding doesn’t make it any less hard to hear.
Jamie-Lynn is always finding ways to help other women who are struggling with MS.
As someone who has been dealing with MS for over 20 years, Jamie-Lynn has connected with a lot of other women who also have the disease through their experiences. “I find that because people know I live with MS, they're so willing to share the hard parts of their lives with me,” she explained. “It's allowed for such beautiful conversations and deeper friendships.”
One of those friendships is with fellow actress Christina Applegate. They recently released the podcast MeSsy, where they talk about their experiences with the illness. “It started from phone conversations where we would just be like ‘how are you’ and next thing you know, two hours later we’ve talked about everything — things that we've been embarrassed about. Because we share this very unique experience of living with MS, we've been able to kind of go there and we can't not share literally everything,” she said.
“There's really no format with our podcast, you're just eavesdropping on our conversations. A lot of the time, her and I will text each other and say, ‘I'm going through something today’ and we'll just record and get it out there,” she shared. “We take such pride in what we're doing and we genuinely want to be able to share all of this with everyone because her and I have a lifetime of holding things back and trying to perform and we're kind of done with that. We see the benefits of it and we're hoping that other people can as well.”
