Jamie-Lynn Sigler: “MS Didn’t Define My Value”

Last month she appeared on the cover of People with Christina Applegate—two actors mass audiences first embraced for their roles as sweet and strong-minded daughters in TV series of decades past. Today, the two are confidantes, comrades, and co-hosts of the MeSsy podcast, holding space for candid discussion about their experiences with multiple sclerosis.

Jamie-Lynn Sigler is 42 but in 2016 revealed that she’d been dealing with MS since around 2001, which was prime time for The Sopranos as well as for the then-rapidly up-and-coming young actress herself. Recently she’s revealed she was dealing with neurological symptoms such as a bout of paralysis on set that it’s said was initially misdiagnosed as Lyme disease. For 15 years, Sigler kept her MS diagnosis private throughout subsequent work on projects like Entourage in 2008-09.

Today with husband Cutter Dykstra, a former Major League Baseball player, Sigler is a mom of two active school-aged sons. In partnership with the Novartis drug Kesimpta, Sigler spoke with The Healthy by Reader’s Digest about what it took to become a voice for ability and awareness in an industry that demands perfection.

The Healthy by Reader’s Digest: Jamie, in a way, we could say it’s starting to feel like a new world with so many women being able to speak openly about our health experiences that it seems like generations past felt they needed to keep private, probably rightfully so. What inspired you to start sharing about your experience?

Jamie-Lynn Sigler: I think my own experience of keeping my diagnosis a secret for 15 years and knowing how incredibly difficult that was, the added layer of suffering it created, and the feelings of shame and guilt that I started to harbor because of it, made me realize that I probably wasn’t alone in my suffering. It was also not a way I could live my life anymore. My willingness and openness to how much I share has evolved over time. It comes from my courage and self-work in realizing that relapsing multiple sclerosis (RMS) didn’t define me and didn’t take away anything of who I am and my value as a wife, mom, actress and friend. I also didn’t want other people to feel those feelings or feel alone.

With the MeSsy podcast with Christina, I’m not doing it alone. I have a partner to open a space to be vulnerable, honest and share really difficult things we both go through. We also hope to give other people permission to share those parts of themselves.

Through this process of finding myself and my voice, I collaborated with Novartis (independent of my MeSsy podcast) to develop a three-step guide to help other people living with RMS speak up and voice their needs.

I find that the first part, reflecting, was the most difficult because that meant sitting with the hard stuff, including those difficult emotions that can come with a diagnosis like RMS. There’s grief and sadness, but allowing yourself to feel those feelings and accepting that it’s part of your life and something that you’re going to have to deal with and honoring that it’s OK as a human being to feel those feelings allowed me to go into the next step of reframing to say, “This is part of my life, but there’s still a lot of things I want to accomplish as a wife, mom and actress.” It’s all about how I reframe my life with RMS to do those things.

The third step is reaching out for help. As an actress, my trailer gets parked a little closer to set, or I’ll have a chair near the set so I can rest in between takes. As a mom, I am at the baseball field all weekend with my son, so I’ll get a wagon I can lean on to push when it’s a long walk from the parking lot to the field and we have all our gear. I also travel a lot for work, so I have a four-wheel suitcase that I can push through the airport. These little adjustments that I can make to allow me to still do what I want to do.

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The Healthy: We’ve learned you’ve been living with MS for more than 20 years, since your early twenties. What were the early symptoms that started hinting to you that something was going on? How did you come to a final diagnosis?

Jamie-Lynn Sigler: My first symptoms were similar to the feeling right before you’re getting pins and needles—where your leg is asleep, and you feel like it’s about to wake up but doesn’t quite get there. I remember I woke up one day with that feeling in my feet and over the course of a week, that sensation was rising in my legs every day.

I was also having issues with my bladder with initiating and incontinence. I was a young, healthy 20-year-old woman at the time, and these were alarming and concerning. I ended up getting an MRI, spinal tap, and a full evaluation by a neurologist and that’s how I was diagnosed with RMS.

The Healthy: You’ve talked about the boundaries you’ve been practicing in your work life for your health. A lot of us can learn from that! What have the reactions been like from the people you’re working for and with? What’s a takeaway about this that you’d share with women, whether it’s in navigating MS, another condition, or even menopause or fertility?

Jamie-Lynn Sigler: I didn’t ask for help for a long time, so I understand the two different ways to do it. I white-knuckled through for a very long time, and it was really difficult. I couldn’t be the actress, mom, or friend I wanted to be because I was trying to do it all alone and pretending that I was fine and didn’t need help. I pushed through until a point where it was obvious that I did need help and was at a point where I was going to give up on it all because I didn’t understand how it could be possible. There was no joy in it and it was hard.

I was on a show called Big Sky for two seasons, and it was one of the first times I had asked for help. After an initial conversation, nothing else needed to be done on my part. I was fully supported. My trailer was parked close, I had an arm to lean on anywhere we had to go, and every time there was a new director, they were already briefed on my limitations. That’s when I realized I wasn’t a burden. I was initially so afraid of feeling like people would have to go out of their way for me, but realizing that it wasn’t the case at all allowed me to find the joy again and do the best job that I could do. Setting those boundaries and voicing my needs was a complete game-changer, and it bled into every area of my life.

My conversations with my doctor and advocating for myself also helped me find the right RMS treatment plan for me. After a long discussion, we decided that KESIMPTA (Ofatumumab) would be the right medication. It works for me and my schedule, I can take it myself, at home, or on the go. It also typically takes me less than a minute a month after I complete my three weekly starter doses.

As with any medication, there can be risks. My doctor told me that people with active Hepatitis B infection shouldn’t take KESIMPTA, so I needed to be tested for that. He also told me that there could be serious side effects such as life-threatening and fatal infections, injection reactions, lowered antibodies, and other common ones like headaches. But of course, everyone’s experience with MS is different, so it’s important to talk with your doctor to find a treatment plan that works for you, especially if you’re pregnant or planning to be.

KESIMPTA is the right medication for me and being able to find my voice and set boundaries allowed my doctor and I to get to that conclusion together.

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The Healthy: We’ve had a listen to the podcast, we love that you’re doing this! What have you gained or learned from it so far?

Jamie-Lynn Sigler: MeSsy is called MeSsy for a reason. There is no format, and we are not professional interviewers. You are truly getting to listen into an open, honest, vulnerable conversation between two really good friends, and two women who have been through a lot in life, who are here for each other to lift each other, to give each other permission to say that’s it hard, and to push each other when needed.

The value that Christina has brought into my life is immeasurable, and how we can inspire each other in our own individual ways just by being honest has been such a gift. We are hoping that MeSsy is not just a podcast for people living with MS, but that people, in general, can find themselves in our voices and our stories, and find a way in their own lives to feel like it is OK to share that life is hard and to find the people that are willing to hold the space for you to say that and still love you despite it.

The Healthy: How do you manage life as the mom of a busy young family? Are there days when you can go full-steam, and days when you need to slow down?

Jamie-Lynn Sigler: That’s exactly it. There are days when I’ll come home and look at my Oura ring and I’m like, “Wow I took 11,000 steps today; I pushed through and there was a lot we accomplished.” And there are other days where that’s not the case and I need to rest more.

With any chronic illness, the people in your family and closest circle are affected, too. This is just our reality. My kids know that, my husband knows that, and we make the accommodations that are needed. I accept them both because I have the good days and the days that are a little bit slower. I know that neither one is the end-all-be-all, and as human beings, RMS or not, we all have days when we can do more and days when we can’t. The acceptance around that has helped me not judge either one of them.

The Healthy: What’s one self-care routine you refuse to skip?

Jamie-Lynn Sigler: Meditation—allowing myself to sit with me, slow down and disconnect. Sometimes it’s only two minutes, other times it’s 30. I don’t give myself any pressure or judgment about whether it was good, bad, or not enough. Closing my eyes and connecting with myself has been a complete game-changer in every area of my life. Sometimes, if I am getting frustrated with my kids, I’ll walk to another room, and take a couple of deep breaths, whatever it may be. It’s been a practice that has been nonnegotiable for me.

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This interview has been edited for length.