For years, Sopranos actress Jamie-Lynn Sigler attended the Race to Erase MS Gala—an annual black-tie fundraiser in Los Angeles—to lend her star power to help find a cure for the neurological disease. What no one knew was that Sigler wasn't there to support a friend or merely embrace another important cause—she was there as someone living with the disease.
"I didn't tell anyone [about my multiple sclerosis]," reflects Sigler, now 35. "It's very surreal because it's an event that I used to go to and would think, 'No one even knows I have this. [And yet], I'm one of the people that will benefit from this."
Until earlier this year, Sigler lived silently with the disease for 15 years. "When I was diagnosed [at age 20], my doctor said, 'I don't want you to think you can't do anything that you don't want to do in this life.' MS is part of me, but it's not who I am."
While most people have heard about MS, or may know someone who has it, it's still a largely misunderstood disease. "There can be different stages of the disease, or different types of MS," Sigler points out. "I have relapse remitting MS, which means that my symptoms can come and go. Usually when you stay on treatment, those flare-ups happen less and less." The National Multiple Sclerosis Society identifies four disease courses of MS, including RRMS (what Sigler has), primary-progressive MS (PPMS), secondary-progressive MS (SPMS), and progressive-relapsing MS. Each of these disease courses might be mild, moderate or severe. Approximately 85% of those with MS have the kind that Sigler does.
"I’ve been able to be petty stable for a couple years because I’ve stayed loyal to treatment." It didn't start out that way though. "I wasn’t good about in the beginning," admits Sigler. "I was in denial, so I was sort of rebelling against it. I didn’t take my medication. I didn’t want to live a life thinking about MS because I wasn’t symptomatic. But when I began to be, I realized how important it was."
Now that she's come to term with her diagnosis, she's learning to accept—and thrive—in her role as an unofficial spokesperson for the disease. "I really feel I'm connecting more because I'm being my true self. I'm still figuring out my life with it, and happy to do it with others who are feeling the same." Sigler is doing so with the help of Tecfedera, an oral treatment that can cut relapses in half. She takes one pill twice a day and sees her doctor every couple of months for maintenance. "Now, I'm super on top of it," she stresses.
Sigler is also participating in Tecfidera's new "Re-Imagine Myself" program, aimed to help others suffering from MS by sharing personal blog entries and opening up the conversation. "One of my doctor’s first pieces of advice was don’t go to a chat room. Don’t. Because everyone’s going to talk about how bad it is and it will make you sad and paranoid. So I’m just really proud that this site is a really positive community for people."
It's also a chance for Sigler to talk about her life and go into more detail than she ever has before. On a recent visit to the Glamour Los Angeles office, Sigler opened up about how MS affects her marriage (to husband Cutter Dykstra), her parenting (son Beau is three), and her daily routine. "We all have something," says Sigler. "And MS is my something."
Glamour: January will mark one year since you publicly opened up about your MS. A year ago at this time, though, where were you in terms of deciding whether or not to tell your secret?
Jamie-Lynn Sigler: A year-and-a-half ago if you would have asked me or anyone who knew me, they would have said, ‘No way. There’s no way she’ll never tell anybody.’ I had been keeping it a secret for so many years, and I couldn’t see anything positive coming out of it. It also meant that I really had to accept that it was part of my life. I thought that work wouldn’t come anymore. I thought that people would see me as sick and not see me as me. I enjoyed when people didn’t know, because I thought that meant I was hiding it really well that nobody would know. For whatever reason, it felt like a positive thing for me.
Glamour: What changed?
JLS: A year ago, I started going to a hypnotherapist because he felt he could help people with chronic diseases and how to deal with pain, and help place your mind in other places. I didn't think [he would] help me find the courage to come forward with my diagnosis. The first thing he said to me was, ‘Your secret is keeping you sick. Your only way to find any type of healing is to release yourself. You didn’t do anything wrong, and you’re walking around like you did.’ I started to realize I was harboring all these feelings of shame and guilt, and it’s true, I didn’t do anything wrong, so why was I feeling so embarrassed and labeled by this? It was a couple sessions of working with him and under hypnosis and giving me confidence. At that point, I called Gary [my publicist], and said, ‘I’m ready.’ He was so happy, and my representatives were so happy, which I was surprised about. They said, ‘Jamie, this is not only going to help you as a person and an actress, but you’re going to help so many other people, too.’
Glamour: How did you come to a decision on the timing of the announcement?
JLS: I thought, ‘I want to do this around my wedding,’ because I wanted it to come out of a time that was positive and I’m dancing down the aisle. I’m a mother, and I have all these wonderful parts of me that I want to share. I didn’t want it to be at a time that was sad or insignificant. It would be a much better story if it went along [with something positive happening], so that was our plan!
PHOTO: Jamie-Lynn Sigler
Glamour: How did you feel on the morning that the news broke on People [they had the exclusive]?
JLS: Terrified. I woke up crying. I didn’t want to look at my phone and I heard it going off on my nightstand. I looked at my husband, and he said, ‘Why are you crying?’ and I said, ‘I just feel so vulnerable. It’s just my biggest secret is out, and I don’t know how to live like that yet.’ He said, ‘Alright, let me pick up your phone first,’ and he started going through it and then said, ‘I want you to look at this. Read your text messages.’ There were friends from high school texting me that didn’t know, cousins that didn’t know, etc. because I was so secretive about it. And then there was people reaching out on social media, and it was so lovely. My husband said, ‘I’ve got Beau [our son], for the day, so you stay here and just rest and process it and work through it.' I had friends come over that brought flowers and lunch and just hung out. It was a day that I took to really reflect on my life with MS and all that I’ve been through. I read every single tweet, every single Instagram comment, and it hit me that I have this incredible responsibility now to represent a community that suffers in silence a lot of the time.
Glamour: Do you wish you would have opened up about your diagnosis sooner?
JLS: It was the right timing [for me]. I think I needed to go through things and process them to be able to have the wisdom that I have now. I think if I came out sooner, I wouldn’t be as equipped as I am now to talk about it. I feel liberated. I feel stronger. I feel like I’ve learned a different meaning of the word strong. To me, I used to feel like I wasn’t strong, and I used to be strong, because I would equate everything with being physically strong. All my friends say to me, 'You’re the strongest girl I know,' and I am learning to accept when people tell me that and really believe it because we all are strong people, and we all have something, and [MS] is my something.
Glamour: What’s something you wish people knew when they talk to you? I’d imagine people might treat you more delicately.
JLS: I’m an open book and I’m OK with people asking me anything, but I did work on a film after coming out, and at first it felt like everyone was asking, 'Do you need this? Can I bring you that?' and I turned to the director and the assistant director and said, 'Guys, I promise I will ask if I need to sit down. I’m not pushing myself. I promise, but please don’t make me feel different right now.' They were like, 'Cool, cool.' So I will have those conversations if need be, but honestly, no one has really been annoying. People mainly tell me, 'my sister has this, my mom has this, so thank you for coming out,' and that feels so nice.
Glamour: How do you deal with the bad days and the stressful days?
JLS: Like everyone else. I get really sad. I’ll cry a lot. One of the things I’m trying to get better about is when I’m depressed or sad, I hole up and I don’t communicate. I’m trying to learn how to open up more. But I have those days for sure.
Glamour: How often do you think about MS during the day?
JLS: It’s pretty constant. Especially when I’m with my son. He’s an active toddler and wants to be on the move all the time, so I am thinking of his safety, while also keeping up with him and engaging him. Even though I have my limitations, I think, ‘How can I make this game still fun for him?’
Glamour: Do you ever use one of those…
JLS: No, I never put him on a leash. [Laughs] I try and take him to parks that have gates, so he can run free and I don’t have to worry about him running in the street or anything like that. But I’m also conscious of driving places and whether I can park close enough so I don’t have to walk too far. But when we go places, I always have the stroller, so I can use that for balance, and it allows me to walk longer distances. I think about [MS] probably more than I would like, but that’s mainly when I’m leaving the house and going somewhere. When I’m home, the pressure is off, and I’m really still trying to learn how to take that out with me. I’m also still getting used to the fact that people are aware and it’s OK. For so many years I felt like I needed to hide it, so I’m still getting used to that part.
Glamour: How do you feel most days? Are you in pain?
JLS: I’ll have moments where my sciatica gets really bad at the end of the day or I’m a little extra stiff today or whatnot, but I can say that I’ve learned to sort of be uncomfortable. I think to anyone else, if you were in my skin, you’d say, 'Oh, this feels so weird,' but it’s my normal. It’s really hard for me to sit here and complain about things because I just sort of live with it every day. But after an adjustment or a massage, I can get a glimpse of “Oh, this could feel a little bit better.”
Glamour: When do you feel most relief?
JLS: After I meditate, and then just lay down knowing my son is asleep, bottles are washed, toys are put away, no more responsibilities. Just me time. That’s when I feel really at peace. And when I’m working. Because that’s when I’m doing my thing.
Glamour: What's one of the most difficult physical challenges?
JLS: I haven't been able to run for 10 years. If there’s one thing I dream about doing again, it’s that because it’s such a liberating feeling. You just want to release that energy. But I’m very used to it now.
Glamour: If you try to run, what happens?
JLS: I start to stiffen up. My brain can’t work quickly enough with my legs. I have a weakness in my right side, so balance, coordination…heels can be hard for me, which is a bummer because I love wearing them. I just want to live the life I need to live, and don’t want to be constantly reminded of the things I can’t do.
Glamour: And MS affects more than just the physical.
JLS: It affects so many areas of your life, including my marriage and my sex life, and motherhood and parenting, and my career. It’s just sort of how I have navigated through and learned the helpful ways and the not so helpful ways. I think more than anything, not allowing people to help me, made everything harder. Not even physically, but emotionally. I think that’s the one commonality those with MS all have.
Glamour: You touched on MS affecting your sex life. Can you explain more?
JLS: First and foremost, [sex] is the last thing on your mind at the end of the day. That’s not where your head’s at. It’s a part of you that you can forget that is still really important. Sometimes pushing yourself to have sex can be like, “Oh yeah, I do enjoy this! I do enjoy this part of me!” You’re laying down, you can definitely make it work for yourself. And then there’s physical things that affect everyone. For me, because I have bladder issues, I have to make sure I always…like, spontaneity is out the window, so I have to make sure I go to the bathroom before. So there’s certain ways I have to manage it and be responsible with it. But you don’t want to lose feeling sexy, and I can feel that sometimes, where I’ll say, “I don’t feel sexy. I don’t feel good today.” Like, I feel dumpy. My husband is wonderful and great at making me feel good about myself—or trying to at least! But, like I said, there’s times I’m like, “I’m going to do this for him,” and then realize it’s actually for me too.
Glamour: Transitioning a bit to pregnancy, many patients who have MS go into remission when they get pregnant. Why is that?
JLS: I don’t know. It’s a beautiful miracle. Your symptoms can get a lot quieter [during that time]. It’s a wonderful thing. I can only speak for me, but when I was pregnant, I was hiking with my dog, and those are things that I don’t do now. So, it is a lovely thing that happens for women. My doctor has never said “get knocked up again,” [but] it's just something you can look forward to when it happens.
Glamour: Do you want to get pregnant again?
JLS: We want more children for sure. We talk about it. It’s more timing for us in our lives with careers and just life in general of when it’s going to be the right time, and that’s just what we’re trying to figure out.
PHOTO: Jamie-Lynn Sigler
Glamour: Speaking of careers, you’ve been working, but have you noticed a difference with the amount of work or offers that have come your way?
JLS: I don’t know, and I’d actually rather be in the dark whether it’s affecting it or not because I’m way too sensitive for information like that. I've had opportunities since [revealing my diagnosis], and that’s all I need. I almost feel like I’m doing better work because I feel so much more free and I’m able to concentrate the on the work and not so much the physical things. I used to have to battle with going back and forth about it. Acting is something that I still want to continue with and I love with all my heart. I’m sort of just surrendering to life in general and seeing where it leads me, but I’m figuring it all out as I go.
Glamour: Will you turn down projects if they are outside of California?
JLS: To me, out of state has nothing to do with the MS, and that’s more of childcare and figuring out who can come with me and watch Beau. I did a western in New Mexico [last spring], and I just flew back and forth because it just wasn’t ideal to bring him. I’ll only pull out [of a job] if it’s [a] physical [role]. I’m not going to play a detective or a superhero, but I’m human, and I want to tell stories. I’ve been writing a script actually for a long time that I want to produce, [so] maybe that is a future for me down the road. [But] acting is a passion of mine, and it’s a hard thing to shut off when it’s all you’ve ever done. MS or not, [we’re] actors and we all worry whether we’re going to work again or not. I’m really trying to be really zen about it and trust that things are going to come when they should.
Glamour: With the election coming up, is there something you hope our next President will do in terms of funding and education for MS?
JLS: Healthcare is a very personal thing for me, and I’m very fortunate that I’m able to afford any treatments that I’ve needed. But one of the things that breaks my heart that I’ve heard from some people is that they don’t have the money for treatment. I would love to see more attention paid to MS, and stem cell research to give people hope for the future. Most people are diagnosed between 20 and 40, and these are young people just starting their lives or in the middle of their careers. There used to be one or two drugs, so to be able to cater to the specific way the disease is affecting people is amazing. I think they’ve made incredible strides.
Glamour: I can tell that it’s so important for you to talk about your journey, and bring awareness to MS, but it must be an energy zapper when you’re constantly discussing it. How does that affect you?
JLS: It can get exhausting. Sometimes I’ll even tell my husband, “I think we’ve talked about it too much. I think we need to focus on other things right now.” Because in my own head, I’m always focused on it and feeling it. I’m always trying to figure out the best way to go about life, but at times like this, I think it’s important to because it’s going to be reaching other people. My friends are very aware though and so we rarely talk about it. They’ll offer me an arm if I need it, but we really just don’t [talk about] and I appreciate that so much. You need breaks.
Glamour: What things don’t bother you now? In what ways have you found this diagnosis to be a blessing?
JLS: Weight doesn’t bother me. I had an eating disorder as a teenager, so that’s…being healthy and having a healthy body means something completely different to me now. In that way, for sure. I think it slowed me down, but in a good way. It’s made me more present. I used to always be so worried about the future. Always, always, always. I never appreciated the moment, and I definitely do that a whole lot more. I’m definitely grateful for that.
For more with Jamie-Lynn Sigler, click here to read her personal entries at Re-Imagine Yourself. Signer will also receive the Race to Erase MS "Medal of Hope" award at the 24th Annual Race to Erase MS Gala on May 5, 2017.