You probably recognize actress Jamie Lynn Sigler from her role as Meadow on the award-winning drama, The Sopranos.
On screen, life for the Sopranos family was complicated and often shrouded in secrecy. Off camera, Sigler was dealing with a secret of her own: She was living with relapsing multiple sclerosis (RMS) — a chronic disease that can affect the brain, spinal cord and optic nerves and causes unpredictable flare-ups.
Siegler was just 20 years old when she was diagnosed and still filming the popular TV show. For 16 years, she kept her diagnosis to herself, in part because she was afraid that people wouldn’t want to work with her.
Now, in her new book, And So It Is ... A Memoir of Acceptance and Hope, Sigler takes readers behind the scenes of her time filming The Sopranos, her MS diagnosis and the life experiences that led her to become an advocate for the MS community.
We talked to Sigler about managing MS, her memoir and the surprising perks of midlife.
This interview has been lightly edited for clarity and length.
HealthyWomen: For people who haven’t read your memoir, can you describe how relapsing multiple sclerosis (RMS) has affected your life?
Jamie Lynn Sigler: I was 20 when I was diagnosed, and my reaction to the diagnosis, as one can imagine at that tender age, was fear.
I was overwhelmed. I didn't really have any example or anyone to look to that I knew who was living with the disease, and I reacted by living in denial, shutting down, keeping it a secret and not asking questions. I assumed that the less I knew the safer I would feel.
Pre-MS I was already somebody that was riddled with insecurities and fears and labels that I put upon myself of not being good enough and not being worthy, and the disease really amplified those feelings.
Over the years, I carried this heavy weight of guilt and shame for keeping the secret, for having the disease, and allowing myself to go through this alone in my own head and creating a very difficult existence.
Thankfully, I eventually found myself at a time where I had broadened the circle beyond my immediate family just enough for my friends and my loved ones to remind me that MS didn't define me — it didn't take away my worth — and that I deserve to live a life of truth and authenticity. Then I had a child, and I was ready to face my biggest fear, which was going public with MS, and the undoing of living in secret and finally facing what it's like to live in your truth and to share authentically and vulnerably and then that allows for healing, not just of the physical body but of the self.
I think what MS ended up becoming for me was this invitation to look within — to stop me in my tracks in a way that felt devastating but also now I see was a gift of being able to really heal parts of me and of myself that maybe otherwise I wouldn't have given myself the time to do.
HW: Why was it important for you to write this memoir now?
Sigler: I've been through so many stages of not just this disease, but of life in general, and I've learned through my advocacy and through being a public figure that we all experience pain, we all experience struggle, and emotions are a universal thing that we all feel — and how isolated we can feel within them. So, the more that you open up and the more that you share in your vulnerability, the less alone you feel and the less alone you allow others to feel as well.
I assumed in talking about my RMS journey that it would only resonate within the MS community, but on the daily I have people say, “I don't have MS but I feel you and I understand what you're saying and I saw myself in your story in so many ways even though our lives are vastly different.” I've had grown men tell me that as well, which has been so lovely.
I find that I feel so much more confident not only in my skin but in my voice — I found my voice in just being imperfect and being flawed and saying sometimes that I'm not OK, or that I’m scared or I’m sorry — being able to accept all the parts of myself has allowed me to be a more confident person moving forward, and it allowed me to have more grace and forgiveness for life in general, but most importantly for myself.
HW: What’s one thing you’ve learned about relapsing MS that you wish you could tell your younger self when you were newly diagnosed?
Sigler: Through my recent collaboration with Novartis I've really been able to focus on telling my story and having a voice in my treatment and in my journey.
For so long, I assumed that just too much information would be overwhelming. I didn't want to know. But what I've learned over time is asking the questions with my MS specialist, being involved in what type of treatment I felt was right for me taking into consideration my life, my dreams, my circumstances — and not just feeling like I'm across the table being told what to do, and getting some control, getting some independence back into my life when it came to my relapsing MS really changed the game for me.
One of the resources that we created together was a treatment decision guide because it's incredibly overwhelming, especially if you're newly diagnosed.You don't know the questions to ask. You have all of these what-ifs and scenarios racing through your head, so to give somebody detailed questions to ask their healthcare provider so they can make an informed decision together with their MS specialist, taking into consideration all that their life brings, is incredibly important.
Learning that my voice mattered allowed me to find the treatment that was right for me because I knew that, because of my lifestyle, because of my job, I needed a medication that I could self-administer. Now, I take it once a month. I pick the day of the month, I pick the time of the day and it allows me to have some control in an otherwise really uncontrollable disease.
Read: Newly Diagnosed with MS? Here Are 10 Questions to Ask Your Neurologist. >>
HW: How has midlife changed your experience with relapsing MS, if at all?
Sigler: I think midlife has changed my experience with everything! I think you just have to love having experience under your belt and don't sweat it. Midlife almost allows me to sit in the hard stuff a little better, like I'm not trying to bypass any negative emotions because I know there's another side to them.
Another thing that I've worked on recently is learning to take three steps: reflect, reframe, reach out. Being able to really sit in my grief, in my sadness and in my fear, knowing that it's important for me to process these emotions and that they're valid, and they're coming up for a reason. Then, being able to have the acceptance around them that I know I can't change my circumstances but I know what I want to do, what I aspire to. So, what are the pivots — the reframing — that I have to do to make that happen?
And then asking for help. It's so hard, especially for women, to ask for help. We want to be independent. We want to be able to do it all on our own, but we can't unless we ask for help. We're not meant to do anything alone as human beings, and so I feel middle age has also given me just more grace and more confidence to ask for what I want and what I need.
HW: That’s a nice way of looking at midlife.
Sigler: I think it's so great that a lot of people are talking about it and being honest about all these hormonal changes. I'm constantly seeing information on social media about perimenopause — I don't think I knew that word even existed five years ago.
It’s just so wonderful that we can be unapologetic about our perimenopausal rage and we can laugh about it, we can joke about it, we can allow it, and we don’t have to feel shameful about it. We’re not hiding it — the fact that we can put all of this out there helps connect everybody and just makes this journey a lot easier.
HW: How has your podcast MeSsy helped you open up about your experience with MS?
Sigler: I think the podcasting in general that I've been able to do over the past decade has really helped me feel more comfortable finding my voice and being more honest and being more truthful.
Connecting with the MS community and sharing my unique and individual experience allows for more visibility and representation but also allows me to own my whole experience, not feeling like I have to hide parts of myself for fear of not being hired or being judged, or being limited — just being more confident that I know who I am, I know what I what I believe, I know what I want to put out in the world, I know what I'm capable of and feeling confident to be able to broadcast that has really given me the platform to to finally feel comfortable doing that.
HW: Like so many women, you’re balancing family, career and a chronic condition. How do you make time for self-care?
Sigler: A lot of that means saying no. Saying no to plans or saying no to things that you feel like you're going to have FOMO but just knowing that prioritizing your health — prioritizing your wellness — will pay off longer in the end.
It’s really just listening to my body, too, and not pushing myself past any limits if it's not pertaining to my children or work. I am very conscious of rest because then I feel like, when I'm ready to go back out into the world, I feel more energized and healthier.
Read: Tips for Living with Multiple Sclerosis (MS) >>
HW: Will we see you back on Grey’s Anatomy? Or what projects do you have coming up?
Sigler: I’m currently on Bad Thoughts, Season 2, on Netflix with comedian Tom Segura. I'm going to be in a show called Tires on Netflix with Shane Gillis, and then obviously my book just came out, so it's been a busy, wonderful year.
HW: Lastly, on a serious note: If you had to join a New Jersey-based reality show — Jersey Shore, Real Housewives of New Jersey, Mob Wives — which one would you join and why?
Sigler: I think because of where I'm at in my life, Real Housewives of New Jersey, but if I had to pick a franchise I would pick Rhode Island.
HW: What show do you think Meadow would’ve picked?
Sigler: Well, it depends which Meadow we're talking about. Seasons 1, 2 and 3, Meadow would definitely be picking Jersey Shore.
I don't think she’d pick Mob Wives — it’s too on the nose and she’s private. But I'd say later in life she'd be a Jersey housewife.
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