You probably recognize actress Jamie Lynn Sigler from her role as Meadow in 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 cause unpredictable flare-ups.
Siegler was just 20 years old when she was diagnosed and was still filming the hit TV show. For 16 years, she kept her diagnosis to herself, in part because she was afraid people wouldn’t want to work with her.
Now, in her new book, And so it is … A Memoir of Acceptance and HopeSigler takes readers behind the scenes of her time on set The Sopranos, her MS diagnosis and the life experiences that led her to become an advocate for the MS community.
We spoke with Sigler about managing MS, her memoir, and the surprising perks of middle age.
This interview has been lightly edited for clarity and length.
Healthy Women: 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 had no example or anyone to look up to that I knew who was living with the disease, and I reacted by living in denial, shutting down, keeping it a secret and no questions asked. I figured the less I knew the safer I would feel.
Before MS I was already someone who was full of insecurities, fears, and labels that I put on myself that I wasn’t good enough and that I wasn’t worthy, and the disease really amplified those feelings.
Over the years, I carried this great burden of guilt and shame that I kept it a secret, that I had the disease and allowed myself to go through it in my head and create a very difficult existence.
Fortunately, I eventually found myself at a time where I had expanded the circle beyond my immediate family enough for my friends and loved ones to remind me that MS did not define me—it did not devalue me—and that I deserved 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 share authentically and vulnerably and then that allows healing, not just of the physical body but of yourself.
I think what MS ended up being for me was this invitation to look inside — to stop me in my tracks in a way that felt devastating, but now I see it was a gift to be able to really heal parts of myself and myself that I might not otherwise have given myself the time to do.
in her dressing room
HW: Why was it important for you to write this memoir now?
Sigler: I’ve been through so many stages of not only this disease, but life in general, and I’ve learned through advocacy and public speaking 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 you open up and the more you share 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 with the MS community, but every day I have people say, “I don’t have MS but I feel you and understand what you’re saying and saw myself in your story in many ways, even though our lives are very different.” I’ve had grown men tell me too, which was so great.
I find that I feel much more confident not only in my skin but in my voice – I found my voice in just being imperfect and flawed and saying sometimes that I’m not okay, or that I’m afraid or sorry – being able to accept all parts of myself has allowed me to be a more confident person moving forward and has allowed me to have more grace for my life.
HW: What is one thing you’ve learned about relapsing multiple sclerosis that you wish you could have told your younger self when he was newly diagnosed?
Sigler: Through my recent partnership with Novartis I have been able to really focus on telling my story and having a voice in my treatment and journey.
For so long, I assumed that too much information would be overwhelming. I didn’t want to know. But what I learned over time is asking questions with my MS specialist, engaging in what kind of treatment I felt was right for me, taking into account my life, my dreams, my circumstances — and not just feeling told what to do and taking some control, bringing some independence back into my life when it came to relapsing MS, it really changed the game for me.
One of the resources we created together was a treatment decision guide because it is incredibly overwhelming, especially if you are newly diagnosed. You don’t know the questions to ask. You have all these what-if scenarios running through your mind, so it’s incredibly important to ask someone detailed questions to ask their healthcare provider so they can make an informed decision together with their MS specialist, taking into account everything their life is bringing.
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 administer myself. Now, I take it once a month. I pick the day of the month, I pick the time of day, and it allows me to have some control over an otherwise truly uncontrollable disease.
Read: Recently Diagnosed with Multiple Sclerosis? Here are 10 questions to ask your neurologist. >>
HW: How has middle age changed your experience with relapsing multiple sclerosis, if at all?
Sigler: I think middle age has changed my experience of everything! I think you just have to like having experience and not sweat it. Middle age almost allows me to sit through the hard stuff a little better, like I’m not trying to push past any negative feelings because I know there’s another side to them.
Another thing I’ve been working on recently is learning to do three steps: reflect, reframe, approach. To be able to really sit in my sadness and grief and fear, knowing that it is important for me to process these feelings and that they are valid, and they come for a reason. Then to be 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 points – the reframing – that I need to do to make this happen?
And then asking for help. It is so difficult, especially for women, to ask for help. We want to be independent. We want to be able to do everything ourselves, but we can’t unless we ask for help. We’re not meant to do anything on our own as humans, and so I feel like middle age has also given me more grace and more confidence to ask for what I want and what I need.
HW: This is a nice way to look at middle age.
Sigler: I think it’s so great that so many people are talking about it and being honest about all these hormonal changes. I see information on social media about perimenopause all the time — I don’t think I knew that word existed five years ago.
It’s just so wonderful that we can be unapologetic about our perimenopause rage and laugh about it, joke about it, allow it and not have to feel ashamed about it. We’re not hiding it – the fact that we can put all of this together helps connect everyone and just makes this journey that much easier.
HW: How is your podcast? Messy helped you uncover 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 more honest.
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 without feeling like I have to hide parts of myself for fear of being hired or judged or limited — I’m just more confident that I know who I am, I know what I believe, I know what I want to give to the world. I am the platform to finally feel comfortable doing that.
HW: Like many women, you balance family, career and a chronic condition. How do you find time for self-care?
Sigler: A lot of it means saying no. Saying no to plans or saying no to things that feel like you’re going to have FOMO, but just knowing that prioritizing your health—prioritizing your wellness—will pay off more in the end.
It’s really just about listening to my body, too, and not pushing any boundaries unless it’s about my kids or work. I am very conscious of rest because then I feel that, when I am ready to go back into the world, I feel more energetic and healthier.
Read: Tips for living with multiple sclerosis (MS) >>
HW: We will see you again Grey’s Anatomy? Or what projects do you have to do?
Sigler: I am currently Bad ThoughtsSeason 2, on Netflix with comedian Tom Segura. I will be in a show called Tires on Netflix with Shane Gillis, and obviously my book just came out, so it’s been a busy, great year.
HW: Finally, on a serious note: If you had to be on 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 am in life, Real Housewives of New Jerseybut if I had to pick a franchise I would pick Rhode Island.
HW: Which show do you think Meadow would choose?
Sigler: Well, it depends on which Meadow we are talking about. Seasons 1, 2 and 3, Meadow would definitely pick Jersey Shore.
I don’t think he would choose Mob wives — is very on the nose and private. But I would say that later in life she would be a housewife in Jersey.
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