Jamie Lynn Sigler talks multiple sclerosis, a new memoir, and the search for acceptance in midlife

You probably know actress Jamie Lynn Sigler from her role as Meadow in the award-winning drama “The Sopranos.”

On screen, the lives of the Sopranos family were complicated and often shrouded in mystery. Off camera, Sigler was dealing with a secret of her own: She suffered from relapsing-remitting multiple sclerosis (RMS) — a chronic disease that can affect the brain, spinal cord and optic nerves, causing unpredictable flare-ups.

Siegler was just 20 years old when she was diagnosed and was still filming the popular TV show. She kept her diagnosis to herself for 16 years, partly 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 filming 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 dealing with MS, her memoir, and the surprising benefits of midlife.

This interview has been lightly edited for clarity and length.

Healthy women: For those who have not read your memoir, can you describe how relapsing-remitting multiple sclerosis (RMS) impacted your life?

Jamie Lynn Sigler: I was 20 when I was diagnosed and my reaction to the diagnosis was, as you might imagine at such a tender age, fear.

I was overwhelmed. I had no real example or anyone to turn to who knew who was living with the disease, and I responded 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.

Even before MS, I was plagued by insecurities and fears and had placed labels on myself that I wasn’t good enough and not worthy, and the disease only exacerbated these feelings.

Over the years, I carried a heavy burden of guilt and shame for keeping the secret, for suffering from the disease and for allowing myself to go through this alone in my own head and forging a very difficult existence for myself.

Luckily, at some point I found myself at a time when I had expanded the circle beyond my immediate family just enough for my friends and 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 was ready to face my greatest fear, which was going public with MS and undoing life in secret, and finally coming to terms with what it’s like to live in your truth and share authentically and vulnerably, and that then allows for healing, not just of the physical body, but of the self.

I think what MS ultimately meant to me was an invitation to look within – to stop myself in ways that felt devastating, but now I also realize that it was a gift to be able to truly heal parts of myself and myself that I might not have given myself the time to do otherwise.

in her dressing room

HW: Why was it important for you to write this memoir now?

Sigler: I have been through so many stages of not only this disease but of life in general, and through my involvement and through my work as a public figure, I have learned that we all experience pain, we all have difficulties, and that emotions are something universal that we all feel – and how isolated we can feel in 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 too.

When I talked about my RMS journey, I assumed it would only resonate with the MS community, but every day people tell me, “I don’t have MS, but I feel you and understand what you’re saying, and I recognized myself in your story in so many ways, even though our lives are very different.” Grown men told me that too, which was so nice.

I notice that I feel much more confident not only in my skin but also in my voice – I found my voice in just being imperfect and flawed and sometimes saying that I’m not okay, that I’m scared or that I’m sorry – the ability to accept all parts of myself has allowed me to be a more confident person moving forward and it has allowed me to feel more grace and forgiveness for life in general, but most importantly for myself.

HW: What did you learn about relapsing MS that you wish you could tell your younger self when you were newly diagnosed?

Sigler: My recent collaboration with Novartis has allowed me to really focus on telling my story and having a voice in my treatment and journey.

For a long time I assumed that too much information would be overwhelming. I didn’t want to know. But what I’ve learned over time is asking questions of my MS specialist, being involved in the type of treatment that I feel is right for me, taking into account my life, my dreams, my circumstances – and not just feeling like I’m being told what to do, and gaining some control and getting some independence back into my life when it comes to my relapsing MS has really changed the game for me.

One of the resources we created together was a treatment decision guide, as this is incredibly overwhelming, especially if you are newly diagnosed. You don’t know what questions to ask. All of these “what if” scenarios are running through your head. Therefore, it is incredibly important to ask someone detailed questions of their doctor so that they can work with their MS specialist to make an informed decision, taking into account everything that their life brings.

When I learned that my voice was important, I was able to find the treatment that was right for me because I knew that because of my lifestyle and work, I needed a medication that I could self-administer. Now I take it once a month. I choose the day of the month, I choose the time of day and that gives me the opportunity to have some control over an otherwise truly uncontrollable disease.

Read: Newly diagnosed with MS? Here are 10 questions to ask your neurologist. >>

HW: How has your experience with relapsing MS changed in midlife, if at all?

Sigler: I think midlife has changed my experience with everything! I think you just have to love having experience and not sweat it. Midlife almost allows me to handle the difficult things a little better, like not trying to avoid negative emotions because I know there’s another side to them too.

Another thing I’ve been working on lately is learning three steps: Reflect, Reframe, Reach Out. Being able to really sit in my grief, in my sadness, in my fear, and know that it’s important for me to process these emotions and that they’re valid and that they’re coming up for a reason. Then I need to be able to feel the acceptance around me 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 realignments – that I need to do to make this happen?

And then ask for help. It’s so hard, especially for women, to ask for help. We want to be independent. We want to do everything on our own, but we can’t if we don’t ask for help. As humans, we’re not meant to do anything on our own, and so I feel like middle age has also just given me more grace and more confidence to ask for what I want and what I need.

HW: That’s a nice way to look at midlife.

Sigler: I think it’s great that a lot of people are talking about it and being honest about all these hormonal changes. I see information about perimenopause all the time on social media – I don’t think I knew that word even existed five years ago.

It’s just so wonderful that we can’t apologize for our perimenopausal anger, we can laugh about it, we can joke about it, we can admit it, and we don’t have to be ashamed of it. We’re not hiding it – the fact that we can publish all of this helps connect everyone and just makes this journey a lot easier.

HW: How has your podcast MeSsy helped you talk openly about your experiences with MS?

Sigler: I think the podcasting in general that I’ve been able to do over the last decade has really helped me find my own voice and be more honest and 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 entire experience without feeling like I have to hide parts of myself for fear of not being hired or judged or limited – I just feel more confident that I know who I am, I know what I believe in, I know what I want to put out into the world, I know what I’m capable of, and the confidence to be able to broadcast has really given me the platform, me to finally feel good.

HW: Like so many women, you have to juggle family, work and a chronic illness. How do you make time for self-care?

Sigler: A lot of this means saying no. Saying no to plans or things that you feel will give you FOMO, but simply knowing that prioritizing your health – your well-being – will pay off longer in the end.

It’s really just about listening to my body and not pushing myself past any boundaries when it’s not about my kids or my work. I pay a lot of attention to rest because when I’m ready to go out into the world again, I feel more energized and healthier.

Read: Tips for living with multiple sclerosis (MS) >>

HW: Will we see you again on Grey’s Anatomy? Or what projects do you have coming up?

Sigler: I’m currently watching the second season of “Bad Thoughts” with comedian Tom Segura on Netflix. I’m going to be starring in a Netflix show called Tires with Shane Gillis, and then of course my book just came out, so it’s been a busy, wonderful year.

HW: Finally, 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 I’m in my life right now, Real Housewives of New Jersey, but if I had to choose a franchise, I would choose Rhode Island.

HW: Which show do you think Meadow would have chosen?

Sigler: Well, it depends on which meadow we are talking about. In seasons 1, 2, and 3, Meadow would definitely choose Jersey Shore.

I don’t think she would choose Mob Wives – it’s too intrusive and she’s private. But I would say that later in life she would be a housewife in Jersey.

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