You probably recognize actress Jamie Lynn Sigler from her role as Meadow in the award-winning drama. the sopranos.
On screen, the life of the Sopranos family was complicated and often shrouded in secrets. Off camera, Sigler was dealing with a secret of her own. She was living with relapsing multiple sclerosis (RMS). RMS is a chronic condition that affects the brain, spinal cord and optic nerve and can 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, fearing that people would not want to work with her.
Now in her new book So it is… a memoir of acceptance and hope.Sigler takes readers behind the scenes of the shoot. sopranos, Her multiple sclerosis diagnosis and life experiences that led her to become an advocate for the multiple sclerosis community.
We spoke with Sigler about managing MS, memoir, and the surprising privileges of middle age.
This interview has been lightly edited for clarity and length.
Healthy women: For those who haven’t read your memoir, can you explain how relapsing multiple sclerosis (RMS) has affected your life?
Jamie Lynn Siegler: I was 20 years old when I was diagnosed, and as you can imagine at that young age, my reaction to the diagnosis was fear.
I was overwhelmed. I had no examples or people to look to to see who actually had this disease, so I responded by denying it, shutting myself down, keeping it secret, and not asking questions. I thought the less I knew, the safer I would feel.
Pre-MS I was already someone who felt insecure, fearful, and labeled as inadequate and unworthy, and the illness actually amplified those feelings.
Over the years, I have carried this heavy burden of guilt and shame for keeping the secret, for contracting the disease, for allowing myself to go through this alone in my head and for creating a very difficult existence.
Thankfully, I eventually found myself expanding my circle beyond my immediate family enough for my friends and loved ones to remind me that MS did not define me, did not rob me of my worth, and that I deserved to live a life of truth and authenticity. Then I had children, and I was ready to face my biggest fears: disclosing my MS, canceling living in secret, and finally facing what it was like to live in my truth and share authentically and vulnerably. Then, healing not only of the body but also of the self becomes possible.
I think what MS ultimately did for me was an invitation to look inward. It felt devastating, but now I see it as a gift that allowed me to truly heal parts of myself that I otherwise would not have given myself time to do.
in her dressing room
hardware: Why was it important for you to write this memoir now?
Siegler: I have gone through many stages not only of this disease, but of life in general, and through my advocacy and becoming a public figure, I have learned that we all experience pain, we all experience struggle, emotions are universal that we all feel, and how isolated we can feel within them. Therefore, the more you open up and share your vulnerabilities, the less lonely you will feel and the less lonely you will allow others to feel too.
As I talked about my RMS journey, I thought this would only resonate within the multiple sclerosis community, but every day I hear people say, “I don’t have multiple sclerosis, but I feel you, I understand what you’re saying, and even though our lives are vastly different, I see myself in so many ways in your story.” Even adults said that to me, and it was really nice.
I feel much more confident not only in my skin but also in my voice. I found my voice to be imperfect and flawed, and sometimes to say that it wasn’t okay, that I was afraid, or that I was sorry. Being able to accept all parts of myself has allowed me to become a more confident person moving forward, to gain more grace and forgiveness about life in general, and most importantly, about myself.
hardware: What is one thing you learned about relapsing multiple sclerosis that you would tell your younger self when you were newly diagnosed?
Siegler: My recent collaboration with Novartis has allowed me to focus on telling my story and giving my voice a voice in my treatment and journey.
For a long time, I thought too much information would be overwhelming. I didn’t want to know. But what I’ve learned over time is to ask my MS specialist questions and engage with what type of treatment he thinks is right for me, taking into account my life, dreams, and circumstances. Being told what to do from across the table, gaining control, and regaining some independence in my life with relapsing multiple sclerosis has really changed the game for me.
One of the resources we created together was a treatment decision guide. This is incredibly burdensome, especially if you are newly diagnosed. You may not know what questions to ask. With all these assumptions and scenarios running through your head, it’s very important to give someone detailed questions to ask their healthcare provider so they can make informed decisions with their MS specialist, taking into account everything their life brings.
Knowing that my voice matters helped me find the treatment that was right for me. Because I knew that because of my lifestyle and job, I needed medication that I could self-administer. Now I get it once a month. I choose the day of the month, I choose the time of day, and this gives me some control over a disease that is actually out of my control.
Read: Newly Diagnosed with MS? Here are 10 questions to ask your neurologist. >>
hardware: How has your experience with relapsing multiple sclerosis changed in midlife?
Siegler: I think middle age has changed my experience of everything! I think you should just love getting experience under your belt and not sweat it. Midlife has helped me cope better with difficult tasks, such as not trying to bypass negative emotions because I know there’s another side to them.
Another thing I’ve been working on recently is learning how to do the three steps: reflect, reframe, and approach. Being able to truly sit with the sadness, sorrow, and fear, and knowing that it is important to process these emotions and know that they are valid, and that there is a reason why they appear. Then, I can acknowledge to those around me that although I cannot change my circumstances, I know what I want to do and what I aspire to be. So what is the central point or reorganization I need to do to make this happen?
And then asks for help. It’s so hard to ask for help, especially for women. We want to be independent. We want to be able to do everything ourselves, but we can’t do that if we don’t ask for help. As humans, we cannot do anything alone. So I think middle age has given me more grace and confidence to ask for what I want and need.
hardware: That’s a good way to look at middle age.
Siegler: I think it’s really good that more people are talking about it and being honest about all these hormonal changes. I am constantly seeing information about perimenopause on social media. Five years ago, I don’t think I even knew that word existed.
It’s so wonderful that we can laugh unapologetically about our menopausal anger, we can joke about it, we can allow it, and we don’t have to feel ashamed about it. We don’t hide this. Being able to get all of this out there helps connect everyone and makes this journey much easier.
hardware: How about your podcast? crummy Has it helped you open up about your experience with MS?
Siegler: I think podcasting in general, which I’ve been able to do over the last 10 years, has really helped me become more comfortable finding my voice, being more honest, and being more honest.
Connecting with the MS community and sharing my unique, personal experiences not only allows for more visibility and representation, but also allows me to own my entire experience rather than feeling like I have to hide parts of myself for fear of not being hired, not being evaluated, or being limited. Just knowing who I am, what I believe in, knowing what I want to put out into the world, knowing what I’m capable of, and having the confidence to broadcast it, I finally have a platform where I can work comfortably.
hardware: Like many women, you are balancing family, career, and chronic illness. How do you make time for self-care?
Siegler: A lot of that means saying no. Just saying no to plans or doing things that would give you FOMO means prioritizing your health, knowing that putting it first will pay off in the long run.
It’s really just listening to my body and not pushing any limits unless it’s about my kids or work. I am very conscious of rest. Because when you’re ready to go out into the world again, you feel more energized and healthier.
Read: Advice for people with multiple sclerosis (MS) >>
hardware: See you next time Grey’s Anatomy? Or what project are you preparing?
Siegler: I am currently bad ideaSeason 2, on Netflix with comedian Tom Segura. I’m scheduled to appear on a show called ‘I’. tire I just published a book on Netflix with Shane Gillis, and it’s been a really busy and wonderful year.
hardware: Lastly, and in all seriousness, if you had to participate in a New Jersey-based reality show — Jersey Shore, Real Housewives of New Jersey, Mob Wives — Which company would you like to join and why?
Siegler: Because of where I am in my life. The Real Housewives of New JerseyBut if I had to choose a franchise, I would choose Rhode Island.
hardware: Which show do you think Meadow would have chosen?
Siegler: Well, it depends which Meadow we are talking about. Seasons 1, 2, 3, Meadow would definitely be my pick jersey shore.
I don’t think she’ll choose mafia wife – Too on the nose and she is private. But I would say she would eventually become a Jersey Housewife.
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