Self-Advocacy and Long-Term Multiple Sclerosis Management: Perspectives From Actress Jamie Lynn Sigler

Multiple sclerosis (MS) is a chronic, immune-mediated disease of the central nervous system that affects patients across physical, emotional, and social domains.¹ Actress Jamie Lynn Sigler, most known for her role on The Sopranos, is a patient living with relapsing MS and has increasingly used her public platform to describe how her understanding of the disease has evolved overtime.

Sigler recently presented her perspective as a patient living with MS during a session at the 2026 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, held May 27-29, Charlotte, North Carolina. In the session, she discussed navigating diagnosis, treatment decision-making, and the evolution of her self-advocacy over more than 2 decades of living with the disease. Morevoer, she talked about framing her experience in a broader conversation about informed, collaborative care between patients and MS specialists.

In an interview with NeurologyLive^®, Sigler further discussed how access to information reshaped her confidence in managing MS. She also talked about the role treatment adherence and self-administration have played in fitting therapy into her personal and professional life. In addition, she shared how her relationship with her MS specialist has informed her approach to shared decision-making. Sigler then addressed the impact of MS on her acting career, her decision to eventually disclose her diagnosis publicly, and strategies she has used to process the emotional aspects of living with the disease.

NeurologyLive: You’ve been living with MS since 2001. How has your understanding of the disease evolved over time, particularly as treatment options have advanced?

Jamie Lynn Sigler: I think my own understanding of the disease in general has definitely evolved and grown over time. Initially, when I was diagnosed, I was 20 years old. I was at a very particular point in my life. My life felt like it was just getting started, my career was just getting started. To get a diagnosis like that was incredibly overwhelming and really scary. Unfortunately, I thought that not knowing more information would protect me from feeling even more fearful and more uncertain.

What I've learned over time is that having information has given me more confidence and made me feel better, more hopeful, when it comes to living with MS. That just took a lot of time to learn, and it's something I really try to broadcast when it comes to the MS community, whether you're newly diagnosed or not, that actually asking questions gives you more of a sense of control and understanding of what MS means to you, and also when it comes to treatment options.

Clinicians often focus on relapse rates and MRI activity, but from your experience, which aspects of MS have had the greatest impact on you?

I think when a clinician sits across from you and gives you all the data that's necessary, especially when you're getting together to discuss treatment options, they should also prompt the patient to ask certain questions if they're not already, because this is a full-spectrum experience. You're affected physically, emotionally, your family is affected. One of the things I partnered with Novartis on was a treatment decision guide, which gives someone the questions to ask, empowering them with what to inquire about, what they deserve to know, especially when it comes to deciding on a treatment.

I've learned, especially the hard way, that you need to be consistent with your treatment, and the treatment needs to fit into your life in order for you to be consistent. For me, because of what I do, because of my career, because of a busy life and children, having the independence of self-administration with ofatumumab has been a game changer. I can take it at home or on the go, I can pick when and what time of day I take it, it's minutes of my time. Being able to do that has allowed me to be really consistent, empowered, and independent when it comes to my treatment.

Of course, with any medication, you have to acknowledge the risks that come along with it. People with active hepatitis B cannot take ofatumumab, you have to be checked for that. Fortunately, I haven't had any allergic reactions, but you obviously need to speak to your doctor about injection site reactions. It can also cause liver damage, so you have to have blood tests to check for that. If you're thinking about becoming pregnant, that's also something to discuss with your doctor.

How did you navigate continuing your acting career after your diagnosis?

It was a lot of trial and error. I kept it a secret for 15 years for fear of being limited, fired, or not hired. I needed time to understand what MS was going to be for me before I let other people decide that for me. So, for a long time, I hid it, and it was really difficult and painful at times. Even when I became public with it, there was a slow evolution of gaining confidence and, ownership over the fact that I had MS.

For a long time it was, "Yes, I have this, but we can hide it and work around it," and I've always been met with compassion and support, and I'm truly appreciative of that. But now I'm at a place where I'm just owning who I am, how I move, how I navigate the world, and I know I can give my best performance if I'm allowed to perform in this body. I think that's where real representation happens, and it's an exciting chapter for me to be able to move forward in my industry that way.

Having managed MS for more than 2 decades, how have you approached long-term disease management?

I've approached long-term disease management by really focusing on the emotional aspects of this. I've gone through a lot of ups and downs with labeling myself, my self-worth, my self-confidence, all around the disease and how it's affected me. Also, really leaving space for those difficult feelings that we sometimes want to bypass, not feeling like they'll be here forever, but acknowledging the grief, the sadness, the fear, and then taking a moment to pivot around that. That's another collaboration I'm really proud of, that I did with Novartis, if you go to reframingms.com, we did this three-step thing: reflect, reframe, reach out.

Allowing those difficult emotions to sit, giving them space, honoring them as part of this experience, and then reframing: okay, this is what I have, but I want to move forward, what do I still want to accomplish, where do I want to go with my life? Then, the hardest part for all of us, but once you do it you realize how beautiful it is: reaching out, asking for help. It's really hard to do, especially when you're living with something like this, you want to be independent, you want to do it all on your own.

One of those things for me was having a cane. I didn't want to, because it meant I was at a certain level of this disease. It meant I wasn't winning, that all of my training and physical therapy wasn't working. But I was making my life so much harder by not just having a mobility aid and allowing myself to walk further and move more independently. So that was one of my "reach outs." I think this is not a one-and-done thing, you continue to come back to it whenever you face a new challenge or obstacle, but that's true for anybody in life, MS or not. We're always having to pivot and adjust to things in life; it's just part of the experience. We all have things that bring us to that fork in the road, and I'm grateful I'm able to share what has helped me in those times.

Do you feel that sharing your experience has changed how MS is perceived by the public or even in the medical community?

Gosh, I hope so. With the relationship I've been able to have and continue to grow with the MS community, I'm just one face, one story, one voice but I'm so happy to use my platform to share my experience of living with this for 25 years. I think I have some stories and moments under my belt that people could relate to. I also have, I believe, one of the best MS specialists in the world, whom I simply adore, and I really cherish our relationship and all he's taught me about my voice mattering, my having a say in this MS journey, and that we're a team. I'm really happy to share that, because I've seen how impactful it's been for me, and I know how much it could help other people in their journey with MS.

Editor’s Note: Jamie Lynn Sigler is a paid spokesperson for Novartis.

Transcript edited for clarity. Click here for more coverage of CMSC 2026.

REFERENCES
1. Lerede A, Rodgers J, Middleton RM, Hampshire A, Nicholas R; UK MS Register Research Group . Patient-reported outcomes in multiple sclerosis: a prospective registry cohort study. Brain Commun. 2023;5(4):fcad199. Published 2023 Aug 20. doi:10.1093/braincomms/fcad199