LIVING HER TRUTH

'Finding Freedom Beyond Fear'
Exclusive Interview with Jamie Lynn Sigler
Featured in 'Innerviews'
Hosted by Allié McGuire

​Keeping her MS diagnosis private once gave Jamie Lynn Sigler a sense of protection, but eventually, the secrecy became another form of suffering. By sharing her truth, she discovered not only freedom, but an entire community waiting to welcome her. Here, she speaks openly about grace, treatment decisions and learning to let her own voice be the loudest in the room.

ALLIÉ: You and I have a few different things in common, one of them being MS. For so long, you carried MS privately. What finally made you say, “Okay, I’m ready to talk”?

JAMIE LYNN: A lot of things. I think a lot of things just sort of came to a head. At that point, I had been living with MS privately for 15 years. I wasn’t sharing it with many people in my personal life, and I certainly wasn’t sharing it with the industry I was in, for fear of being fired, not hired or limited before I could even explain what my own limits were.

For quite some time, if nobody knew, I could pretend that it didn’t exist. But at that point, the MS had progressed to a level where I couldn’t quite hide the way it was affecting me physically. I was having to lie and make excuses for it all the time.

​I also had a very young son. I started thinking about the kind of example I would be setting for him. At a certain point, would I be asking him to lie about what was going on with his mom? Was that what I wanted to teach him about the world, about how to present himself and how to feel about himself and his differences within it?

I think I was also just exhausted from living a lie and feeling all of this shame and guilt. It added an entirely unnecessary layer of suffering to what I was already experiencing because I was living with MS.

I finally reached a point where I felt ready to do the thing I was most afraid of, which was simply to tell people, “This is what I’m living with.”

I also think I had finally learned how to let love and support in. I felt brave enough to do that.

ALLIÉ: I’m happy for you and thankful that you were able to find the opportunity when it felt right for you. I love that you share that, because there is a time that is right for everyone.

JAMIE LYNN: Absolutely. There is a grace period when people need to come to terms with this. There is no single right way to do it.

I was actually very shocked when I first came out about it and suddenly realized that I hadn’t had a community, and now I did. The entire MS community reached out. So many people said, “I’m living in secret too. I haven’t told anybody either.”

It isn’t just people in the entertainment industry. It is people from all walks of life.

I think that happens for a lot of reasons. You are trying to come to terms with what this means for you, and you are also afraid of what other people are going to think when they know this about you.

Over time, I have learned that I used to resist information. I thought the less I knew about MS, the less I would spiral about it. It is actually the opposite. The more I know about this disease, the more empowered I feel when making decisions for myself and determining how I want to move forward, whether that involves my treatment, my therapies or anything else.

Information is power. It gives me more confidence moving forward.

ALLIÉ: MS can be so invisible, which allowed you to live privately with it for so long. Jamie Lynn, what do you wish people could see?

​JAMIE LYNN: I wish people could understand all of the things we are processing at one time.

What I have learned through sharing my story is that we are all going through something, MS or not. We are all facing obstacles. We all have things we need to confront about ourselves, things we want to deny, things we want to hide and things we wish were different each and every day.

We have to allow ourselves to process the necessary emotions.

One of the things I created through my partnership with Novartis was a three-step guide: Reflect. Reframe. Reach Out. That is a process I have learned to use for myself when the overwhelming feelings come.

We often want to bypass the grief, sadness or depression. We think, “I don’t have time for that. I don’t want to feel that.” But we need to allow space for it.

Whether it is with a friend, a therapist, a journal or someone else, we need to be able to say, “I’m feeling scared. I’m feeling sad. I’m feeling angry. I’m feeling frustrated.”

You have to allow yourself time to process those emotions.

Then you reframe. It is a form of acceptance. You can say, “I have this, but how can I move forward in my life? What are my needs? What do I want? What are my dreams?”

Then comes reaching out, which is often the hardest part. It means asking for help. We all want to remain independent. We don’t want to have to ask for help, but sometimes asking for help is exactly how we move forward.

One of those things for me was accepting that I needed to use a cane sometimes. To me, the cane had become a sort of barometer for how I was doing and how well, or not well, I had fought this disease.

But using a cane has allowed me to move more independently. It allows me to walk longer and participate more.

I think anyone can relate to that, because we all come up against things. With an invisible illness, we still show up. We still want to show up as a mom, a friend, a sister, a daughter or a wife. No one necessarily knows what we are going through just to get there.

​When you begin acknowledging that for yourself and giving yourself the space to process it, everything becomes a little easier.

ALLIÉ: It is so much easier to give other people grace than it is to give ourselves grace.

JAMIE LYNN: It’s hard. I don’t know why we don’t do that instinctively.

ALLIÉ: I love that your three steps begin with “Reflect,” because I think so many people are quick to redirect or change something before they have really processed it or accepted it. Yes, I am sad. Yes, I am grieving. And it is okay to be. You have to grieve some of the things you have lost. That’s okay. I love that reflection is where you begin.

Let’s talk about where we are right now. What does it mean to be here at CMSC with Novartis and to bring your story into this world of science?

JAMIE LYNN: When I was diagnosed 25 years ago, there were maybe two treatment options on the market. There wasn’t much of a discussion around what I was going to do. It was essentially, “You can take an injection every day or once a week. Which one do you want to pick?”

Now, there is a vast landscape of different types of treatments. We also understand how important the patient-doctor relationship is.

My MS specialist once told me that my voice needed to be the loudest in the room. When he said that, I felt this sense of ownership, not only over my treatment choices but over my entire journey with relapsing MS.

My voice mattered.

It was important for my doctor to understand what my needs were, what my goals were, what my life looked like and what my reality was. All of those things needed to be taken into consideration.

That is what I would want to broadcast to everybody here.

It is also what led me to choose KESIMPTA. It has given me a lot of independence. I am able to self-administer my medication once a month at home. I can take it while I am traveling, and I have flexibility around the day and time I take it.

​Learning how to equip myself with the right questions, and having my doctor teach me how to do that, has been incredibly important.

I also teamed with Novartis on a Treatment Decision Guide. It includes questions and information designed to help people feel more confident when speaking with their doctors, because a lot of the time, we simply don’t know what questions to ask.

Living with this for 25 years has given me a lot of experience that I can now share.

When I speak about a medication, I also have to acknowledge the risks associated with it. People with an active hepatitis B infection should not take KESIMPTA. Before beginning treatment, patients are tested for hepatitis B, and their doctors may conduct additional blood tests before and during treatment. KESIMPTA can cause serious infections, liver damage, injection-related reactions and injection-site reactions. People who have had an allergic reaction to ofatumumab or a life-threatening injection-related reaction to KESIMPTA should not take it.

Those risks need to be discussed with your doctor. I want to be responsible when talking about them, because understanding the risks associated with each treatment is an important part of making an informed decision.

ALLIÉ: Absolutely. It starts with understanding yourself and understanding the treatment.

JAMIE LYNN: That’s right. It is also about understanding your needs and how a treatment fits into your life.

The fact that there are now so many different treatment options, and that we can better understand what is right for us, is empowering. It gives you some sense of control within a disease that can otherwise feel very uncontrolled.

ALLIÉ: Again, we come back to that word: agency. That is so important, especially for someone who has been newly diagnosed, or perhaps someone who is quietly struggling. For them, what do you hope your story gives them?

JAMIE LYNN: I hope it helps them feel more comfortable living in their truth.

I hope they don’t allow themselves to be defined by the things that happen to them, by a disease they have or by a particular situation.

I hope they can find acceptance and grace for themselves through their struggle and through their pain.

Most of all, I hope they know they don’t have to go through any of it alone.

​ALLIÉ: I think the way you share your story gives that to people. Sharing is caring, right? There is one more thing I want to ask you about, and that is your memoir, And So It Is...: A Memoir of Acceptance and Hope. What do those two words, acceptance and hope, mean to you now?

JAMIE LYNN: Acceptance was something I bumped up against for a very long time.

I would say it is only within the past couple of years that I have really begun accepting my circumstances, who I am, how I think and how I look at the world.

I judged myself so harshly for so much of my life. I had this negative narrator that came along with me. We all have that person. We all have that voice in our heads. I let that voice steer the ship for a long time.

When I realized it was there to help me survive but didn’t have to be the one in charge, I was able to offer myself more grace and more forgiveness.

Accepting who I am, how I am wired, how I came into this world, where I come from, my ancestors, everything I have been taught and everything I have experienced has allowed me to soften. It has allowed me to readjust and move forward, knowing I am not always going to get it right, but that I will learn something each time I don’t.

I think that is where hope comes in. Hope is knowing the story isn’t over yet. You don’t know what is waiting around the corner.

Writing my memoir allowed me to see, even more clearly than I had before, the synchronicities in life and the universe at play. You never know what lesson, gift or beauty may be waiting on the other side of something.

I have had a really colorful life, with many moments like that. It feels like a privilege to be able to share it. ∎

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Explore the Treatment Decision Guide: TreatmentDecisionGuide.com
Check out Reframing MS: www.kesimpta.com/life-with-rms/reframing-ms 
Find & follow Jamie Lynn on Instagram: @jamielynnsigler
Get her book: www.andsoitisbook.com