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Jamie-Lynn Sigler on Her Secret Battle With MS: “Asking for help is noble”

Inspirer is celebrating inspirational and influential women in film with in-depth interviews. This project will share the stories behind the trailblazers and pioneers who paved the way for females in the arts. 

When actress Jamie-Lynn Sigler was first diagnosed with multiple sclerosis (MS) 15 years ago, it came as a shock. She was 20 years old and starring in one of the most critically acclaimed shows on television. She was on top of the world. She didn’t really feel sick.

MS is an immune disease affecting the central nervous system, damaging nerve cells, resulting in an array of symptoms. The cause is still unknown, and the progress and severity of its course in any individual can be unpredictable. Though modern medical advances have been shown to significantly manage symptoms, there is no known cure.

Sigler was diagnosed after experiencing a tingling sensation in her feet and legs that she thought was associated with Lyme disease, which she had been managing for a year. Like many people, she immediately assumed that having MS meant that she would end up in a wheelchair. She was 20 years old; she wanted to keep her job, her freedom, her youth. So, for 15 years, she kept her disease a secret.

This January, she decided to go public with her battle. After years of coming to terms with it, she realized that she had nothing to be ashamed about, that sharing her story might inspire others to do the same. We caught up with the “Sopranos” alum to talk more about raising awareness for MS, allowing yourself to be vulnerable, and finding strength in asking for help.

How did you first find out you had MS?
When I was 19, I had a lot of tingling in my feet, sort of like that feeling of pins and needles. Over the course of a couple of days, the sensation was rising higher and higher in my legs. Four or five days into it, I felt like something was wrong, so I went to the hospital and was told I had Lyme disease. I was treated with antibiotics for a couple of weeks and everything seemed fine. About a year and a half later, I had a bit of a relapse. I thought it was just the Lyme disease again and I would be treated with antibiotics, but I was diagnosed with MS instead.

It was a big shock. Here I was, 20 years old, feeling healthy and having my whole life ahead of me and so much going for me and so much going on. It was a hard pill to swallow, to be given that diagnosis at such a young age. With my little-to-no knowledge about what the disease meant for my life, I just assumed it meant I would be in a wheelchair at some point. Fortunately for me, I had a great doctor at the time who told me that wasn’t the case, and there was no reason to believe I couldn’t live a full life for a very long time. This wasn’t going to kill me, and if I stayed on top of it and ahead of it, I could still pursue my dreams and all I wished to accomplish in this lifetime.

That’s a big misconception about MS — that you’re going to be in a wheelchair and that’s it. What other misconceptions about the disease would you like to clear up?
It’s very much a spectrum disease. No two people have the same MS. It’s like a fingerprint; it’s different for everybody. What’s unfair, which comes along with the disease, are the limitations that others can put on you, as opposed to you telling other people what your limitations are. That was a big part of my fear and what was holding me back from coming out about it. I thought people would limit me and assume what I could and couldn’t do, and that would be that. I wanted to get to a place where I really understood my body, let the disease manifest and see how it would affect me and go from there.

It’s a day-to-day fight. You have to stay on top of it. It is very much is a disease that, if you let it take its course, it will. But, if you stay on top of it with medication, a healthy lifestyle — keep moving, even when it’s hard — and, I believe, truly, a positive attitude, there’s a lot more that you can do. You’ll surprise yourself with how much you can overcome when you have this disease. It’s hard to sit back and think you’re not going to do things when you’re fully cognitive. Nothing has affected my brain or my skills as an actress. Obviously, there’s physical things that I deal with, but it’s hard to sit back and give up when you feel like you still have so much to give.

Being so young, what was your initial reaction like? How did you come to terms with everything?
Initially, after the diagnosis, I still wasn’t feeling any real physical effects. So, I sort of rebelled against it. Because I didn’t feel sick and I felt like they were wrong, I wasn’t good about taking my medication. In hindsight, I think if I was more regular with my medication then, maybe things wouldn’t be exactly how they are for me today. Maybe they’d be a little bit better. But, it was a hard pill to swallow.

About four years after my diagnosis, things started to really affect me. Like with anybody, stress can be a killer. I was going through a divorce, and that’s when the disease decided to really rear its ugly head. I started to have limitations on my right side, in my right leg, and some bladder issues. It was harder to hide and keep a secret when those things were happening to me. But, I figured out a way. I was pretty resourceful at that age. It was hard. I was young, and that’s the time — being in your 20s — when you’re carefree and you can make mistakes. You can go out and you can drink and party with your friends and dance all night. While I did do that from time to time, I paid a price when I did. So, to live such a mindful lifestyle at such a young age was hard for me, especially going through a divorce. It took awhile for me to figure out a balance and an acceptance that this was my life for the time being.

When you kept it a secret, was that difficult? Were there certain people with whom you were comfortable opening up to?
Yeah, every year or so, I would feel a little more comfortable telling more and more people. But when I told people, that also meant that it was real. For me, if I didn’t talk about it, I could sort of ignore it.

I was also fearful. I was fearful that it meant that my career would be over, that no one would want to hire me or work with me. It meant a lot of negative things, but I have had nothing but the opposite since I’ve found the courage to be honest and open with my diagnosis. I realized it doesn’t define me. It’s not everything about me; it’s a part of me.

I worked on a movie recently and the director said to me, “You know, everybody has something, Jamie. This just happens to be your something, and it’s okay.” That was something that I really took to heart and I think about a lot, still to this day.

That’s very true — when you’re young, it can be really hard to accept things that aren’t good news.
And, to be perfectly honest, there are still days where it’s hard for me. I’m 35. I’m still relatively young, and it’s hard for me to feel like I have to live such a careful life. I feel very old sometimes in the body that I have. There are days where I just feel really tired and sluggish and my body and muscles aren’t moving the way I want them to. It’s difficult. It really is. It’s an ongoing battle.

For so much time, I didn’t ask for help. This is one of my biggest lessons that I’ve learned: asking for help is actually pretty noble. My life became so much easier once I did reach out. It took a lot of talking to from my friends, with them saying “Jamie, call us if you’re having trouble. We’ll all help you. We’re all there for you.” I used to feel like I would slow people down, so I would pull myself out of situations or trips or fun things with my friends, and they’ve all encouraged me that they love me and want me to participate. When you ask for help and you open up to people, I’ve learned, I’m sort of releasing them from the limits that I put on them of the type of friends they would be. It’s encouraging to have a good support system to keep you moving and participating in life.

So, what kind of words of advice would you have for anyone who’s going through something similar? Maybe not MS, but some other kind of physical limitation or some other scenario where they may be afraid to ask for help?
With the diagnosis I was given, I had every right to sort of give up on life and everything. But, whether it was me being stubborn or strong, I pushed past my circumstances. That’s what I hope to give people. Whatever limitations you think you have in your life, there’s no reason to think you can’t move past it.

I’m not giving up on my job. I did a couple of times, and there was always something that pulled me back in. Now that I’m forthright and open with something that could be really scary to share with people, I’m working more consistently than I ever have. I think you’d be surprised what life has to offer when you allow yourself to be vulnerable and just really who you are.

I don’t know the reason why I have this disease. None of us know the reasons why we have certain things in our lives. But, I think they make us who we are, whether you’re an example to one person or thousands of people or millions of people. I didn’t anticipate feeling the sense of responsibility that I feel now for a whole community when I came out about this, and I really do [feel it]. Even on the days when I want to bitch and moan and complain and cry about it, I will open Twitter or Instagram or something and see one comment from someone saying something like “Thanks for making me feel better that I’m not alone.” That’s what life’s about. It’s about community and not feeling like you’re alone. Being open and vulnerable about who you are can open more doors than you ever thought possible.

What really inspired you to come out with MS now? Do you hope to open up a more public conversation about the disease or move forward into advocacy work?

I think the more conversations we have about it, the better. People have a lot of misconceptions about the disease. I’m just another face of it. The more awareness people have, the better off we are, and the more hope we have for a cure one day.

I came out about it because I was realizing that I was inhabiting all these feelings of guilt and shame that come along with secrets. I didn’t have anything to feel guilty about. I didn’t have anything to be ashamed about. I didn’t do anything wrong. For so many years, I felt like I did, and that’s an awful feeling to have. Secrets make you sick. I had a very wise man once tell me, “Releasing yourself from this secret will actually begin your process of healing. Maybe one of the reasons why you don’t feel as good as you could is because you’re carrying this secret around with you. It’s so stressful. It’s such a burden.” And I did feel an incredible relief. I did feel very vulnerable and it was very scary, but I’m so glad that I did it.

Knowing what you do now, if you could tell your 25-year-old self one thing, what would it be?
Take your medicine more regularly! Keep active. You have so much ahead of you. Don’t cry over that boy; there’s a great one down the road. You’re going to have an amazing baby and an amazing life. It’s okay to be sad, but ask for help.

 

For more information about MS, visit the National Multiple Sclerosis Society.
Keep up with Jamie by following her on Twitter and Instagram.

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Carrie Courogen
Carrie is a writer and social media manager for Condé Nast Entertainment in New York. Her writing has been featured in print and online for publications like Quartz, Teen Vogue, The Huffington Post, Bustle, and the New York Daily News, among others. Additionally, she maintains a Tumblr where she muses on things like millennial issues, music, and, most of all, lady heroes.
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