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Interview with Jamie-Lynn Sigler

Introduction

Today’s episode is an interview with actor Jamie-Lynn Sigler, probably best known for her role as Meadow on HBO’s hit series The Sopranos.

Jamie-Lynn talks about her journey from first diagnosis to living her best life with MS, and what it was like to keep it a secret for many years.

Interview

Jamie-Lynn, thank you so much for coming on the podcast.

It’s my pleasure. Thank you for having me.

It’s going to be exciting to hear your story. I’m trying to think, you know, back putting myself in your position, and just sort of reading a little bit about you. You know, you’re, you’re a young actor, you’re in your fourth year of filming The Sopranos, this hit show, and then things kind of go awry. Tell us your story. What happened?

So when I was 19, I was visiting a friend in Florida and I started to feel what felt like the feeling you get right before pins and needles, like that heaviness kind of can’t, you know, feel your entire foot, but you’re waiting for the release of the pins and needles so it will go away. And that release never happened. And over the course of a couple of days, the sensation was rising in my legs. I could still move and walk but they felt heavy, something wasn’t right. So a couple of days later when I flew back to New York, I just went straight to the hospital because at that point it was up to my hips, my legs were getting heavy, something was wrong. And I went through a whole series of tests for about seven days where we did MRI’s, we did cat scans, we did blood tests, we did everything. And they came to the conclusion actually that I had Lymes Disease because they had tested me for MS at the time and there were no lesions. I was given a course of antibiotics and some steroids. And within three weeks I would say everything came back, all the sensation, whatnot. And then about a year and a half later, it was at a time in my life where things were very busy, very stressful. I was being spread a bit too thin and I started to get that feeling again and I didn’t know at 20 years old how to get out of all these obligations. And so I immediately just said, hey, I think I need to go back to the hospital. I think the Lymes might be coming back. I’m not sure what’s going on. I would go again to the ER in the middle of the night and was given a spinal tap, MRI, all the same tests that I had before, but now I was diagnosed with MS so it came as obviously a shock. It was not what I was expecting. I was expecting maybe to just get another course of antibiotics and steroids and sort of be on my way and I didn’t just how serious this had all become.

And for you as a working actor, you kept this a secret for 15 years, right?

I did. I did. You know, so when I was diagnosed, it was in the middle of filming the fourth season of the show. And I was still, I wasn’t symptomatic, necessarily. So I was kind of able to keep it quiet to myself for the last few weeks of filming that we had had to kind of like figure out what was going on. Fortunately for me, the neurologist that diagnosed me was a wonderful, wonderful man who said to me, look there’s no reason for you to think that you can’t live a very full healthy life with this disease. We’re going to stay on top of it, you know, modern medicine is on your side. We’re going to figure out what your disease means for you. Because I heard somebody describe it once and it’s the best way to describe it as, MS is like a fingerprint. No two people’s diseases are the same. You know, it’s very unique the way each body manifests Multiple Sclerosis. So we would sort of follow along and keep a close eye and figure out what we’re going to do. And when I was thinking of when I was getting ready to go back again to work and I had started on treatment and whatnot, I was advised by some close friends and people in the industry that it was probably best if I kept it secret. It was probably best that I didn’t tell anybody because even though, even today, you know, 16, 17 years later, people still don’t know a whole lot about the disease. Back then it was, it was, you know, a death sentence to most, it meant you were in a wheelchair. And so for fear of losing my job or, or anything else, I just felt it was best to keep it a secret, especially with the fact that I wasn’t symptomatic in, in a way that anybody could see, you know, anything that I felt I could keep hidden. But nobody had to really kind of know what was going on.

If this had happened in todays climate, do you think things would be different in the entertainment industry? Do you think at 20 years old today, say this happened to somebody and you were giving them advice, what would you advise them?

You know, that’s a very good question and I don’t really have the right answer. I think for me, I had to go through my own journey and process with the disease because I think one of the things people maybe don’t realize is that like mentally and emotionally, it affects you just as much as it does physically and so there’s a process that you need to go through. I mean, I’ve heard from tons of people that aren’t even in the entertainment industry that they keep their MS a secret just because people have fear of judgment. People have fear of others, limiting them in deciding what that disease means and and they also have fear of losing their job. I think that for me, I had to go through a whole process of acceptance of accepting that this was actually part of my life would act, which actually took me 15 years. I think for a very long time I was just always looking for the cure for the quick fix and at least in my opinion and my experience there is none, but over the years I have come to find a lot of different tools that have helped me cope with the disease, helped me either feel better, physically, feel better emotionally, mentally, and I think when I got to finally that place and had kind of my tool belt all set of all the things that I could use on a daily basis, I realize that now keeping it a secret was no longer serving me because it was actually making me harbor these feelings of guilt and shame that come along with secrets that weren’t meant to be mine because there was nothing to feel guilty or shameful about. This was I think everybody has something and this was my thing and I felt ready to come forward about it. It wasn’t a specific moment or anything like that. It really actually didn’t even have to do much with my work and my job. It was just about me as a person feeling ready to accept it and then kind of see what life has to offer. Now being, you know, open in public with it

And even the ups and downs, obviously there’s flare ups, but you know, there’s ups and downs. Things maybe you discover that help you feel better whether you got, you know, figuring out a sleep pattern that worked for you or, or some sort of, you know, light activity, whatever it is, but you can’t even share the joys of these kind of little mini breakthroughs with many friends who don’t know. It’s like you always have this in the back of your mind, what I can share and talk about and potentially slip up. Right. And, um, uh, accidentally say something, just, I’m sure it had to just, you know, after a while kind of gnaw at you. So what was it like when you finally started telling the story? I mean, just the, the release of all that stuff. I can imagine the feeling of being unburdened must be a must be pretty awesome.

Well, you know, over the years I sort of broadened my, you know, circle of trust of people that knew slowly, slowly, slowly, slowly and uh, I’m still to this day, very grateful for them that they, protected me and kept that secret for me because it’s a very difficult thing to go through a alone and for many, many, many, many years. I mean, I went to every doctor’s appointment by myself. I went to all different ends of the earth to be honest, to heal myself, by myself. And it’s a very lonely road and it was not one I recommend. I mean even if it’s family or close friends that you can confide in to help you kind of go through stuff like that. And especially dealing with the disappointments of, you know, a certain person saying, oh, this is going to heal your MS. Come let me do this, pay me this amount of money. And I would go do it. And then thinking that this was the answer and then be disappointed and let down when obviously it didn’t work. And then having to sort of deal with that on my own. And I just assumed that that’s the way it had to be. And, and until I really started to my friends and then, and when I met my husband, it just gave me the strength and allowed me to be vulnerable and taught me to ask for help, which I think is, um, something that’s really hard for people. And once I, I did that, I wish I had done it years and years before. You know, it really not only opened up my heart and my life, it just, it just makes you feel like you’re not in that fight alone. And because, you know, for so many, you feel like people aren’t going to understand because they don’t get what you feel every day, what you go through every day. But they don’t, they don’t have to underst, they don’t have to feel it. Yeah. To support you and be there with you. And that was a lesson that I, I really needed to learn.

I had a previous podcast guest who is a technology executive and he’s had some great success and technology professionally as well as financially. And one of the things that that allows him to do is to seek out some fairly leading edge treatments. What things did you try, and it sounds like none of the alternative therapies really did anything for you, but what did you try and what was that experience like?

I tried, I went to the Dominican Republic to try some fetal stem cells to be injected into me. Um, I tried something called CCS VI, which some people look have relief from. For me, it did not work. I can tell you the things that did help me, which I think is more important. I think more than anything the mind, I think the mind is way more powerful than people give it credit for. When I started having specific routine of things that I felt in my heart felt good when I was doing them and felt positive for me and my life and my disease, I felt a shift. And I think that people can figure out what that is for them. And it might not mean my blueprint, it might be theirs. But I think that the mind, the mindset is a huge part of it. And so for me, acupuncture was a big one. Meditation was a big one. Once I entered that into my life. Diet. Now when I say diet, I’m not, look, I’ve tried the Paleo, I’ve tried Vegan, I’ve tried, gluten dairy sugar free. I’ve tried a lot of different things even if they would fix my MS because sometimes people put that information out there that it would, I think when I all of a sudden figured out a really healthy balance where it didn’t feel stressful, where it didn’t feel like a huge task every day where I found healthy foods that I enjoy, but I still had my moments in moderation to, you know, indulge. When I found a workout that, a trainer that I really liked and a workout that I really liked. I really enjoy weight training and Pilates, and I entered entered them both. I found a meditation that I really like. I’ve found a therapist that I really liked once I had all these things, which by the way has only been over the cat the last like two or three years have I really felt a significant shift with my MS and with all of these things I also believe in modern medicine. I think that there’s some people that believe that no medication is what’s saving them and I’m not saying that they’re wrong, but for me, I think that for a disease like MS that can sort of pop up on you or you’re always trying to stay two steps ahead of it, having an immunosuppressant medication on your side along with all of these other therapies that you find are helpful is the best way to keep MS in check. I have been stable for 10 years and I accredit it to that. I accredit to my doctors taking care of me and me taking care of me, but also enjoying my life because I think for so long I thought because of MS I couldn’t enjoy certain things and I think that once I realized a way to sort of alter them where I could still enjoy them, where I could still do the things I like to me not have been with me running or me hiking or me doing it on my own, you know, I found ways to still participate in the life that I want to participate with, with just some extra help and I think all those things together caused me to feel as great as I feel today.

Do you have sort of like an early warning system now? Can you sort of tell like maybe you’re overdoing it or something like that? Physical symptoms, you’re like, oh, I need to really get back to make sure that I’m in my routine of these things that I’m doing. Can you tell when things are maybe about to a flare up?

Definitely. Well, I have two little kids. I have a five year old and a one year old and a very full life. And I just, I can tell when, you know, I’m not walking as well as I know I can. When I’m feeling a little bit more fatigued than usual, I just put myself in check. I’ll go to bed early, I won’t over extend myself. I’ll cut back on plans, I’ll do the things I need to do during the day. That means most importantly for my family and myself. Um, but I sort of, you know, pull out of the things that aren’t necessary for, you know, a couple of days or a week and sort of put myself back in check or I clean up my diet a little bit and say, Oh, you know maybe I’m going to stay away from the sweets for a little while and really cleaned it up, have a little bit more green juices and things like that and eat super clean and says, I mean, look anyone, I think that’s for anyone, whether they have, you know, an autoimmune or any disease, you know, it’s just, that’s the balance of life. And I’m, I’m no different.

Yeah. Living your best life no matter what you’re going through. I think the journey as I’ve talked to so many people with different variations of, of autoimmune conditions and different things is figuring out, as you mentioned, everybody is a fingerprint. Everybody’s a snowflake. People are unique. What works for you doesn’t work for me. And everybody’s trying to figure out that right combination of things that works for them. And when you think about, you know, high profile people such as yourself that are turning challenges in their life into positive things. I was reading recently, the last number I saw from, I think the Michael J. Fox Foundation, that, that they’ve, he’s managed to get together something like $800 million towards Parkinson’s research for you. It seems like is this an opportunity for you to leave behind not just a great body of work as an actor, but a legacy of advocacy and awareness for ms that might bring more donations and awareness and research and new new therapies for this disease?

I hope so. I mean, I think I’m just at the beginning stages of that, all of that. But I think that, you know, with anything you try, or at least for me, I try and find, you know, the meaning behind things. You know, we, I’ve gone, through a whole process with my MS of, of feeling like, did I do something wrong to deserve this? Like why do I have this? And I think I’ve come to this place where I have to do something positive with it. I have to try and make something out of this and I’ve been very lucky to have been given a platform in this life. Um, you know, whatever size it may be to give MS a voice and give a MS a face. And I don’t take that lightly and I’m still trying to figure out exactly how to do that because you know, it sometimes can feel like you’re helping. Some people are disappointing others by how much you do. You know, some people want you to share the struggle. Some people don’t want you to share the positivity. And I’m really trying to show a balance of all of that because the truth of the matter is, I can’t let MS rule my life, but it is very much a part of my life. Like do I put it out there all the time that the pain I feel are the struggles I have or do I put out that I don’t let MS stop me and that I’m still, you know, doing all the things I want to do with my children and my family and traveling and working and things like that. So I think it’s and even in my industry trying to figure out how I fit in, you know, because the truth matter is I, I feel awesome. I just walk with a little bit of a limp. So how does that work? Who will still work with me? Who will allow me to be this way? Just people want to shoot around it do people want to use it. You know, this is all stuff that I’m figuring out as I go along with my life. And these are all jobs of mine now that I have as a person that’s representing, you know, a really large community that I think suffer in silence a lot of the time. And so I’m doing the very best I can. But like I said, I don’t take it lightly and I plan to, you know, hone in and really figure out how exactly I can be used best to, whether it be raise funds or awareness or whatever it is. It’s definitely a new role in my life that I’m you know, I guess oddly proud of, but you know, will take seriously and is important to me.

Well thank you so much for coming on the podcast Jamie-Lynn and sharing your story and the journey that you’ve been through and I hope it inspires others to continue to figured out what works for them and to maybe have the courage as well to talk about their stories.

Me Too. Thank you so much for having me. I appreciate it.