- Actor Jamie-Lynn Sigler was diagnosed with multiple sclerosis (MS) during the 3rd season of the “The Sopranos.”
- It took Sigler years to accept her diagnosis and share it with others.
- To help others living with MS, Sigler created a short guide that focuses on self-reflection.
Jamie-Lynn Sigler was 20-years old and on the iconic HBO show “The Sopranos” when she was diagnosed with relapsing multiple sclerosis (RMS), which is a type of multiple sclerosis (MS), a condition of the central nervous system that affects processes between the brain and body.
“I was showing some symptoms at the time that were confusing and there was no rhyme or reason to why I was feeling them,” Sigler told Healthline.
Common symptoms of MS include fatigue, walking difficulties, muscle stiffness, vision issues, constipation, numbness and tingling in the arms/legs, and more.
Because Sigler was otherwise healthy and young, the diagnosis surprised her.
“[I] think my initial reaction was fear and how do I protect myself with this, so I protected myself by not telling anyone and while that felt like the right thing to do at the time, in hindsight I was depriving myself of a support system and the care I think I needed,” she said.
She believes the disease progressed more than it would have if she had taken a more proactive approach in understanding MS and how to take care of herself.
“It’s been a journey for me and many iterations of how to deal with the disease,” said Sigler.
Sigler initially kept her diagnosis a secret from her fellow “Sopranos” cast members, which in hindsight, she said, affected her and her work.
“I did have youth on my side, in that I could hide certain things or convince myself of certain things, but slowly I would open up to certain people and having a small albeit mighty group that knew, I still wasn’t reaching out for help,” she said. “I was slowly trying to figure out what it would be like having people know about this.”
She also shied away from an honest relationship with her MS specialist. She did not always abide by her treatment plan and didn’t speak up when asked, “How are you?”
“I had no voice. I think I thought that my power was taken away once I was given a diagnosis so I was never expressing what I was feeling physically or emotionally,” said Sigler.
Because MS is a complex and unpredictable condition that can affect the body and also the mind and emotions,Dr. Kalina Sanders,board-certified neurologist at Baptist Neurology, said it’s crucial for patients to speak up about symptoms that affect both.
“Our bodies are integrated and each aspect affects the other. Unmanaged mood disorders can make physical symptoms worse,” she told Healthline.
Sigler limited the amount of time she saw or spoke to her MS specialist because she felt that the least amount of communication she had, the more in denial she could be.
However, during the 22 years of living with RMS, she gained knowledge about the disease and the confidence to be more open.
“[When] you harbor any secret, you start to have these feelings of guilt and shame,” she said.
Through many conversations with friends, family, and therapists, she learned to let go of those feelings. Progression of her disease also made it difficult to hide.
About 7 years ago, she decided to go public with her condition.
“[Initially] my coming out about living with RMS was how is the world going to accept me? How is this industry going to accept me? How are they going to look at me? now that they know this news,” said Sigler.
While it was a hard journey of self-reflection and allowing herself to feel sadness, fear, and grief that come along with a RMS diagnosis, she said today those concerns are gone and she accepts herself with the disease.
“[I found] my voice, and when I came to this place of acceptance, it’s like, okay this is my reality but I still have a lot of hopes, and a lot of have dreams, and I have children, and I have a husband and I have a full life, how do I pivot? What can I do? What do I need?” said Sigler.
Sigler helped develop a 3-step guide in partnership with Novartis for people living with MS that focuses on self-reflection. The steps include:
- reach out
“[This] guide is really about feeling safe with your feelings and feeling okay with your feelings because that’s the way to move forward,” said Sigler. “I want [people living with MS] to feel represented [in this guide] and I want them to see that…taking the time to go through each step can allow them to set the foundation, to set the life that they still want and need and love.”
The first step, self-reflection, encourages people to reflect on where they are in their MS journey as Sigler learned to do over the years.
The second step focuses on reframing your situation.
For Sigler, she said this might be going to a concert with friends and getting dropped off at the venue while they find parking or going to her son’s baseball game and using a wagon to lean on as she walks to the field.
The third step, reaching out, recommends creating a support system and asking them for help.
“[This] is really hard for anyone to do…and in that reaching out stage, so many of my connections and relationships became deeper and more meaningful,” said Sigler. “People love to be help. I know my cup gets very full whenever I’m helping any of my girlfriends or friends.”
A trusting network can offer a listening ear and empathy during challenging times.
“Additionally, they can offer companionship during medical appointments or treatments and help to ensure the patient is receiving appropriate and satisfactory care,” said Sanders.
Connecting with your doctor is also part of this step.
Sigler knew her MS specialist was a fit when he told her at an initial visit that her voice needs to be the loudest in the room.
“[That was the first time I felt like I had any power or say in my life after having a diagnosis such as MS…It allowed us to have a conversation and a back and forth and it allowed me to have a safe space to express what I was feeling and going through,” she said.
Dr. Sharon Stoll, DO, assistant professor at Yale School of Medicine, said when patients visit her for the first after a MS diagnosis, they are scared and often don’t speak up, which can cause disservice to them.
“We in the medical community should be more open and create more of this transparency that if you don’t share with us what you’re going through, the limiting factors are in the disease and how it affects your life then we can’t come up with a shared decision making…a treatment plan that works for you,” Stoll told Healthline.
She starts visits with the question: “How are you doing?”
However, because most patients respond by saying they’re fine or great, she follows up with: “and how are you really doing?”
“I find that unless you ask again, unless you rephrase it, reframe it, people often feel like they can’t be honest even with a doctor,” Stoll said. “I’m the one that can actually prescribe the medication and prescribe the physical therapy or the occupational therapy, so I just recommend anyone who suffers from this disease to really share that with their provider.”
The fear and trepidation that comes with a MS diagnosis is something Sigler knows well.
Despite being a celebrity, she still faces the same challenges that other people living with MS do.
“But what I can say is anything is possible, especially in the world we live in now where there’s so much discussion of inclusion and accessibility. I have been able to see firsthand the pivot and adjustments that can be made to still participate, to still move forward,” she said. “It might not look perfect or normal or be how it used to be, but it’s still possible.”