After living with multiple sclerosis for years, “The Sopranos” actor Jamie-Lynn Sigler shares what she wishes she’d done differently after diagnosis and how she learned to thrive while living with the disease. 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.
Living with multiple sclerosis: It’s OK to say, ‘I’m not OK’
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.
Support systems are crucial for people living with multiple sclerosis
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.
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