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“When I was initially diagnosed with Relapsing Multiple Sclerosis [RMS], I kept it a secret for a number of reasons, one being out of a fear that it could ruin my career,” says actor Jamie-Lynn Sigler. “And through my journey of becoming public about it, it led me down this road of self-reflection, and where it’s taken me to now is this place of acceptance. You know, acceptance doesn’t mean that you necessarily have to be happy about it, but it’s just being like, soma creatures trailer ‘okay, this is part of my life.’”
Perhaps best known for her longtime role in The Sopranos, Sigler, now 42, has continued to work steadily since her diagnosis over 20 years ago. Now she’s even an advocate for people living with RMS, and has partnered with pharmaceutical company Novartis to create an RMS guide that walks people through reflecting on their needs and how they’re feeling emotionally and physically, reframing old thoughts, such as feeling like a burden, and reaching out to people in your life you can count on for support.
Getting to that place of acceptance and a more positive frame of mind was not easy. Even the question ‘how are you’ used to be somewhat triggering for Sigler. “It was hitting that sore spot of that secret I had that I wish I could share,” she explains. Opening up about her experience with MS changed things. “I always say that MS gave me my superpower, which is vulnerability…the older I get, I have way less bandwidth for small talk.” Her being vulnerable and honest about what she’s going through, or a bad day she had recently opens up a space for conversation with others to share and connect on a deeper level.
Sigler leans on her friends in the TV and film industry who also live with MS, other members of the tight-knit MS community, and her personal circle of girlfriends, who have been so responsive whenever she needs certain accommodations, like parking closer to a concert venue so that she doesn’t have to walk long distances, or to postpone plans when she’s not feeling well. “I credit so much to my support system that I have been able to create in my life, which is that step three of the RMS guide, reaching out, because I don’t think a lot of things are possible without you asking for help,” Sigler says. “It’s okay to ask for help — it doesn’t mean you’re not strong, and doesn’t mean you’re not capable…My friends remind me that they’re so proud and happy to help me in any way that I need. You don’t necessarily have to be living with RMS to need help. We all have things that we have to push through and persevere through.”
On tough days, Sigler definitely feels all the fear, grief, and sadness of living with a chronic illness, she shares. It’s a balance between allowing herself to rest and sit things out from time to time, and also figuring out what she needs to move forward and participate in the next event. To be able to attend her sons’ baseball games in humid Austin, Texas, Sigler’s husband, former MLB player Cutter Dykstra, got her a wagon for all the gear that she can push and lean on as she walks, and a neck fan for the heat (which notoriously can exacerbate MS symptoms).
Through this Novartis guide and her advocacy work for MS, chronic illness, and disability accommodations, Sigler is advising that people listen first and foremost to people with chronic conditions about what their needs are. “Nobody is going to know what you need until you voice it…I have a different set of eyes and a different perspective,” she says. “So I learned through experience that, if you adjust this or that it’ll be easier for me, or if you park this trailer closer, that would save me a lot of time and energy.” She was originally self-conscious of being a burden to others or seeming “extra” by adding additional requests, but has seen a positive change in society and her industry in terms of being more inclusive.
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Instead of getting frustrated that things aren’t accessible at different venues, Sigler takes the opportunity to express how things can be more helpful for people with disabilities in order to get the conversation going. “Each place that I go to I have a voice and a platform, and I will use it,” Sigler says. “It’s really shown me that it’s one of the most beautiful human exchanges we can have; people really like to be helpful.”
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