(Image courtesy of Colson Griffith-Flikr - Creative Commons License)
When former Soprano’s star, Jamie-Lynn Sigler, publicly revealed her 15-year MS diagnosis in this week’s People Magazine and on Good Morning America, the news spread through the MS community like wildfire. Reactions were quite positive but many people wondered why it took so long for her to openly discuss living with MS.
Jamie-Lynn is one of 2.3 million people worldwide who live with multiple sclerosis, a progressive disease of the central nervous system that damages the insulation around nerves and results in a variety of symptoms. Some symptoms may be “invisible” such as numbness, tingling, impaired vision or pain, while others may be more noticeable, such as impaired mobility, weakness, tremors, or cognitive difficulties.
At the age of 20, Jamie-Lynn experienced heaviness and tingling in her legs, symptoms that led to her MS diagnosis. “It was a shock. I didn’t feel sick. My ideas of MS were limited. I thought it meant, ‘Wheelchair.’ I thought it meant your life was over,” she told People Magazine. As a public figure with invisible symptoms, there was no obvious reason to reveal her diagnosis so Jamie-Lynn kept it a secret with the full support of her family and close friends.
A few years later when Jamie-Lynn experienced other symptoms such as weakness and incontinence, she was still able to hide her diagnosis. But now Sigler, 34, says, “I can’t walk for a long period of time without resting. I cannot run. No superhero roles for me. Stairs? I can do them but they’re not the easiest.”
An award-winning actress, Jamie-Lynn remains human; she is “one of us.” I remember keeping my own MS secret for a while after diagnosis. I selectively chose who to tell and kept the news from my musician colleagues. Why? I didn’t want to be viewed as weak, flawed, or incapable of continuing to perform at a high level. I imagine that Jamie-Lynn had similar concerns.
So why talk about it now? Deciding to use a diagnosis to help others is a brave thing. Talking about MS isn’t easy for many of us, including those of us who do so frequently and publicly. MS is a private matter, a private experience, and a private journey, even if shared with supportive friends and loved ones.
“I’m never going to know why I have this until I live my truth. But it doesn’t define me,” Sigler said. “I know that there are a lot of other people out there struggling. If I can finally be okay and open and honest that I have this, maybe I can inspire other people to do it, too.”
And Sigler’s announcement has certainly inspired people to talk about their feelings and to offer support. Here are a few comments shared in a popular MS Facebook group:
- “Sopranos was one of my favorite shows. So proud of this courageous young lady. Some of the quotes from her People magazine interview really hit home for me. I carry this ‘secret’ with me too. Her words made me ask myself why I am so uncomfortable talking about it. And I have had this dx also for just shy of 15 years.”
- “Yes!!! I loved the Sopranos too!! Her story was soooooo real to me & how my MS is. I too was Dx 15 years ago. Although she has her own life to lead, I hope she will continue to put herself into the media for us as a voice!”
- “She talks about feeling ashamed of MS and I totally get that feeling but am unsure why I do? Do we think that we are supposed to be perfect human beings? Does MS come with a ‘shame symptom’?”
In addition to contemplating our own emotional reactions to Jamie-Lynn’s announcement, many people living with MS offered her support and encouragement, and wanted to know more about her experience with MS.
Although it was Jamie-Lynn who said, “I don’t feel so alone,” I believe that many of us feel the same, often. We may not be an actress like Sigler, a country music singer like Clay Walker, a news anchor like Neil Cavuto, a race car driver like Trevor Bayne or Kelly Sutton, a media personality like Jack Osbourne or Montel Williams, a Miss America contestant like Ramsey Carpenter or Michelle Tolson, or a politician’s wife like Ann Romney, but we each have an important story to tell when the time is right.
If you are struggling with the decision to share your MS story, I suggest that you consider WHY you want to tell others you have MS. Will it be to not feel so alone or to help others feel less isolated in their experience? Is it so that you can receive the accommodations you need at work to be able to continue doing your job to the best of your ability? Is it because you want to bring awareness to the disease?
Whatever your reason for talking about MS, or not talking about MS, I ask you to share your thoughts in the comments below or on Twitter or Facebook. It is by sharing a bit of ourselves that ultimately connects us and strengthens our MS community. This is how we each can become the ultimate ‘superhero.’
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.