Yesterday actress Jamie Lynn Sigler told the world she’s been living with multiple sclerosis for the past 15 years. The reaction from Trippers everywhere has been one of love and support. Already there are hopes she will represent us, give us a more prominent voice, be the face of this dreadful disease. It doesn’t hurt that the face we’re talking about has Hollywood good looks, a beautiful family, a successful career. Sigler paints a pretty good picture of what MS can look like. This misunderstood condition could use some glamorous attention, but more than that we all seemed to breathe a collective sigh of relief at how real she was going to be about her illness when she said,
“Stairs? I can do them but they’re not the easiest. When I walk, I have to think about every single step, which is annoying and frustrating.”
Because we’ve been disappointed in celebrity attention and how MS is portrayed in the media before.
Sigler kept her diagnosis private for many years before revealing it on her own terms. When I was diagnosed, news traveled faster than I could handle. I was naive and didn’t realize how important it might have been to keep it to myself as long as possible. I didn’t understand the side order of stigma and labels that come with MS. It can, and will affect your professional opportunities. It changes relationships. You don’t get to control your own narrative. That whispering at the water cooler? No. It wasn’t about my awesome new bag.
Facing my own ‘public’ has been and continues to be challenging. Like Sigler, you’d think I would have figured it out by now, but that’s just not the case. Of course Sigler’s public is enormous. Truly public. For the rest of us mere mortals the concerns about what and when to disclose are the same. How will this affect my work? What label will people give me? How will this change my relationships and potential relationships? How do I seek support without compromising privacy? How do I ask for help but maintain an appearance of strength and positivity? How do I balance living an open and truthful life with what that is going to cost me?
As brave as JLS is, we can’t expect this woman to be the ambassador for MS. It’s not her job to take on this tremendous task. She didn’t ask for this and we shouldn’t ask her to advocate either. I’m saddened to hear of her diagnosis. I’m grateful to see a public voice that resonates a little more closely to my own experience than what we’ve seen in the media before. To be able to say:
It’s hard. Here’s what I’m doing about it. I’m still here.
The MS community is inspired by Jamie-Lynn’s bravery in choosing to publicly share such a personal story. Just because she has a public platform doesn’t mean she is obliged to become the voice of MS. I hope society and her industry will create the kind of environment where she can continue to work and thrive as a whole person, advocating for MS on her own terms.
As Sigler said, ‘It’s part of me, but it’s not who I am’.