The Extra Pressure On Celebrities With MS

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’. 

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New Year, New You?

It's the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible.  By now at least a month of partying has been put to bed, its memories tucked away on Instagram. My liver and credit card are holding hands and whispering Thank God. We're safe now. The fun is over and as we face that icy, unforgiving bitch, January, it's hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t technically require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2015 while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year's. It’s up to you. 

For others a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes, looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, start day drinking, stop using LOL, finally make that enemies list, start being nice to the cat. Look, I don't know what you're into. The point is Anything is Possible.

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Many start the year with big plans for major changes only to find themselves failing by February. So why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams is an important step to realizing them. A new year is a time to reflect on what’s positive in our lives and what needs improving. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and don’t like. We get to know ourselves a little better and identify what's working and what needs changing.

In chronic progressive illness the measuring of time is tricky business. By definition we're supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control. 

So this year I am choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh and then commit to spending more time with them. I will pay attention to what makes me feel crappy and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear because dwelling on the worst case scenario is a waste of my imagination. 

It’s 2016.

Embrace unrelenting optimism. 

Happy New Year, Trippers.

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