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What’s The Big Deal About Coming Out With MS?

Is MS your sick little secret?

What’s The Big Deal About Coming Out With MS?

One night, years ago, The Banker and I were out for drinks with some new colleagues of mine. Between antipasto and mouthfuls of montepulciano, the conversation turned to trading tales of lowkey medical trauma, like the time my high-school boyfriend accidentally ice-skated over my finger. You know, the horrifying stories of slamming your hand in a car door, or punching yourself in the face as you attempt to put on a bra; anything involving crazy-glue, a crème brûlée torch, or a mandolin, really.  

Not one to let a gross story go to waste, The Banker started sharing his own cringe-worthy anecdote–well, our cringe-worthy anecdote–about the time we were in a Montreal hotel room when my DMT’s auto-injector jammed. While The Banker tried to solve the problem, the device suddenly sprung back to life, catapulting the syringe full of potent medication into the air before landing it dramatically in the centre of TB’s bare-footed big toe.  

Of course, TB never got to share the climax of this harrowing tale. Almost as soon as he started talking, he panicked and went pale as he realized he was outing my MS. His attempt to bail on the story only made things worse as his sketchy plot holes made it sound more like a heroin experiment than however he thought he was spinning it. I should have re-directed the convo by outing his third nipple, but I respect boundaries and that’s his story to tell. Instead, I jumped in and confessed the truth: actually, I have MS.

Wait, what? Who doesn’t know you have MS?

When I was first diagnosed, I never thought people would treat me differently because of it. I was open about my MS. 

I also used to think mermaids were real and that vodka won’t give you a hangover. I was wrong on all counts. I quickly learned that people do act differently when they learn you have a chronic illness like MS. Not always, but enough to make me wary. And eventually, the pressure to prove my invisible illness, the dismay of being treated like damaged goods, and the fear of being left out or left behind, led me to start keeping my MS classified.  

My improv troupe. Not one of them knew about my MS.

Passing as non-disabled

There was something intoxicating about passing. Staying silent meant I could be Ardra, instead of Ardra-with-MS. But it was an imperfect solution. Keeping secrets is stressful, and MS will try to reveal itself in ways that those of us who live with it don’t always recognize are our ‘tells’. I’ve been asked about my fancy walk, and why my fonts are so big you can see them from space. 

I remember the lunch with a new friend, when I was just learning to self-catheterize and had spent an unexplainable 45 minutes in the bathroom. I remember stumbling into an audition, certain the panel thought I was drunk. I remember the European choir tour (where, like everyone, I actually was drunk) but the amount of rest I required led to rumours I was pregnant. 

I was more comfortable being thought rude and reckless than sick and disabled.

Not pregnant. Just need to sit. Again.

Coming out with MS

Coming out and passing are terms we associate with the LGBTQIA community. The disability community is marginalized in different ways, but members of both groups have felt the need to hide an identity over which they have no control. Both communities fear how disclosure could impact  careers, relationships, and safety. Both communities risk being isolated, stigmatized, and seen as less-than. Just like homophobia, ableism exists. 

If you haven’t watched Netflix’s Special do it now. I mean, finish reading this, and then watch, obvi. Ryan O’Connell’s character (adapted from his real life) is a proud gay man who allowed his new coworkers to believe he’d been hit by a car, knowing it was a more palatable explanation for his own fancy walk and unexplained behaviours than coming out with the full truth, that he has Cerebral Palsy.

A recent study shows that for many with MS, the ‘should I/shouldn’t I’ decision can be serious enough to cause anxiety and depression. It’s not enough to be told that the world will understand and that the law is on our side. Because, is the law really on our side when there are systems in place that keep disabled bodies out of sight? When inaccessibility is standard, medications and medical equipment aren’t affordable, and people with disabilities regularly have to fight for benefits?

Coming out with MS can be scary

It can be terrifying to tell someone in a position of power or influence over your life, or even someone whose opinion matters to you, that you have MS, when it’s still acceptable to say, think, and believe that able bodies are better than disabled bodies. To be clear: 

Able bodies are better than disabled bodies is still something you can say out loud and not get canceled. You might even believe it yourself. 

It’s equally acceptable to react with horror at disability; and if you think I’m being dramatic, let me remind you of Tiktok’s viral new teacher challenge where parents–PARENTS–used photos of people with disabilities to scare their children.

The cost of keeping quiet

And so we hide our MS, like it’s something to be ashamed of, from the people we depend on for survival. Who wouldn’t want to keep this shit on the downlow? Sure, passing has it’s perks, but that doesn’t mean it isn’t hurting you, or the rest of the world for that matter. The obvious cost of keeping quiet is that we are left to fend for ourselves, without necessary accommodations. This can lead to frustration, fatigue, and a reduced ability to perform the tasks of daily living. And keeping quiet can have other consequences too. 

Eventually, keeping MS my sick little secret felt gross, like a betrayal of myself. 

When we don’t feel safe enough to disclose our MS, we end up reinforcing a damaging message to ourselves that we have something shameful to hide. Even the language around sharing a diagnosis as something that needs to be disclosed suggests there’s something sneaky going on; something that needs confessing.

I see you looking.

Worse still, we are never free to truly be ourselves. Our sense of self-worth becomes dependent upon maintaining a lie. When we say that’s not me, I’m not one of those people, we perpetuate the stigma around chronic illness. We let the status quo go unquestioned, and we send ourselves the dangerous message that disability is a choice one can simply opt out of. 

Humans have a need to fit in, and the desire to be included is powerful. But disability is the largest minority in the world. And yet, we haven’t found safety in numbers, let alone pride in identity. So many people live in fear of being found out and seen as damaged, broken, sick, less-than. Disability IS normal. If we can’t raise a hand and say this is me, this is what MS looks like, then we can do nothing to undo the myth that we are different, strange, less-than, other.

Me, after climbing 1000 steps in 2014. This is also what MS looks like.

So, you’re telling me I should always be open about my MS?

Hell no. You don’t have to tell everyone, or anyone about your MS. Even with a gait that gives me away and an openly MS internet presence, I still find plenty of opportunities to deny nosy randos access to this kind of intel. Not because I’m ashamed to have MS (I’m not), but because I’ve decided it’s not in my best interest. I don’t owe anyone an explanation for how I move through the world. And neither do you. 

Coming out with MS in a positive, empowered way takes practice. It’s hard to acknowledge membership in a group that literally no one wants to be a part of. It’s hard to claim status in a society that has a hierarchy of bodies that values productivity and so-called perfection above all else, but asserting our right to be meaningfully included is exactly what we need to do. 

In a more progressive world, where disability is no longer misunderstood, stigmatized, and seen as a liability, people with MS would feel safer sharing their health status. Until then, we can’t advocate for our needs or dismantle stigma and ableism without being open, vocal, loud, and proud.

Nobody said progress was easy.

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I Want You To Be On My MS Walk Team!

No walking required!
photo: Alkan Emin

Join my virtual MS Walk Team: Team Tripping On Air!

Long before I was diagnosed with MS, the only team I would have qualified as captain for would have been something nerdy and non-athletic. Guys, I founded a stamp club when I was 11. (Shout out to all the indoorsy philatelists out there.)

My hobbies included choir, and being friends with the teacher.

With this year’s annual MS Walk going virtual, I’m finally ready for my varsity jacket, whistle, lifetime supply of Captain Crunch, and whatever other stuff Captains get for captaining. Because a virtual MS Walk means I don’t actually have to walk, or do anything remotely athletic. In fact, this year, the MS Society of Canada is encouraging us to come up with our own challenges to raise awareness and funds under the hashtag #wechallengeMS—and I am so here for it. 

What is #wechallengeMS?

#wechallengeMS means your advocacy is up to you. If you also had teacher besties, you could make yourself a reading challenge or a math challenge! Too cool for school? How about a cooking challenge, or gaming, or gardening; you could even do an athletic challenge and STILL BE ON  MY TEAM. The sky’s the limit, Trippers. 

You are also invited to take part in my challenge, the #MSLemonChallenge. 

Lemon Challenge? Sounds like it sucks.

It does suck! Because MS sucks. But, people with MS have been turning the life-lemons we’ve been given into lemonade since forever. Help raise awareness by challenging your friends to see who can eat a lemon the fastest, or film yourself eating a lemon while trying to keep a straight face. I want to see what my teammates are doing; so, share your videos with the hashtags #TeamTOA #MSlemonchallenge and #wechallengeMS, and I’ll share your posts to my stories, which you can follow here and here.

The battle to determine who thinks MS sucks more.

I want to captain Team Tripping On Air because I’ve seen what this community can do, whether it’s connecting and sharing MS stories and life hacks or re-shaping the narrative of what disability looks like (#sicknotugly, #babeswithmobilityaids), there’s strength in numbers, and nobody is better at raising awareness about MS than you guys!

And speaking of numbers, my goal for the team is to raise $10k,  and also to become the biggest team this walk has ever seen. I may not be athletic, but I like to win. I would love to have someone from every province represented. 

The ’rona is at the top of the list of all our concerns right now, and props to everyone for doing what needs to be done to ensure the safety of everyone around us. When the virus settles down and life goes back to something more familiar, those of us living with MS, are still going to have MS; and, support for ground-breaking research will be as urgent as ever. 

With that in mind, I’d like to invite all of Canada to be on my team this year: Team Tripping On Air. 

But wait: Here’s the best part!

We’ve established that I suck at sports, but my superpower is throwing great parties. Everyone on Team Tripping On Air will be invited to a Zoom sesh on Sunday May 24th where we can share in my favourite activity: brunch. I’ll answer some of your questions and we can get to know each other. Plus, I’ll be giving away a choice of TOA bracelets to someone on the team. 

Brunch, bitches!

More is more!

If you’re not in Canada, but still want to take part in this par-tay, we’d love to have you! Just note that tax receipts can only be issued to Canadian donors. 

Let’s make this the strongest team ever! 

Click here to sign up! And please comment with where you live, so we see how far Team Tripping On Air can reach!

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Why I’m Not Freaking Out About The Apocalypse

COVID-19 and MS

If you know me at all, you’re probably assuming that COVID-19 has me camped out in a bunker somewhere in rural Ontario, wearing a Hazmat suit, and holding a shot-gun to protect my lifetime supply of Miss Vickie’s chips while I ride out the apocalypse. After all, I have MS, which puts me closer to the top of the deadly virus’ enemies list, right?

Actually, I’m at home in Toronto, still in my pyjamas. My doomsday stash includes nothing more than an extra month’s supply of catheters, and none-of-your-business bottles of wine. Technically, I’m isolated, but that’s nothing new; and anyway, it’s only for a few hours, because I’m going out for dinner with friends tonight, and before you clutch your pearls in horror at my extreme risk taking, here’s how I feel about it:

As someone living with MS, the consequences of any infection can lead to actual relapses that can cause real, and possibly permanent, damage. Add to that years of immuno-modulating medications, and I am always on high alert.

Every. Single. Day.

So, how come I’m not wigging out now?

This is my normal.

My tolerance for worst-case-scenario daymares is admittedly pretty high. Been there, done that. But in some ways I actually feel safer now, because people are finally washing their damn hands and staying home when they have a sniffle. In other ways, I feel like maybe, just maybe, people are getting a taste of what it feels like to live with the kind of anxiety that comes with a serious health threat. 

The world’s reaction

It’s interesting to see what’s possible when the health of—let’s face it— the people we value most, is threatened. In Canada, the government has eliminated the one-week waiting period for EI benefits for workers who are quarantined. Employers are figuring out how much work can actually be done from home. Concessions that were deemed impossible for people with disabilities have suddenly become options for the general population. Hmm.

Meanwhile, the public is being constantly reassured that this virus is really only taking out the elderly and those with underlying conditions. Let’s be clear: this is a not-so-subtle nod to the belief that those lives are less valuable anyway. And PS, we can hear you. 

If you find yourself struggling with the social impact that comes with self-isolating, consider the loneliness, frustration, fear, and straight-up lack of access that many people with chronic illnesses deal with on the regular.

What will we learn from COVID-19?

When the dust settles, I hope we are changed from a culture that prioritizes work and showing up above all else, to one that embraces wellness and considers the safety and well-being of everyone. If we no longer reward people for going to work when they’re sick, but support them in their recovery, everyone wins. 

Stay safe and look out for each other. These are strange and unfamiliar times. Let us be grateful for Netflix and liquor store deliveries. Amen.

We will get through this.

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Ever wondered if you have other diseases?

Recently, Tripping On Air was recognized as a Top MS Blog by Healthlabs and that was super nice of them, but it’s good news for you guys too because, they’re giving TOA readers 10 FREE Comprehensive Health Test panels, where you can find out cool things like, your blood type or whether or not you have anemia. Non-Trippers shell out a whopping 99 bucks for this kinda intel. 

Cool. But, is there a catch? You have to be American. 

What? That’s not fair! Relax, hosers. Canada already gets this for free. 

So, if you’re in America and you wanna find out about your lipids and your liver function, call 1-800-579-3914 and ask for your free comprehensive health test panel. You don’t need a doctor’s referral, you just need to name drop Tripping On Air. They will hook you up with a lab nearby where you can provide your blood sample. You’ll get results by email a day or two later. If you’re one of the lucky 10, lemme know how you made out. Don’t like, tell me how your kidneys are functioning – that’s confidential. But I’d love to hear how their service was. 

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The Importance of Pretty: Beauty and MS

Lisa Dryer and Tori Davies-Wompey are on a mission to bring beauty back to women with multiple sclerosis. Not that it went anywhere. It’s just been hiding. 

From the moment of diagnosis, people with MS learn about what they stand to lose. The list of physical symptoms is too long and too depressing to detail here, and anyway, lots has already been written about this.

What the pamphlets and WebMD don’t tell you, is how this disease can erode your self-perception, your self-image. MS can be a straight-up, joy-sucking Dementor, and vain as this might sound to those who’ve never had to think about it, MS can steal your beauty.    

Wait, what? MS can wreck your pretty?

MS takes and takes, and while it can’t actually turn you into a human gargoyle, it can make you think you’re one, and that’s just as bad. Tori Davies-Wompey, one of the women behind #MSbeautiful, says “I think MS steals so much from us. Our jobs, our abilities, our roles as daughters, wives, mothers, whatever it was that you did before that you can’t do now”. That’s a heavy list. But why stop there? Maybe you’ve had to give up heels. Maybe you’re covered in injection welts and bruises, maybe steroids have taken over your face. 

Maybe you’ve peed your pants

Any one of these things can make it hard to recognize your inner goddess let alone celebrate her. 

Founder, Lisa Dryer was mid-relapse and struggling with these issues when she knew something had to change. With the help and encouragement of professional photographer and close friend, Al Murin,  #MSbeautiful was born.

Cool hashtag, but what exactly is #MSbeautiful?

#MSbeautiful is an event that brings women together for a no-cost day of pampering and glamour, complete with hair, make-up, and even swag bags. The events are an opportunity for women to support each other, reclaim themselves, and raise self-esteem. Each event culminates in a professional photo-shoot. They’ve already held successful events in Ohio, Texas, and Wisconsin, with Colorado on deck. Lisa’s goal is to be in every state and here’s hoping that eventually #MSbeautiful extends past the US border.  

So, Lisa and Tori have MS? Why are they doing this?

Lisa and Tori seem to know that in helping others we help ourselves and when Al Murin passed away unexpectedly last year, Lisa became passionate about continuing the mission they had started together. Tori says her work with #MSbeautiful is rewarding, that it gives her a sense of purpose. Says Lisa, “Looking at happy people makes me happier…But making people happy is even better. Giving people a little bit of fairy tale in their day. Amazing.”

Ok, but like, does lipstick cure MS?

If this superficial need to feel pretty is beneath you, then congratulations, you’re better than me. And if you’re pretty without makeup, well, bless your heart. Go forth and multiply. Personally, I believe more in blow-outs and bronzer than in actual, natural beauty, but Lisa (she really is better than me), believes everyone is inherently beautiful; that the things that make us beautiful extend beyond the surface and include “creativity, talent, smarts…what make you you”. She isn’t afraid to go on camera looking undone. She says women need to see that side of it too. It’s not about being an idealized version of yourself. It’s about how you feel. 

Knowing a bit of glam can’t fix broken self-esteem, let alone cure MS, Lisa’s vision is to provide at least one amazing day, where we can escape a bit. And it’s working. Tori says “feeling pretty…makes me feel just a little bit human again”. Are we seriously gonna deny her her humanity? Get this girl to a MAC counter. 


Wait. Are you saying disability can be beautiful?

One #MSbeautiful participant had this to say “As a woman with Multiple Sclerosis, it is very rare to feel beautiful, or as the center of attention for the way that I look. I am no stranger to getting stared at. Generally, I try to ignore people who look at my walking device, such as my walker or cane.”

Lisa and Tori know this is bullshit. Society has told us a bunch of lies about disability. In a disease where one has little control, claiming one’s beauty is about taking control back. #MSbeautiful is about being empowered to say: 

I’m worth this. I deserve to be here. I deserve to be seen.  

Are Lisa and Tori #changing the world?

Positive examples of disability in media are few and far between. Disability is underrepresented, misrepresented or just plain ignored and women with chronic illnesses like MS are left to conclude that disability, visible or invisible, isn’t part of the conversation, isn’t relevant. Simply put, isn’t beautiful. Lisa and Tori are calling this out and replacing the void with awesome images of real women in all stages of MS.  

When Tori talks about how using a walker, and sometimes wheelchair, messed with her idea of herself, it clicks for me. Tori’s a babe. Tori uses walkers and wheelchairs. Me too. If Tori can be kick-ass, it reminds me that, so can I. 

Seeing her beauty helps me see mine 

and I realize just how powerful this campaign is. When women are empowered, it’s contagious. We need to see ourselves reflected back.

Swag bags and paparazzi? I want in.

These ladies want you to know that disability does not disqualify you from being beautiful. Join the #MSbeautiful Facebook group. Start using the hashtag on your selfies. If you want to participate in an event in your town, look for info on their FB page. 

Hold up. I’m a dude. Can I come too?

No. #MSbeautiful is about women empowering women in a safe space. And while we know you need to feel pretty too, we’re sure you understand. Men are also affected by MS and many have faced similar issues, but this particular project is just for the ladies. So, sorry guys. You’ll have to get your own thing. Might I suggest #MSdudeiful?

Until next time, stay pretty, Trippers.

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Dear Meryl Streep

At the Golden Globes on Sunday night, Meryl Streep called out Trump for publicly mocking a disabled reporter and then high five’d Hollywood for its inclusiveness, identifying her community as “crawling with outsiders and foreigners”. While I was excited to see a major star use such a huge platform to defend the dignity of Mr. Kovaleski and to speak out against the unjust treatment of persons with disabilities, Hollywood is not yet deserving of a pat on the back for total inclusion, especially as it relates to disability representation.

c Thomas Wolf www.foto-tw.de CC BY-SA 3.0 DE
Across multiple media, including television and film, disability is still grossly underrepresented, misrepresented or just plain ignored. In her speech, Streep said “An actor’s only job is to enter the lives of people who are different from us, and let you feel what that feels like”. But in the world of entertainment, disability stories are little more than stereotypes of victims and burdens, heroes or freaks; lazy tropes that are used to make us feel specific emotions. These careless characterizations are not just hurtful, they’re dangerous. They inform how we see disabled people in real life and lead us to believe they are low status individuals. 

The real stories of disability are still not being told.

The arts are by nature forward thinking and innovative. Media is one of the most effective vehicles to illicit change in hearts and minds. Hollywood has a real opportunity to influence and normalize how we see disability just as it has for other marginalized groups.

So, thank you Ms. Streep, for shedding a massive light on this issue. You’re amazing and I love you, but there’s still work to be done. I hope this encourages more conversation about the accurate and authentic inclusion and representation of disability across all media.

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What I’m Reading

A couple of weeks ago I received a package in the mail. Fellow writer and Tripper Jennifer Evans, had sent me a collection of poems she had compiled, penned by MS’ers about their experiences, called Touching MS, Poetic Expressions.

My first thought was delight; how nice to have received such a thoughtful gift from a stranger.

My second thought was Oh God, amateur disease-poetry. This is going to be terrible.

I poured myself a big glass of wine and decided to give it a peek, because these are my people. To my surprise I ended up reading the whole collection in one sitting, cover to cover. It’s not all Tennyson but some of what I read rang so true to my own experience that I easily could have signed my name to it. (I mean, not enough swearing to convince you I’d actually written any of it, but that is why I don’t write poetry, bitches). 


Don’t be fooled by the flowery cover. There’s nothing sugar-coated about what’s inside. At times hopeful and at times raw, it will remind you that you are not alone.

Like this one from Marie Kane:

Unsinged
Marie Kane

Charcoal fire lights our patio bricks. You turn the steak,
     reveal crosshatch pattern of the grill.
I sit above you on the porch; we are silent as we often are.
     Perhaps you regret serving steak, which you have to cook
and slice, and regret having to clean up this dinner
     with its vegetables and rice, and even rue the decision

to marry me now that I am crippled, not able to do
     as I used to – 
anything, really – and you are so quiet I want to
     make as much
uproar as I can, rail against you for being so
     confoundingly stoic,
You finish grilling, climb the porch stairs, kiss my shoulder,
     and enter the kitchen. I follow, my cane catching the metal
strip at the entrance. I grab the door jamb to keep
     from falling.

“Are you OK?” you ask. There is nothing in the world that
     could make me tell you the truth. You      remove the red 
cowhide grill gloves, fill the white plate with asparagus 
     and rice,
thinly slice the London broil, reserve the most tender for me,
     and with the same steady hands, help me into my chair,
guide it to the most suitable position at the table, present
     my plate,

and light the candles. We eat by their faint glow, and 
     my most
secret self responds to your generosity with embarrassed
     compliments about the food. Later, I watch you sleep,
scent of the grill in your hair, while your hands – 
     unsinged, wide, loose on my breast – 
claim me this night as your own.

Originally published on multiplesclerosisnewstoday

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Disability and Beauty

Dear Trippers,

Tomorrow I start my second round of Lemtrada and I’ll tell you all about it in a couple of weeks.

In the meantime, here’s a piece I wrote for xojane about diversity. Special thanks to Darce and Celia. Seeing your beauty helps me see mine.

xa

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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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