Some Pros and Cons of a Celebrity Sharing Their MS

Since I’ve been diagnosed, I’ve learned of a number of notable celebrities or their family members that also suffer from Multiple Sclerosis.  Most, like Annette Funicello, Montel Williams, Alan Osmond, J.K. Rowling’s mother and Amy Schumer’s father are older than me and didn’t quite resonate with me that much.  Just recently however, actress Jamie-Lynn Sigler announced that she has been battling Multiple Sclerosis for the past 15 years.  Her announcement really hit home, not just because I was a huge Sopranos fan but also because we are close in age and our MS story is similar.  While many with Multiple Sclerosis have been very excited to hear that she’s made this announcement, there are still others who wonder why it took so long and why she hadn’t been more vocal about it in the past.  There are no doubt many people who don’t know much about MS that are hearing the news and thinking that she looks great, and that MS must not be that bad.  Like it or not, we live in a very celebrity-driven world.  The rise of social media and an increasingly wide array of entertainment media have not only increased the number of people we deem “celebrities” but also put them right in our faces, seemingly constantly.  So it’s no surprise that when someone famous makes such an announcement, it will garner a wide variety of opinions.  I actually have mixed thoughts when a celebrity comes out and says they have MS, so I thought I’d talk about some of the pros and cons I think about.

First of all, I’d like to say I sympathize with anyone who discloses that they have MS.  No matter who it is, friend, family, stranger, celebrity, anyone.  I’ve been fighting the good fight for almost 17 years, and I know what that announcement means (many times more than they even realize yet, if they are newly diagnosed).  So I not only have great sympathy for them, but I also feel an instant connection.  When I read Jamie-Lynn’s story, I felt a connection to someone I don’t even really know.  We are similar in age, we were diagnosed around the same time in our lives, and were both diagnosed on the heels of battling another illness.  Just like her, I didn’t tell the entire world, particularly my employers (and face it, had she announced it early, it’d be the same as any of us putting it on our resume).  MS can be a very lonely disease at times; it’s rare I interact with people in my day-to-day life that have MS and can understand what I am going through (thankfully, I have met many other MSers through social media).  There is a common saying among MS patients that “you don’t get it, until you get it”.  That’s because it’s just such a silent, below the surface disease that it’s hard to convey to people what having it is really like.  So as odd as it sounds, that connection I feel to this stranger is important to me.  I couldn’t wait to tell people about her when I read it.  I told my wife right away, I called my mother at work, and I posted it everywhere I could.  I suppose the connection I feel and excitement I had underscore that loneliness that someone with an illness like MS can feel.  Sometimes just hearing about someone else going through what you’ve gone through can be incredibly comforting.  Knowing there is one more person out there that understands, that really “gets it”.  This is an advantage of a celebrity coming out with MS that I feel more than I can really explain.

One of the other benefits of a celebrity declaring they have Multiple Sclerosis is the awareness it brings.  No matter how you feel about a particular celebrity, if they can bring MS to the forefront of people’s minds, even for one day, even for five minutes, then we all benefit.  MS is a disease that isn’t often talked about.  It’s seldom understood by most people, and there isn’t a whole lot done to inform them.  Just the mere mention of MS in the public eye can do wonders for fundraising efforts.  People are more likely to donate if they can somehow relate, and knowing a celebrity has a particular illness certainly helps make that connection in their heads.  Fundraising aside though, it helps bring knowledge to people.  Every segment on Jamie-Lynn I watched or read also included valuable information on the disease.  Just think of how great it would be if people actually understood more about the disease.  That loneliness factor I mentioned would go down tremendously.  So someone like Jamie-Lynn coming out can actually help a lot of patients feel just a little bit less lonely, just a little more understood.

Unfortunately, a celebrity announcing that they have Multiple Sclerosis can have some negative impacts too, particularly if they are newly diagnosed.  The invisible nature of the disease is already a huge challenge for most of us, but when people see a celebrity with MS and they look fine, then there is an even greater chance that they’ll be dismissive of the disease.  It’s the same battle we all fight at some point, we meet someone and they say, oh, my so and so has that and she’s doing great.  That gets magnified when they see someone on TV.  People see a celebrity and they look amazing, which makes people think that the disease just isn’t that big a deal.  It’s not their fault or even the celebrity’s fault, that’s just the way the disease is.

Another issue I’ve run into, and again, it’s something we all run into with everyday people but is again magnified because of a celebrity, is that celebrities can be seen endorsing a particular treatment (whether they intend to or not).  At one point, I had numerous people send me an article that said Jack Osbourne cured his MS with a Paleo-style diet.  I thank people for thinking of me but there is no cure.  He may have at some point believed that, or even just mentioned that he’s feeling better after changing his diet.  Well yeah, I bet he does, he admitted to having a hard-partying lifestyle before he made the change.  Two years later, Jack has a website about MS that he created with the makers of Copaxone.  So, a diet did not cure his MS (though I have no doubt it made him feel better and many people do swear by their MS diets), but people will remember that headline from two years ago and think my diet is why I sometimes can’t walk and have a ton of other issues.  So whether they proclaim it or not, celebrities can get their words misconstrued or changed, and in the case of our disease, that can certainly have a negative effect.

The snowflake nature of MS is a big reason why celebrities discussing their MS can be an issue.  Not because of the celebrity, but again, because of public perception and not realizing that each and every MS patient is different.  Our symptoms vary greatly from person to person and so do our treatments.  Like Jamie-Lynn, I tried a slew of treatments over 15 or so years before I found something that has reliably worked for me.  MS is a disease where each patient has to find their own way.  Hearing that a particular treatment is working for a celebrity and knowing it isn’t working for you can be extremely depressing.  That depression can be compounded when friends and family see someone on TV who says they're doing great.  It’s working for them, why not you?  It’s hard to explain that we are all different, that each MS case is not the same.  It doesn’t fit the mold of what people expect with a disease.  When people see a celebrity with MS, they then tend to see that person as their MS template, not realizing that the disease just doesn’t work that way.

While there are some negative aspects, I still believe the positives of a celebrity announcing they have Multiple Sclerosis are tremendous and far outweigh the problems they can cause.  Anything that can help raise awareness is a good thing and in this world of constant media overload, having someone bring attention to our disease is wonderful.  Whether a celebrity does a lot to spread awareness or not isn’t even an issue to me, just getting the disease in the news is enough.  It’s up to all of us to take it from there.  I hope all of those afflicted with this disease can somehow use Jamie-Lynn’s announcement as a springboard to discuss how the disease affects each of us individually with our friends and family.  As always, I’d love to hear your thoughts on this topic!  What are some of the pros and cons you see with celebrities sharing their MS with the world?

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