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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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • eve23
    2 years ago

    Diet has helped me battle my MS for 17 years. However, I have finally accepted the fact that I cannot cure myself. After 2+ long years of trying to convince doctors that I may look great but I am REALLY sick, I have finally received a diagnosis! I am starting treatment soon. Celebrities should not give anyone hope that there is a cure for the incureable.

  • nicnackk
    4 years ago

    A few months ago, my daughter started watching the TV show friends on Netflix. One day I sat down and watched a few episodes with her and a couple of them just happened to have Terri Garr as Pheobie’s mom. I said to my daughter that she has MS and my daughter said you couldn’t tell. I could though and I pointed out how when she walked she kind of dragged one of her legs , but in most of the episodes the did not have her walking. She was sitting or standing behind a counter or a piece of furniture. Terri Garr announce that she had MS around the same time I was diagnosed. Besides her being in ADs for a MS drug back then I really haven’t seen her a lot. I understand there is a right to privacy, but I can’t help but think about her and I would really like to see how much she has been affected and how she deals with it. For years I saw clips of Annette, before I had it, and to be honest they terrified me. She had it before the new meds I want to see how those who have had it longer than me that have been on meds are getting along. Only from a distance and not in a support group, because those have been depressing to me. Too overwhelming. I think a celebrity that has MS should do a reality TV show, but it shouldn’t be cut to make everything look okay. It should show as much of the ugly MS parts as possible.

  • Devin Garlit moderator author
    4 years ago

    I too have been wondering about Terri Garr. I did read as of August 2015 that she was doing well, that she sometimes needs a wheelchair but she is happy. I would love to see a follow up with her though. The clips of Annette were truly terrifying, we are lucky to have had a number of advances though. My grandfather had MS and ended up very much like
    Annette, even ending up on a ventilator. So I tend to compare how I am doing to how he did, every MS is different, but I can’t help but make the comparison. If look at his progression versus mine, there is no doubt that the MS drugs can have profound effects. He took none and I’ve been on several different ones since being diagnosed and I am in far better shape. So having the drugs is a huge advantage to us!

    I also wanted to note that I too have had trouble in the past with support groups making me depressed. As much as they are encouraged, they can certainly have some negative impact as well, and I know for sure that at times I’ve been negatively impacted by them. Lately, I use several online groups as my support groups. They are much easier to just turn off and walk away when I need to. I agree, an MS reality show would be amazing!

  • cabotsmom
    4 years ago

    I felt guilty and a bit excited that she came out (finally) with having the disease. Guilty in that she admitted she can no longer run (difficult if you aren’t a celebrity with money and don’t have childcare at hand and have a toddler) and that stairs are very difficult for her (another one of our big problems.) People like Ann Romney who wear stiletto heels and are up on campaign trails for 12 to 15 hours and carrying grandchildren up and down stairs in those heels, looking fresh as a daisy, make it hard for the rest of us to justify our illness to everyone and yes I have to justify daily to my husband and to others that YES I feel like literal crap but I look okay. I loved that she wrote about having to think about every step you take so you don’t show the world how much you are struggling to look somewhat “normal.” Montel will never be seen walking. He is either behind a desk or sitting when first you see him on TV so who knows if he can walk or not. Same with Nancy Davis, the tirelessly wealthy woman who raises much money for research – she appears on TV shows but always sitting. She says how great she is doing and she looks very well but no one has seen this woman walk and there is always a teleprompter in front of her so who knows if she has cognitive issues. As for Jack – well he is a young man with a young wife and 2 small children and the backing of the crazy, but supportive Osbourne clan. We are all not so fortunate. I have fought this uphill battle for 15 years alone. Yes I have a husband and son, but they choose to look the other way and not really acknowledge my disease and I had a sister and mother when first diagnosed but after diagnosis they were nowhere to be found. My friends – hm, what friends. The minute someone hears you have a chronic disease they feel they might have to do something for you OR the worst case scenario – they may eventually have the disease themselves so they start to depart, ever so slowly but they do leave. So her coming out with this (I am sure it is because her symptoms are beginning to show) is a good thing as there is a feeling of “I am not alone in this fight” and bad because she undoubtedly has a lot of support and help and will look well for as long as possible and then disappear into the night as did Terri Garr but as the person before me stated – there is this sense of feeling more secure as there is safety in numbers and just knowing you are not alone in this battle makes a huge difference. I just wish celebrities would be more open and honest about their struggles but then again I understand why they don’t as they make a living from their looks where we mortals just try to make a living no matter what. I wish her the best and hope she finds the treatment she needs to seemingly look and feel as good as Ann Romney.

  • Devin Garlit moderator author
    4 years ago

    I agree, something about Jamie-Lynn’s announcement really hit home. She seemed more down to earth, more like me. She wasn’t afraid to mention her issues. She actually sounds like someone who’s been through what I’ve been through and as odd as it sounds, that helps me.

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