Celebrities with MS Help Raise Awareness — but Can Also Spread Misinformation

Stars — they’re just like us — as Us Weekly often notes. They, too, can get multiple sclerosis. The media attention that follows can help promote understanding, empathy, solidarity, and donations — but it can also lead to unnecessary fear.

A few years ago, my teenage son remarked, “Having MS is all the rage.”

Indeed, it did seem that a slew of celebrities had recently come forward stating that they had multiple sclerosis. Among them were CNN anchor John King and actresses Christina Applegate and Selma Blair. And if you type a few keywords into Google, you’ll find even more famous names who revealed their illness in the prior decade.

I always feel a mix of emotions when a celebrity announces their MS diagnosis.

From where I stand, there is both good and bad in such media coverage.

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More attention, more awareness

It goes without saying that it’s never happy news to hear that someone has been diagnosed with MS. We know that it’s a chronic, challenging disease, and regardless of whose name is behind the statement, it’s nothing to be celebrated.

As someone living with the illness, I feel genuine empathy for the newest member of our tribe. I send a wish out into the ether that their path going forward is easy.

But whenever a celebrity announces their diagnosis, media attention is showered upon MS. We see interviews with the famous personality, interviews with their physician, and interviews with local patients who share the illness. Sometimes, a representative from the national or community chapter of an MS-focused organization even makes the evening news.

And with this publicity comes increased awareness of our disease.

Always a good thing.

We Americans love our celebrities, after all, and when they disclose a personal health issue, we pay attention.

A decade ago, after actress Angeline Jolie revealed her breast cancer diagnosis and subsequent decision to have a double mastectomy, researchers noted an uptick in people seeking care for their own symptoms. Now dubbed the “Angelina Jolie effect,” we know that celebrity disclosures often lead to an increase in early disease detection.

Further, the mere mention of a celebrity diagnosis often brings about a reduction in stigma and a rise in charity donations.

Less alone

And then there’s the unmeasurable benefit: the quiet sense among those who share the star’s illness that we are somehow less alone. When actress Jamie-Lynn Sigler revealed that her initial MS symptoms were tingling and numbness in her feet, many of us with the disease could relate.

When Selma Blair recalled being told that she had optic neuritis before her formal MS diagnosis, we unknowns anonymously living with the condition thought back to similar conversations with our own physicians.

There is a calm comfort in the sharing of a difficult, and somewhat rare, experience.

All told, when a celebrity announces their MS diagnosis, there are undeniable PR gains.

More misinformation, more fear

And then there’s the downside.

Sometimes celebrities are ill-informed. Like Christina Applegate, who compared her 30 brain lesions to herpes sores during an Armchair Expert podcast episode. But actually, MS lesions are areas of demyelination and scarring. (Her discussion on this topic begins around 48:45.)

Further, while correctly noting that today’s medications are not a cure, she then confused the issue by stating, “We’re prolonging life with these treatments now. Doesn’t mean that I’m gonna be around in 10 years.”

Most likely, she will, however: A study published in 2017 found that while life expectancy for people with MS was about 7 years shorter than for those without it, the average person with relapsing-remitting MS lives to be 77.8 years old, and the average person with primary progressive MS lives to the age of 71.4.

Applegate also suggested on an episode of MeSsy, a podcast that she cohosts with Sigler, that her legs hurt because she couldn’t “get circulation” to them. MS doesn’t cause circulation problems, though. The pain she feels in her legs is likely due to the nerve damage MS causes.

Those of us who are knowledgeable about MS may brush away such faulty statements, but those who are unfamiliar with the disease may take her words as fact. Any benefit that results from restarting the public conversation about MS is more than erased by the damage done through misinformation.

But that’s only half of it.

Processing in the public eye

On the other hand, Applegate also gives the newly diagnosed permission to process their illness on their terms.

Many of us remember the early years after learning we had MS. We felt anger, fear, sadness, and loss. MS forced a massive adjustment, and most of us needed time to make peace with our new normal.

Applegate, it seems, is having difficulty getting there and is apparently working it all out in public. On the Armchair Expert podcast, she acknowledged, “I’m not ready for the healing yet … I will get there, but when someone says, ‘Have you accepted this as your new normal?’ No. F*** you. Absolutely not.”

Still, when she said in other interviews that with MS, she lives “kind of in hell” and that “with the disease of MS, it’s never a good day,” she’s hardly a beacon of hope for those who are newly diagnosed with MS, or for their families.

Yes, we all feel like we’re living in hell sometimes (let’s be honest), but it’s rarely the norm, and it’s definitely not the message I’d broadcast to the world if I had a megaphone.

We can only wish Applegate our best and cross our fingers that she comes back in a few years with good news to share and a brighter perspective.

A grain of salt

Ultimately, celebrities are just regular humans with more followers (and heftier bank accounts). When they come forward with personal medical news, it best to consult doctors or reputable health sites for confirmation about their statements.

Applegate’s life, replete with only bad days, need not have anything to do with anyone else’s experience.

The takeaway

I often think about CNN’s John King, who made an impromptu decision to disclose his MS diagnosis on the air in 2021 when discussing the COVID-19 pandemic. He noted that his disease-modifying therapy at the time compromised his immune system, thus putting him at greater risk of contracting the virus; and he wanted to share a personal story that highlighted why he was “grateful for those who get vaccinated and wear a mask.”

Later, when discussing his MS in more detail, he added: “I know I’m lucky, but MS is with me every day. I haven’t had full sensation in my legs since Bill Clinton was president.”

Like King, I know others have it worse, but MS is tough.

And if I can thrive with this disease, maybe others can flourish, too.

I think that is the message I’d broadcast to the world if I had a megaphone.