This Is What It’s Like to Be Diagnosed with—and Live with— Multiple Sclerosis

An MS diagnosis lead Jack Osbourne, rockstar Ozzy Osbourne's son, to become an advocate for MS patients everywhere.

 

Courtesy James BranamanWhen Jack Osbourne was diagnosed with multiple sclerosis (MS) five years ago this month, he says it was his family, including his parents, Ozzy and Sharon, who bolstered him up and kept him strong. Diagnosing the condition is tricky, which is why it’s important to know the the silent signs of MS.

“My dad was around a lot, he asked a lot of questions and was with me through my entire diagnosis process,” he says. “My mom, too—and to have them in my corner is crucial: To hear your parents say ‘hey listen we’ll figure this out as a family’ made me feel like I wasn’t alone. My heart breaks when I hear about people who have MS and don’t have that support and they’re in a bad way. It makes me feel very fortunate.”

For the last few years, Osbourne—a married father of two daughters—has become more than a MS patient. He’s now an advocate for MS awareness with You Don’t Know Jack About MS, a campaign in partnership with Teva Neuroscience, that aims to be a resource that educates people about the disease in a way that’s easy to understand and shows that you can live a fulfilling life with MS.

“I have a hard time connecting when watching videos featuring an expert wearing a white lab coat and standing in an immaculate set,” he says. “I wanted to create a destination website that would answer my questions in a really simple form but I also wanted to dispel the myths about MS,” he says. Designed for people living with or curious about MS, the site contains educational content, downloadable patient resources, a series of webisodes about life with MS, and blog posts from Jack, his friends, and family members.

The site’s latest webisode, How I told My Family About My MS Diagnosis, was inspired by Osbourne’s own experience as well as by a note he received through social media.

“A professional athlete who has been living with MS but hadn’t told anyone about the disease sent me a message,” Osbourne says. “It dawned on me that there are a lot of people out there who don’t have the confidence to have that conversation.”

(Read about actress Terri Garr’s take on dealing with her MS diagnosis.)

Osbourne also uses the episode to offer tips.

“My family’s initial reaction was worry and they kept saying ‘do you need anything, do you want anything,'” he says. “I kept saying ‘I’ll let you know.’ And I think that’s why in this webisode, I bring up that point. I advise people to tell your family the way you want to be helped. It took a minute to draw those lines out with my family, to say you don’t need to do that and I’ll let you know if I need anything. It was more like I’d say, ‘My shoulder hurts’ and their immediate reaction would be, ‘Is it the MS?’ I’d say ‘No, my shoulder just hurts.'”

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A journey fulfilled

Courtesy James BranamanOsbourne’s MS journey began five years ago when he was paying for gas after coming home from a movie and noticed a black dot in the center of his vision in his right eye. He soon developed optic neuritis, an inflammation of a nerve in his eye that is a potential symptom of MS, and became about 90 percent blind. (MS is one of several conditions eye doctors are often the first to detect.)

“Next thing you know, I feel like I’m an episode of House, and they give me the news that I have MS,” he said. “I had no idea what MS is, so it was really quite freaky to be honest.”

He was put on intravenous steroids, which restored the vision in his right eye, but he says it has never fully come back.

To find out more about MS, Osbourne researched the condition online and spoke with a family friend who runs an MS charity. These days, Osbourne is doing well and manages his disease with an injectable treatment three times a week. “I inject myself which was a big adjustment,” he says. “There are a dozen treatments out there, but I wanted to find one that allowed me to live the way I wanted to live. I thought if an injection would be my best bet to meet those goals than that would be something I’d do.”

Emotionally, the disease can be very challenging, says Osbourne. “The most common side effect of MS that most people will experience at some point is depression or having some kind of mental health issues as a result, he says. “There are times where I do slip into a funk. It could be that I’m predisposed to having depression, or it could be MS.”

Regardless, Osbourne says he handles it the same way he does anything.

“I have to keep putting one foot in front of the other and keep an end goal in sight,” he says. “My daughters help for sure. Having the responsibility of taking care of them, being married and producing and hosting TV shows helps so I can’t just lay in bed—I have to keep things moving along.”

In the end, he hopes You Don’t Know Jack About MS becomes an immediate go-to to newly diagnosed patients.

“My ultimate goal is to create a website where when someone gets diagnosed, the doctor suggests he or she visit our website,” he says. “That’s my goal. I want this to be the MS one-stop-shop.”

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