When Jack Osbourne was diagnosed with multiple sclerosis at age 26, he thought to himself, How do I make lemonade out of this? How do I turn this into something good? His answer: partnering with the pharmaceutical company Teva Neuroscience to launch You Don’t Know Jack About MS, an online platform that provides insight and resources for people living with the disease and their family members. (Check out the latest webisode here.) Now at his five-year milestone with , Osbourne is still working to raise awareness about the disease. He spoke with Health about how he keeps his symptoms under control, his go-to stress relievers, and why it’s so important to live in the moment.
How has your condition changed in the years since you were diagnosed?
I’m doing really well right now—knock on wood. You can’t put a price on that. I’m healthy and haven’t had any significant flare-ups in a long time. I have relapsing-remitting MS, which means you get flare-ups and they go away.
What does a flare-up look like for you?
I’ve had two major ones, which led to my diagnosis. The first flare-up I had, and I had no idea what it was at the time, but my legs went numb for three or four months. They were very sensitive to hot and cold temperatures. If my belt buckle touched my leg it felt like fire. But then when I went and stood in a warm bath my legs would feel freezing. That went away after four months. And then about 18 months later I developed optic neuritis [which can cause eye pain and vision problems], and that’s what prompted me to go to the doctor.
Did you write off the numbness in your legs as an odd symptom that would go away?
I totally wrote it off as, “Oh, this is just some weird thing. I just pinched a nerve; I’ll be okay.” I was 24 at the time, I think. When I couldn’t see very well, I thought this is a problem I should probably get checked out. But I had no idea the symptoms were connected.
How is your vision now?
It’s restored, but my right eye never went back to fully normal. I like to say that my left eye is a 4K TV and my right eye is like a TV from the 80s.
Are there any other symptoms you notice day to day?
It’s not every day, but I sometimes experience what a lot of people call “zaps.” It feels like an electric current is shooting up and down your arms and legs, like you touched a hot wire. I used to get them more frequently, like I was getting them every couple of weeks, but now I might go a month or two without.
What is your diet and exercise regimen?
It’s funny, when you get diagnosed with MS the advice doctors give you is to get on a treatment plan, eat sensibly, exercise regularly, and minimize stress. Well, isn’t that kind of a recipe for good living anyway? I do as much as possible to keep my immune system healthy. I do that through eating right—I try and stay away from inflammatory food—and very rigorous exercise. I go to the gym three or four times a week. I go hard. I do CrossFit and endurance events.
What sorts of endurance events?
I’ve done everything from biking, to 10Ks, to Gold Rush challenges, which are like 10 to 20 miles carrying 30 pounds of weight in a backpack. I’m doing a 24-hour adventure race this summer. I like to get after it. But I also don’t like to rub that in anyone’s face.
Do you mean others diagnosed with MS who might not be able to be so active?
Exactly. I have to remember that I am able to do this stuff right now, and I’m proud that I can do it. But there are a lot of people out there with MS who can’t. That’s the really frustrating part about this disease; it’s so different for everyone.
Does stress affect you?
Stress is probably the thing that makes me feel the most MS-ey, so to speak. I feel a physical pull from . It makes me feel spacey. I think times where I do suffer from MS-induced depression, it’s in times of stress.
What has the emotional toll been like?
The emotional side of MS is the toughest part. Depression is one of the most common symptoms that people with MS share. It’s kind of like the elephant in the room. I even had it the week leading up to my wedding, and I certainly had nothing to be depressed about. I look at my two daughters and, not to get overly sappy, but there is that notion where if they get married, I might not be able to walk them down the aisle. I can get kind of heavy with it. There are times it just comes out of nowhere and really kicks me in the ass.
What are your coping strategies?
I’m a huge proponent of play. I have lots of hobbies I really commit to, and I use that as an outlet to de-stress, which helps with the depression. I’m also a fan of talk therapy. I’ve been going for a few years. I also think it’s important to have a social life.
Have you felt depressed recently?
I’ve actually been doing really well. Lately I’ve just experienced the human element of getting down in the dumps every now and then, but I haven’t had a really altering state of depression in a while.
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How have your relationships shifted?
My family and friends are starting to realize, “OK well, he’s okay. It seems like he’s got a handle on this.” Initially it was like all hands on deck, people asking, “What do you need, what do you want?” Everyone was being very nurturing. My wife is from Louisiana, and I was pretty much raised in England. The cultural differences when you’re British and you’re sick and you’re from the South and you’re sick are like night and day. When I get sick, it’s like, “Leave me alone, don’t talk to me, I’ll let you know if I need anything.” If my wife is sick, it’s like, “Rub my feet! Do this, do that! I need water!” I take the stiff upper-lip approach. I always have. I don’t require a lot of hand-holding. But it might not be this way forever. So I don’t want to piss off the people around me that might be holding my hand one day!
Do you have any insight into how your MS could progress?
My doctors give me broad strokes; they lay out what can happen. It’s not to say relapsing-remitting MS can’t turn into progressive—which means you’re in a constant state of flair-ups and your body just deteriorates as a result—if it’s not properly treated or handled. What I do know is that it’s a bit of a role of the dice. I could be great, great, great for years and then it could hit me like a ton of bricks. I have to psychologically prepare myself for that. And, as terrible as it is, you go to bed every night thinking, “Is tomorrow the day? And if it is, what’s the plan?”
What's the most frustrating misconception about MS?
The one thing I get is, “You look great!” I’m like, “Are you saying that because I have MS? What does someone look like that has MS?” That was kind of the reason behind starting You Don’t Know Jack.
Your daughters are young. How do you talk to them about it?
My 5-year-old [Pearl] sees me take my medication. I have an injectable I take three times a week, so she sees me inject myself and she’ll be like, “What is that? What does that do?” She loves playing doctor so she gets all excited. I think it’s fun for her. But when I explain that Daddy is kind of sick, she’s like, “Oh, OK.” I think as they get older they’ll be able to comprehend it a little bit more. But I’m very active with my kids. We’re always doing stuff, whether it’s going to the beach or park or camping. I try to be as active as possible because there is no guarantee that’s it’s going to be like that forever.
Have they inherited your adventurous side?
Pearl is like a fish, loves the water. I surf a lot so I’m hoping that in the next year or two I’ll get her on a surfboard. Andy is 2 but she is like my little climber buddy. We might get some camping trips in. I’ve been thinking about pulling the trigger and getting an RV. I want to do the whole Pacific Coast with them, go up to Washington. Oh, and they also like cats and unicorns too.
Do you want more kids?
I want like a whole baseball team.