After losing vision in his right eye, which he later learned was due to optic neuritis, Osbourne went to an eye doctor for advice. That was the beginning of a series of trips to specialists. “The eye doctor sent me to the ER, and the ER was like, ‘We need an MRI,’ and then spinal taps, and blood work, and talking with neurologists,” Osbourne says. “Come to find out, that wasn’t my first exacerbation. About 18 months prior, my legs had gone numb, and it was all connected to the same thing.”
‘I Felt a Weird Obligation to Speak Out’
While many celebrities and noncelebrities alike choose to keep a diagnosis of MS private, Osbourne decided to go public about it very soon afterward. “I felt a weird obligation,” says Osbourne. “I’m in the public eye, and I thought it would really benefit people” if multiple sclerosis were talked about a bit more. After all, he continues, “MS is very common and a lot more common than people think,” but “a lot of people who are younger are nervous to let people know about it because of the stigma that comes along with it. I know a few people who keep it on the DL.”
‘Don’t Lump Everyone Under the Same Umbrella’
In reflecting on what he’s learned in his eight-plus years of living with MS, Osbourne says, “The thing that stands out to me the most is how quickly things are progressing, in the sense of what they told me the first day I got diagnosed to where we are now. It’s almost a different landscape.” Included among the things that have changed are, “I was told there’s no real value to diet change, and now we know that there is,” Osbourne says. “I was told there’s no significant benefit to exerting yourself through exercise, and now a lot of people will say the opposite, that having an exercise routine is really beneficial.” But in spite of the advances that scientists are making in understanding how best to treat MS, public perception of the disease remains mired in old ideas. “The most common misconception is that people think you’re not so able-bodied when you have MS,” says Osbourne. “Either that, or they’ll assume you’re fine because you’re not in a wheelchair. “I like to say that MS is as unique to the individual as their own fingerprint,” he says, adding, “The biggest thing is: Don’t just lump everyone under the umbrella of ‘This is MS’ because it really is so different for everyone.”
‘You’ve Got to Experiment to Find Out What Your New Baseline Is’
One of the television appearances for which Osbourne is remembered is his turn on Dancing With the Stars in 2013. Although he’d never danced previously, he and partner Cheryl Burke managed to place third. The effort came at a cost, however. “I actually got really pretty symptomatic during Dancing With the Stars,” he says. “I hid it well, but I was having really bad problems with fatigue and balance, and I started getting tingling up my arms and legs.” Still, it gave him a chance to show the people who said he couldn’t do it — and there were some — that he could. These days, for Osbourne, “Most days are good.” He is able to do high-intensity CrossFit workouts, “and for me it works and makes me feel good.” Fatigue is his biggest enemy. “There have been times I’ve had to pull my car over and take a nap in a parking lot. And I still get the occasional tingling in my arms and legs. But by and large I’m doing okay,” he says. Based on his own experience, Osbourne offers this advice those more recently diagnosed: “You’ve got to experiment to find out what your new baseline is. There’s going to be trial and error at first. It’s going to take a bit of time to figure out what you can do and what you can’t do, and to determine how to do the things you want to do.” RELATED: Can’t vs. Cannot: Defining Your Limits With MS
‘It’s the Least Sexy Thing to Get Spoken About With Regard to MS’
Although Osbourne is doing well physically, he is not immune to the anxiety that often accompanies living with MS. “A lot of the challenge of living with MS is fear, the mental health aspect of it — worrying if a symptom is being caused by MS,” he says. He shares this example: “I had this thing the other day where I lost a bit of hearing in my ear for three days. It turns out I just slept funny, but I was completely sweating it, wondering, Is MS affecting the nerves in my ear now? Am I going to lose my hearing? What is this going to mean?” Osbourne adds, “The most commonly shared symptom of MS is depression; that is the through line of most people living with the disease. It’s the least sexy thing to get spoken about with regard to MS, but in my experience, it’s probably the most important.” That’s why, he says, “It’s really important to have a system in place to combat it the best you can, because that takes more people out of the picture than anything these days.”
