Since announcing her multiple sclerosis diagnosis almost exactly one year ago, Selma Blair has quickly become an outspoken advocate for people with the chronic disease. With a healthy dose of humor, she’s shared her experience with chemotherapy and the challenges of parenting a 7-year-old while living with an often debilitating illness — but she experienced years of silent struggle before doctors took her symptoms seriously, she shared at the TIME 100 Health Summit.
When asked by co-panelist Dr. Mehmet Oz if she would have done anything differently looking back on her journey with MS, she shared that she would have advocated for her own health sooner. “I would have asked for an MRI,” she said. “I just didn’t ask for that simple tool and no one thought to give it to me.”
There’s no single definitive diagnostic test for MS, a disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. But an MRI is an important tool for diagnosis and for monitoring the progression of MS, since it can reveal lesions on the brain or spinal cord, according to the National Multiple Sclerosis Society.
Blair shared that she experienced undiagnosed MS flare-ups dating back to 2011, but minimized them. “Before my son was born I definitely noticed rapid aging happening in my 30s that was very painful; I burned all the time,” she shared. “But I just felt like I got arthritis or something.”
She went on to explain how she downplayed other MS symptoms, like blurred vision, slurred speech, extreme exhaustion, and unexplained body pain and numbness: “I was very active horse jumping and I just thought, ‘oh I just pinched a nerve, that’s why I have numbness.’ I’ve always had a lazy eye, so [I thought], ‘What’s the big deal if you go blind one day?’”
Part of it was her own tendency to assume the best, rather than jumping to the worst case scenario. “I just thought, well, human bodies are strange. I’m not a hypochondriac. I’m the one who’s like, we’re resilient!” she shared.
But despite making several doctors visits for her worsening physical symptoms — which became debilitating after the birth of her son — she felt worse and worse, and eventually became “incapacitated” she said.
“I thought it was postpartum depression. I went on antidepressants. I went on a macrobiotic diet … I thought, ‘I’ll just get on the right vitamins.’ I should have asked for an MRI when I stopped being able to use my leg. And I didn’t. My doctor would see me dragging my leg in, and I’d laugh about it,” she said.
Now that she has answers, she feels no shame about her diagnosis or her path to finally getting it. “I wasn’t even scared of death. I made some crocodile tears because I thought that’s what you’re supposed to do when you get a diagnosis, but I was actually relieved,” she said.
She also hoped that, like other actors she knows living with the disease, her experience with MS would be “fleeting.” “But my symptoms were kind of flamboyant. I have glitches,” she said.
There was another reason she came forward: “I didn’t want people to think I was drunk because I have a history of ... that,” she joked. “And I’m sober. And I’m so proud of it. That was really the reason. I’d rather someone think, ‘oh she’s going to be in a wheelchair’ than, ‘she opened the mini bar.’”
At the end of the day, she says she hopes being transparent about the ups and downs of living with MS will help others living with a chronic disease feel less isolated. “I’ve seen people be so comforted when I wore a cane to a glamorous event, which I didn’t think about, I just didn’t want to fall,” she said of stepping out at the Vanity Fair Oscar Party earlier this year with a cane in hand. “It means something to them. So, I’m glad I’m useful!”