Billie Walker: Disclosing her MS diagnosis

A woman with relapsing-remitting MS shares the story of her MS diagnosis and disclosure.

Just as any individual labeled as a particular race can have genetic material from any part of the world, an individual’s experience of MS is just that — individual.

Billie Walker, diagnosed with relapsing-remitting MS in 2008, didn’t want to disclose her MS to family about her diagnosis.

One August day, Walker had parked her car and was on her way to the grocery store when the left side of her body just fell asleep. “Like when your foot falls asleep,” she recalls. She knew something was wrong but was confused by people’s reactions — or lack thereof.

“I looked around like, ‘Why isn’t anyone coming to help me?’” assuming she was visibly debilitated. But she could get back in her car and go home, where she noticed she looked perfectly fine.

She was confused — and alone.

She started visiting doctors to figure out what was wrong. There were tests and steroids — but she didn’t get better.

Finally, she had a lumbar puncture. “Mind you,” she says, “I was going through this all by myself.” And she absorbed the results by herself as well. “I said, ‘I have … what?’ I didn’t know what that meant,” she says of when she first received her MS diagnosis. When she looked it up online, “They give you the scariest scenarios.”

Disclosing MS is never easy
So, Walker was determined not to share the news.

“I knew when I told my family, they were going to think I was dying,” she says. She waited three months before she finally told her sister.

“I didn’t want to burden anybody.” That doesn’t mean she sat back and ignored the problem. “Whatever this is,” Walker recalls thinking, “it isn’t getting me.”

At 36, she graduated with a bachelor’s degree in human resources while working full time and raising her infant daughter. “I had to research how people lived with MS. I had to ask, ‘How do I survive with this? Because I’m going to.’” Then, she says, “I took it on with a vengeance.”

Back to “Race and MS: Confronting inequities.”