Montel Williams opens up about how his multiple sclerosis went undiagnosed for 20 years

It has been 20 years since television personality Montel Williams was diagnosed with multiple sclerosis. By the time of his diagnosis in 1999, he had unknowingly lived with the condition for nearly the same length of time.

Despite flare-ups that felt like “his feet were on fire” and continuous doctors’ appointments, Williams went undiagnosed for nearly 20 years before he finally learned the truth. Now, he is looking back on his MS journey, speaking to Simplemost about why his diagnosis was a mixed blessing and how it taught him the importance of advocating for himself.

“There is no denying that being diagnosed changed the course of my life and changed who I am,” Williams told Simplemost.

“Three months before my graduation from the United States Naval Academy, I went blind in my left eye, which stopped me from actually graduating with my class. I received my diploma, but was not commissioned because I had additional symptoms that started right then that got misdiagnosed over the next 20 years.”

After suffering for nearly two decades, Williams was officially diagnosed with relapsing-remitting MS (RRMS) in 1999, eight years after his talk show, “The Montel Williams Show,” began. He says those decades of his life were “frustrating,” but considers the experience a mixed blessing because it taught him the importance of being his own advocate.

“At that time, it felt like no one believed me, but now I know the importance of speaking up if you are noticing changes with your body and how you’re feeling,” he said.

Williams is now partnering with a new program called My MS Second Act that aims to raise awareness about disease progression, including secondary progressive MS (SPMS). In partnership with the Multiple Sclerosis Association of America, Novartis and The Moth, the program empowers patients — through the art of storytelling — to share their disease progression and how they have faced the challenges of this “second act” of their MS journey.

“It’s crucial for those with MS to know that 80% of those like myself with RRMS may develop secondary progressive MS, or SPMS, and that they should be especially cognizant of new symptoms or changes in their disease,” Williams said.

Williams hopes that the My MS Second Act program will encourage patients to “share their stories in a meaningful way and will help them begin a dialogue with their family, friends and most importantly doctors.”

“I really wish this information had been available to me when I was diagnosed with MS,” he added.

Today, Williams says he is doing “very well” and he is thankful to have a platform from which he can help other MS patients understand the importance of being advocates for themselves on their journey. He urges others diagnosed with MS not to let the disease define them and to talk to their doctors about disease progression.

“As someone who reported other people’s stories for years, I know how important it is to be your own advocate and how powerful storytelling can be,” he said.

“Everyone living with MS has a unique disease experience. All symptoms are different and are identified differently, and this affects each person in a unique way. It’s important that people talk with their doctors to help identify changes in their MS.”

Williams says that while MS is frequently challenging, being a part of elevating the MS stories of others has been one of the “greatest honors” of his life.

To learn more about how you can tell your SPMS story, visit the TalkSPMS Facebook page and the Multiple Sclerosis Association of America’s website to download the digital storytelling toolkit.