As one of the 50 million adults living with chronic pain, the TV-personality turned spokesmodel turned New York Times bestselling author realized she could make a dramatic difference by sharing her story
Known for her velvet-barbed wit, Karen “Duff” Duffy was a mainstay in the 90s music scene with a stint as an MTV VJ which lent well to a modeling, acting and book-writing career. In an exclusive conversation with The Fresh Toast, Duffy shares that while one of her largest passion projects was steeped in pain, she had the upper hand all along.
“I’m a very healthy looking sick person,” she articulated. “I can sum up my journey in a few words: Career. Fertility. Self-respect. Resilience. Gratitude.” Diagnosed with the sarcoidosis, an inflammatory disease — which in her case is located in the brain — Duffy exclaimed the best medicine was creating a legacy for survivors, just like herself.
Before her days interviewing Anthony Kiedis from the Red Hot Chili Peppers at the MTV Video Music Awards, Duffy believes her best job wasn’t in front of the camera, but rather caring for elderly patients. “I worked in Gerontology — a form of recreational therapy in a nursing home and it was the greatest job of my life.”
Volunteering since age 12, Duffy saw pain and aging first-hand and decided at a young age she wanted to change how we treated those with pain and how we spoke words about pain. Explaining that her family modeled a deep care and concern for others, Duffy said one of her favorite Muhammad Ali quotes summed up her life’s mission, “Service is the rent we pay here on earth.”
On a phone call last week, Duffy jumped right in, exuberantly describing that as a health care system, we get pain horribly wrong. “Chronic pain feels like serving a life sentence,” she declared. “The body is being punished for a crime not committed and often, those that suffer with my disease do so alone.” Her illustration of the agony felt deep in her body, sometimes making her homebound, came down to a deep-understanding of the Latin language.
As one of the 50 million adults living with chronic pain, the television-personality turned spokesmodel turned New York Times bestselling author and advocate realized she could make a dramatic difference by sharing her story, which in turn created balm for the deeper wounds her pain left. Duffy quipped, “Pain in itself is embarrassing. Often those that suffer feel mollycoddled and even finding the right words can be hard to express.”
Feeling that pain infantilized patients in clinical settings, she created the Duffy/Murray pain scale, incorporating her infectious humor and family friend, Bill Murray, into helping patients explain their pain in a new way.
Pain is resistant to language and destroys the words that patients long to say. Often the silence or moaning mean so much more.
For years Duffy had looked for remedies as big as the ache was, and nothing seemed to meet the challenge. “On August 24th, 2019, I had instantaneous relief from my pain.” The difference wasn’t in a prescription bottle but rather a balm. “CBD oil was probably the last thing I tried.” After years of wearing lidocaine patches, (which often caused irritation,) the author described in her latest book, Backbone: Living with Chronic Pain without Turning into One, that two decades after the pain first emerged, she found a solution that is ever-near. “There is a saying that in NYC, you are never more than 3 feet from a rat. In my case, I am never more than 3 feet from my Tribe Revive CBD cream.”
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When asked how she could hold both pain and humor in the same place when so many struggled, a line in Duffy’s book encapsulated everything she said on the call, “My illness became my metamorphosis.” Coining the term, “No-cebo,” Duffy leaned into the phone receiver and almost whispered that it all came down to embracing the power of believing that a medicine would work. Feeling more like herself, and advocating for patients all over the globe, Duffy’s remedy came just in time.