Karen Duffy talks living with a chronic illness: 'I'm not damaged goods'

Unapologetically is a Yahoo Life series in which women and men from all walks of life get the chance to share how they live their best life — out loud and in living color, without fear or regret — looking back at the past with a smile and embracing the future with excited anticipation.

Karen Duffy has a philosophy she lives by: "If you make beautiful choices, you will live a beautiful life."

The former MTV VJ and Model Patient author was diagnosed with a rare form of the disease sarcoidosis, called neurosarcoidosis, in 1995. Since then, she has lived with chronic pain — but has lived no less of a full life.

Her new book, Wise Up: Irreverent Enlightenment from a Mother Who's Been Through It, is told through a series of letters to her son Jack, who she shares with husband John Lambros.

"I wrote each chapter as a letter because I wanted the reader to truly feel loved," the former Coney Island Mermaid Queen, now 59, tells Yahoo Life. "I want to crowd the world with this feeling, so I wanted this radiant, incandescent vibe, and so by writing letters, I thought it would be more intimate for the readers to take in that information."

Though Wise Up is an intimate conversation between author and reader — which draws on both the wisdom of pop culture icons and philosophers — Duffy wanted to make sure that the book wasn't an example of "performative parenting."

"I thought it was very important to show my son that, no, there's a lot of jackassery that got me here," she explains. "There's a lot of wisdom in screwing up. I think that making mistakes and failure has a really bad reputation, but as we learn from the Stoics, the obstacle is the way. Often, the mistakes and the obstacles and the challenges are often what inspire us to go even further. I think that's a great way to parent."

Duffy's chronic illness is one such obstacle she's had to face — but, as she tells Yahoo Life, she's still "squeezing" the best out of life, even when living with sarcoidosis feels like carrying a "refrigerator" around all day.

"There is a lot of shame and embarrassment connected to chronic illness, chronic pain," she explains. "I was ashamed I was a burden on my family. That I was in the hospital all the time."

Though Duffy acknowledges that chronic pain can feel like a "punishment," she says that she believes "chronic pain and happiness can coexist."

“Chronic pain is not going to steal my joy," she says. "I believe that pain is inevitable. We will all experience pain, whether through emotional trauma, or physical pain, but we can eventually get past suffering."

She's learned, instead, to "peacefully coexist" with her illness.

"Everybody has something going on," she says.

Despite learning to thrive with her illness, Duffy says that it can be hard to navigate intimacy when "your body starts falling apart and betraying you," calling sarcoidosis "no beauty treatment."

"Your body starts falling apart and betraying you," she says. "When you are the sick partner in the relationship, your partner can be afraid of hurting you and can be afraid of touching you. I think it's important to be honest and understand that sometimes it's hard to talk about, but often the things that are hard to talk about are so important. It's very hard to talk about sex, it's hard to talk about death, it's hard to talk about the future. [It's about] being honest, and being forgiving, and not judging looking at myself as 'damaged goods.' I've got a lot to offer the world."

As for what she considers the "sexiest thing" about herself, Duffy says it's her sense of humor.

"It makes me feel good about myself because I can't control when my hair falls out or when I get a hunch back, when I grow a mustache, which are all side effects of medicine that I take," she explains. "I want to feel grateful for the day. So what I am most proud about is that I've maintained a sense of humor, I have really jimmied up my sense of gratitude, and I have really tried to give more of myself in kind gestures."

Duffy, who was named one of People's Most Beautiful in 1993, says it's vital for her to "live a very full life" because due to her illness, she's not participating in the world "80% of the time."

"I am at home recovering or resting," she says. "There's a spiritual equation that says 'Life is 10% what happens and 90% is how you respond. And so I try to respond with grace and with humor, it's an intoxicating combination."

Despite the challenges her illness presents, Duffy is "unapologetic" about living with chronic illness and pain.

"I understand that this is not a flaw," she explains. "These things happen. I'm not damaged goods. I am going to absolutely extract the most I can out of every day. And I won't allow my illness to hold me back."

–Video produced by Stacy Jackman

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