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Lupus survivor returns to ND for book signing

Lily Hough | Thursday, November 19, 2009

Notre Dame graduate Sara Gorman will return to campus Thursday feeling healthy and strong as she signs copies of her new book “Despite Lupus: How to Live Well with a Chronic Illness,” in he Hammes Notre Dame Bookstore from 4 to 6 p.m.

But Gorman hasn’t always felt this good — she was diagnosed with lupus in 2001 and struggled for years to adjust her post-college lifestyle to the demands of the crippling disease before she was ready to publish a book about it.

At 26 years old, Gorman was newly married and recently promoted to a facility director at Henninger Media Services — in the midst of her “invincible period” — when lupus hit, she said.

“It was a shock to the system to be walking around like an 80-year-old with a cane, to not be able to do the things I did a week ago,” Gorman said.

Lupus is a chronic autoimmune disease that attacks the body’s organs and tissues, causing severe joint pain and an array of other painful symptoms. While there is no cure, patients often treat their symptoms to avoid flare-ups of the disease that can sometimes have fatal complications. But the treatments that Gorman’s physicians recommended meant she’d have to quit her job and put her plans to have a family on hold. But this self-proclaimed high achiever wasn’t ready to give in.

“I just tried to keep working and pushing through the pain,” Gorman said. “That was my strategy — to not adjust at all. I thought, ‘if I can get over this and just grin and bear it, everything will go back to normal.’”

Normal never happened. Gorman gave in to working part-time from home, but her health continued to deteriorate. A new medication offered her hope to restore her health, but made pregnancy impossible, which presented Gorman with a dilemma.

“I wanted to stay on schedule. I wanted kids,” she said. “Postponing my plans was a shock. I was no longer in control.”

Gorman decided to put her plans for a family on hold and became more aggressive with her treatments. But one adjustment was especially hard, Gorman said. Her new medication Cellcept not only prevented pregnancy but also caused her to lose all her hair.
“At first, I couldn’t cut it,” Gorman said. “It was all falling out and I looked awful, but I thought, if I just hold on to what I used to be, it might go back.”

She soon changed her mind. Gorman needed to move forward. Giving in wasn’t giving up, she said. It was “getting it.”

So she shaved her head.

“I looked like G.I. Jane,” Gorman said. “But I felt phenomenal.”

Gorman’s new haircut was “a real turning point.” When she adjusted her lifestyle, her health improved. Then the idea for the book came.

“You want to win over this illness and that’s not what it’s about. It’s about embracing it so you can move on,” Gorman said. “I wanted to share my story, that life with lupus can improve and this is how you can do it.”

Gorman, who was never passionate about writing, said recording her own story “came naturally.” Now published and hitting the shelves, her new book offers hope to those sitting in Gorman’s shoes years ago, encouraging readers to embrace their illness rather than ignore it. And the feedback has been “phenomenal,” Gorman said.

“It’s nice to be able to stand up straight and tall and proud and say if you work hard, listen to your body, and make difficult choices for your body, you can do anything you want,” she said.
After taking her self-imposed regimen, Gorman’s health has improved dramatically. She hasn’t had a flare-up since 2005, when she began her new treatments. With her new career as an author, she’s also working on an online blog and is returning to her original plans, but much stronger and wiser than before, Gorman said.

In 2008, she and her husband welcomed their first daughter, Deirdre.

“I felt proud, not just as a mother, but as a fighter,” Gorman said. “I thought, I’m doing this my way.”

The University will be a special stop for her tour, Gorman said.

“I didn’t even know what lupus was when I was here. If I had envisioned in college the things I would go through with lupus, I’d probably want to curl up and die,” Gorman said. “It’s great that my alma mater has embraced me and the book. It’s such an honor to come back, feeling fabulous and with so much behind me.”