Together We Will

Together We Will… Educate to Self-Advocate

Sara Gorman was healthy. She visited her doctor once a year for an annual check-up. She had a career she loved in television and had just married the love of her life. Then, six weeks later she was diagnosed with systemic lupus at the age of 26. Overnight her very new husband changed from being her partner to her caretaker. For the first few years, Sara dealt with her illness by fighting it. She held onto her career and did everything she could to maintain life as she knew it. As a result, she developed further heart and lung complications, kidney problems, and lost her hair a number of times.

“Lupus infiltrated my life so unexpectedly that I had no idea what to do. When you’re healthy, the concept of a chronic illness is completely foreign. It took me two to three years to wrap my head around the fact that this wasn’t going to go away with a Z-Pack. I was going to have to embrace it and start accommodating for it.”

With her diagnosis, she was given a number of reading materials and advice to prepare her for what to expect. Mainly depression, fear, anxiety, exhaustion…the list goes on. But Sara was still young. She wanted to get out, be active, but with Lupus, she even needed to embrace a new relationship with the sun. What she really needed was information on how to live with lupus and more importantly, live well. This realization was a turning point and the beginning of her career as an author, blogger and designer.

In order to truly live with lupus, Sara needed a blueprint; a positive approach to managing the disease. She chartered a new plan for herself and turned it into the book “Despite Lupus: How to Live Well with a Chronic Illness”. She addressed the mistakes she made in denying her disease in her first few years and explained how people and their support teams can respond to their diagnosis in a positive and healthy way. When life hands you lemons, you make lemonade and share it with everyone!

“When I first went on tour to share the book readers would say things like, ‘gosh, I could have written pages 12 to 15 myself!’ Others have handed the book to family and friends to help them understand their life with lupus. When you have a chronic illness, it can be hard to find your voice and share what you’re experiencing with others. Helping people overcome that and be positive about it means so much to me.”

The key to living well is not only Sara’s positive “can do” approach, but also understanding her needs and sharing them with her support team. You need to be your own patient advocate. She learned to say “no” in order to care for herself. When she says no, it’s not about putting her life on hold to care for herself. It’s all about caring for herself so life can continue. This can be a tough idea to embrace, especially for working mothers. Luckily, her husband has been there since her diagnosis. Her daughters, now eight and 10 years old, have grown up with a mother with lupus.

“I am who I am and I’m better when I’m healthy and happy. My kids understand that having a healthy mom means letting me rest. If I need to take a nap instead of going to a softball game out in the sun, they fully embrace it and support me. They even go so far as to make sure I’m protecting myself, like wearing skin protective clothing and a sun hat outside. Watching them grow up with empathy and compassion for their mother and others is wonderful. My illness might slow me down, but I will not judge myself for going at my own pace in my professional or personal life. It’s what I need to do to live well.”

To learn more about Sara’s journey with lupus, her workshops, book or one-of-a-kind pill cases, you can visit her blog Despite Lupus or website Pillfold. Five percent of all purchases are donated to various organizations that are promoting awareness, or doing something to improve the lives of lupus patients.

Sara will also be the keynote speaker on October 27th for the 18th Annual North Carolina Lupus Summit.

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