“Lucille Ball did a lot for women, and for me personally, and others with RA. She has been a particular inspiration for me since I found out she had rheumatoid arthritis (RA).” And this is why Kirsten Schultz, 27, started a petition asking Aaron Sorkin to include Lucille Ball’s struggles with rheumatoid arthritis in the upcoming biopic, starring Cate Blanchett.
Kirsten has had Still’s Disease, or systemic juvenile arthritis (JA), since she was five years old. “Last year, I threw my JA at 21st birthday party,” she said. Growing up in an abusive household, Kirsten did not have her disease treated until 2010. She has recently started Kineret, especially effective for systemic disease. She’s said, “the daily shot is interesting to get used to, but it’s working better than anything else.”
Lucille Ball and RA
The fact that Lucille Ball had RA is a surprise to most people. She first experienced symptoms in her late teens when working in New York as a chorus girl and a model. The symptoms progressed to the point that she had to move back in with her parents, where she spent several years in bed with what was clearly a severe flare. During this time she received injections of an experimental horse serum. The flare subsided after three years, leaving one leg shorter than the other, and Lucille Ball returned to New York to follow her dreams.
I Love Lucy, RA advocacy, and pain relief
When Kirsten was a child, she had a lot of insomnia. She coped by watching Nickelodeon and older TV shows, especially Get Smart and I Love Lucy. “Lucy was my favorite, I enjoyed the antics, the humor, and the joy she brought me,” she said. “I remember having a really rough day when I was five or six years old, turned on the TV and saw Lucy stomping on grapes. It was a pain relieving experience for me.”
As Kirsten entered college, there was a different focus on her JA. She found access to medical care and falling in love with her now-husband brought her into advocacy. “My husband is the biggest reason I got involved in health activism and writing my story.” They met in 2007 and she started blogging to explain juvenile arthritis to him, as well as getting medical information for herself. Kirsten has been writing her current blog, Not Standing Still’s Disease, since 2009. They married in August 2014 and now live in Madison, Wisconsin.
Kirsten’s husband was also the inspiration for her starting the petition for Sorkin’s film to include Lucille Ball’s experience with RA. “[He] sent an article about the biopic. I thought someone had to take the reins and ask for a depiction of her struggle with RA. I thought she helped me so much, I needed to take the reins.”
The petition now has almost 800 signatures. “There’s been a great response,” Kirsten says. “People are shocked that they didn’t know about her RA — it’s a good awareness tool to learn about Lucy, and about RA.” She explains that a few people have been offended, questioning “why I’m trying to tarnish her reputation or hijack the film to make it about an illness.” She encourages people who are hesitant to sign to read the full text of the petition to learn more about the background.
Kirsten has recently found more details about the biopic. “I’ve learned that the focus will be on the marriage to Desi,” she said, but “even if they don’t include her RA, it’s been positive.” She believes the petition has shown “the power we have when we come together to accomplish a goal.”
Did you know that Lucille Ball had RA? Will you sign the petition?
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.