Linked via the Board: Conversations about lupus

By Emily Gillespie, Ph.D., Lupus Link Minnesota Board of Directors

“Maybe stories are just data with a soul.” 
― Brené Brown

I’m a very data-driven person. I love numbers, charts, Excel spreadsheets, and cool data visualizations. Having spent 17 years of my life engaged in lupus research, I’ve given many talks about lupus over the years. Most of these talks were vehicles for sharing data. My PowerPoint slides would be filled with tables, charts, figures, and whatever fancy, new-fangled, hyper-colored method I was using at the time to try to display my latest complex dataset. Swimming in the depths of numbers and data patterns is my idea of professional bliss.

Recently, I was asked to speak on behalf of Lupus Link Minnesota to a Women’s Health Issues interest group from the University of Minnesota Women’s Club. The topic would be lupus and related autoimmune diseases. I jumped at the chance, thinking that this would be both fun and easy. After all, I could just dust off one of my old PowerPoint presentations and re-purpose it for this event. But I later learned there would be no computer support, no projector, and thus no PowerPoint. 

As much as I love my data, it’s much more powerful to hear someone’s story illustrating the point. 

Happily, this forced me to re-think what it was that I hoped to accomplish with this opportunity. I realized that I didn’t want to give a lecture, or dazzle them with data. Instead, I wanted to have a conversation about lupus. Sure, I wanted to share information with them, but I also wanted to hear their voices. What questions did they have? What did they want to know more about? And most importantly, what could they share with me about any experiences they’ve had with lupus or other autoimmune diseases? 

So I pulled up a chair and framed the conversation around three main messages that I hoped they’d remember the next day:

  • Lupus is difficult to diagnose. I told them about the different signs, symptoms, and lab tests that have to be assembled together like pieces of a puzzle to reach a diagnosis of lupus. I admit I gave in and shared with them a little bit of data from one of my research studies, which had revealed that in a group of 300 patients, there were 175 different combinations of symptoms that had led these patients to a diagnosis with lupus. No wonder it sometimes takes years to make a diagnosis!
  • Lupus mainly affects women. I shared with them that 90 percent of lupus patients are women, typically between the ages of 15-45 years old. But … men CAN get lupus, and so can children and older adults.
  • You can get involved. I told them about Lupus Link Minnesota, and invited them to visit our website for more information. I also encouraged them to check out forthcoming events, not just to learn more about lupus, but to experience the incredible community that will rally to support patients with lupus and their loved ones.

And, most importantly, I heard their stories. One woman told us that her niece had been diagnosed with lupus, and that it had taken three years for her to get the diagnosis. She was able to share with me from her own experience that lupus is indeed difficult to diagnose. 

As much as I love my data, it’s much more powerful to hear someone’s story illustrating the point. 

I also heard about how the prospect of taking chemotherapy drugs to treat lupus can be scary. This fit in with a conversation about how there’s a lot of focus on developing new treatments for lupus that are more specific and tailored to the disease, or even to the individual patient. And I heard great questions, which energized me for the work we have ahead of us at Lupus Link Minnesota to increase awareness, fund research, and provide support and education. 

To be honest, I will probably always be a data-driven person. But my experience so far with Lupus Link Minnesota has reinforced for me that stories truly are data with a soul. And even I can acknowledge that stories can be more compelling than data. So I’m grateful that I had the opportunity to hear these stories. And I hope that in the near future I’ll be able to hear more of them.