Living with Lupus: Eunice’s Story | Dance, Determination & Self-Advocacy
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
For 22-year-old nursing student Eunice, traditional Chinese lion dancing and Wushu (Chinese martial arts) have always been an integral part of her culture and life. Since she was six, Eunice spent most weekends travelling across North America with her team, performing at competitions, events and even weddings.
“It is my whole life.”
Nearly 10 years earlier, while visiting Montreal with her classmates on a school trip, Eunice noticed her fingers and feet starting to lose sensation. At first, she thought it was normal because of the very cold temperatures of the Montreal winter.
“But then I noticed my fingers had gone completely white,” says Eunice. “I didn’t think much of it until people would see my hands and be concerned.”
When she returned home to Scarborough, Ontario, Eunice made an appointment with her doctor, who explained that she had Raynaud’s syndrome, a symptom of lupus.
At just 13 years old, Eunice was vaguely familiar with lupus through Selena Gomez, who has openly shared her experience with the disease. Eunice recalls feeling concerned, particularly because she knew that Gomez had undergone a kidney transplant due to complications from lupus.
Following blood tests, Eunice was officially diagnosed.
“I was worried. I thought, ‘Oh my gosh, are my organs going to start failing?’”
With her family’s support, Eunice learned to roll with the punches, doing her best not to let her diagnosis keep her from lion dancing and school activities.
Navigating Lupus and the Activities She Loves
As she entered high school, her symptoms continued to evolve, affecting her ability to participate in the activities she loved.
“When we did lion dance outside, or cold, I still can’t feel my fingers or feet. They go completely numb, and I cannot use them at all.”
As a result, Eunice sometimes had to miss events she would have otherwise loved to perform at, such as the Etobicoke Santa Claus Parade, because of the pain and numbness.
The physical demands of exercise, martial arts and dance have also taken a toll on Eunice’s body, particularly affecting her ligaments and joints. Over the past six years, Eunice has had three knee surgeries after tearing her ACL twice.
“First it was an ACL reconstruction and a meniscus repair, then a revision, and then another reconstruction because I tore it again.”
For Eunice, these injuries and surgeries have been among the most challenging aspects of living with lupus, limiting her ability to fully participate the way she used to.
“After three surgeries, I’ve kind of lost hope of ever being able to perform at the level I once did,” she shares. “But, I do it anyways.”
Learning to Advocate for Herself
Since her diagnosis, Eunice is learning to grow confident in advocating for her needs and speaking more openly about lupus.
She shares that, in the past, she was more reserved about requesting accommodations or discussing her diagnosis with her peers.
“I didn’t want people to know or tell people.”
But when she started university, she realized that managing her lupus symptoms on top of everything else might be more challenging than anticipated.
“Before, I could take a nap after school, but now I have to study and do all these assignments.”
It was during this time that Eunice began to recognize the importance of using the accommodations available to her. What she once viewed as unnecessary, she now sees as needed to manage her lupus symptoms, participate in lion dancing and keep up with school.
She is also learning the importance of advocating for herself within the health care system, finding the confidence to speak up when she feels her symptoms or concerns are being dismissed by medical professionals.
Eunice says that, for the past seven years, she has experienced migraines that can sometimes be debilitating. Despite seeing multiple neurologists, she often feels her symptoms are downplayed and attributed to her taking on too much.
But she challenges this, asking, “Why can’t I achieve what I want to achieve?”
Continuing to Do What She Loves
Today, Eunice continues to participate in lion dancing, although her involvement looks different than it once did. She has found ways to adapt, prioritizing her health and well-being while continuing to enjoy the activity she loves most.
Let’s Talk Lupus: Conversations with Macenzie
Each month, Let’s Talk Lupus: Conversations with Macenzie brings you inspiring stories from Canadians living with lupus. Through these interviews, Macenzie, a Toronto-based journalist and writer diagnosed with Systemic Lupus Erythematosus (SLE) in 2017, shines a light on the experiences, challenges, and triumphs of those navigating life with lupus.
If you’d like to share your story, please email [email protected].
