Living with Lupus: Samantha S.’s Story
Dancing Through Lupus, Blood Clots, and Medical Dismissal
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
Professional dancer Samantha was no stranger to sore muscles and aching joints. As a high school student deeply immersed in competitive dance, physical pain was something she had learned to push through. But when a relentless, throbbing headache refused to ease despite repeated doses of Tylenol, Samantha knew something was wrong.
When she checked herself into the emergency room at her local hospital in London, Ontario, she was repeatedly dismissed as a moody teenager exaggerating her symptoms.
“I kept going to emergency,” says Samantha. “And they kept telling me I was depressed, or it was my hormones because I was 15.”
When Pain Is Not Taken Seriously
Day by day, Samantha’s headaches intensified until her life came to a complete standstill. She could no longer attend school, let alone dance. She found herself visiting the hospital almost daily, consistently rating her pain as a 10 out of 10.
“They told me my pain couldn’t be a 10 every time,” she recalls. “They said I was exaggerating.”
Her mother advocated fiercely on her behalf, reminding doctors that the severity of Samantha’s pain was exactly why they were there.
Because she was a teenager, emergency physicians refused to order an MRI, despite her repeated complaints of intense head pressure. Instead, Samantha was sent home and told she had a “Tylenol-induced headache.”
For Samantha, this period was devastating. Dance was not just a hobby — it was her identity.
“I just cared about being able to dance,” she says. “I felt like I was letting my team down because my head hurt so bad I couldn’t do anything.”
Life-Threatening Diagnosis
During a subsequent visit to the hospital, a last-minute MRI cancellation allowed Samantha to finally be scanned.
“When the doctor came in with tears in his eyes, I thought, ‘Oh no — what is going on?’”
The scan revealed a large blood clot in her brain — something that could have been detected much earlier if her symptoms had been taken seriously from the start.
“I didn’t realize how big of a deal it was,” Samantha says. “I was just relieved they found something.”
She was immediately placed on blood thinners and returned to school a few days later while doctors continued monitoring her condition.
Emergency Surgery and Returning to the Stage
Just as things began to stabilize, Samantha collapsed at school after experiencing severe head pressure, tunnel vision, and loss of balance. She was rushed back to the hospital, where she underwent emergency brain surgery and had a ventriculoperitoneal (VP) shunt inserted.
Following surgery, the headaches finally stopped.
Against the odds, Samantha returned to competitive dance just three weeks later after being cleared by her doctors.
“I won third overall in the whole competition,” she says. “It was a really big deal for me.”
But only weeks later, the headaches returned — along with another blood clot.
Doctors initially believed it was a rare complication following surgery. However, by the time Samantha was 17, she was referred to The Hospital for Sick Children (SickKids) in Toronto, where specialists began testing her for autoimmune diseases.
For the first time, Samantha felt relief.
“Finally, doctors were taking me seriously.”
Living with Lupus
Samantha was diagnosed with lupus shortly thereafter — a disease she had never heard of.
“It was the validation I needed,” she says. “I wasn’t just randomly getting blood clots. But I also realized how serious it was — that it could be fatal.”
Choosing Passion Despite Chronic Illness
As a dance instructor and choreographer, Samantha has learned to approach movement differently, giving herself grace — especially when it comes to lung capacity and fatigue.
“My lupus is pretty controlled until it isn’t,” she says. “But I still dance as much as I can. It’s the one thing I love.”
Working closely with young children, Samantha uses her experience to teach them the importance of listening to their bodies and appreciating each moment.
“You never know when you’ll be able to do this again,” she tells her students.
Her message is simple but powerful — and one she hopes to continue sharing in 2026 and beyond:
“I am not going to let lupus stop me from doing what I love.”
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 ariana.ranjbar@lupuscanada.org.
