Living with Lupus: Siya’s Story
From University Student to Lupus Advocate
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
What should have been an exciting new chapter for first year university student Siya quickly turned into a period marked by confusion, worsening pain, and unanswered questions.
Raised in Ottawa, Siya enrolled in biomedical science and psychology at her local university, driven by her interest in pursuing medicine. But as she studied the human body, her own began showing signs that something was seriously wrong.
Symptoms No One Could Explain
Siya first noticed unusual chest pain and heart palpitations.
“Throughout the day, I would start sweating randomly or be out of breath. This was all out of the ordinary for me,” she explains.
She visited her family doctor, but no clear answers emerged. As the months passed, her symptoms intensified. By her second semester, she was experiencing severe joint pain and chest discomfort so intense that her parents had to help her walk and sit down.
“I wasn’t able to go to school anymore,” she says.
Frequent emergency room visits brought little relief. Instead, she was repeatedly dismissed.
“They kept saying it was hormone changes because I was 19. They called it a second puberty.”
In less than a year, Siya’s health declined rapidly, and she was still searching for validation.
Recognizing Lupus in the Classroom
Despite the pain, Siya pushed herself to continue into her second year of university.
During a psychopathology class, she was introduced to Systemic Lupus Erythematosus for the first time. As she listened, something clicked.
“I immediately recognized the symptoms in myself.”
She returned to her family doctor and advocated firmly for herself.
“I told her, ‘You need to trust me. There is something wrong.’”
She was referred to internal medicine and, months later, met with a rheumatologist who recognized the malar rash and ordered blood work immediately. The next day, Siya was admitted to the hospital and diagnosed with lupus.
“I was there for about a week. They wanted to make sure my creatine kinase levels were going down because I was having kidney issues.”
After a year and a half of uncertainty, the diagnosis brought relief.
Living with Lupus at University
Now in her fourth year, Siya says her lupus symptoms are more manageable, though flares still occur during periods of high stress.
“The only thing is, a lot of the time I struggle with school. It can be tough, especially on long days, especially typing or using my hands.”
Receiving academic accommodations has been another challenge. Because lupus is often invisible, some professors did not fully recognize the legitimacy of her disability.
“Maybe if I had a visible disability, things would be different.”
She recalls being granted online attendance accommodations after her diagnosis. However, when she requested this in one course, a professor refused and advised her to drop the class.
“I was not really considered as well as I thought I would be.”
Turning Isolation into Advocacy
These experiences motivated Siya to take action. In 2025, she founded the University of Ottawa Lupus Organization to create a community for students living with lupus.
Isolation had been one of her biggest challenges.
“When I would say I feel tired, people would say, ‘Yeah, everyone’s tired, it’s university.’ It’s not really understood.”
Through this organization, Siya is working to increase awareness, educate faculty and students, and create a supportive space for those navigating chronic illness on campus.
Choosing Resilience
Even during the most difficult periods, Siya worked to maintain a positive outlook for her family and loved ones, who consistently supported her.
Therapy played an important role in her recovery, helping her manage anxiety and develop coping strategies.
“I realized that if I am going to live with a chronic illness, I could wake up every day feeling bad. But I chose to believe it would get better. And the moment I did, I began to feel better.”
Through her advocacy work and her studies, Siya hopes to continue challenging misconceptions about lupus and reminding others that seeking mental health support is a strength, not a weakness.
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.
