Living with Lupus: Magdalena S.’s Story
Magdalena S.’s Lupus Journey: Finding Balance, Strength, and Perspective
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
For 44-year-old Magdalena Sobczak, lupus has been a part of her life for as long as she can remember. She describes her childhood hospital visits as a “rite of passage,” something she once thought all children went through.
Growing up, Magda experienced what she and her doctors believed were “growing pains.” Joint swelling, stomach aches, rashes, and mouth lesions were a weekly occurrence.
At only 10 years old, Magda was admitted to her local Calgary hospital for several weeks due to a particularly bad episode.
“At the time, we didn’t really know what was wrong,” says Magda. “I ended up spending more time in the hospital than in my sixth-grade classroom before finally being diagnosed with lupus.”
Magda, by then 11, was quickly put on a treatment plan and offered some resources; however, mental health support was far less common in 1991.
She shares that her family were unfamiliar with what lupus was or what it meant for her in particular.
“I wasn’t informed what it meant. It was all very generic, and they weren’t trying to frighten me, but it had in many ways the opposite effect,” she says. “At 11, someone telling you ‘Hey, we thought you were going to die,’ I panicked like crazy.”
Magda kept her illness private, afraid that if others knew about it, they would see her differently.
“It was never explained to me why I couldn’t [do things], I just knew I didn’t feel good,” she explains. “Everything was just so hush, hush. I ended up feeling ashamed.”
Despite its impact on her quality of life, lupus never dimmed her passion for living; it fueled her determination to do everything and anything to the absolute fullest.
“I wanted to prove that I could do things too,” she says. “I didn’t need to be held back or pushed into a corner. Instead, having it [lupus] actually really prompted me to strive for a lot of things in life.”
Magda still lives by this same mindset today—to keep pushing through, no matter what. She acknowledges it’s a balancing act, admitting she has “definitely caused some flare-ups” by not listening to her body.
Magda has weathered all of life’s ups and downs while still maintaining a positive attitude. As she grew older, her perspective on her illness changed, no longer viewing it as a storm cloud looming over her.
“I have lived with lupus for three-quarters of my life. It has woven itself throughout my life, but it isn’t my life.”
For her, optimism truly is a mindset, not only because it impacts her mind, but also her lupus. In 2012, work-related stress caused Magda to experience a major flare-up, which led her to change career paths. Since then, she has been able to mitigate her stress through exercise, social events with friends and whenever she can, skiing with her son.
“I feel really lucky my lupus only impacts my lungs and joints and mostly only when during an active flare, which I try to minimize from occurring,” says Magda, “People say, ‘That sounds awful!’ But, I still get to live a fairly normal life, and not everyone who’s impacted by lupus or auto-immune disorders does.”
Advocating for herself and others with lupus has been an important aspect of Magda’s healing journey. Looking back, Magda realizes that the scared 11-year-old girl she was had nothing to be ashamed of and that’s why she chooses to share her story so openly today.
“You realize when you talk about it [lupus] openly, how far it reaches and how many people actually know somebody with it, and they are curious to understand more, I’m happy to share my story and experience.”
Magda explains that it has taken her almost three decades to get to a point where she can open up and find a sense of peace with lupus.
“Once I admitted to myself that this really can suck and stopped pushing it all down, I realized it’s okay to be angry. But, it is not important to stay there.”
She understood, for herself, that being miserable or in denial about her diagnosis did not change her situation.
“I certainly don’t celebrate having lupus,” she reflects. “I look at it more as a tough-love companion than a burden, because it will be a relationship I’ll have for the rest of my life.”
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.
