Living with Lupus: Maria’s Story | Diagnosis, Cancer & Listening to Your Body
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
Maria’s journey living with lupus began long before she had a name for what she was experiencing. Since the age of 16, Maria had been stuck in a “mysterious illness” limbo, experiencing persistent symptoms such as photosensitivity, nosebleeds, dizziness, and swollen joints without a clear explanation for what was causing them.
“I would get these rashes that I often thought to be sunburns. Of course they weren’t sunburns at all,” she says. “All of these things would flare up, and then just go away.”
Maria was already familiar with autoimmune conditions, having grown up in Guelph, Ontario, with a father who lived with several acute autoimmune diseases and having worked in the health care industry for more than two decades.
Maria suspected that, like her father, she suffered from an autoimmune condition. She believed that the way her body reacted to stress, often resulting in flare-ups, was a key indicator.
“I was familiar with lupus but not aware of how extensive the symptoms could be. Not all of my symptoms were necessarily typical of it.”
While studying in college and boarding with a family, Maria met a woman with lupus.
“She was so sick and on such heavy doses of prednisone. Unfortunately, she didn’t live much longer, I don’t think.”
The memory of the sickly woman stayed with Maria, as she remembered what she was going through. It wouldn’t be until later that lupus would unexpectedly reappear in her life.
Years of Searching for Answers
Maria started experiencing severe episodes of vertigo that left her debilitated for days at a time. She worked closely with several doctors and specialists to investigate the cause of her symptoms, but despite their efforts, she did not get much better.
“Nobody could really put things together. It was a little of this and a little of that. It was just a bunch of really weird symptoms happening constantly.”
As a heavier-set woman, she often felt that her symptoms were dismissed because of her weight. She was repeatedly told that she could “lose a few pounds” and that doing so might resolve the symptoms she was experiencing.
Maria began to feel that she could not openly discuss her symptoms with some doctors, as her concerns were often dismissed or attributed to her weight. As a result, she sometimes allowed symptoms to go unaddressed for longer than she felt they should have.
Further complicating things, Maria frequently moved from city to city for work, which meant regularly changing doctors. She believes this contributed to the delay in receiving a diagnosis, as each doctor only had one piece of the puzzle.
“It made it difficult for the doctor I was seeing at the time to see the whole picture.”
Things continued this way well into her 40s, until a camping trip in 2003.
Receiving Her Lupus Diagnosis
On this outing, Maria was bitten over 60 times by mosquitoes, which caused her immune system to go into a complete frenzy.
“I was sitting at work the next day, and I couldn’t hold a pencil. I kept dropping it because I couldn’t feel my hands – they weren’t functioning. That is when one of the doctors in my office said, ‘You need to get to your doctor immediately, there is something seriously wrong here.’ And that’s when I got myself really looked at.”
Maria and her doctor worked closely together, going back to the beginning of her symptoms and trying to piece together the puzzle of what was happening. Her doctor was determined to uncover the cause and reassured Maria that they would find answers.
After several holistic investigations, Maria’s doctor was confident that she had lupus. But there was some pushback from other doctors, as they did not feel Maria’s presentation fully aligned with the typical characteristics of the disease.
“She was the first doctor who actually listened to me,” says Maria. “But I was also confident it was the right diagnosis.”
Coincidentally, Maria was referred to the same internist who had treated her father when he was very ill, and also confirmed her suspicions.
Maria was provided with a treatment plan that helped manage her symptoms for some time. Although her health was never entirely in the clear, it remained stable enough for her to continue working and devote time to her passions, including art and photography.
More Than Two Decades Living with Lupus
For more than 23 years since her diagnosis, Maria had faced the many symptoms lupus hurled her way and had learned to manage even the most difficult periods. But last year, she was thrown a curveball that even she could not have anticipated.
Maria’s rheumatologist began to notice some atypical symptoms and brought them to the attention of her family doctor. This eventually led to a referral to an oncologist.
In July 2025, she was diagnosed with cancer, which was devastating for both her and her family and friends. Maria was unsure just how much more trauma her body could take.
In October, Maria underwent a procedure to remove the cancer, but complications soon followed, including an infection that required further medical intervention.
“I had to get emergency hernia surgery, and within a period of three weeks I had two major surgeries,” shares Maria. “From that second surgery, they had to delay my cancer treatments for three months until that wound healed.”
Navigating Cancer Treatment and Lupus
When it came time to begin radiation, Maria faced another challenge. Because treatment needed to begin as soon as it was safe to do so, she had to stop taking her lupus medications to ensure the radiation could be administered effectively and safely.
This was incredibly difficult for Maria. Within a few months, her body was back in a full-blown flare-up while dealing with the radiation side effects.
Maria describes this period of her life as one of the most difficult and painful experiences she has ever endured, one that truly tested her both physically and mentally.
Today, Maria has completed her radiation treatment and has been able to resume her lupus medication as she continues to recover and regain her strength.
“I think one of the biggest things people don’t realize is that the minute you ring the bell at the hospital, everyone thinks you’re cured. They think everything is hunky-dory and that you’re just going to go back to your old self. That couldn’t be further from the truth.”
Maria shares that since finishing radiation, her lupus has been rampant in her body. Her symptoms came back with a fury and vengeance she hasn’t seen before.
“I am trying my very best to remain positive, but I am not a happy camper some days.”
For Maria, cancer was just half the battle. The last time she felt this uncertain about her health was before she was diagnosed with lupus.
“You’re always questioning every ache or pain. Is this a cancer issue? Or lupus? Or arthritis? You never know what you’re dealing with anymore.”
Learning to Listen to Your Body
Maria says that, throughout everything she has endured, one of the biggest lessons she has learned is that just because you are used to pain does not mean you should have to live with it.
“You become very resilient. You know the pain is there, you’re aware of it, but the mindset becomes: it’s not bad enough yet.”
Maria explains that sometimes it is okay to cry and let go of the need to always put on a brave face. Give yourself the time and space to grieve, to be angry and to cry. What matters, she says, is always finding a way to persevere and thrive.
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].
