Living with Lupus: Filomena’s Story | Persistence, Pregnancy Loss & Self-Advocacy
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
For most of Filomena’s life, she was used to being the person who somehow, someway, always managed to get sick and stay sick.
Growing up in Calgary, she experienced persistent stomach aches that became increasingly severe with age.
By the time she was 10 years old, she was making frequent trips to doctors’ offices, walk-in clinics and emergency rooms, searching for answers to the gruelling stomach pain that had become a constant part of her life.
Around the age of 18, with no real answers in sight, Filomena even underwent exploratory surgery in the hope of finding a resolution.
“Doctors thought maybe I had a tumour, but still they didn’t find anything,” she says. “They had no idea what was wrong with me.”
Her diagnosis kept changing, first from irritable bowel syndrome to endometriosis and later adenomyosis. Things continued this way throughout Filomena’s early 20s, and she came to believe that being chronically ill was simply a fact of life.
“This is just who I am,” she remembers thinking.
Pregnancy Loss and Unanswered Questions
But when Filomena began trying to start a family at 24, she suffered a stillbirth. With no obvious reason to explain what had happened, she was told that lupus could be the underlying cause of her pregnancy loss.
Filomena was not mentally ready to start any testing after the loss of her daughter, so she asked for more time.
“I waited about two months after she passed away to test for lupus,” she explains. “The tests all came back negative, so I continued on with my life.”
Filomena was able to have two children born 11 months apart after her first loss, though they were complicated pregnancies.
In the latter part of her 20s and early 30s, Filomena suffered multiple pregnancy losses, a heartbreaking sign that something else was contributing to her health struggles.
“Eventually, I kept losing babies. It just wasn’t making any sense. They couldn’t explain why I had lost so many as a young female that’s supposed to be healthy.”
Although doctors told her that further pregnancies could be complicated, she remained determined to fulfill her dream of a big family. Through strength and resilience, she was able to deliver two more children safely.
“I am very stubborn,” she says with a laugh.
When Lupus Became a Scream
Nearly 15 years after lupus was first mentioned as a possible explanation for her health issues, it resurfaced in Filomena’s life.
In 2016, her already fragile health rapidly deteriorated.
As she puts it, “bizarre things just kept happening.”
Her legs became covered in what she initially thought were rashes (later diagnosed as livedo reticularis). She developed numbness in her fingertips that caused them to turn white (Raynaud’s syndrome) and a red, blotchy rash spread across her face (Butterfly Rash).
Not knowing what was happening, she started to take pictures, a ‘visual diary,’ to document her symptoms and bring them to her primary care doctor and dermatologist.
“A picture really can tell the story your body was telling yesterday when today everything looks different,” she says.
“Symptoms don’t always appear during a doctor’s appointment. Swelling, rashes, skin changes, and other visible symptoms can come and go quickly.”
Her dermatologist quickly began piecing the puzzle together, asking Filomena whether anyone had ever sat down and looked at her medical history as a whole.
That question alone made her feel truly seen and cared for.
Suspecting lupus, her dermatologist worked with Filomena’s rheumatologist to help confirm the diagnosis.
“I will always say she was my gift,” says Filomena. “In that moment, she sat down and really listened to me.”
Within six months of her dermatologist appointment, Filomena was finally diagnosed with lupus. Now looking back, both she and her care team suspect it was lupus impacting her for nearly 25 years.
“Well, it is like they say, lupus is a whisper until it’s a scream.”
Receiving a Lupus Diagnosis
Today, Filomena still struggles with managing lupus, as it was untreated for so long that a lot of damage was caused to her body due to inflammation.
“If you had asked me years ago what my future would look like, lupus would never have crossed my mind,” explains Filomena, on her life before the diagnosis.
She shares that in the years leading up to her diagnosis, every negative lupus test brought a sense of relief. She was frightened by the uncertainty of what a diagnosis could mean for her and the life she had built.
“I was busy raising my family, working, volunteering, travelling, and living life. Looking back now, I can see that my body had been trying to tell me something for a long time, but like so many people living with lupus, it took years before all the pieces finally came together.”
Filomena describes receiving her diagnosis as bittersweet. While it validated years of unexplained symptoms and experiences, she was also frightened by what living with lupus would mean for her future.
“There are still days of overwhelming fatigue, unexplained pain, infections, and fevers,” she says.
Fighting to Be Heard
Most recently, Filomena was in and out of the Emergency Departments with a case of pneumonia that had consequences on her health.
“A lot of ER doctors don’t fully understand lupus, so I had to really fight to be heard and listened to when I told them it was very serious,” she shares.
“For the last six months I felt very medically gaslit, or made to feel things were in my head. A lot of my symptoms were chalked down to perimenopause, or I was told to ‘work out and exercise’ more.”
Fortunately, advocating for herself ended up saving her life, as her case of pneumonia led to serious inflammation and fluid around her heart and lung.
“Sometimes when nobody is listening, I just feel like giving up. But it is so important to listen to your body; nobody knows your body better than you do!”
The Importance of Self-Advocacy
Without a doubt, one of the greatest lessons lupus has taught Filomena is the importance of self-advocacy. That is also her biggest piece of advice to those who are struggling.
“If something doesn’t feel right, keep asking questions. Keep searching for answers. Persistence isn’t being difficult; sometimes it’s exactly what leads to the support you need.”
Despite all of the many things lupus has taken from her, and the cruelty of the disease, it has also taught Filomena what a resilient spirit she has.
“Lupus has changed my body, but it has not changed my purpose,” she says. “Strength isn’t measured by how much we accomplish. Sometimes strength is simply getting up, choosing hope, and trying again tomorrow.”
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.
