Living with Lupus: Anita Toni’s Journey from Misdiagnosis to Motherhood
From unanswered symptoms to diagnosis, one Montreal mother’s experience living with lupus reveals the power of self-compassion, resilience, and redefining what it means to show up for family.
From Côte d'Ivoire to Canada: Early Symptoms and a New Normal
In June 1993, when Anita Toni was only twelve years old, she and her family moved their entire lives from Côte d’Ivoire, West Africa, to Quebec, Canada.
The transition from moving to an entirely different continent had its expected challenges. However, what was unexpected was the intense fatigue and light sensitivity, unlike anything she had experienced before.
“I was always so exhausted,” Anita says. “While in school and later at university, my mom would have to wake me up. I would always be so late.”
During this time, she struggled with leaving her home as light caused her to experience lightheadedness and headaches, which she attributed to migraines.
Things continued on this way and eventually became Anita’s ‘new normal.’
She graduated from the University of Ottawa, began her career as a data analyst, got married, and later had her two children – all the while still experiencing fatigue and light sensitivity.
Diagnosis and Understanding What It Means to Live with Lupus
In December of 2022, at 42 years old, Anita suffered a miscarriage at six months pregnant.
“I was taken to the hospital and given a bunch of tests. We were trying to understand what happened.”
Due to the unusual circumstances regarding her pregnancy loss, Anita was referred to the hospital for further blood work. Her doctor had suspicions, due to her symptoms and medical history, that she may have lupus.
“I remember thinking, What is lupus? My face just dropped. I had never heard of it before.”
A blood test confirmed his suspicions, and by February 2023, Anita was officially diagnosed with lupus.
“I thought they had made a mistake. This cannot be happening to me. This cannot be my life.”
Her doctor reassured her that there are plenty of ways to treat lupus and live a happy life.
Fortunately, Anita was quickly referred to an excellent rheumatologist, who explained everything to her every step of the way. This, Anita remarks, made a big impact on her outlook on the disease.
“I started to put things together, with my history. It all made sense. This whole time, I thought I was just lazy.”
Motherhood, Support, and Daily Life While Living with Lupus
Within the first stages of her diagnosis, Anita was concerned about how her day-to-day was going to change, when she had already built the foundations of her life.
Her daughter, then 13, and her son, then seven, still deeply relied on her.
“I had a hard time processing everything. The baby…All I’d lost,” she says. “But my husband has always been by my side. He asks questions, he wants to help, and he wants to learn.”
With her husband’s support, Anita has been able to find her bearings and become ‘mom’ again. She explains that her family’s love and care helped her accept her less-than-ideal situation.
“We got through it together. Our family dynamics changed, but that’s okay because we do what works for us.”
Like any parent with a chronic illness, Anita tried her best to keep up with the demanding role ‘mother’ took on her.
“I am always trying to be the best mom, and I can be hard on myself,” she says. “But you don’t have to be super mom. That is something I am trying to learn.”
During the first couple of years of her diagnosis, Anita often pushed herself too far, which led to flare-ups. Now, she is practicing the importance of self-patience and gratitude. She is allowing herself to say, “I am too tired to do this today.” Whereas before, she would force herself to make her family dinner, clean and stay engaged despite being exhausted.
Now, she says, “It is okay if we order dinner. It is okay if I lie down or nap.”
For Anita, the hardest part about her diagnosis was stabilizing her routine and navigating how the changing dynamics may impact her children. She recalls her son, now 10, asking her if she was going to die – and her not knowing how to respond.
“I am showing them [her children] how to live life. We stay strong for each other.”
It has been three years since her treatment, and Anita describes her condition as stable, although not yet in remission. Throughout all of this, her biggest lesson has been to take everything one day at a time.
“No more ‘go, go, go’ and just be in the moment,” she says. “I am trying not to put pressure on myself anymore, or call myself ‘too lazy’.”
Anita shares that it has been a challenge finding ways to enjoy the outdoors with her children, as her light sensitivity remains her biggest issue.
“If my kids call me to go outside, and I am in the sun for even five minutes. I break out in blisters and a rash.”
She is still finding a healthy and fun way to enjoy the hot summer moments indoors, as her kids are her “everything.”
Anita urges other parents out there who also suffer from a chronic illness to give themselves the same patience and love they would give their children.
“I have to remind myself and say, ‘Ok Anita, you can do this and you can get through anything.”
Being an active present mom, despite her illness, is the most important thing for Anita. She explains that no matter what, she will always live for them.
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.
Explore More Support from Lupus Canada
- Learning to Live Well With Lupus– People living with lupus often need to adapt to complicated medical regimens to control symptoms and prevent disease flares. Making gradual and achievable lifestyle adjustments can help improve quality of life and provide a sense of well-being.
- National & Provincial Support – Access a network of resources and services available across Canada.