Living with Lupus: Michelle O.’s Story

Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.

While vacationing with her family in Christina Lake, B.C., 37-year-old Michelle O. surfaced from the water and noticed her finger tips were stark white. 

Michelle, a Victoria-based Pain and Symptom Palliaitve care nurse, knew this phenomenon was called Raynaud’s, a medical condition that reduces blood flow to the fingers.

Concerned, she booked an appointment with her general practitioner (GP), but the visit brought little clarity. Her GP believed there was no need to test for autoimmune illnesses because she had shown little to no symptoms. But less than a year later, Michelle started to develop inflammation in her wrists and hands.

“I initially thought it was carpal tunnel,” says Michelle. “But the pain was excruciating, up most nights crying.” 

Unable to tolerate the pain any longer, Michelle returned to her doctor and was diagnosed with inflammatory arthritis, which had already spread to her feet, shoulders, and knees. A few months later, she was referred to a rheumatologist. During this period, her condition continued to worsen, leaving Michelle and her doctors uncertain about the true underlying cause.

“I was in so much pain with limited mobility, my husband had to help me dress and often helped pick me up from a sitting position,” she says. “That whole time I was left in the dark with no answers.” 

Michelle was on and off Prednisone and Hydroxychloroquine, as the rheumatologist worked to find the right treatment. But the constant adjustments and trial of new medications were exhausting and painful.

“Sometimes the medication does not work – you wait three months in pain and agony, and later find out the treatment was not effective.”

And then, after months of testing, Michelle’s rheumatologists diagnosed her with a disease she had never heard of – lupus.

From 2020 to the winter of 2023, her lupus remained manageable and non-life-threatening. But the following spring, 41-year-old Michelle began experiencing what she assumed was just a bad case of the flu. She explains that she had just started weaning off Hydroxychloroquine when she became sick. To be safe, she decided to go to the emergency room, only to find out her condition was far more serious than she had expected. 

“I actually had a life-threatening blood disorder, and had to be flown into Vancouver that night.”

Michelle was diagnosed with thrombotic thrombocytopenic purpura (TTP), a very serious blood disorder involving blood clots and red blood cell destruction. 

Fortunately, doctors acted fast to save Michelle’s life, immediately starting a plasma exchange treatment. Michelle explains her platelets were at eight (the normal amount is 150,000 and 400,000 platelets per microliter), and her hemoglobin was 67 (the normal amount is  12 to 16 grams per deciliter). The treatment started quickly, and she received over 150 units of plasma.

After recovering, Michelle returned to work on and off to maintain a sense of normalcy. She hoped her life would continue as usual and that her TTP and lupus could be kept under control. With her medical background, she closely monitored her blood work and watched for signs that her white blood cell count might drop – something she quickly noticed was happening, and rapidly. Michelle reached out to multiple doctors for guidance and help, as it was hard for her to pinpoint what was happening to her body. Michelle found herself in the hospital once again with TTP, lupus nephritis and a pulmonary hemorrhage. 

“I had to keep advocating for myself over and over again,” says Michelle. “If I didn’t know what I know as a nurse, I don’t think I would have made it.” 

Michelle continues, “I think it is a shame that when somebody goes to a doctor for help, they don’t know how to treat it or what to do. They just say it must be your lupus acting up.”

She also notes that many doctors are not fully aware of lupus or the seriousness of the condition. 

“It [lupus] can be a very debilitating condition to live with,” she says. “More people should be aware of it.” 

Fortunately, her specialists, husband, and family were by her side, accompanying her to appointments and ensuring that doctors understood the seriousness of her condition.

In the past, Michelle hesitated to share her story, feeling she wasn’t ready to speak publicly about something so personal. But after the turmoil she has faced over the past year and a half, she now wants to encourage others with lupus to advocate for themselves, because doing so could save their lives.

“I tell everyone to advocate for themselves because it really saved my life, and life is so precious. Take all symptoms seriously” She continues to be very thankful for her specialists involved and the care they have given and continue to give.

Let’s Talk Lupus: Conversations with Macenzie