Let’s Talk Lupus: Danielle’s Journey of Living with Lupus

Let’s Talk Lupus: Conversations with Macenzie

It was a step outside of 40-year-old Danielle Pearson’s comfort zone when she decided to partake in an interview to share her life with lupus. “This is a part of my healing process,” she smiles. Danielle was diagnosed with lupus when she was only 13 years old. For the last 27 years, Danielle has kept her diagnosis and health issues to herself. “Some of my closest friends didn’t even know,” she says. Today, Danielle finally feels it is time to share her story.

Danielle lives in Montreal, Quebec, with her two young sons, who are 12 and eight. Soon, her eldest son will be turning the age Danielle was when she was first diagnosed.

Back in 1997, Danielle was living in Ottawa, Ontario, with her father and preparing to start high school. “I developed this unexpected rash on my face,” she says. “It started to spread all over. The doctors had no idea what it was.” Danielle was referred to a doctor at the Children’s Hospital of Eastern Ontario (CHEO), where she received more testing and was prescribed cortisone cream for her rash. The rash never went away. After more blood work, Danielle was diagnosed with lupus. “I had no idea what it was. But I wasn’t really alarmed,” she says. “But I remember one day walking down the hallway at CHEO and seeing all these very kids struggling. The walls started to shrink around me. I thought, God, what is this thing I have? The whole experience was out of body.”

At that time, Danielle and her family did not totally understand the disease or what it meant to have it. She continued throughout high school without any treatment besides her cortisone cream. And, although the rash was embarrassing at times, Danielle did not pay attention to her illness or, as she puts it, “take the best care of my body.”  After graduating, Danielle moved to Montreal to pursue her education. Her lupus remained stable until her mid-20s, when she had a major flare-up. “I just thought I had a bad cold,” she explains. Danielle was having a hard time breathing, and something just felt off. She went to her local hospital, and the doctor told her she was most likely dealing with a nasty flu. “They told me to take cold medication,” she says. “And then one morning I was walking to my car and collapsed on the floor.” It turns out that Danielle’s ‘cold’ was actually water that accumulated around her heart, called pericardial. “I was in the ICU for a week,” she says. “It was lupus attacking my whole body.” Danielle quickly realized her lupus was much more severe than a skin rash. She started treatment for lupus shortly after, taking Plaquenil and Prednisone. This was her first time taking medication (besides cream) to treat her lupus.

 “It was surprising I didn’t have a flare up sooner. I was kind of in denial.”

After this scare, Danielle better cared for her body and followed a regimen for her symptoms. However, she continued to remain very private about her condition to anyone that was not her immediate family. Her lupus remained stable until she got pregnant with her first son. This was a difficult time for Danielle because now she was responsible for another life, and she was concerned her body would not be able to manage.

“I was a high-risk pregnancy. I was having complications with my kidneys. It was a very scary time for me.” For both of her pregnancies, she was admitted to the hospital early so she could be monitored. “In the end, I was lucky, both [boys] were delivered safe.”

Danielle reflects on this time as one of the hardest times of her life. “I was always worrying about my son’s life.”

“I would call my mom after each appointment to let her know what was going on but then say ‘don’t tell anybody.’” To deal with the stress, Danielle took time off work. “My self-esteem was incredibly low, and I didn’t feel like myself.” For the first time since she was 13, her lupus had manifested physically, making it clear to peers that something was wrong. After all the treatments had been completed, Danielle started to open up to her friends, family, and colleagues. When Danielle returned to work, she started to open up to her colleagues about her illness. To her surprise, a lot of people did not understand what lupus was. This is why she feels it is important to be an advocate presently.

“A lot of people are misinformed about lupus. I want people to be informed, and that is something I can do.” Today, Danielle is speaking up about her illness as a part of her healing process, reconciling her past and spreading awareness.

 “I’ve learned that after everything, I am a resilient person,” she says. In Montreal, Danielle hopes to see a support group develop soon, specifically for those with lupus. By speaking up and sharing her story, Danielle hopes to encourage other individuals with lupus to do the same and not feel shame about their illness. “It’s important that we empower each other and know we’re not alone,” she says. “Together, we can be stronger.” Danielle also knows she couldn’t have found the courage to speak up without her friends and family. “They gave me the strength to fight and get back on my feet during hard times.”