Living with Lupus: Richelle Johnson’s Story of Strength
From misdiagnosis to advocacy, one Brampton woman’s journey with lupus highlights the importance of persistence, support, and listening to your body.
Early Symptoms and Misdiagnosis
Richelle Johnson of Brampton, Ontario, radiates positivity despite the life-changing health issues she’s faced in her short 32 years.
She encourages optimism and celebrates life no matter what, because she almost lost hers at one point.
In 2016, in the heart of her early twenties, Richelle started to experience severe chest pain. She checked into the local hospital, hoping to receive an answer.
“It was so intense. It was the worst pain I have ever felt in my life,” she says. “I couldn’t breathe. I couldn’t sleep. I couldn’t lie down. I couldn’t do anything but cry.”
The hospital prescribed antacids for heartburn.
“Obviously, it didn’t help,” laughs Richelle.
Who returned to the same hospital every day for the next six days seeking treatment.
“I knew something was wrong. I kept going until someone took me seriously.”
On the 7th day, an emergency room doctor gave her a well overdue ultrasound.
Turns out, Richelle was right about her symptoms being serious, and she was diagnosed with pericarditis (inflammation of the sac surrounding the heart).
“I am so happy a doctor finally listened to me,” she says.
Ongoing Health Struggles
For the next four years, Richelle received steady treatment for pericarditis and phenomena.
“I would always get sick with both at the same time,” she remarks.
The hospital believed Richelle’s rapid weight loss could have been the reason for her chronic pericarditis. But in reality and unbounst to her, Richelle’s body was actually attacking itself due to lupus.
Fortunately, Richelle has an excellent family doctor and cardiologist who have been taking care since the initial 2016 incident.
A Lupus Diagnosis During the Pandemic
In 2020, 26-year-old Richelle was in the hospital for a month during the peak of COVID-19. She was alone and incredibly scared as she could not have any visitors.
“I was the youngest person on the floor dealing with heart problems, so that didn’t make me feel great.”
Richelle explains that the doctors kept making her feel like she was doing something wrong. “They kept saying it was my ‘lifestyle’ making me sick, but that made no sense.”
Her family doctor and cardiologist pushed back and advocated for Richelle to be checked for autoimmune diseases while she was there.
After a blood test, Richelle was diagnosed with lupus.
“I thought it meant I was going to die,” she says. “I felt immediately sad.”
Treatment and Lifestyle Changes
Her doctor explained that lupus is treatable, especially with the right medication plan. Richelle began educating herself on the disease with the support of friends and family. Once referred to a rheumatologist, she started taking Plaquenil (hydroxychloroquine) regularly.
“I am very strict about taking my medication and making sure I live a healthy lifestyle,” she says.
Since 2020, her lupus has been stable.
“My last flare-up of pericarditis was at the beginning of the year, and since then, I have been doing well.”
Passion for Helping Others
For Richelle, managing her mental and physical health is incredibly important, especially because she prioritizes so much of her time to work and supporting those in need.
She is a self-described ‘work lover’ and is so passionate about helping others that she works two jobs, seven days a week, as a case manager and support worker for men in the incarceration system.
“One thing lupus has taught me about myself is that I am resilient,” she says. “I went through really scary times and came out stronger.”
Finding Purpose in Advocacy
Richelle’s “power to live and keep living” is what motivates her when she feels the weight of the disease on her shoulders.
“I get up every day and want to live this life. My family wants to see me live. I want to see myself live too.”
Spreading awareness and advocating for lupus has brought her a new sense of purpose. Especially because without the advocacy from her family, primary doctor and cardiologist, she wouldn’t have received a diagnosis in the first place.
“It’s okay not to know all the answers, but you don’t have to be afraid.”
There are a lot of misconceptions about lupus because people are misinformed, explains Richelle, which can make it difficult to open up to people.
“But just know, there is a community of like-minded people out there and surround yourself with them,” she says. “Make sure your voice is heard.”
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.