Living with Lupus and Arthritis: Megan’s Story of Resilience

September is Arthritis Awareness Month, which advocates for further disease research and funding. Similar to lupus, arthritis can cause joint pain, swelling, and stiffness, affecting people of all sexes and ages. And although it is rare to have both illnesses, it is not impossible.

“Incomplete Lupus was more of a clinical diagnosis for me,” she says. “Whereas I was diagnosed with RA after an MRI and visible swelling in my joints.”

Megan’s UCTD and RA not only impact her body differently but also her life.

UCTD impacts my lifestyle. I need to watch my energy expenditure, wear my sunblock, get lots of sleep, eat well, exercise, keep low stress and avoid extremes in temperatures,” she says. “But my RA impacts my daily movements. I wear braces when I’m going for long walks. I avoid movements or heavy lifting that strain or hyperextend the joints.

Both of Megan’s conditions are managed by a biologic treatment called Actemra. According to Megan, Actemra targets the inflammatory marker in her immune system that drives her disease(s).

“I am also on additional medications that act as joint protectors and assist in regulating my immune system. With both diseases being driven by inflammation, therefore, all treatment plans are interconnected.”

Having multiple diagnoses is a juggling act for Megan. For her, it is instrumental to take it one day at a time. Especially because her body is at a higher risk for flare-ups. 

“You cannot separate parts of the body and treat each part individually,” she says. “Both of these diseases are inflammatory and influence one another.”

She also reiterates that there is no one-size-fits-all approach to disease management. In Megan’s eyes, each disease is as unique as the person impacted.

“People believe that Lupus is a rare condition. But five million people in the world cope with it,” she says. “There is also a misconception that arthritis is an ‘old person’s disease,’ when people are diagnosed with it at many different stages of life.”

Megan struggles with the invisible disability part of having a chronic disease. Just because she is young and appears able-bodied or healthy does not mean she is. 

“People are quick to jump to conclusions regarding my health and the severity of my diseases or the support I have the right to access based on my appearance. At times, I find these judgments to be hurtful and dismissive of my struggles.” 

Misconceptions of autoimmune and chronic conditions often lead to those with invisible illnesses feeling isolated or disparaged. “People with autoimmune and chronic conditions are very good at putting on a smile,” explains Megan. “We put on a brave front despite not being well.”

This is why awareness of Lupus and arthritis is significant, not only to Megan but to those in both communities.

Arthtis Awareness Month provides an opportunity to help educate people about the signs and symptoms of the disease, shares Megan.

“I hope that by raising awareness, we can help shorten the six-year wait time for people to get correctly diagnosed,” she says. “This month also provides a chance for people to reflect on the fact that people are living with invisible struggles that those around them would know nothing about at first glance.”

She also encourages those with Lupus to get involved in advocacy work and connect with others through support groups and social media.

“Chronic disease can be very lonely and isolating,” she says. “Reach out to organizations like Lupus Canada and The Arthritis Society to find your community.”