Living with Lupus: Shabnam Jessa’s Story
Shabnam Jessa’s Journey with Lupus: Choosing Joy Through Resilience
Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.
During the ups and downs of her second pregnancy, Shabnam (Shab) Jessa of Vancouver, B.C., believed she knew what to expect the second time around. Three years prior, she had been diagnosed with colitis (inflammation of the lining of the colon) during her first pregnancy with her daughter. But this time around, Shab was experiencing what she thought was intense ‘pregnancy brain,’ and chronic fatigue. But after her son was born, the symptoms didn’t subside.
“I couldn’t drive anymore,” says Shab. “I felt like my head was going to fall off.”
From 1999 to 2009, Shab went back and forth with the medical system and begged doctors to take her condition seriously.
“I would tell my doctor, I am exhausted, I have joint pain, I can’t think properly,” explains Shab.
“He would keep making these excuses like, ‘You need more Vitamin B or Yoga.’”
For ten years, Shab received the run-around from multiple doctors and specialists, who seemingly had no explanation for what was wrong.
“I started to believe that I was actually just crazy.”
In the late 2000s, Shab’s health sharply declined, and she began spending most of her time in bed, sleeping. Although her primary doctor believed she was suffering from depression, Shab knew that wasn’t the real cause.
“I knew my body, and I knew something was wrong,” she says. “He thought depression was making me sick, but I knew it was my sickness making me depressed.”
Shab broke down to her doctor, firmly telling him that she knew she was not depressed, and something else was at play. It wasn’t until Shab started advocating for herself that progress was made in her diagnosis.
In a specialist’s office, Shab broke down again as a decade without answers had left her feeling hopeless and broken.
“In that moment, the specialist committed to me that she would do everything she could,” says Shab. “She made me test for everything she could think of.”
Eventually, the test results slowly started trickling back, explains Shab, “Lyme disease, multiple sclerosis, it all came back negative.”
Six months later, her primary doctor realized they had missed the results for lupus. To Shab’s relief, the test came back positive. After all these years, she finally received her answer, despite it being bad news.
“You’re made to feel like you’re hysterical, dramatic or made up in our minds, especially women of colour,” she says. “After 10 years, I was just so happy to be diagnosed.”
The diagnosis not only validated her experience and symptoms but also confirmed that advocating for herself was the right thing to do.
Immediately, Shab started researching the disease, as she “literally had no clue” what lupus was. She explains she was relieved just to have a path forward, “although there is no cure, there are treatment options.”
Shab was immediately put on Plaquenil to ease her lupus symptoms, but as a South Asian woman, she wanted to explore Eastern medicine and incorporate it into her treatment plan.
“Meditation became a part of routine, which was something I never used to do,” she says. “I would walk in nature, practice deep breathing and Pranayama.”
Pranayama, explains Shab, is the yogic practice of controlling and extending the breath. Yoga, too, has become a big part of her healing process, as it helps calm Shab down and live in the moment. Shab found that these mindful steps helped ease her symptoms of lupus and improve the overall quality of her life.
At 55 years old, Shab has been in remission since 2018. Her family has been a huge support system, says Shab, especially her parents, children and husband. But most importantly, Shab started to be there for herself, which she had been neglecting to do for some time.
“Lupus has taught me how strong we can be as women,” she says. “You can’t just stop or quit.”
Today, Shab has dedicated her life to helping others through her social media platforms, https://not2shabby.life/, specifically advocating for women who are dealing with health issues.
“Women are so busy with how society and the patriarchy are. We are never really taught to take care of ourselves. So, when you are faced with an illness, you actually have to look after yourself.”
She encourages the practice of yoga and meditation, as it has significantly helped her, “even if it’s only for five minutes a day,” she reiterates.
Shab lives by the phrase “Choose joy,” a mantra that helps her reclaim a sense of power, especially during difficult or dark times. Choosing joy, to Shab, actively means engaging in kindness, as the alternative is unproductive.
“No matter what, choose joy.”
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.
