We don’t want pity, we want love and support – lupus warrior
“I SAW, tasted and danced with death, but I survived.” That’s a reflection of lupus survivor Dr Marsha Smalling, principal of Glenmuir High School in Clarendon. Smalling participated in the commemoration of May 10 as World Lupus Day.
The school joined the Lupus Foundation of Jamaica’s ‘Strides for Lupus’ initiative, an activity geared towards spreading awareness about the autoimmune disease. Purple bows and headbands were among accessories donned by students and staff to show support to lupus fighters.
Lupus, a chronic, lifelong autoimmune disease, occurs when the body’s immune system attacks its own tissues and organs. The immune system produces auto antibodies that identify the person’s own normal cells as foreign and eliminate them. Inflammation caused by lupus can affect many different body systems, including your joints, kidneys, skin, blood cells, brain, heart and lungs.
FIRST-HAND EXPERIENCE
Lupus is more common in women. Studies show that 90 per cent of people with lupus are females, and is more likely to affect certain ethnic groups such as Afro-Caribbean, Hispanic and some Asian members.
Smalling, who was diagnosed in 2003, says a part of her mandate is to offer strong support to students living with the disease. Citing a first-hand experience, the educator says there are days when one will become fatigued and feel simply “out of it”.
“There are students with it, and we just want teachers to understand some of the symptoms and what they will go through, so they can better understand them and support them as they pursue their studies,” Smalling told The Gleaner on Tuesday.
People with lupus are often diagnosed between the ages of 15 and 45.
Smalling hopes, too, that the commemoration of World Lupus Day will not only bring awareness, but also end discrimination against lupus survivors. “We still have persons who are having challenges at their workplace. Employers do not want to employ [them] because of the risk of having a rate of absenteeism, for example,” she explained.
The school also collected donations to offer support to the Lupus Foundation of Jamaica. A 2020 study unearthed that some 22 per cent of people living with lupus do not take medications as prescribed due to the high costs. The study cites medication adherence as “a known challenge in lupus treatment”.
“The truth is that many lupus warriors need that kind of financial support for their medication and other resources they need, to not just survive this chronic illness, but to thrive in spite of it,” Smalling said.
Last March, Smalling launched her book, Powered Up: Leveraging Six Pillars to Live Out Loud, chronicling her journey with the disease.
“While most times I am okay, and bubbly, I do have my down days. When it sets up to rain, or when it’s raining, my joints will start hurting me, for example; but as lupus warriors, we don’t want pity, we want love and support,” she said.
But amid the flare-ups, the diet restrictions, days spent avoiding the sun, and, some prolonged hospital stays, Smalling says she is grateful to still be able to live a full life most days, asserting strong support from family, colleagues and friends.
“Because of the people in my circle, I have been able to survive it. I still have my down times, but thank God I’m still smiling, I’m still illuminating my space with my energy, and that’s my purpose now... to reach out to those living with the illness, to make them understand that things are still possible,” she said, adding that she was able to complete three degrees and serve in her role as principal.
Smalling says she will continue using her experience to spread awareness and offer support to other survivors, which she posits as her God-given purpose.