Author: Danielle Grant
Lupus is a disease with notable pop culture recognition thanks to the American television series “House, M.D.” where it is often suggested as a probable illness plaguing the show’s patients until the suggestion is typically shut down because “it’s never lupus”. When a friend of mine was diagnosed with lupus she recalls phoning a loved one only to be met with a joke utilizing the same House tagline, “but it’s never lupus”. An ill-timed joke aside, this highlights a frustration for many lupus patients, not many Canadians are aware of what lupus actually is. October is lupus awareness month, offering the opportunity to start a dialogue about this autoimmune disease often called The Disease with a Thousand Faces.
What is lupus?
Lupus is an overarching term for several variations of a chronic autoimmune disease, the most common of which is systemic lupus erythematosus. In all varieties the body’s immune system mistakenly attacks its own cells, the underlying cause of the disease is unknown. Diagnosis can be incredibly elusive and prolonged due to the baffling nature of the disease’s pathology. The whole body is subject to lupus-related ailments, with considerable impact on skin, muscles, joints, blood, lungs, heart, kidneys, and the brain. The severity of impact on tissues and organs varies between patients and individuals often have unique disease profiles. Some of the characteristic symptoms of lupus are fatigue/exhaustion, sensitivity to sunlight, inflammation, joint and muscle pain, unexplained fevers and the lupus “butterfly rash”.
Who does lupus affect?
Lupus Canada estimates that 1:1000 Canadians have the disease. Anyone can be affected by lupus regardless of age, sex, or ethnicity. However, women of childbearing age are more likely diagnosed than any other demographic; for instance, between the ages of 15-45, the female-to-male ratio is 9:1. Within the group of young women, women of color are at an increased risk.
What options are there to treat lupus?
Individuals living with lupus may experience a flare/chronic/remission cycle of the disease. A wide range of factors (ie environmental or hormonal) may trigger an intensified period of pain, a flare. Individuals may also experience chronic pain. There is no cure for lupus. However, there are treatments and lifestyle changes that can aid to manage pain and can bring a period of remission for patients. Lupus poses a challenge for treatment, often it demands personalized pharmaceutical treatment plans. In terms of lifestyle changes, lupus patients may find relief through limiting sun exposure, regimented diet, and routine exercise.
Lupus and mental health?
Disease management goes beyond managing pain, chronic illness is also a strenuous mental battle. There are a considerable amount of patients who are plagued by feelings of isolation, constant frustration, and clinical depression. Lupus treatment plans should include mental health considerations. Many living with lupus face the unsettling paradigm of suffering their symptoms while being told they “look healthy”, which isolates patients away from community support. Education on lupus is a step in the right direction.
Living with Lupus, what are the realities?
Perhaps the most important reality to acknowledge in our discussion is that underneath the disease pathology, there is a person. Lupus is not just an everyday battle, more accurately an every task battle. Making the choice between taking a shower or eating breakfast because you do not have the energy for both, it’s canceling plans with a friend because your joints feel a hundred times heavier than lead, it’s the reality of living with a chronic illness.
Selena Gomez, an American singer, and the most followed person on Instagram, previously opened up about her own struggle with lupus. In September of this year, Gomez shared publically that she had a kidney transplant to fight her lupus nephritis. In Selena’s case, her lupus had reached a point of life or death, and the singer has since urged her fans to learn more about the disease. The bravery of Selena and other individuals who share their stories are a reminder that lupus is not a punch line on a medical TV drama; it is a potentially fatal disease.
Learn more:
October is Lupus Awareness Month. We as community members can lessen the burden for those living with lupus by increasing awareness and offering support. Both Lupus Canada and the Lupus Society of Alberta are great resources to learn more about the disease and how you may become involved in the fight against it. The disease with a thousand faces is present in our communities and no matter how “healthy” one may seem, the reality is that for people living with lupus the disease is anything but invisible.
If you would like to learn more please follow the links below to the various resources.
Lupus Canada: https://www.lupuscanada.org/
Lupus Research Alliance: https://www.lupusresearch.org/
Lupus Society of Alberta: http://www.lupus.ab.ca/
Lupus Foundation of America: https://www.lupus.org/