Lupus is an autoimmune connective tissue disease that affects many people differently. What does this mean? Well, medically this means Lupus is an incurable disease that "attacks its own healthy tissues and organs. It can damage the joints, skin, kidneys, and other parts of the body. No one knows for sure what causes lupus." (womenshealth.gov). Lupus is two to three times more likely in women of Indigenous descent than in women of non-Native descent. Lupus is also more prevalent in Women of Color. While it is not known completely what causes Lupus, it is suspected that there is a strong genetic connection and studies show that women and People of Color are at the highest risk for contracting/developing the disease. Symptoms of lupus include but are not limited to:
Fatigue and fever
Joint pain, stiffness and swelling
Malar Rash (aka: Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure (photo-sensitivity)
Raynaud's Syndrome: Fingers and toes that turn white or blue when exposed to cold or during stressful periods
Headaches, confusion and memory loss
A full list of lupus symptoms is available here.
Diagnosis uses a combination of blood tests, symptoms, and takes time and elimination. For some people the diagnosis is quick, for others it can take years. Some people live active and relatively unencumbered lives. Others with Lupus face debilitating pain, flares, and organ complications. Some people swing like a pendulum between bouts of health and mild to severe illness. People with Lupus often feel stigmatized and Native women with Lupus can often feel torn between taking care of themselves and prioritizing their communities and families over their own health.
In honor of women, particularly Indigenous women, surviving and fighting Lupus in this Month of May I am sharing two works about battling Lupus. The first "Love Poem for Lupus" (published in Smoked Mullet Cornbread Crawdad Memory) approaches the disease as an abusive relationship while the second poem "Love Song for Paracolonial Occupation" (published in The Mas Tequila Review edited by Richard Vargas) connects the high incidence of Lupus in Native populations with the histories of the colonial project, rape and sexploitation, and even the biological exploitation of Native peoples.
For more on living, being proactive, and surviving with Lupus as Native see "#StoptheDamage and KnowLupus: Native Women are 3x More Likely to Develop Lupus" by Johnnie Jae (Jiwere-Nutachi / Chahta) , Lupus and Native by Hunter Gray (Micmac/St Francis Abenaki, St. Regis Mohawk).