I am autoimmune. Physicians first diagnosed me with an autoimmune/chronic inflammatory disease at age 10 when I developed rheumatic fever as the result of repeated and untreated strep throat infections. In my early 20s, they diagnosed a second chronic inflammatory/autoimmune disease when they told me that I had lupus erythematosus. They described the lesions on my face and in my ears, my sensitivity to the sun, my joint pains, my exhaustion, and my headaches as symptoms of lupus. No modifiers were used in front of the word lupus.
The specialists told me that the medical community had been aware of lupus for more than a century, but that the cause was still unknown and there was no cure. They told me that lupus was fatal. In serious, hushed, and somber tones, they told me that my life expectancy was less than eight years. Then, and subsequently, physicians told me that I could not/should not have a second child, could not finish my undergraduate degree, could not hold down a job.
Obviously, I am still alive. In 2014, I celebrated my 68 birthday. My second child is now 41 years old and has two daughters of her own. I earned not only my bachelor’s degree but also a master’s degree and a PhD. I was a full time faculty member at VCU for 29.5 years. I was awarded tenure by meeting the criteria of the Department of Sociology amd Anthropology and the College of Humanities and Sciences. I served three terms as the administrator of the African American Studies Program at VCU. I led in the design of the first BA in African American Studies at VCU.
I did none of this perfectly but I did get it done. I got it done while coping with photosensitivity, skin eruptions, facial scarring, and hair loss. I got it done in spite of constant exhaustion, muscle aches and pains, joint pains, frequently recurring pleuritis, and occasional pericarditis. I got it done through three total knee replacement surgeries, the first while in my early 40s. I got it done through the roller coaster of fluctuating hormone levels before the diagnosis of Hashimoto’s autoimmune thyroiditis. I got it done through excruciating pain caused by a kidney defect with which I was born but which my health care providers did not identify and correct until I was in my 60s. I got it done in spite of agonizing back pain as the result of congenital spinal stenosis and sacroiliac syndrome caused by scoliosis and a functional leg length discrepancy. I got it done while being the single parent of two children who have grown into responsible and productive citizens. My son is a husband, father, and a military officer. My daughter is a wife, mother, and research associate in a microbiology research laboratory.
For my entire life I have engaged in what the health disparities literature refers to as “high effort” coping. Therapists have described me as driven. It took a kidney related surgery, a broken leg, and severe vitamin D deficiency to pull me out of the full time workforce. Since I retired I have also had surgery on my back and four eye surgeries. I am definitely “weathered.”
However, my “sociological imagination” does not allow me to see lupus or autoimmunity as personal troubles that I must keep private. Many of the issues associated with lupus involve the responses of social institutions. This means that they are public issues about which I, as a sociologists, must speak and write.