Finding Purpose Living Through a Lupus Diagnosis
Last updated: January 2023
I was diagnosed with lupus at the age of 16. School has always been a priority in my house. Two years before my diagnosis, my parents paused my education because the school system didn’t understand my chronic illness. The school principal and the county superintendent thought I had a mental illness. So my parents removed me from public school and enrolled me in a private school called Horizons School.
Overcoming hurdles with lupus
My first year at Horizons was successful, but that didn’t mean that my condition disappeared. There were frequent doctor appointments. Moments when I slept in the administrator’s apartment or a classmate's boarding room if I were sick with stomach pains or had a headache. There were times when I went home early because I couldn’t bear the pain. This meant missing school events, participating in extracurricular activities or social events. I also had frequent doctor’s appointments during my first year because a change in the environment did not help my headaches.
It was during the second semester at Horizons that my other ailments affected my life. As you read in my first story, I could no longer take the bus home because I couldn’t walk a long distance because of chest pain. I started taking the bus to my mother’s office because it was a short distance between the bus stop and her office. That meant less chest pain as I traversed the hilly sidewalks of Atlanta. I started seeing my internist frequently because I had a constant cough that my mother remembers to this day. Even if I cough now, she is on alert. I started developing arthritis in my joints, but my internist was not able to put the symptoms together to make a positive diagnosis. I did not want to pause my life again and I wanted to drive, so I took a driver’s education course. I survived the first week of driver's education before my internist found a spot on my lung and admitted me to the hospital.
Meeting a lupus warrior
After my stay in the hospital, I met Kathleen Lewis who was a lupus warrior, author, and support group leader. She taught me how to deal with the grief of living with a chronic illness. She taught me how to explain it to others and how to understand the many ailments that are connected to lupus. Kathleen was an angel. She was there when I needed to talk. She was there when I didn't understand medication or lab work. She is the person who prepared me for a life of independence instead of dependence. Prior to leaving for college, Kathleen taught a 1-week seminar on lupus. It was a patient management course. I learned how to exercise properly. I learned about my diet and symptoms. I learned about medication and the importance of sticking with my medical treatment. Kathleen was my rock during those first few years.
Coming to terms with lupus
During my second year and my last year at Horizons, I tried to cope with now living with lupus. Many of my close friends knew of my visit to the hospital. All of my teachers knew and were sympathetic. They were happy to see that I returned to Horizons. Everything was again routine. If I was sick from a headache, muscle pain, arthritis, or unable to concentrate because of the steroids I always had a place in the building to rest. Horizons and Kathleen helped me navigate a life living with lupus and that school made me the person I am today.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?