The Beginning

 In Links to Lupus News, Story Sharing Project

Madeline Handley is a third-year Molecular Biology student at Colgate University, who has learned how to navigate a college environment whilst managing lupus. Madeline was diagnosed with lupus in middle school. She is sharing her experiences in a series of articles to benefit others in the lupus community.

Middle school is defined, for many, by transitions; I was surely no exception to this. My time during those three years included reluctant visits to my orthodontist, hours spent after school on a lacrosse field, and stressing over drama with friends and crushes, all while awaiting the next big thing: high school. In these ways, my experience was much like the other kids at my school. I was a healthy kid with a pretty normal life, who didn’t worry about much other than my social life and grades.

Things took a turn the summer leading into the seventh grade. Late July, I began to develop a red, scabby rash on my cheeks and nose. Dermatologists were puzzled at this and attributed it to sun exposure and dermatitis. They recommended topical steroids to clear up the rash. These treatments helped with the inflammation on my face, but in the meantime, walking started to become extremely difficult. I could no longer straighten my legs without resistance and pain. I was a very athletic kid, so my family thought that it could have been a sports-related issue. Labor Day weekend came and passed, and this inexplicable tightness became worse, impeding my ability to spend time with my family. We continued to seek medical advice, but there seemed to be no apparent cause to the muscle tightness, and we were left waiting to see if things would improve as time went on.

My condition only worsened, and late one Friday night, I developed an extremely high fever. This, alongside the ongoing issues, caused my parents and I to make the decision to travel to the emergency room at Lutheran General for care and answers. My bloodwork was extremely off, and for much of that night I was escorted in and out of rooms getting various tests done to try and pinpoint the issue. I was later transferred to Comer Children’s Hospital at University of Chicago, where I was diagnosed with lupus, hypothyroidism, and a bleeding and clotting disorder. I remained at Comer for over a week receiving exceptional care, and it was there that I met the care team that I would continue working with for the next seven years. This was my first lupus flare, and my worst yet due to the two months I spent without an accurate diagnosis and proper treatment. It was very frustrating and confusing to have spent so much time with persistent symptoms and no real answers.

Receiving and understanding a lupus diagnosis at 12 was an interesting process. When I had that initial conversation with my doctor, the main emotion I felt was relief. After hours of nonstop tests, bloodwork, and visits from specialists, it was reassuring that I knew the name of my condition and had the opportunity to be treated. I had not yet processed the weight and implications of such a diagnosis, however, at the time I was at the hospital and my first years as a lupus patient. I attribute this to my immaturity, misunderstanding of lupus, and desire to remain a normal kid with normal problems. I only began to feel the weight of lupus in high school and as I transitioned to college. As I matured into a young adult, I became keenly aware of the impacts lupus had on my adolescence and had to work lupus in with my future plans. I also better understood lupus, including common treatments and symptoms, and became more involved in advocacy work. At the time of my diagnosis, I had absolutely no idea what lupus was and couldn’t see into my future to know what I was going to experience.

After my diagnosis, I learned about lupus primarily through my care team and personal research that my parents and I did online. My parents were much more active about seeking information about lupus and getting answers. The diagnosis seemed to be harder on them than on me. After all, they were managing my appointments, physical therapy, insurance, and creating academic plans for me. I was lucky that they were so involved in my treatment and passionate about helping me move past my diagnosis. It was a very hard and confusing event for my family, as my sisters and parents are all very healthy and there is no history of lupus or any other chronic illness. I continue to rely on my family for support in managing my lupus and dealing with the physical and mental effects of the disease.

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