Before the Diagnosis

People have often asked me about when the first symptoms began and how I found out it was Lupus. There was no single symptom, it was many things that happened over a long period of time. There was (is) no single test for Lupus, rather a lengthy barrage of tests over the span of a couple months or more. However, the story of how I was diagnosed is quite amazing, and I owe the early diagnosis to my husband’s (boyfriend at the time) doctor.

My husband had undergone some tests for unexplained headaches and nausea. The doctor even began testing for Lupus. Thankfully, the tests were all negative. During one of the visits, the doctor began a line of questioning about his health and whether he had ever experienced certain issues. He had not experienced any of what the doctor had mentioned. I, on the other hand, could answer yes to most of the questions and had experienced the issues mentioned. After the visit, I made appointment with the same doctor who, after a few tests, sent me to a rheumatologist. My husband’s health was back on track with a simple root canal.

My first Lupus symptoms happened during my childhood, mostly while going through and after puberty. There were unexplainable health issues which made no sense at the time though looking back, it may have been Lupus. The issues were often dismissed as growing pains or somehow labeled my fault. It became so common to blame me for what went wrong that I started doubting myself.

One morning I woke up to an extremely swollen and painful ankle though I had not fallen, twisted my ankle, nor suffered any other trauma. The x-rays showed no break nor fracture, just swelling. The doctor asked me more than once what it was that I did to cause the issue. He prescribed crutches and two weeks off the foot. When I returned to the doctor, he insisted that I had not been using the crutches because there was little change in the ankle’s status. It was too painful to walk using that foot, so I was most certainly using the crutches. I willingly used the crutches for a few more weeks and the swelling eventually went away on its own.

Fatigue was (still is) a huge hurdle, though anemia is partially to blame. The fatigue was overwhelming at times that I would go to bed at seven o’clock. My fatigue often kept me out of school, especially after a weekend at camp. My mother had even considered taking me out of Campfire because I was so exhausted afterwards. What must I have been doing to be so tired? I didn’t really know why I was tired all the time and assumed it was normal. Fatigue often set in after running Track or Cross Country, but it was more like a need to sleep than just the exhaustion of running. It didn’t happen every time but there were times where I even experienced chest pains. My coach blamed me for not running enough, being out of shape and not breathing correctly, none of which was true. Years later, I encountered the same chest pains and learned it was pleurisy. Oh, hindsight!

Shortly after high school, more symptoms started to appear with more unexplained pain and swelling which came and went without warning. Most of the time it was in my hands and was present at the time of my husband’s visit to his doctor. During my visit with the doctor, an x-ray was taken of the swollen hand (fingers, wrist) but no issues were found, just unexplained swelling. The doctor suggested that I have Lupus and sent me to a rheumatologist/

My first visit with the rheumatologist did not go very well. He stated that I was too young to have Lupus and that I didn’t look like a Lupus patient (something I would hear many times over the years). The doctor ordered some initial bloodwork, then ordered more bloodwork, and the cycle repeated for quite some time. Eventually, the doctor recanted his statement and said, “you have Lupus.” Then he said, “you will become your best doctor.”

I felt a great sense of relief to finally have an answer to everything that had happened though it was also quite scary. I had no idea what it meant to have Lupus, the effect it would have on my life, or how I was supposed to become my best doctor. With my husband by my side, we eventually figured it out but that is a story for another day.

Many other types of symptoms occurred prior to and after my diagnosis. These few examples stand out because the blame for the issues was placed on me. As we learned about Lupus and its possible effects on people, I began to forgive myself.  What happened to me in the past was not my fault at all I had not lie nor exaggerate symptoms. Who knows how long the suffering would have gone on or how bad it could have become had I not gone to that follow-up appointment for my husband?

Note: Lupus is a disease that affects people differently therefore, some of the things that happened to me may not happen to others. Also, these symptoms individually do not mean a person has Lupus.