Is it COVID or Lupus-Related? How to Work With Doctors to Really Get Proper Care

It can be difficult to determine what is lupus related and what is a sign of COVID. Let’s take shortness of breath for example. Many lupus warriors have experienced shortness of breath from pneumonia, costochondritis, and even pleurisy. It’s definitely a health issue that is not new to men and women battling lupus.

After a recent trip to the hospital for shortness of breath and back pain, I have realized that many emergency room doctors are baffled. Many doctors seem confused when you come in with the symptoms that sound and act like COVID, but may not be it at all.

A trying process to find out what’s wrong

Having dealt with double pneumonia, pleurisy, and costochondritis before, I didn’t want to take a chance. Instructed to go to the emergency room, I went running. Out of breath and barely able to speak, it was a struggle.

I explained to the nurse I experienced a cold for two weeks prior. I treated the cold, as usual, with over-the-counter cold medicines. When I began experiencing shortness of breath, worry settled in for possible pneumonia, pleurisy, or COVID. I also thought, I’m a week in a half out of my infusion, maybe it’s a lupus flare.

I registered, the nurse took my vitals and all seemed “well.” Blood pressure was normal, no fever, and blood oxygen levels were great. But, this shortness of breath was overbearing.

Interpreting the COVID-19 rapid test

A rapid COVID test and a chest X-ray were to be expected. Sit and wait. Finally, the doctor enters with the news. The COVID test was negative and my X-rays showed bronchitis and pneumonia trying to settle in. The words that really threw me for a loop were, "oh the COVID test could be a false negative, and you could still have it, so that is how we will treat it."

"Excuse me, doctor," I said, "Why are we giving tests that we just simply ignore?" I felt that my history with upper respiratory issues was well, ignored. Is it still COVID-related if the test that you sent to my brain stated otherwise? The answer I received stunned me, "because that is how it presents itself.”

Make it make sense to me

With all of my vitals and tests indicating NO COVID and knowing my history with upper respiratory issues, make it make sense to me. Make me understand why you are attempting to discharge me with the idea that I may still have COVID. Yes, some tests are definitely wrong, but knowing my history, it was not the right way to discharge me from your care.

A continued difficult fight for lupus warriors

It becomes increasingly difficult to deal with doctors who are continuously overlooking lupus issues that are plain as day. Emergency rooms are still discounting what lupus is and are ignoring past issues. Some doctors are still not well versed in lupus issues and refuse to look into the history to give proper care.

What can you do? Be your own advocate

It’s important for us as lupus warriors to advocate for ourselves. To be the most knowledgeable person in the room. Not of lupus in general, but of our own bodies, our own history, and our very own treatment. Doctors are still learning and practicing, and beyond popular belief, do not know it all. That is especially so about lupus. Therefore, it’s important that we work hard to properly advocate for ourselves to receive the best care to get well.