I Am COVID-19 Positive and Immunocompromised, and My Case Isn't as Dire as I Feared

As a person with an autoimmune disease, when the coronavirus grew into a pandemic I felt a deep sense of dread. Living with rheumatoid arthritis/rheumatoid disease [RA/RD] and being on immunosuppressant medications for nearly 20 years, I’m all too familiar with being vulnerable to viral and bacterial infections.

As news of COVID-19 deaths and hospitalizations spread from country to country and region to region, the risk groups were often reported, with “immunocompromised” among them.1 Fitting squarely in the “immunocompromised” category, I feared that if I contracted coronavirus, I would likely have a severe case.

Taking precautions against coronavirus

As daily life in the United States suddenly shifted, with canceled events and officials urging people to stay home, I took the expert advice very seriously.

Fearing hospitalization or worse, for nine days our family practiced social distancing, limited trips to public places, used hand sanitizer, wiped down surfaces with bleach, and washed hands thoroughly and frequently. Unfortunately, either I was already incubating the virus or these efforts were not enough, because nine days in I got sick.

Experiencing symptoms of coronavirus

At first, I felt a bit run down and had a little cough. I anxiously feared it might be coronavirus but hoped it was just allergies, as pollen was plentiful where I live in the South.

However, a little later in the day I suddenly felt a wave of extreme fatigue wash over me, and I felt if I didn’t sit down immediately my legs wouldn’t hold me. At that moment, I was certain I had COVID-19. Shortly afterward, tightness in my chest and mild shortness of breath set in. Fever came next.

Advocating for testing and getting my results

It took far too much effort and self-advocacy to get tested, but I was able to get a swab test (taken from my throat) on Day 4 of being ill. The doctor prescribed an inhaler and antibiotics to ward off pneumonia while I waited for test results. It took eight days for the lab to process my test.

The clinic called to let me know that my swab test result was negative. Yet, when I told the doctor I was having a fever for the eleventh consecutive day, she suspected a false negative and told me to come back in. That very day their clinic had received rapid blood antibody tests. While waiting on the test results, they did a chest x-ray, which fortunately showed my lungs were okay. Then the COVID-19 blood test result was ready, and it was positive.

Having coronavirus while living with RA

My personal experience having both RA/RD and COVID-19 has involved good news and bad. I’ll go ahead and get the bad news out of the way.

My experience with a clinically mild case

Coronavirus is all it’s cracked up to be. I have a “clinically mild” case of COVID-19, and it has been debilitating. I've been sick for nearly three weeks. I had a fever for 12 consecutive days, and it has returned briefly since then. I use a nebulizer and two different inhalers, and yet I still occasionally have a below-normal blood oxygen reading on my over-the-counter finger oximeter.

I have muscle weakness that is more extreme than anything I’ve ever experienced. This is a mild case, and it has incapacitated me. Living with this illness, I wholeheartedly agree with all the precautions experts continue to recommend.

My immune system is still doing its job

Now the good news. While this is a lot to deal with, I feel grateful every day. I am immunocompromised and contracted COVID-19, and yet it is a mild case! My fever has not spiked really high, nor have I struggled for a breath. The overwhelming majority of my blood oxygen levels are in the normal range. My symptoms are manageable at home with the breathing treatments and antibiotics the doctors have prescribed.

This is a huge win for my immune system! I’ve always felt like it’s a scrappy underdog fighting against the odds. Yet, in this battle with coronavirus, my immune system is giving this infection a pounding.

It is hard to be sick for so long, but this is actually good news to my doctors, who tell me that those who need to be hospitalized see severe symptoms much earlier on. So while I would prefer there didn’t need to be so many rounds before my immune system gives COVID-19 the knockout punch, each day that passes at home is keeping coronavirus on the ropes.

A noticeable change in my RA symptoms

Furthermore, while my immune system focuses its full force on COVID, my RA/RD symptoms are better than ever. I am not at all swollen, and if asked about the 10-point pain scale I’ve ranged from 0 to 2. While I am extremely physically weak from COVID-19, I don’t have any of the mental fogginess that always accompanies my RA/RD fatigue. I usually have an Orencia infusion every four weeks. It has now been seven weeks since my last IV, and yet my RA/RD symptoms are far more mild than usual.

Comparing my coronavirus experience with past illnesses

Finally, my personal experience with COVID-19 symptoms has not been miserable. While I know that many suffering from this virus do have horrible experiences, I have not felt awful. My fever was generally low and I was never racked with chills as I have been with seasonal flu. My muscles have been incredibly weak, but I have not had the cramping and muscle aches some patients report. I also have been spared the vomiting and diarrhea that a minority of people with coronavirus experience.

The discomfort of a single day of my case of COVID-19 has not been as severe as when I've had a stomach bug, seasonal flu, or RA/RD flare. My main complaint with my experience of coronavirus is how very long it is lasting. While I am eager to be able to leave my bed and return to daily activities, each day that I am successfully fighting this virus at home is cause for gratitude, especially in light of the suffering other people with COVID-19 are experiencing.

I hope my coronavirus experience leads to understanding

I know this is a scary time for everyone, and especially those in our immunocompromised community. Anxiety further weakens our immune systems, so my hope is that in sharing my experience with coronavirus it will lessen the anxiety of fellow immunocompromised readers.

I was so very anxious in the days before I became symptomatic, but my experience of having COVID-19 has been far better than I dreaded and feared it would be. While this is a very serious infection and can be fatal, I have found out firsthand that being immunocompromised does not necessarily result in a severe case of this virus.

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