It’s been a wild ride since I moved to work in healthcare at the end of March. I never imagined I would get the COVID-19 vaccine before New Year’s Eve.

Skepticism among my friends about the COVID-19 vaccine

I understand why many of my friends are skeptical of getting the COVID-19 vaccine. The autoimmune community is so often neglected in healthcare. There are no cures, let alone roadmaps for how symptoms will develop or change over a long period of time.

It’s hard to constantly triage your own care, look for specialists, and find the latest treatment options. When you have countless negative encounters with medical providers who often don’t believe you, it’s easy to give up hope and swear off the system.

No safety data for the COVID-19 vaccine in autoimmune patients

We aren’t a population that is frequently studied or even considered. According to the CDC, there is no safety data on the COVID-19 vaccine in people with autoimmune diseases.

When I was first notified that I was eligible to receive the COVID-19 vaccine, I thought about what I would be getting myself into. Nothing is without its risks.

But then I thought of my son. Even if I am good about staying home during this pandemic, he sees other people when he goes to daycare, and there’s no telling what those people do or where they go.

With Sjogren’s in my kidneys, I didn’t want to risk the possibility of becoming severely ill with COVID-19 and experiencing kidney failure at 32 or, worse, dying on a ventilator and leaving my son to grow up without his mother.

Being the change I want to see in a world in crisis

Then I thought of all the people who benefit from me getting the COVID-19 vaccine and sharing my data with the CDC. The 4 million people living with Sjogren’s in the United States. An estimated 20,000 people living with distal renal tubular acidosis like I do.

I can help bring attention to this population and how the COVID-19 vaccine, and hopefully future vaccinations, affects those of us with autoimmune diseases.