From Guilty to Grateful: How I Have Felt During This Pandemic Living with an Autoimmune Disease
Since March marks the one year anniversary of New Jersey residents being told to shelter in place, Women’s History Month, and Autoimmune Disease Awareness Month, I feel compelled to share my experiences this past year as a young woman living with an autoimmune disease. Specifically, how this pandemic has taken me from feeling guilty to grateful.
Hi, my name is Sophia Vicari, and my body is at war with itself. I am one of the estimated 1.6 to 3.1 millions of Americans living with inflammatory bowel disease (IBD), ulcerative colitis (UC) specifically. Autoimmune diseases occur when the immune system overachieves, and for me that manifests as inflammation and ulcers in my colon. I am currently on a medicine called Entyvio, which is a gut-specific biologic. Entyvio calms my immune system down, taking it from, say, an A+ to a C, so I live like I did before my immune system decided to try for valedictorian (in other words, I’m in remission).
I’ve maintained my treatment all throughout this pandemic. That’s right: while everyone was increasing their vitamins and bending over backward to boost their immune system, I was actively suppressing mine every eight weeks. I even posted a video to my IBD blog emphasizing prudence over panic and saying I was still going to get my infusions (and, laughably, I thought quarantine would only last two weeks). While I wouldn’t trade my medicine for anything, knowing that I was actively suppressing my immune system during a global pandemic added an additional layer of stress to pandemic life for me and my family.
In the beginning of the pandemic, I felt guilty:
Guilty over the fact that while adolescents were grocery shopping for seniors, at 24 years old I had to stand back while my parents wiped down our groceries with disinfectant.
Guilty while I collected unemployment during my months-long furlough rather than work a temporary job in a grocery store, feeling that long shifts in crowded stores were too big a risk.
Guilty that my Dad had back to out of an event where he was to be a speaker, since socialization was too big a risk to me (the event ended up being postponed anyway).
Personally, I struggle with feeling the need to justify my actions—or, rather, inaction—due to my age. In a more tolerant world, I wouldn’t need to explain why I didn’t pitch in more in the beginning of the pandemic. But I know that many people are ignorant to just how many autoimmune disease warriors live, walk, and work among them.
I’ve seen the viral picture floating around Facebook every so often, chastising young people for taking seats on a train while an elderly person stands. And when I see that, I can’t help but wonder if someone sitting down is doing so because they have an invisible illness and lack the strength to stand. And let’s not forget all of those early pandemic reports saying only the elderly and the immunocompromised needed to worry. While trying to quell the fears of the majority, it devalued the elderly and autoimmune populations.
But now that I am fully vaccinated, I feel so grateful. Grateful for the scientists who worked tirelessly to develop the vaccine. Grateful for all those involved in the supply chain and deliveries of said vaccine. Grateful for our health care heroes fighting the pandemic and administering the vaccines. Grateful for the frontline heroes, like grocery store workers, delivery drivers, mail carriers, and more who kept the world fed and supplied. Grateful for the artists who created the content that entertained me all year.
And, as an autoimmune warrior, I’m also grateful for:
The ability to breathe easy again. To not panic when I see someone’s nose outside of their mask while in a store. (I do, of course, still get frustrated by this.)
The mRNA vaccine, since I can’t have live vaccines due to my medication.
The love I have felt from family, friends, and coworkers throughout this year. From my manager who was adamant about me working from home before it became a company policy to my friend and her family who wore their masks around me without complaint in their own home, these acts of love were the rays of sunshine I needed in a very stormy year.
So please, as you go through life during this pandemic and beyond, be kind to us autoimmune warriors. Wear your masks properly, don’t dismiss the vulnerable, and don’t yell at us because you are upset to see people younger than you get the vaccine first. We all need to lead with love and continue to take the recommended precautions so we can stop the spread and protect those around us. You know more immunocompromised individuals than you realize.
For inspirational, informative, and humorous content about life with IBD, I invite you to visit my The Princess Promise's social media. Through my Facebook and Instagram, I hope to eradicate IBD’s stinky stigma one post at a time.
P.S. Full disclosure: Looking back at my social posts from very early in the pandemic, I posted that I still planned to go ballroom dancing, again emphasizing precaution over panic. The very next day, I posted that the event was cancelled “but it doesn’t take away my intent to go!” Clearly, that was not the right move. I was so naïve, as many of us were, but soon the severity of what it exactly means to live through a global pandemic set in. My outlook on pandemic life changed as I gained new knowledge, and I am proud of the fact that my trust in and knowledge of science grew significantly in a short amount of time.