Coming Out of My 'Pandemic Cocoon' as Someone With Autoimmune Disease

I don’t work due to my cluster of diseases, at the forefront being dermatomyositis, my body riddled with weakness, rashes, fatigue and pain. I’ve been immune suppressed for much of the past 26 years.

I know my pandemic experience was somewhat unique. My husband was fortunate to be able to work at home for the past 53 weeks and four days. I immediately started sewing masks, free for friends and family, when we shut down. I stopped counting at 300 masks. Our wonderful son and his partner brought us our groceries; we had everything else delivered. After the initial quarantine we ventured out in public a little, in the summer lull, but quickly retreated as the numbers of cases started to climb. Since then, we avoided indoor public spaces with two exceptions, my doctor appointments, and our daughter’s practices at the ice rink. Even those were tenuous, I had virtual appointments when possible and she only skated on sessions with fewer than five people for the majority of the pandemic. She periodically completely stopped practices for weeks at a time as the numbers of cases escalated. Family members visited with us outside, no matter the weather, masked, distanced, joyously, unabashedly and unreservedly grateful to be together however we could…all to keep me from getting COVID-19.

My family did everything they could to keep me safe, and I am infinitely grateful. I was privileged to be wrapped in a cocoon of love, masks, cleansing wipes and sanitizer. If you want to understand love and compassion, look into the eyes of your 4-year-old nephew as he puts his mask on because, “Hold on, Auntie. I hate ‘rona, I need to get my mask on, so I won’t make you sick.” There was no fear in that statement, only a declaration of pure love and protection. It showed the understanding of the situation we were living in, and his role as a loving family member protecting someone from the outside world.

We (by “we” I mean my unflappable husband and daughter) spent months wiping down everything as it came into the house. Then as the scientists learned more about transmission types and prevalence we relaxed. We still use sanitizer like water. We still wipe our faces and arms with baby wipes when we leave public places, although now that I am fully vaccinated I am feeling a little less nervous about every surface I touch. Which brings me to coming out of my cocoon…

This week, after 53 weeks, my daughter traveled to skate at a training facility in another state for a week of training and my husband went back to the office for the first time. It feels really abrupt and I have to admit I’m nervous. I think I will miss the relative safety of the cocoon my family built around me. Although I guess looking back over the past couple of weeks it really isn’t so abrupt. They made “an emergency” road trip last week to get her new skates when hers broke down suddenly. I picked up take-out by myself. I walked into a couple of stores. I hugged my little nephews. I ate dinner with my friend who is also fully vaccinated. All things that felt impossible and unreachable a couple of weeks ago.

This morning as my husband and I ate breakfast together before he left for work, while we texted with our daughter as she woke up to get ready for her first day of training at this new facility, I was suddenly overwhelmed with the feeling that my cocoon of safety was gone. I had a rush of feelings: gratitude, fear, anxiety, sadness, excitement and shock that we are moving forward. A cold puts me out for weeks. A sinus infection gives me “walking” pneumonia. I’m participating in the Johns Hopkins study to monitor antibodies in vaccinated chronic illness patients and when I got the email stating that my body had made antibodies in response to my first shot I crumbled into tears of joy and liberation. A part of me never believed, even with our precautions, that I would survive this pandemic; the knowledge that my body was trying to mount a defense, no matter the size, is encouraging and gave me great relief.

I am happy and excited to be moving forward. I mourn deeply for those we have lost and sincerely hope we, as a people, can learn lessons from this pandemic about how to treat each other; but I am worried that many will go back to normal as if it never happened.

I know my experience of being safely cocooned is not that same for everyone, but I imagine others with chronic illness and with immune suppression will experience some level of processing of emotions as they and their loved ones re-enter the world as well. I hope by telling my story it helps to normalize that it is OK to be scared, to even miss the time of being “stuck” at home, to whatever extent you were. I know that even through all the anxiety, pain, sadness and anger I felt, for the past year, I felt an immense amount of gratitude for so many things and emerging is not easy. We can only control the things we have control over, so we will continue to mask (double mask in crowds) and do what we can to stay safe, but it is nice not to be so afraid anymore.