Still Searching for Normal: Chronic Illness & Covid-19

Written by Ronny Bachrach

In March 2020, I went into the Covid-19 pandemic as a type 1 diabetic with hypertension. I live with my family of three, a healthy husband and a healthy one-and-a-half year old daughter. It was scary. We were early to take things seriously, even before things started shutting down.

The early information about Covid on diabetics wasn’t super clear, but it didn’t take long to be considered higher risk than the general population. We isolated, we wore masks, we even wiped down all of our groceries.

Several months into the pandemic, my daughter Sam was diagnosed with a rare disease called SJIA. Her immune system doesn’t work properly and she also takes medicine to suppress her immune system. She’s more susceptible to illness and she’s more likely to have a worse outcome and/or to experience a disease flare because of it.

While I started off as our weakest link, I was quickly unseated for the most at-risk in our home. It was somewhat easier to navigate in the early days of the pandemic. While there were many unknowns, many people were in the same boat. Kids were home from school and daycare. Masks were being worn everywhere. People were limiting public outings and staying home for long quarantines when sick. And there was contact tracing being organized by the state.

We saw daily case counts and used the prevalence of Covid in waste water to assess our risks and make decisions about taking Sam out. We preferred outings to places, like the local library, that were relatively not busy with very good adherence to the mask policies. While we didn’t go often, we had the information and the assurances to make those decisions to go out.

More recently, it seems that most people have largely gone back to their normal lives; dining out, shopping, going to movies, working out at gyms, etc. While in the seemingly never-ending Omicron variant surge, with no more mask mandates and most people no longer masking by choice, we no longer felt comfortable taking Sam to any indoor venues. Contact tracing is long gone, Massachusetts stopped publishing its daily case counts and the CDC guidelines are lax enough to allow those still with active Covid back out into the public.

The tools we used to both gauge safety and to stay safe are for the most part, gone.

With 97 percent of the country currently experiencing high or substantial community transmission, we are currently limited to the hospital where masks are mandated but not strictly enforced, and outdoor activities.

It’s hard and incredibly isolating for all three of us, but it’s what’s necessary to keep our now three-year-old daughter as safe and healthy as she can be. It has put the onus on us, her parents, to find fun, fulfilling, and safe activities for her to do outside and with others.

We’re fortunate to be able to work from home and we’re grateful that she’s three and we have this time before kindergarten to see where the near future takes us with each passing Covid variant. Other parents in our position have been forced to make really tough decisions about the risks of school, with some going so far as home schooling.

In this stage of the pandemic, which is largely driven by personal risk assessment, immunocompromised people’s risks are largely overlooked and forgotten. So please, by all means, live your life to the fullest; everyone deserves happiness. The pandemic has been hard on everyone and we’ve all lost time with others and many meaningful experiences. But please remember others who don’t have the privilege of good health.