A World Turned Upside Down
Starting this blog was on my “Goals” list for 2020 since January 1. The COVID-19 pandemic came sweeping in a couple months later, thrusting an unexpected and enormous spotlight on the immunocompromised, which describes many rare or chronic disease patients. It only took a global health crisis to give me the push and inspiration I needed to start this blog, so I felt that I should dedicate my first blog post to this topic.
Since early March, my state has been urging those of us who are immunocompromised or at high risk for severe disease from COVID-19 to take some added precautions: avoid contact with sick people, wash hands constantly, wipe down commonly touched surfaces. The thing is, we didn’t need the CDC or state government to tell us how to avoid infection. Those of us with primary immunodeficiency have become accustomed to many of these measures as part of our daily lives, because each and every disease may carry a high risk for severe complications for us. This was no change to our routine. In addition to these relatively normal measures, many of us stick ourselves with needles weekly for something called immunoglobulin infusions (a type of infusion that replaces the antibodies that our bodies cannot make naturally). All of this gives us the best chance to live as normal a life as possible while living with a chronic disease.
However, we were soon told to stay at home unless ABSOLUTELY necessary to go out. We were urged to have family members or neighbors do our shopping, to work from home, to move doctors’ visits to telehealth appointments. Essentially, we became recluses overnight with no end date in sight. We were told it could be weeks or even months before being able to go out into a public space again. Some have been told that their immunocompromised kids may not even be able to return to school in the fall. I am now a little over 2 months into that journey, and this is just a super weird time for us all. If you are struggling with that, I am right here with you.
See, it wasn’t until February (6 months after starting my infusion therapy) that I finally started to feel healthy again. I had the energy to socialize with friends and exercise and do so much more...just in time for a global pandemic. COVID-19 came smashing in at a time when I was just starting to feel like myself again, and I was heartbroken. There were many tears in those first few weeks at home before (very) slowly being able to accept this “new normal.” Acceptance doesn’t necessarily mean that you are happy with it. It means that you know you will have to live with it and have decided to try to make the best of the situation.
Some days, I have the motivation to start a new blog or bake a thousand cookies from scratch. Some days, I binge watch one of my favorite shows in my pajamas on the couch all day. Balance. There are going to be ups and downs in dealing with months of self-isolation, and you are probably going to have a pretty large range of feelings. Let yourself have them, but also, try to find the things that give you some joy or excitement. That may look like a Zoom happy hour with the friends you’re missing or binge watching Netflix or going for a quiet bike ride. It might mean finding a new hobby or starting a side hustle. We all deserve moments of joy, however that looks for you, especially in the midst of a scary and unusual new normal.
Many of you may also be frustrated by the indifference that started creeping in once businesses were forced to close. Some outright said that a few thousand “high risk” lives were worth sacrificing in order to save the economy. Some kicked and screamed and stomped their little feet at the idea of wearing a mask in public to protect us. I can’t speak for you, but for me, this was a repeated gut punch every time I saw a protest on the news or a friend sharing a post. My biggest hope was that the pandemic would generate much more long-term public awareness and empathy for those who are susceptible to infection, and these sentiments, especially from people that I know, made me feel like people thought my life and well-being was somehow not that important. If this is also difficult for you, I am right here with you.
So here’s how we can continue to make the most of a crazy situation: let’s continue to share legitimate public health info, to raise awareness for those of us living with these diseases, and to try to educate those who are open to it. If you need a break from social media or the news or just certain people, don’t feel guilty. Snooze someone on Facebook for 30 days or switch out that dashboard scrolling for an episode of your favorite sitcom when you start feeling frustrated. This is uncharted territory, even for us immunocompromised folks, so just keep trying to find ways to find peace and joy in this new way of life (from a social distance).
Chronically yours,
Jen
