Know I’m Here. Year 2 of living as an immunocompromised person in a pandemic.

By now, many of you have read the news stories that those of us who comprise the millions of immunocompromised individuals have varying degrees of response, if any, to the Covid-19 vaccines. We are patients who have weakened immune systems, whether due to a vast array of underlying health conditions, immunosuppressive medications, or both. My intent here isn’t to rehash the eloquent reporting by many excellent science journalists, although I will give a shout out to The New York Times’ Apoorva Mandavilli and The Atlantic’s Katherine Wu, who always keep us in mind whenever writing about Covid-19. Nor is it meant to replace the research studies, interviews, and social media posts by the numerous physicians and scientists trying to solve these issues, but I have to highlight Dr. Dorry Segev, Professor of Surgery and Epidemiology & Transplant Surgeon at Johns Hopkins, who consistently keeps this front and center with government agencies and the media, as well as Dr. Celine Gounder, Professor of Infectious Disease and Epidemiology at NYU, whose concise, consumer-friendly tweets explaining immunology are a joy to read. The current status for us is “get vaccinated, but act like you’re not,” meaning mask up, social distancing, avoid people whose vaccination status you don’t know, and avoid large crowds. That’s a hard thing to accomplish in reality when the rest of the world isn’t necessarily following the guidelines.  

What I do want to discuss here is the ongoing ramifications that haven’t been addressed in detail, namely the financial, physical, and psychosocial toll of this ongoing quarantine for the immunocompromised. Many newspapers and media outlets, in reporting on the topic, have included interviews with real-life immunocompromised patients that help put faces to an abstract concept (one recent example from The Lily), but the consequences are often glossed over. Financially, many of us still have to support ourselves and our families. Some of us are being told to return to the office, with no options for remote work, if we even had those options to begin with. Paid leaves and some government programs are expiring. Some are dipping into savings and retirement to stay afloat, and many are scared about what this means long-term. 

Physically, we all (and by all, I mean the entire world) experienced the toll of staying cooped up for a year, unable to sustain our normal exercise or therapy routines. For the immunocompromised, being physically active, at whatever level is individually possible, is critical for us to stay healthy. Prolonged loss of access to these services can exacerbate our health situations, and home gyms (if even possible) and loss of access to therapists can create a looping cycle of declining health. All of this leads to an array of psychosocial issues. The world was reminded in 2020 that we are social creatures, and friends, family, colleagues, and being part of a community is critical to good mental – and physical – health. Although many immunocompromised groups have connected on social media platforms this past year, it can’t replace the joy of being in the presence of people we care about, or even general community interactions. Resources to help the immunocompromised deal with these aspects are scarce, and not everyone is technologically savvy or even has access to the limited options online. 

Look, I get it. The first thing we need is for the researchers to figure out how to get us as protected as possible, which so many are valiantly working on. Pulling apart the complex web of underlying conditions that get someone labeled as “immunocompromised,” in addition to the vastly different medication regimens we are on, is a huge task. This is going to take time, perhaps a lot longer than we’d like. In the meantime, we need more than pat advice about masks and staying 6 feet part. We are people, not just protocols. We need to be seen for the whole individuals that we are, with lives of our own, with real bills coming due, family obligations to meet, attending to our own physical and mental health needs. We need an open dialogue with our medical practitioners about this, individualized to our unique needs, and not just an approved statement from a government agency or some healthcare system’s legal team.

So, what does this have to do with the picture above? The photo is from a trip my husband and I took in the fall of 2019 to Churchill, Manitoba, to see the polar bears as they migrated back onto the ice. We were also fortunate enough to see dancing northern lights, rare for that time of year. It was the kind of amazing travel that makes you feel alive. Connected to nature and wildlife. Connected to the universe. Connected to life. “Know I’m Here” is one of eighteen murals painted in Churchill when artists from across the world volunteered their time to paint a series on murals on buildings throughout the town to bring hope and recognition to a community that felt forgotten.

Know we’re here. The millions of immunocompromised community members. Hopeful, but waiting to connect fully back into life.