The forgotten immunocompromised are shouting from the trenches

Most of the rest of the world has moved on from COVID. We can’t

Published November 13, 2022 2:00PM (EST)

Woman wearing a surgical mask as crowd of people walk past her in blur motion (Getty Images/nycshooter)
Woman wearing a surgical mask as crowd of people walk past her in blur motion (Getty Images/nycshooter)

Hi. I'm down here. Can you hear me?  I'm your friend — your relative — your coworker — the one who lives with only a fraction of the immune system you have at your beck and call. Yes, I'm one of many who falls under that "i" word that you might be sick of hearing: Immunocompromised.

Millions of people with compromised immune systems exist — in spite of the collective, tacit declaration that the pandemic is over. A significant number of them, myself included, don't respond to COVID vaccines, or respond minimally. According to The Atlantic, close to three percent of adults in the U.S. take immunosuppressants, totaling at least seven million immunocompromised people throughout the country. In July of 2022, the Drug Discovery World noted that immunocompromised COVID patients are more likely to require hospitalization and are about four times more likely to die once in the hospital than hospitalized immunocompetent COVID patients. Now, as the virus continues to circulate and mutate, the immunocompromised population is stranded in the trenches, pleading to be remembered.

You can't typically tell that someone is immunocompromised. I probably look healthy when I roam the grocery story, one of the few customers still wearing a KN-95 mask. But I see the eye rolls from customers and employees. I feel their judgement as I reach for a crown of broccoli, this white cloth hiding my irritation from the ignorance in the air. I sense some think this face covering shouts my political stance. Perhaps they believe I wear it because I'm overly paranoid. But I wear it because I have no CD20 cells, a subset of B-lymphocytes that attack viral invaders. An invisible, purposely-induced deficiency of these cells prevents further neurological damage to my body. Hence, I wear a mask solely as a mode of defense against the viral threat that many have dismissed as "just a cold."

But a simple cold is never simple when you live with an autoimmune condition strong enough to dismantle your ability to walk. Indeed, without the body's full pathogen fighting abilities, a routine illness, seemingly benign, can pose a serious threat to those of us with immunocompromised conditions of any kind.

The other day, a maintenance worker came to my house to work on my HVAC system.  I explained my predicament and asked him if he wouldn't mind wearing a mask while in my home. "But I don't have COVID," he replied, confused.  I explained that multiple sclerosis (MS) runs rampant in my body, and as a result, I've lost a full class of B cells.

We're here and we matter. We're your friend, your relative, your coworker. And one day, we could easily be you.

This is an odd ritual, and one I don't think that most of the immunocompetent population has to go through: providing personal health details to a stranger in order to validate my request — as if validation is required in the first place. But this is my home; the one place I can ensure a viral threat isn't lurking in the distance.

Until you have lived through a cold in a body that is already fighting a disease, a body with limited defenses, you haven't considered the full meaning of the words just a cold. You haven't experienced your limbs, heavy like cement, and your brain, fatigued like thick fog on a Monday morning. You've never succumbed to the mixture of MS and viral replication, a combination I liken to the perfect storm on a cold, winter's night. The effects can be brutal. And that is only just the beginning.

At the start of 2022, The New York Times labeled the seven million immunocompromised people in America "the forgotten." Doctors and researchers admit that not as much research has been done on this group compared to the rest of the population;  as a result, it is unknown how protected many of us are. The science typically used to make safe health decisions are lacking and many of our choices are still guesswork.

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Maybe I'll survive COVID without being admitted to the hospital. My chances are good, although not as high as yours. Sure, there's a possibility I'll avoid long COVID, too. Maybe odds are in my favor. But I live with Long MS, and as a result I will not gamble with my health anymore.

Living with a chronic health condition is no easy feat. It greets you, unexpectedly, like a ghost in the night. It stays, indefinitely, hanging from your limbs, weighing you down, day after day after day. It doesn't worry whether you have children to care for or an event to celebrate or a job to fulfill. It makes life that much harder. Today. Tomorrow. Forever.

I wish I could go back to the time when a cold was just a cold, but that is a choice that has been taken from me.

Do you hear me from way down here? I'm not telling anyone how to live their life. I'm not asking you to wear a mask as we enter public places together. I'm simply showing you that we, those who are immunocompromised, are shouting, loudly, to be heard. We deserve recognition that our lives are valued like yours. We want to be remembered as seven million Americans who matter to the majority. When you come to our home, we expect you to protect us in the one place we feel safe. We want you to see us, not as political activists (we're not), but as people. It would be swell if you could remember that immune system status is invisible. It would be kind if the world considered us and our complicated situations as they wonder why some haven't moved on beyond the crux of COVID.

It may be just a cold for you. But I'm down here with the seven million forgotten, calling out to you, because it's not that simple for us. We're here and we matter. We're your friend, your relative, your coworker. And one day, we could easily be you.


By Lindsay Karp

Lindsay Karp is a freelance writer with a background in speech-language pathology. She writes about parenting, life with MS and everything in between. She is an aspiring children’s book author and currently working on a memoir about her 13 year diagnostic journey. You can follow Lindsay on Twitter here.

Lindsay Karp

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