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Credit: Tatiana Ayazo

I have a long list of chronic illnesses that includes many multiple autoimmune diseases, such as rheumatoid arthritis, Raynaud’s, and spondyloarthritis. I have asthma, IST (a form of dysautonomia with my heart), arrhythmia, small fiber neuropathy, fibromyalgia, hypothyroidism, and more. I am on a daily dose of prednisone, a biologic medication, and multiple disease-modifying antirheumatic drugs (DMARDs) to help keep my diseases under control.

These suppress my immune system, making me #HighRiskCovid19. I am one of the many people who’ve struggled to be heard and valued since the beginning of the pandemic.

It was alarming for everyone when the coronavirus started wreaking havoc all over the world, but it was downright terrifying for those of us who are immunocompromised. Many of us go into hiding during a normal flu season because even contracting the flu can cause life-threatening complications. The flu is no joke — and of course, we now know that COVID-19 is much worse.

A group of us patients wanted to put a human face on those who are higher risk, so we created the #HighRiskCovid19 hashtag in the hopes of being heard — to help spread our stories and increase compassion and understanding. We wanted people to realize that they needed to protect not only the older people in their families, but us high-risk folks who often go unnoticed. We screamed into the wind hoping someone would pick up a faint whisper of our desperation, loneliness, and fear about a virus that was new and devastating.

Some people got the message. Some understood why we were so worried about getting COVID-19, and why we were continuing to be so cautious as the pandemic dragged on. While other people stopped wearing masks, gathered in large groups for holiday celebrations, and pursued “normal” activities like going out to eat without too much thought or worry, we high-risk patients kept staying home as much as possible. We continued to isolate, risking our mental health for our physical safety.

Many people seemingly did not have the slightest issue with this. If you’re high-risk, stay home, was a common mentality. Why should your health concerns get in the way of our freedom?

There are so many problems with this way of thinking, but a big one is that it devalues our lives and worth. Hard stop. Our society needs to make choices, such as enforcing mask wearing and other precautions that prevent the spread of COVID-19, that protect everyone — not leave its most vulnerable members to fend for themselves when the going gets tough.

And here’s the worst part of it all: While it was all too easy for people to ignore the needs of those with medical conditions that literally made us terrified to leave our homes, they were more than willing to raise their hands and claim they had said medical conditions when it became clear that this would help them get a COVID-19 vaccine more quickly.

Stop the Selfishness

After the COVID-19 vaccines rolled out to health care workers and older adults, it became clear that getting the vaccine to people who were high-risk because of medical conditions was going to get ugly. Each state had its own rules and timelines. Many of my fellow high-risk patient friends across the country were vocally fighting for their states to give access to immunocompromised people.

In the states that did give priority to high-risk medical conditions, suddenly everyone wanted to play the health card if they could figure out a way. Folks started lying about their health issues just to get the vaccine, jumping ahead of the line out of deceit and selfishness. It doesn’t matter how confusing and difficult it is to get the vaccine. It doesn’t matter if you are healthy and you have to wait until the end of the line to get vaccinated. You should damn well wait.

Your life is no more valuable than mine or the millions of other high-risk people in the country.

Recent research is suggesting that new coronavirus variants are emerging from immunocompromised people. Weak immune systems allow the virus to hyper-mutate and become more aggressive and deadly. So why are healthy people jumping the line when it actually makes things less safe for them? Why are people not putting pressure on their friends when they do something so selfish and lie to get vaccinated? Why are there no consequences for this grotesque behavior?

Getting vaccinated should be fundamentally a selfless act. It’s about caring for your fellow human beings — caring enough to get the vaccine when it’s your turn to help protect others, and caring enough to let the most vulnerable go ahead of you.

But we’ve turned it into a selfish one, by focusing on a “me first” mentality in order to “get back normal.”

The Inconvenient Truth

When you’re a chronic illness patient, you often don’t stop with one diagnosis. These diseases add up and pile on. Each of my diseases affects my life every single day. They cause me pain, fatigue, disability, countless doctor appointments, medications, and life workarounds. When taken together, they can make me fear for my life under normal circumstances, let alone the extraordinary ones of this pandemic.

When healthy people fake illness to improve their access to something valuable — in this case, a COVID-19 vaccine — of course it hinders vaccine access for those of us with these actual health issues. That’s stating the obvious.

What’s less obvious is the bigger invisible toll this takes on the chronic illness patient community.

So it’s okay to ignore or discount the concerns of people with chronic illness when it’s inconvenient — say, because it forces you to wear a mask — but it’s fine to place value on chronic illness when it gives you an advantage?

It’s not okay.

We Can Do Better

Having a chronic illness, especially multiple chronic illnesses, completely upends your life. It affects your ability to work, to maintain relationships, and to live your life unencumbered.

If people are going to fake being sick when it gives them a leg up, could society at least start to recognize the burdens of what it means to live with chronic illness every single day?

This pandemic has shown us that the choices we make have a ripple effect. Someone not wearing a mask or not staying home when they feel some cold-like symptoms means that someone else can get sick. If they’re high risk like me, they might get really sick. You only have to see a data model of how easily and how quickly covid can spread from person to person and country to country to realize how we are all interconnected.

The virus has flipped our world upside down because it is dangerous, and it is important how we respond to it.

We are all tired. We all want some semblance of normalcy. I have worked from home for over a year, and I have to get outside almost daily to help manage my depression and anxiety. But none of this is an excuse for skipping the line when those most at risk, who rely on the actions of those around them to stay safe, are pushed to the back. None of this is an excuse for continuing to devalue the lives of people with chronic illness.

That selfishness today hinders our progress toward a better tomorrow.

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This essay is part of our Patient Perspectives, which highlights personal sentiments from our patient community. The views or opinions expressed do not necessarily represent those of the Global Healthy Living Foundation.
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