5 Things About COVID Anxiety That Patients Wish Friends, Family, and Colleagues Understood

COVID-19 cases in the US have plummeted since the vaccine rollout in January.  The millions of vaccines still being given each day are working tremendously — preventing infection at remarkable rates, as well as minimizing severe illness and death in those who do experience breakthrough infections.  Added to this is the warmer weather calling us outdoors.  Since outdoor transmission accounts for less than 1% of cases, the spring and summer weather will only help to control the virus.  The CDC has changed its guidelines dramatically to reflect these successes.  With the world opening up, spring in the air, and very real protection in our arms, for many, optimism is infectious! 

Why, then, are some people continuing to stay isolated?  Why hasn’t everyone shed their outdoor masks and embraced the new guidelines?  The reasons can be varied and extremely complicated.  If you know someone who seems to be more cautious than you, a history of illness or disability may be at the heart of their fear.  We hope you’ll take a minute to understand why those of us with chronic illness still feel vulnerable:

1. pre-existing conditions and compromised immune systems

First and foremost, we may have a higher risk of contracting COVID, thanks to immune deficiencies or immune-suppressing treatments.  You may have heard the term “viral load” — how much virus exposure would be needed for you to get infected.  If your immune system doesn’t fight the way it should, a smaller viral load might still be dangerous.  For example, it seems that vaccinated folks who do get infected may not give off enough germs to infect anyone else… with a healthy immune system, that is.  

If we were to get infected, people with a history of illness may be more prone to severe symptoms, death, or an exacerbation of our pre-existing conditions.  The stakes, simply, are much higher.  The difference in fun between going to a restaurant vs. having a socially distanced outdoor picnic with takeout may not outweigh the difference in risk.

2. guidelines not created for us

CDC and state guidelines are created for harm reduction — giving enough space for people to live their lives and feel hope, while also advising against the most harmful or risky behaviors.  They also have to keep an eye on the economy, kids’ education, our collective mental health… it’s a lot to juggle.  So, when looking at the data, scientists and policy makers weigh all of the costs and benefits to find the path forward that causes least harm to most people.  Anyone who has spent their life with illness or disability, however, knows that what is true for “most people” is often not applicable to their own lives.  When reading these guidelines, we may feel that they are reasonable for our friends and neighbors, but not necessarily for our unique (and often overlooked) circumstances.  

Many of these guidelines, as well, are written specifically for healthy, fully vaccinated people.  If you continue reading the reports, there are additional guidelines for high risk or immunocompromised individuals.  So before you raise your eyebrows at someone’s choices, remember they may in fact be following recommendations from the CDC or their doctors.

3. vaccines

The new guidelines are largely the result of how successful vaccines seem to be at reducing illness, death, and transmission.  Many people now feel comfortable loosening their personal boundaries because they have reached full vaccination status.  For chronic illness warriors, this may not be an option.  Some people are not able to get the vaccine at all due to illness.  Others can get the vaccine but may not be able to mount a full antibody response to it due to immune disorders or immune-suppressing medications.  

Not only does this add to increased risk of getting COVID, it also makes reading CDC guidelines and determining personal boundaries more complicated.  Scientists are working on more nuanced antibody tests to determine how strong an immune response to the vaccine was.  But until it is developed in the next several months, we (and our doctors) have to guess whether we fall into the “vaccinated” or “unvaccinated” category.

4. the emotional toll of illness

Yes, our physical safety may be impacted disproportionately by COVID.  But our emotional safety is also at high risk.  Psychologists have analyzed the many ways in which this pandemic has affected our mental health.  While it is affecting almost everyone in some way, people with a history of trauma are impacted most.  The fear we all felt last summer and fall — not knowing who to let in or if we were safe in our daily life — left a toll.  Anyone who had experienced those same fears before this year would feel the same anxiety plus triggers to past traumas.

An unfortunate side-effect of life with significant illness is emotional trauma.  So already, people in our community are primed for additional COVID anxiety.  The fact that our trauma is directly related to fearing for our health compounds this problem.  For the icing on top, many chronic illnesses are triggered by an initial virus or bacterium.  We may have begun our journey because of getting sick from something like Lyme or mono.  When we hear stories about COVID long-haulers, we know what it’s like.  We are terrified that even a mild case of this virus could leave us permanently (more) disabled.  When you’ve already spent years fighting for a normal life, this hits hard.  

COVID fears find our most sensitive nerves.  We are extra vulnerable, primed for anxiety.  One particularly effective coping strategy for this anxiety is controlling our environment to minimize risk.  Now that the risks are decreasing, our anxiety may not have yet dissipated.  Can you blame us for still holding onto the safety ropes that provided such stability for the past year?

5. let us choose our pace

When advocating for ourselves, we often feel the need to prove that we’re being “rational.”  But you know what?  The truth is, the irrational and traumatized aspects of our mind are also real and justified.  Some fear is simply an emotional response to trauma.  A gathering that, by all rational accounts, seems to be safe might not feel safe yet.  Wearing a mask while outdoors and distanced might not be medically necessary, but could provide a sense of comfort.  Some days, an activity that felt safe last week may suddenly feel scary because we were triggered by something that morning.  All of this is ok.

The reality is that pushing someone to change their boundaries before they are ready will only exacerbate the problem.  Letting someone know you respect their decisions, and giving them space to act in ways that feel safe, will let them heal.  If you find yourself thinking “but they’re just being so anxious!” — take a breath.  Remember that they may have very real reasons to have different boundaries than you.  And if their decisions are being tainted by anxiety?  Have empathy for that as well.  Anxiety is challenging, and it is not anyone’s fault.  The best thing you can do is be supportive of their process and understanding of their differences.

We have come a long way through this pandemic, and the end is in sight!  But what this final stretch looks like — and how long it takes — is different for everyone.  Let’s approach the exit ramp with kindness and empathy.

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