Have you found yourself talking to someone more COVID cautious than you and thinking “why are they so freaked out?” You’re not alone. But in all likelihood, the person you chatted with is feeling quite alone, and could really benefit from more people understanding why they are so afraid. Yes, vaccines are awesome and case numbers are dropping! Sure, you’re probably justified in no longer feeling personally afraid of COVID. But this pandemic is not over and does not affect everyone equally. Here are just some of the potential reasons your chronically ill friends’ boundaries may be more extreme than yours:
General concerns
First of all, this doesn’t just apply to chronically ill folks. You may know someone who seems really anxious but they seem healthy, so what’s the problem? For starters, underlying anxiety is an important factor and deserves empathy. They may also have a high-risk family member in their household who they love and want to protect. Even living in an area with high levels of the new variants -- which are highly infectious and more able to cause illness post-vaccination -- could be enough to make someone nervous. It’s best to air on the side of empathy and seeking to understand, rather than judging their actions.
Pre-existing conditions
I recently heard someone talking about a person they knew who had died from COVID. Their friend replied, “Wow he was really young to die from COVID. Did he have underlying conditions?” Yes, he did. So they both breathed easier, thinking phew, that means I’m not at risk of dying like he was. I’m safe.
Imagine being someone who actually does have underlying conditions. You can’t just brush off these stories by thinking “oh, well that’s less likely to happen to me.” Instead, every horror story you hear, every statistic you read, is filtered through the knowledge that you have a higher than average likelihood of severe illness, of long-term complications, perhaps even of death. Truly put yourself in that mindset. How would that feel? Now multiply that by every COVID conversation, story, or thought you’ve had for the last 14 months. That’s a lot of time spent in some pretty scary emotions. And it’s made worse each time someone quotes statistics at you or says “well the likelihood of…” to try to make you feel better.
The guidelines are not made for us
The CDC and state governments are making impossible decisions. They are trying to balance keeping people safe, but also happy and hopeful enough that they have the stamina to keep up restrictions. They are also concerned with keeping the economy afloat, keeping kids from falling behind in school, and protecting the overall mental health of our society. They look at the statistics and determine which actions will cause the least harm to all of these players. The average vaccinated person is pretty unlikely to get a bad case of COVID at this point, and probably less likely to pass it on to others. So, let’s give people some hope by telling them they can now hang out indoors and take their masks off once vaccinated. Sure, there may be small increases in cases as a result, but these agencies are not concerned with those individual people -- their job is to see the big picture. And I don’t fault them for that! I think these loosening of guidelines are the right move for most Americans (when considering mental health, education, jobs, etc), but when you belong to a group that is more likely to be one of the few who do get COVID from these new changes, it doesn’t feel great.
I also want to note that if you really read the guidelines and restrictions all the way through, you’ll see stipulations for “high risk” individuals. So while you may think “why aren’t you comfortable hanging out with us indoors? The CDC says it’s fine!” remember that the CDC actually doesn’t think it’s fine for people with higher risk than you.
A lifetime of being the exception
I’ve been sick my entire life, but didn’t get a correct diagnosis until I was 25. I’m not alone -- the average time it takes for people with EDS (one of my conditions) to find answers is 12 years. Other conditions like POTS, ME/CFS, MCAS, chronic Lyme, etc. have similar timelines. These are not rare diseases, just rarely diagnosed. There are many millions of people in this country who have lived their lives being brushed off and gaslit. We’ve been told “well statistically it’s very unlikely that could happen, so don’t worry about it,” only to have it happen exactly the way we feared. We are the anomalies, the people who don’t fit the textbook version of illness that doctors are trained to expect. We baffle specialists and are excluded from studies. Over time, we learn to not trust our bodies to respond in the way studies say they should. So when doctors, the CDC, or our friends tell us that the odds of us getting COVID are “really unlikely,” it’s hard to quiet the inner voice as it lists every time when that line of thinking proved false for our bodies.
This is not irrational. It is rationally drawing conclusions from a data set that is different than yours.
We know what it is we fear
I've heard this one a lot from disabled friends. “People would fear long-term COVID more if they knew what it would be like.” You’ve probably never spent weeks, months, or even years at a time horribly ill. You don’t know what it’s like to *chronically* not have the energy to get out of bed, or work, or socialize, or think clearly enough to have a conversation. You probably don’t know what constant pain or agonizing pain feel like. You’ve never wept halfway up a staircase because you can’t make it the rest of the way but nor can you get back down. You don’t need a feeding tube to eat or IV fluids to stand upright. Your life doesn’t hang in a delicate balance in which one misstep, one food contaminant, one virus could set you back years of healing. You’ve perhaps never had to face your own mortality.
For those of us who know, really viscerally know, how incredibly bad it can get, we will do anything to avoid making things worse. And for many of us, a bad virus like COVID could be what unleashes the beast. Many patients with chronic illnesses can point to a virus or bacterial infection that unlocked symptoms that never went away.
Sure, I may be unlikely to die from COVID, and may even be unlikely to have severe illness from it now that I’m vaccinated (though that’s not the case for everyone!), but I have plenty of reason to fear that it could leave me permanently sicker than I am now. Taking off my mask or hanging out indoors is simply not worth that potential outcome.
Compromised immune systems
Being immunocompromised -- due to immune disorders, immune-suppressing drugs, cancer treatments, whatever -- is terrifying right now. When we talk about the viral load needed to contract COVID, that’s not necessarily accurate for a compromised immune system. A briefer, less direct exposure could overwhelm immune systems not up to the challenge. Sure, wearing a mask that mostly covers your face and staying a few feet away is probably enough to keep most people safe. And yeah, for vaccinated folks, even if you do contract COVID, you probably give off so little virus that you can’t spread it to people around you. But none of this actually applies for someone whose white blood cells aren’t up for the task.
One thing I often hear when expressing concern is “wait, but aren’t you fully vaccinated?” First of all, some people with chronic illness can’t safely get vaccinated, so they will remain vulnerable after everyone around them has moved on to feeling invincible. For those who can get vaccinated, all antibody responses are not equal. You may have heard that your vaccine has 95% efficacy, or that in real-world conditions it held up 80% of the time. But what about people with immune disorders? Or people who were on immune suppressants at the time they got vaccinated? They may only have 60% or 40% of the protection you have. Studies so far haven’t included immunocompromised people, so we don’t know how effective vaccines actually are for us. When I read CDC guidelines, do I follow the instructions for vaccinated people or unvaccinated? Do I fall somewhere in between?
Medical PTSD
I’ve heard reports from psychologists discussing the impact COVID has had on our collective psyche, and it’s remarkable. They also frequently comment on the disproportional impact it has on people who already had a history of trauma. The feeling of not knowing if you are safe in day-to-day situations is heavy on anyone. For people who have had that feeling before 2020, it can be extremely triggering.
Living with chronic illness leaves a lot of scars. It can cause significant trauma and anxiety. So, on a basic level, our general mental health and wellbeing are going to be impacted more than someone without a history of trauma. The fact that our PTSD is health related is also significant. Our trauma comes directly from fearing illness, sometimes fearing death, from conditions not well understood by our doctors. This pandemic hits very close to home. To make matters worse, our traumatic experiences were further complicated by the same systems and relationships that are involved in our experience of this pandemic.
When we are told by employers that we don’t have high enough risk to merit working remotely, we feel the pain of every other employer who denied accommodations we needed. When friends and family criticize our COVID boundaries, we remember the confusion and grief of being told (over and over) that we’re handling our health problems the wrong way. When medical or political institutions make statements about what is “safe” or reasonable right now, we shrink from the memories of misinformed hospitals that sent us home because we appeared healthy enough, insurance companies that denied us critical treatments, and politicians who took away resources we needed.
When I advocate for myself, I often feel the need to prove -- to myself as much as to the other -- that I am being “rational,” that my decisions are purely evidence-based and cerebrally make sense. But you know what? The irrational, anxious, traumatized part of my brain is just as real and justified as my logical mind. Some of my fears are purely emotional, purely a result of trauma and anxiety. I may not want to go to that gathering, even though it likely is safe according to all evidence presented, because something about it feels triggering to me. I may wear a mask even though we’re outside because I know that a mask will make me feel safer and I will have more fun if I’m not thinking about what if’s. And yeah, I may have days in which I backtrack, when activities we did last week no longer feel safe, because something happened this morning that triggered me and caring for myself right now looks different than it did before.
I will say it again because our society does not value our emotional truths: these feelings, this anxiety and PTSD, is also valid. Our sense of safety is also important and deserves to be respected. If we try to charge into a new boundary before we feel ready because rationally it makes sense, it will only cause more distress and delay our overall timeline of returning to a life we want to live post-pandemic.
Final thoughts
Hopefully you are able to put yourself in the place of someone who is experiencing these complexities, and can understand why they may feel and act differently than you. Please take the time to listen, to ask where their boundaries lie rather than assuming your way works for everyone. If someone does have the energy and courage to share their fears with you, try to be vulnerable and show empathy. Remember that the conversation itself will have taken a toll on them.
Thank you for taking the time to read this!