Long COVID and the Need for Empathy: The Pandemic Isn’t Over for Everyone

Most people seem to have collectively decided the pandemic is over. Not because it is actually over, but because they want it to be over. There is an interesting kottke.org article about his take on it. What I have noticed throughout the pandemic is a massive amount of insensitivity. I regularly hear people say that they miss the early days of the pandemic. I hear people complain about how they are inconvenienced by masks. I hear people complain about how hard it is to breath with a mask. I hear people make jokes about COVID, extremely insensitive jokes. I hear a lot about the majority of Americans’ pandemic experience because those least affected feel the most comfortable being vocal. Conversely, very few of those people seem to be listening to or even remotely curious about the experiences and perspectives of those that have been devastated by COVID.

This is a symptom of the bigger problem of chronic societal deficiencies regarding inclusivity, sensitivity, empathy, compassion and social education. We have created a society that excludes and erases anyone that is different. Swimming only in the collective knowledge of the privileged majority regarding any human experience is contributing to the exclusion of the unprivileged. This is rampant and the result is a systemic prevalence of racism, homophobia, transphobia, ableism, etc. Inclusion takes intentionality, education and proactivity and you cannot include those people whose experience you know nothing about. COVID is one area where I have experienced this problem and so that’s the lens through which I’m talking about it.

Over 6 million people worldwide have died from COVID. 100 million people worldwide have experienced or are still experiencing Long COVID. In the United States 500,000 kids have been diagnosed with Long COVID. The number is likely higher since kids are believed even less than adults are when it comes to this illness.

No one that I know who has experienced Long COVID, and I now know a lot, would ever say they miss anything about the pandemic, would ever make insensitive jokes about COVID, would NEVER complain that it is hard to breath with a mask. We know what it’s actually like to have a hard time breathing and I’m telling you wearing a mask isn’t it. Getting COVID for us, and for our loved ones who have been through this with us, hasn’t been a fun water cooler topic of conversation at work. It’s been the worst thing that has ever happened to me, for 6 months every second of everyday felt like being buried alive. There was no ability to distract from the way the illness consumed my body and it took every ounce of my strength–mental, physical and emotional to get to where I am now. I am terrified for every person that gets COVID because it’s roulette–no one knows who will develop Long COVID. I am terrified of getting it again.

When I talk to people who have lost loved ones to COVID or have Long COVID, what they communicate is how unbelievably invisible and voiceless those who have been hit hardest by the pandemic are. I’m part of a group of Long Haulers that have been meeting with our US Senators office to discuss support for those with Long COVID because even the government, in its efforts to help us, are doing so without accurate information or even talking to folks with Long COVID to understand our experience. We’re trying to change that.

What has been shared in these meetings is that the overall impression the public has of Long COVID is that we’re “really tired”. For many, fatigue is certainly a significant part of Long COVID. Fatigue, however, doesn’t quite capture it. It’s more like being shot with a tranquilizer gun but unmercifully being kept just on the side of being conscious enough that you are completely aware of how much you are suffering. This then is the foundation that all other symptoms are heaped on: strokes, cardiovascular issues, heart rate racing to 200bpm just by standing, heart palpitations, hemorrhaging, micro-clotting, gynecological complications, erectile dysfunction, internal spasming, muscle spasms, cognitive impairment, vestibular impairment, difficulty breathing, damaged lungs, intense body coating pain, nerve damage, consistent migraines, vision impairment, daily fevers, regular vomiting, inflammation of the digestive tract, blood in urine, liver problems, dark urine, insomnia, etc. There are all the losses of the healthy, vibrant lives we were living prior to becoming ill with a disease with little understanding, support and no cures. Added on top of that is the frequent loss of jobs due to being unable to work and still being denied disability and all the resulting ruin from that loss of income. It is such a horrible disease that some have committed suicide to escape the constant terror and pain and many more struggle with suicidal thoughts.

Another misconception that many have is about the vaccine. The vaccine doesn’t help most of us with Long COVID. For many, it causes regression. It took me 4 months after getting the second dose of the vaccine to get close to being back to my pre-vaccine level of symptoms. My kids cannot get vaccinated because they also have Long COVID and even my husband had a very negative response to the vaccine; it took him 3 months to recover. I know people who were “recovered” from Long COVID that got the vaccine and are now worse than ever and walking with a cane. I’m not anti-vaccine at all, but it is not the solution for everyone. Our family, and we are nowhere close to being alone, has absolutely zero protection and we don’t get more immunity from getting sick again–we get more sick.

What I see is that we are collectively not learning how to avoid past mistakes. We are not working toward being a caring, empathetic and responsive society. We are facing, yet again, another situation where those most affected are being erased. Where those least affected have power to dictate policy and messaging in the media. I would never wish what our family has been through on anyone. It’s a nightmare. I do wish though that more people would realize that if you have not been significantly affected by COVID it’s not something you earned. You got lucky. That’s it. I wish more people realized they got lucky and appreciated that. I also wish, and I know I’m not alone in this, that more people had empathy, compassion and were more sensitive towards the many many millions of people who did not get lucky. The pandemic is not over for us, and we don’t know that it ever will be.

Educating ourselves about each other is necessary for a healthy society. Historically, education has only gone one direction. Minorities (of every kind) listen to, understand, are aware of, and learn to navigate the world that the majority is dictating based on the majority’s own preferences. The majority are contributing to an exclusive club and it stems from those who are simply uneducated and unwilling to accommodate anyone with experiences outside of their own. It stems from apathy and ignorance even more than it stems from those proactively attempting to exclude.

This is a manifestation of an undercurrent problem. We’ve seen this kind of unembarrassed and unself-aware privilege and insensitivity when it comes to racism, sexual harassment, sexual abuse, sexism, bigotry, homophobia, physical and cognitive ability discrimination, ageism, etc. There is not enough empathy, sensitivity and social education in the world. Before I got sick, I was really really unaware of what it was like to be physically disabled. I didn’t understand what so many people whose physical and cognitive abilities are different from the majority of the population did know–that the world is excluding them by not intentionally including them. I learned this lesson the hard way: from the inside. My ask to you is that we all be part of creating a world that intentionally includes people by becoming more curious, empathetic, compassionate and understanding of the needs and experiences of others.

• Topics:
• Long Covid