Society Is Continuing to Gaslight People With Long COVID and Other Post-Viral Illnesses

Two years.

For nearly two years, it feels like I’ve been gaslit.

I remember in the beginning how much we were told that COVID-19 wouldn’t be that serious, it wouldn’t last that long, it would be akin to the common cold and less severe than the flu. I was already vulnerable being on immunosuppressants and with conditions that compromised my immune system, and it was so disorienting watching as news sources went back and forth on whether we should be concerned or not and what precautions we should take.

By the time it had set in how bad things were going to be, our country’s leaders and major new sources had already been downplaying things for months, creating a culture of carelessness around what would be a global pandemic.

In the summer of 2020, I remember when I first started seeing cases of people with post-viral symptoms after catching COVID. Post-viral illness communities started raising concerns over the possibility of this being a common issue for those who survived COVID, and fears over having thousands of newly disabled people who had no idea what to do and how to adjust to a life they likely weren’t prepared for. I participated in an interview that involved multiple chronically ill people, including other people with myalgic encephalomyelitis, to give advice and resources to people with long COVID to let them know they weren’t alone and that there were multiple communities waiting to support them.

I remember how deep the fear ran, and still does run, that hundreds of thousands of long COVID patients would experience the decades of neglect and abuse that other post-viral illness patients like those of us with M.E. have dealt with. Graded exercise being pushed as the way to recover from M.E. massively deteriorated my condition, and I’m so far away from what my baseline used to be before then. It broke my heart knowing that that was likely what lies in the future.

Now we’re two years in. I’ve listened to people downplay the pandemic, speak as if we’re now beyond in, and gloss over the hundreds of thousands of lives lost unnecessarily and those who survived but with life-changing conditions. I’ve been told that death is unavoidable, that we aren’t responsible for looking out for others, and that “people die every day” from car accidents, cigarettes, etc. as if those deaths are anything compared to a global pandemic that was handled beyond atrociously.

There’s a narrative that’s being constantly spread that we’ve never seen a post-viral illness like long COVID before while LC patients are still being virtually ignored and being treated as if their illness is psychosomatic, much like is being done to people with other post-viral illnesses. COVID is still being framed as if it’s a punishment from the heavens, implying that those who catch it deserve it and that no one who’s morally good is catching it.

Ableds align disability and chronic illness as things you can avoid if you’re a good person who doesn’t make mistakes as a way to avoid recognizing that disability doesn’t discriminate and isn’t reflective of how good a person you are. So many caught COVID from others’ negligence. Most of those who died from it prior to vaccines were people who worked in service positions, or those who relied on the care of multiple people.

There aren’t enough words to describe the amount of frustration I feel watching as the world moves on as if nothing has happened in the past 21 months. I knew no one cared for disabled and immunocompromised people, but this pandemic has set in stone just how disposable we are.

It’s still going and all I can do is foolishly hope that we’ll do better by people with long COVID sooner than what was done to the rest of us.