My (Very) Long COVID Experience — Advocacy and Solidarity
If you have a voice, use it.
While in college I identified as an activist more than a student, white man, etc. It was essential for me to make a difference in the wider world — making my friends, family, professors, and colleagues happy was insufficient. (And it would take several more years for me to learn how to make a romantic partner happy — but I digress.)
I was naive: I thought my charisma and intelligence would somehow defeat the forces of reaction and intransigence. Now, well into my 30s, I occasionally crawl out of my comfort zone to get out the vote or promote another worthy cause. But I do it with perspective and humility: If the powers-that-be won’t listen, hey, at least I tried.
I didn’t expect to feel a shred of hope last month — like a shiny gas station appearing out of nowhere when you’re running on empty and don’t know where you are or how you got there. I’ve spent much of the past two years in despair and confusion as a long COVID sufferer — but you should already know that if you’ve gotten this far in the series.
What you may not know is that there are millions of others in the U.S. alone dealing with not only long COVID but also myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I prefer “chronic fatigue syndrome” because it’s helpful to the layman and captures how I feel when I’m at my worst: like a pitiful slug who can hardly think or move regardless of how many hours I slept or how many energy drinks I guzzled. It can last for years and is almost impossible to diagnose or treat.
The hope came in the form of an opportunity to advocate for the needs of people living with ME/CFS and long COVID to Congress (also very much known for its sluggishness). The organization behind the effort — Solve M.E. — recently produced a white paper decrying the shameful status quo on government funding and infrastructure for treating chronic illness and promoting a dedicated research arm at the National Institute of Health (NIH) to rectify the problem.
(Note: If you don’t know what a “white paper” is, it’s a little more complicated than what it sounds like — but you should at least read the summary and tell your elected official that their staff should definitely read it in full. Also, ask them to endorse Senator Bernie Sanders’s long COVID initiative.)
As much as I was sad and horrified to hear the stories of decent, hard-working people losing their jobs, relationships, and overall quality of life, I felt a strong sense of connection and community.
This was also the first time I dared to be vulnerable in front of an elected Republican (along with a few, young staffers from both sides of the aisle). My spiel went something like this:
My name is Matt. I’m 37 and have long COVID— although that’s not an official diagnosis. It started in June 2022 (after a mild case of COVID, when I was fully vaccinated) resulting in a menu of symptoms (none of which I had experienced previously) including shortness of breath, chest tightness, fatigue, brain fog, post-exertional malaise, and constant mucus in my throat. I’ve been to at least seven doctors, urgent care, and the ER. No diagnosis. No explanation for my symptoms or effective treatment and mixed signals about when/if it’ll go away. I have tried countless medications and supplements, along with dietary and lifestyle changes but have found almost no relief.
Even though I’m fortunate enough to work remotely, I left my last job partly because I was too sick to deal with the uncertainty of it — and the job before that I was let go because my boss had no empathy or understanding.
Of course this has taken a toll on my mental health. The pain and stress have been so overwhelming that I have lost the will to live several times. Sometimes I feel like I’m drowning in my own phlegm. If not for my wife, I wouldn’t be here. I’ve gone to online support groups, but it’s hard to find folks with similar stories. I have to constantly remind friends and family what I’m dealing with. (I never really LOOK sick, but I am.)
I think most people are in denial about this silent pandemic. Please support a coordinated solution (at the NIH) to strengthen research and treatment on long COVID, ME/CFS and similar afflictions and do right by those who are suffering.
And this was not even close to the worst story that was shared. I came away from advocacy week feeling like I got off easy somehow — because, hey, at least I am capable of working most days. That’s not the case for most folks I met that week. I can only hope (and fight) for their eventual recovery.
It should always be about recovery: Illness is a condition. It isn’t who they are or who I am. I do not identify with it — and I hope no one else does or should have to. Most of our country’s institutions lack the appropriate vision, motivation, and compassion to deal with complex and thorny issues. This must change. We must demand more for (and from) ourselves and for subsequent generations.
Start by using your voice — if you have one — and be loud as hell.
