What I Want You To Know About Long COVID

What I Want You To Know About Long COVID

Well lads, I've been suffering from Long COVID for over a year now. My life is at a complete standstill. I'm 25 years old and I'm too sick to go back to school, I can't work, I had to move back in with my parents and I'm still stuck here.

Here are just a few things I wish people knew about Long COVID, including things I didn't know myself until I got it.

COVID destroys your immune system. Yes, even if you don't have Long COVID. Are you getting sick more often now? When you get sick, does it last longer? There are many studies showing that COVID causes t cell depletion, even in mild COVID cases! T cells are how your body remembers how to fight off infections you've had before so losing those cells? Bad news.

Your initial infection can be mild and you can still get Long COVID. Right from Yale Medicine, "Most people with Long COVID had mild acute COVID." (This is also a good link for a basic Long COVID overview).

There can be a gap of time between when you "get better" from the initial COVID infection to the onset of Long COVID symptoms. Some people get sick with an initial COVID infection and never get better. Some get better and then weeks or months later start developing Long COVID symptoms. Long COVID symptoms can even fluctuate over time, can go away for months and then suddenly come back.

So many people have Long COVID and don't realize it. Do you feel more tired lately but no matter how much you sleep, nothing helps? Is it harder to concentrate at work or school? Can you just not think like you used to? You could have Long COVID and not even know it. Even mild post-COVID symptoms are still Long COVID.

COVID can do anything to your body. Long COVID has over 200 recognized symptoms and can affect basically any part or system of your body. There is no one mechanism or cause of Long COVID which unfortunately also means there's no one cure either.

The effects of COVID are cumulative. Each COVID reinfection increases your chances of developing Long COVID. COVID is also affecting your body in other ways, yes, even if you're otherwise young and healthy! "Repeat COVID-19 infections increase risk of organ failure, death".

Once you have Long COVID, repeat COVID infections will make your symptoms worse. "80% [of Long COVID patients] saw their symptoms worsen [from reinfection]. In 60% of people who were in recovery or remission from Long COVID, reinfection caused a recurrence of Long COVID."

There is a lot more I want to say about Long COVID but I want to keep this post at least somewhat manageable to read. Like how when COVID is contracted during pregnancy, those COVID-exposed fetuses have a 6.3-fold increased risk of motor developmental delays, or that another study found 50% of babies exposed to COVID in utero had developmental delays.

You need to keep caring about COVID, for others around you and also for yourself even if you're "healthy". Everyone is at risk. And don't forget 40-60% of COVID infections are asymptomatic, which is why masking even if you feel fine is crucial. The only way right now to not get Long COVID is to not get COVID in the first place. It's not too late, if you've stopped masking it's never too late to start again! I know it's easy to get distracted by things in your life that seem more real than the possibility of getting sick some time in the future, and the peer pressure to not mask can be intense. But it only feels less real or less important until your entire life is having Long COVID. Trust me.

I know this is a complicated issue, many people can't afford to stay home when sick even if they want to because of their jobs, there are disgusting policies trying to ban wearing masks, but please if you can. Keep masking. Masking works, masking saves lives.

This post got a bit longer than I wanted so below the cut is a non-exhaustive list of my Long COVID symptoms and some of my experiences as one of the "healthy young people" who got "unlucky". cw brief mention of suicidal ideation.

Welcome to the Thunderdome that is my body with Long COVID. Keep in mind these are just my experiences and symptoms, Long COVID can cause any range of symptoms at varying severities.

Dysautonomia: Exercise intolerance, Post-Exertional Malaise (PEM), fatigue, and heat intolerance. What do those things mean? Here's some specific examples. Absolutely terrible circulation I am so cold all the time but also, if I get a little too warm I will pass out. Eating hot food makes my heart rate spike, I sweat, my body feels heavy. Blood pooling and pins and needles in my feet when I walk. Don't even think about exercising past walking, it's impossible. I used to work out an hour a day 4 times a week and now walking up one flight of stairs makes my heart pound and I can't breathe. Can't take even just warm showers anymore or I will pass out. Heat rashes from being in the sun for 10 minutes.

Digestive issues: Honestly too many to name but: constant bloating, extreme nausea, constipation, slow motility, lack of appetite, just so much cramping and pain. I lost 18 pounds from Long COVID, as someone who was already considered underweight their entire life, and almost had to get a shunt put into my chest to deliver nutrients because I was nearly completely unable to eat. For the first 6 months of Long COVID, if I could manage 600 calories a day, that was a good day.

Histamine intolerance: Oh boy. My worst symptoms, I don't even know where to start with it. If you know Mast Cell Activation Syndrome (MCAS) it's very similar. I can only eat 19 foods. If i eat a single bite of something not on that list, it's 48 hours of absolute hell. Coughing, migraines, itchy eyes, such extreme nausea I cannot even describe it, panic/feeling of doom, racing heart rate, derealization, rash, uncontrollable muscle tremors. I only learned about histamine intolerance 5 months into having Long COVID so before that, I was experiencing these symptoms nearly every single day. Terrifying isn't even a strong enough word to describe how it felt to experience all this and have no idea what it was, how to stop it, or if it would ever stop. Really dark times.

Neurological issues: More of that derealization. Inability to concentrate. Anxiety. OCD-like symptoms such as thoughts getting "stuck" in my head, repeating 24/7 completely unable to stop them, genuinely felt like my brain had cracked open and I had lost my mind. Constant dizziness like I'm on a boat.

Sleep issues: I sleep like garbage. I have insomnia, I wake up dozens of times every night and every single time I sleep I have intensely vivid dreams. I can't sleep longer than 7 hours total no matter how exhausted I am. It is exhausting. I'm exhausted, I'm so so tired.

And finally. Just. Really intense suicidal ideation. My body, my health, my entire life has been stolen from me because someone else decided my life was worth less to them than wearing a mask or staying home if they feel sick. Before I got Long COVID, I was preparing to go to South Korea to teach English, then on to a PhD in neurolinguistics, I was supposed to meet my long distance partner and had already booked plane tickets when I got sick. All of that has been destroyed.

Most of us with Long COVID are stuck in a cycle of being extremely sick, then if you're lucky you'll slowly get better over months, just to get reinfected and go right back where you started or worse. Honestly, I'm not scared of dying from COVID. I'm scared of living for a long time, suffering from Long COVID the entire time. This isn't living.

I don't know how to end this now. I'm still fighting, I'm trying experimental treatments, I'm not giving up yet. I hope everyone reading this stays healthy and well.