On Pain & Isolation in the Long COVID Community
How much is too much, and where do we go from here?
(HUGE TW: Eating Disorder, Self-Harm, Bullying, Substance Abuse, Physical Abuse, Mental Health, Relationships)
(Oh - and I swear - a lot)
For those that missed one of the best spaces Twitter has been gifted with in quite some time, on April 4, 2024, the incredible Dara York did a magnificent job of starting a much-needed discussion on pain and isolation in the Long COVID community. As she pointed out, this topic has not been openly discussed by our community for a number of reasons, but I’m going to keep my word to her tonight.
Let’s talk about the pain and isolation that comes with Long COVID. Please know that this reflects only my personal experience.
First, to understand how things feel now, I want to try to explain a little bit about my life before Long COVID.
Hold on tight.
I grew up in a small town. Even before preschool, I knew most of the people in my classes. My friend’s parents were friends before we were born. A lot of us had older siblings around the same age.
Like I said. Small town.
Elementary school was…fine? In the way that things are “fine” if you get told that you fit in, but you don’t really feel like you do.
I got invited to a pretty major 7th grade birthday party with “friends” (read: people/classmates) I’d known since preschool just so they could push me in the pool. I was the only one who didn’t know this was going to happen.
In 11th grade, another student felt it was appropriate to announce that I was seeing a psychiatrist and taking medication. This was not something I’d disclosed.
A few weeks into 12th grade, I was left trying to figure out how 10 years of time and sweat equity put into a music program - 3 of those as a drum major - were somehow worthless. I quit band and walked off campus - the first and only time I ditched any part of a school day. Leadership positions selected solely on the basis of popularity (and who is fucking who) never have, and never will make sense to me.
I didn’t finish college because I went to inpatient eating disorder treatment. More than once. Sometimes it doesn’t stick. I won’t lie - I was a shitty patient. I pulled out IVs, exercised in my room, refused to eat, checked myself out AMA more than once (and once in another state). Ever had to write your own obituary? Pretty fucked, huh?
I shouldn’t be alive. BUT I AM.
I’ve torn muscles onstage and kept dancing. After all, the show must go on.
Just a little stress fracture? We all get them, right? (Right?)
My shoulder grinds in a way that you can hear across a room.
I have a dent in my shin from smashing it into a balance beam.
Acrobatic dance intensives in 100+ degrees with kidney stones for days before I went to the hospital.
Long-faded bruises from ankle to hip, ribs, sternum.
Not-faded scars down my spine from marley burns, a single metal burn.
Physical therapy for this, that, the other thing. Rinse, repeat. Missed geometry once a week.
Anyone else own a Theragun? Foam roller? Magic circle? Acupressure balls? I could open a gym…
And the list goes on and on.
Good idea? Absolutely not.
Stranger to pain? Also no.
I got married a few months after I turned 21. I hesitated, but I chalked it up to anxiety and said “I do.” I should’ve known better. He was an abusive, alcoholic sailor who needed to grow up. We were married less than 6 years.
I met my most recent ex the night before I signed my divorce papers. We dated long-distance for 2 years before we moved in together. Truth be told, if the trees hadn’t fallen on my house then we probably wouldn’t have moved in together when we did. I moved to Texas and then we moved to NYC. He brought home COVID a few weeks after we moved to NYC. Merry Christmas! Ho, Ho, Hooooly shiiiit…it sucked. Who really needs friends when you have Long COVID? He was physically fine, had work, friends, and emotionally…well he had alcohol, and he had me to take it out on. Eventually, that got physical, too, and then I kicked him out. To be fair, I wasn’t working for most of that time, we didn’t communicate well (he didn’t communicate at all)…you know.
Life happened.
Now the pain management stuff.
I haven’t self-harmed in 5 years, and I haven’t had a drink in just over 4 years. I know that many in the community aren’t able to tolerate alcohol. I won’t say I never used alcohol as a coping tool. I did. It wasn’t a good one. I didn’t drink until I was 21 and I haven’t had a drink since before I turned 28, but damn, I drank a whole lifetime in between.
Don’t do that shit. It isn’t worth it. You’ll still be pain.
I also tried CBD + THC for sleep after a series of horribly painful reproductive experiences in mid-late 2019 and early 2020. I metabolize things quickly, and I have a ridiculous tolerance. I was able to take 3-4x any recommended dose, not feel high, and still be in some pain. I stopped taking anything the same time I stopped drinking.
I choose my sobriety, safety, and sanity EVERY SINGLE DAY.
I don’t ingest anything for pain management other than Tylenol. I can’t take Ibuprofen because my stomach is wrecked, or other NSAIDS because I bleed too easily. (Yes, I’ve tried other things. No, I don’t want suggestions.)
If I’m conscious, I’m going to feel like someone shoved a white-hot fireplace poker deep down into my joints. I don’t know how to get any more flat on the floor, but it’s quite often painful to not be able to get more…flat…when the fatigue hits hard. Anyone else have that? A weighted blanket feels good, and also hurts like fucking hell. Oh - I have misophonia, so I can hear most of this. I’d really prefer not to have that. I’ve had visual snow my whole life and I can hear that, too. It clashes with the tinnitus, too. On a bad day, all the sounds compete, like echoes of kids screaming in a cheap church hall.
I use, among other things:
OTC Lidocaine cream + Blue Emu
Lidocaine patches
Icy Hot
Tiger Balm
Magnesium cream (also comes in a spray)
Biofreeze
Arnica
TENS machine
Theragun
KT tape/CureTape
Ice packs
Homemade “gel” ice pack - Freeze 2 cups H2O : 1 cup 70% rubbing alcohol in Quart or Gallon freezer bag. Double bag!
Frozen peas, diced mixed veg, corn, etc
Headache-style freezable wrap (these come in larger sizes for back, hips, shoulders. Keep in the fridge so it’s soft!)
Heating pad
Acupressure/acupressure ball
Washcloth soaked in warm H20 + epsom salts
…and when all else fails, I cry until I’m tired enough to pass out again or I sit in an ice cold shower until I black out.
I’m prepared for the pain. Like I said, I’m not a stranger to it. Nor to pain management. Nor to isolation.
Dialectical Behavioral Therapy has been a life-saver (for me) and 75% of the time I can handle being completely isolated and unable to leave my home. The other 25% of the time…I try to be occupied with a hobby, positively engaged in the Long COVID community, or working on some sort of advocacy, resource distribution, or organizing - even when my energy is limited. I’d rather spend my time helping someone a little, not hurting myself a lot.
That being said, I am, admittedly, becoming less okay with living alone as time wears on. I have lived alone for very little of my life. I’ve either lived with family or a partner. I don’t sleep well by myself. I can, but I don’t like it. It’s not comfortable and it doesn’t feel safe.
More than anything else, I’m terrified that my carefully tailored, stable regimen of meds - a product of 16ish yrs of fine-tuning - will no longer work. I metabolize things quickly, utilize extended release wherever possible, have made periodic increases since my first infection to remain stable, and with each reinfection, the risk that I’ll need to change meds entirely grows.
That will be my limit.
I can’t go back to the fighting things that my brain wanted me to believe were real life. I sure as hell don’t have the energy to do it alone, I don’t have anyone in my life now that knows me well enough to go through it with me, and I won’t subject my family to that person ever again. Hypoxia, vomiting blood, clots, a new arrhythmia…that’s small stuff now compared to the idea of going back to not knowing if I’m ever going to sleep again. The brief period of depersonalization and derealization I had during my first acute COVID infection was nothing next to what I went through before I was on stable meds. I spent years watching myself exist and I thought everyone lived like that. I switched meds a few years back and it just…stopped. I sleep now.
I feel like a person.
Lastly, community.
Doxxing, lying, hit lists, rumors, slander, cyberbullying, harassment, trolling, false accusations, and targeted campaigns against ANYONE in the Long COVID/ME/CFS or any other chronic illness or disability community - end it. Right now.
The world is hard enough as it is.
We are ALL fucking struggling, we are ALL fucking sick. You don’t get to make shitty choices and attack people and then pretend that you did it because you’re so, oh so sick.
Grow the fuck up.
We ALL have Long COVID. That’s the goddamn point. That’s how we got HERE.
I have always believed that nothing is impossible if you want it badly enough. It might be uncomfortable and people might not understand your decisions, but that doesn’t make your path wrong. None of that means stabbing each other in the back and leaving a trail of broken community members in your wake.
We do not get through this intense pain and isolation being felt by so many in the Long COVID community by creating more pain and isolation.
We do it by finding more opportunities for connection and discussion. We do it by working together, against those trying to silence and further isolate us. Every day counts and fighting each other wastes valuable time.
Someone told me a couple months back that the people I was about to meet in a Long COVID group wouldn’t be fair weather friends. They’re more like family now. I’m alone at home, but I have the online Long COVID community.
Like so, so many others - MILLIONS OF OTHERS - I am in pain every second of every day, and no one in a position to do anything gives a fuck about that. I am going to make myself heard. I no longer care what people might say about that. I made it through 10 years straight in abusive relationships. A pair of trees fell on my house a year into the pandemic. I don’t drink, use substances, or self-harm anymore. I still don’t have access to medical care here in NYC. I don’t get benefits from the government. I’m fighting eviction without representation. My parents went BANKRUPT to save my life when I was 19.
I have survived too much, and too many people have given too much for me to accept that I am just supposed to fall by the wayside.
I’LL BE DAMNED IF I’M GOING TO LET LONG COVID FUCKING KILL ME. I DO NOT HAVE THE TIME OR TOLERANCE FOR GAMES. Either get on board with that, or GET THE FUCK OUT OF THE WAY.