i haven't talked or shared a lot about what my experience having covid was like for various reasons. most people don't really seem to care or don't understand, and i get that. maybe it’s too hard to talk about. and i totally get that. but i think recently, hearing more and more people say that they don't want to get the vaccine because they fear feeling the side effects is a pretty tough one for me.

don’t get me wrong, i know that everyone is coming from different places when it comes to medical treatment in this country. i’m not trying to dismiss that. but, i had covid almost a year ago now, and i am still dealing with the long term effects of it in various ways. there’s the fatigue, and i’m not just talking about the kind that comes from the depression, or from having an autoimmune disease, but the kind where my muscles feel like they’ve been shredded and have never quite recovered.. the kind that makes exercise of any kind for more than 20 minutes still feel like a marathon kind of fatigue. and then there’s the loss of hair. a weird one but a common one. and i already had thin hair. there’s the sweating when it doesn’t make sense because my body temperature is all out of wack. and, for several months now, there’s the strange icepick headaches, which yes, feel just as intense as they sound. so yea, i have a hard time with that one.

if i’m being completely honest, what i want to tell these people is that what they should be worried about is actually getting covid; worried that if they do get it, they won’t know what version of it they’ll get or how severe or mild it will be, or how even if they don’t DIE from it or end up going to the hospital, that even if they do recover from it, that it could effect their lives and bodies for months or years to come. i want to tell them that the horror of having it, whether a ‘mild’ case or worse, is, i guarantee, much much worse than the one or two days they might experience feeling ‘bad’ after getting the vaccine. 

i’ve been to the doctor multiple times since having had covid to try to figure out the ways in which covid wrecked my autonomic nervous system, among other things. what i’ve learned is that i’m not the only one experiencing these things. there’s a strange shame around having had covid. and when i had it, i felt like a discarded leper in a lot of ways haha. there’s this judgement that comes from a lot of people. like i must have been somehow irresponsible or selfish to be somewhere and have caught it. but i did everything i was supposed to do. i stayed home. i wore a mask. i stayed home from work longer than my coworkers, because having an autoimmune disease made me more susceptible to getting sick. i didn’t hang out with my brothers that live nearby for over a month, and when we did start hanging out we were always outside and wore masks most the time. i went to the grocery store only when needed. and then i went back to work. i was back a little over a month and got it somehow. it could have been a trip to the grocery store. it could have been a customer. it could have been a coworker who didn’t even know they had it. no one else i’d been in close contact with ended up getting it from me, thank god. 

i haven’t talked much about that whole experience to many people because honestly, it was pretty traumatic. and also, people don’t really seem to know how to talk about it most times. so there’s also a level of isolation that comes with having had it. according to most cases, you could say mine was ‘mild’. i put mild in quotes because even a more ‘mild’ case can still be hellish. initially i just felt like i had allergies, or a cold. i was congested and had a slightly sore throat. then i started feeling tired and out of it. i couldn’t concentrate easily. i knew i was sick, but i just brushed it off because that is what we are conditioned to do, we work through sickness. and then i lost my taste and smell. i’m talking not a single thing could be tasted or smelled. i went around my entire apartment smelling things and eating things just to make sure i wasn’t out of my mind. i wasn’t. it was totally gone. this lasted for a little over a week. that alone was a huge mind fuck. i lost over 10 lbs in a few weeks because eating became joyless and pointless to me.. i couldn’t taste anything so who cared? but mostly, it took too much energy to even do something as simple as eating. changing clothes was too hard. taking a shower felt like running a marathon. i’ve never run a marathon, but you know when you see those runners near the end of the race that just collapse because their limbs have just had it and their body just essentially shuts down and stops working? that’s how i felt after taking a shower or walking across the living room. just breathing was exhausting. there was one day i remember very vividly.. i had managed to get out of bed and barely made it through taking a shower before i felt like i was going to collapse. this sounds dramatic, but it is not an exaggeration. i laid down on the couch and stayed there all day. when i tried, trying to lift my arms and legs felt nearly impossible. they felt like they weighed a thousand pounds each. my muscles felt like they’d been pulverized and weakened to the point that i didn’t know if i could literally walk across the room without passing out or falling. this brought on a moment of panic.. a moment where i thought i might need to call for help because i didn’t know if i’d literally be able to get myself up off the couch to take care of myself.. if i’d be able to get up and eat; go to the bathroom; or make it back to my bed five feet away. this was probably the peak of my worst week. of course i didn’t ask for help. i didn’t want to worry anyone. which now i realize is ridiculous. i also live alone. i had no one but myself each day to wake up to and assess how good or bad i was doing, and eventually that just turned into getting through that particular day. that was the worst day i had. at least physically. eventually, i got to the point where i could get up and move a little easier. i had groceries delivered every week. i took my temperature multiple times an hour, almost obsessively, just waiting for some strand of hope, some sign that covid had left me.. but for a straight month it stayed. a whole month and i had a fever every day. 

but i think what was even more difficult than the actual physical symptoms, was how psychologically tormenting it was. when i first learned i was officially positive i remember driving home and just having a complete melt down. i cried and literally screamed out loud in my car. i punched my steering wheel like people in the movies do when they’ve just learned the most terrible news about something. what version did i have? was it going to be bad? was i going to wake up and not be able to breathe? was i going to have to go to the hospital? was i going to be able to make it living alone and having no one to help me? could i call for help before it was too late? was having an autoimmune disease going to make it worse for me? i became obsessed with reading articles about other people’s experiences with it. these were mostly terrifying accounts. i read probably every single scientific article ever published on the matter, and i was always convinced after doing so that i was going to die.. either soon, or eventually from the after effects of it. if it didn’t kill me now it’d certainly manifest later in some other fashion.. a stroke. a brain issue. heart failure. lung damage. you name it, it was possible.

i had numerous days and nights where panic attacks would derail me so intensely that i’d have to call my family or closest friends to help me not want to throw myself into the ocean.. not that i had the energy to do so anyway. the mere thought that i had no idea when this was ever going to end, if i’d start to feel better or if i’d get worse, or just what to expect each passing day, sent me into some of the darkest places my mind has ever gone.

being completely by myself certainly didn’t help any of this. humans aren’t meant to be alone for that long. a month in total and complete isolation can really do a number on a person. no physical human contact for over a month. nothing. some days i just couldn’t bear it. it all felt like too much. all of it.. the physical, the psychological, and the emotional parts of it. all of the human parts of it. and that was just me processing my own experience of it all. 

it made me realize just how tragic this pandemic was becoming, and sadly still has been, for so many; how unbearable a thought is was to think about dying alone.. how unbearable it would be to not get to hold or touch or feel the loved one you were losing in their final moments. how utterly painful it all was, and still is. 

in a way, covid has changed me forever. i’m not trying to be overly dramatic, but i see life a little different now. the little stuff doesn’t bother me quite as much. i don’t take things so personally. i wake up every day and say thank you to the universe that i am alive and that i can feel and see and exist in all of the ways that i do. the time i have with my family in person hits a little different. it’s all a little bit more beautiful and meaningful. i pay attention to my body more closely. i trust it and i tend to it more readily. i let it feel all of the pleasure and the grief and the goodness and the warmth it can while i’m still here residing in it.. i realize that we all have such wildly unique experiences of this life and that we all carry multitudes in which most people won’t ever understand.

almost a year later, i’m still going to doctors and post-covid trial studies to try to figure out why my body is doing the abnormal things that it is doing. i’ve been referred to neurologists and endocrinologists and physical therapists. i don’t talk about it a lot, but it is still hard. i still get anxious about my body doing things i don’t understand or that i know i can’t fix. my mind still goes to all of those worst case scenario’s that i conjured up when i had it. but i just keep getting up every day and going to work and acting like none of this is going on because that is what we do. and i have accepted that this is always going to feel isolating and that most people won’t ever really get it. i’m thankful for my therapist in this way. but going to the doctor the other day and having her acknowledge that i am not the only one going thru these things, that the same things are happening to other people, made me feel somehow more ok. 

to anyone who has lost a loved one to covid, and to anyone still grieving that loss; to anyone who has had covid, and to anyone who is still dealing with the long term effects of having had it; and to those who didn’t have it but know or lost someone who has, whose lives have been effected and changed by covid in any way, which really, is all of us.. i love you. there are others out there feeling the same pains. feel it. keep going. we got this.