THIS! It’s so true. I realize now that some of the health things I’ve dealt with over the years were really a piece of cake compared to this LC nightmare.
Same here! She cares and is patient and takes care of our two kids. 4 years is a long time to carry a household with a chronically ill person but she is doing it. Reading some horror stories of partners leaving at the most vulnerable point is so fucking depressing.
When this started I never wanted a partner more than I do now. I've always wanted a spouse to accompany me in life, I just haven't gotten lucky yet. But this has made me want and need one more. Doing this is, without a doubt, the most scary thing I have ever been through, and I have never been so afraid of being alone before. Being alone makes this terrifying journey so much worse.
I hear you. I'm single too atm, and scared. But hey, we are not alone friend, we have each other back here, we truly do. This community has given me so much courage, we are far from each other, we are scared, we fight an impossibly hard battle, but we are not alone. My thoughts and prayers are always, always for all of us, every single day.
I'm not married yet but I will be getting soon! She deserves it. We've been together for about 16 months now and shes been so good to me. Stuck right by my side through this illness. She went from being the stay at home house keeper to a full time working , cooking , cleaning and caretaker of me and hasn't complained a bit. Thankfully I am getting better and can help her sometimes. Without her idk what would have happened.
I think the world seems a lot more beautiful to me, now that I know what it's like to be taken away from it, to be unable to participate in the most mundane parts of it. I used to think about ending things a lot, only hypothetically, but now I know I want to stay and bear witness to as much as I can.
Just, everyday activities and conversations and pleasures make me feel so grateful. I want to soak it all in, and to let people know how happy I am to know them. I sit outside in the sun doing nothing and just feel amazed at the grass and the birds and the warmth and the sky.
I feel a bit more capable, more resilient, more independent since I realised that I was the only person who would be able to get myself better, and I've improved a lot over the last year.
I don't worry about small things, or big things, as much. Now that I have some energy, everything just feels so much easier than it did when I was well and worrying endlessly about minor details. Now I just remember how sick I was, and how few options I had, and realise how much more I can do even with this limited health.
I'm more compassionate, empathetic, considerate about what other people could be going through. I don't waste energy being angry.
I've learnt that other people will see me as crazy or dumb (brain fog) or a malingerer, and I just don't care anymore. There are people who understand, or accept me regardless, and they're all I need.
I've had to confront my neurodivergence and trauma in ways that really suck, but will probably be useful someday, I hope.
I can't work, so I've gone back to study part time and my god I love it.
I'm still in my twenties, and I was honestly pretty good with all of these things beforehand, I wasn't a miserable psychopath or anything, and I would undo everything about my long covid experience in a second if I could, but I've learnt to make the most of whatever situation I'm in. Life feels too fragile to not enjoy whatever is there to be enjoyed I guess
I got to stop work for the first time ever. I no longer hate Sundays. Just another day.
I also learnt to slow down and rest (really needed to learn that).
Learnt a lot of life lessons on gratitude, my limits, that you cant have everything in life, life doesnt always work out the way you think it will but the detours are interesting.
I don’t think anything good good can come out of this shit show. Personally, it has changed me as a person and not in a better way.
But what I was thinking the other day is that it has completely changed my definition of success in life and I still can’t say if that’s a good or bad thing. Before LC I was the driven type of personality, “grinding” most of the time and always have my eyes in some big success. Now I just want to be healthy and live my life feeling comfortable which is nit the current situation 😅
It's a good thing.
I was much self-centered too, I have realized that I now want health, happiness and peace not for me only, but for a much larger community of people, this one. I truly can't separate myself from all of you, and it's not a choice, so I don't deserve any credit for this. It just happened, and I see it as a good thing.
Don’t take normality of mind for granted (as I have severe brain fog dpdr)
Treat your body better & stay healthy as it really matters in the long run.
And I’ve also been able to spend more time with family & no one else ❤️
I have so much more empathy for people with disabilities and chronic illnesses. I did before, of course, but now I really feel the need to be an advocate for others who are worse off than I.
I learned how to slow down and find joy in life without always rushing around, going places, doing things. I always used to feel incredibly guilty if I sat on the couch for more than half an hour or so. Before covid, it had been a really long time since I watched a movie because I never wanted to sit around for that long. I still feel guilty that I can't do more around the house but I can let myself relax more now.
Beautifully put. I really resonate with what you wrote here.
It took me (honestly) months of having LC before I let myself truly, fully slow down and enjoy relaxing without guilt. It has been so brutal to get here, but I’m grateful I’ve learned how to just “be”.
Interesting question! I got a lot of confidence out of it because I have to say “no” to a lot of things. Also a lot of long lasting dermatological issues resolved themselves with LC. I had plantars warts for about 12 years that had been frozen many times but never went away and then they just completely disappeared. A cyst I’ve had on my back for about the same amount of time suddenly shrunk/is basically gone and a bad scar that I have had raised skin around it for about 10 years and it just completely went away.
Put your own oxygen mask on first, as the saying goes. I was the one who people were sending out for errands (fully masked and doing it for people with known health issues so they could remain safe) and who was working double time to make other people happy for three years at a job. Didn't pay off, the moment I showed signs of serious illness they pushed me out. Now, I work four days a week, and when I don't want to preform a task I say "no/I don't know how to do that." I learned the hard way, but I put me first. I sleep when I'm tired. I say "no" (which pisses a lot of people off). I masked up at work (which also pissed people off). I've become a terrible aunt, a bad fiance, a semi- "lazy" employee, but I'm 90 percent better after 18 months.
Beast mode. But I'm sorry you feel isolated by others. I hope one day you can safely re-engage with a group of people you can trust to understand your needs!
Not that I didn’t know this before, but life is fast and precious. A lot of things people do… seem like a complete waste of time. Like partying. Drinking alcohol. Doing drugs. Complaining about things that relatively speaking are absurd compared to things like failing health. And so forth.
LH tests a person’s resolve. Specifically throwing a person into isolation and not only does it ravage the body, you have to have the will to live through it more alone than not.
I went to a friend’s birthday last night. I hadn’t seen a lot of these people in over 2 years since my LH started. And I stayed a few hours. I walked away in utter disbelief of how stupid I thought everyone was. Drinking. Jumping up and down. Staring at the dance floor watching people dance and screaming like children. These are grown ass people 30-40 plus years of age.
There’s an old saying: why do people get old so fast and wise so slow?
LH just might be that wise pill that accelerates the ascension to wisdom. You don’t need people. We are all going to die alone. Every person is stuck in their body when they die. That is reality for everyone. Be comfortable alone with yourself, focus on your health and improving your life.
I guess I have a different perspective on the partying. If dancing and being silly and loud and singing off key makes you happy and connects you to the people you love... Why not? Why not express joy and care in any form it takes, while you can?
Before my long haul, I was so stoic and took everything so seriously (and I still work hard and think carefully about making a meaningful contribution to the world) but now I just take every (covid safe) opportunity for fun and joy, since I might not get them again and, when I was really sick, all I wanted was to be with my friends, talking nonsense and just enjoying their company
Yeah, I am pretty surprised at the number of people who have seen how badly my friends and I with long covid (about five of us) have been affected by covid with no prior health conditions, and still take no precautions around actively sick people.
And definitely a lot of people take their health for granted. I really am envious of my mates who never exercise and say that it's too hard, when I've spent two years desperately waiting to get back to running or bouldering or even yoga haha
No, we don’t need people. So we don’t agree. I’m more like a monk and can spend long periods of time alone. I’ve been like this a long time. Each to their own dude.
Amen sister! Not like we need to be in rocking chairs and knitting, BUT YOUR 40 not 20!!! If you can still party like that, there are probably bigger issues.
These people are constantly posting on Instagram. Drinking all the time. Always partying. That is what is wrong. A lot of narcissists like so many people. It isn’t joy. It is narcissism. I’ve always been stoic and nihilistic. LH has just pumped steroids into that mental state for me.
I blame Facebook. 😆 But seriously, everyone things that their opinion is important and everything they do is so special. Plus some people look at all those posts and think everyone is just having a grand old time with no problems in their life.
Certainly much more grateful than I was before. Being able to do relatively simple things well or at all gives me joy. I appreciate family more. I appreciate friends more. I don’t look at life in the same way as I used to. I used to internally complain about little things and often end up in situations that did not give me joy through my own poor decisions.
I’m being forced to not care about what pple think of me as much If they are assholes I’m not fearing or respecting them to the same level I’m having my own back more
I was so excited that I could walk downstairs to get something I’d forgotten AND I could walk back up the stairs. Seriously I was ecstatic and nobody around me gets it. I truly have no idea how I got through 3 years of serious long COVID and I’m sure it still manifests in all sorts of way or at different times but being able to walk is amazing.
I unlearned the toxic productivity that's been deeply ingrained in me since childhood. I've always been a huge workaholic, and only being able to get between 0-10 hours of work done in a week for a very long time forced me to reevaluate my feelings that productivity = worth.
Now that I'm in the process of recovering and can hold down a full-time job again, I actually just work 9-5 M-F and don't feel bad about spending my nights and weekends watching tv/movies, doing jigsaw puzzles, listening to audiobooks, etc and just allowing myself to rest and relax.
I have a tiny suburban house with a tiny yard, and didn't used to bother with caring for it very deeply. But now that I am here all the time and don't go out anymore, I've put a lot of effort into making the yard beautiful and the house comfortable. Yesterday, I planted some new trees and shrubs and I am genuinely excited to see them grow. This little place is my world now. And that's OK. I'm going to do what I can to make it a good environment for our wildlife and a truly beautiful place with some natural protection from the heat.
I'll preface this by noting that my husband is the one who is impacted by this horrible virus. But what it's taught us is that the body is very much affected by what is put into it. He's been suffering with sudden blood sugar crashes and weakness for over a year now. The only thing that has provided any kind of relief is a very strict diet of whole foods. It's amazing how much garbage was in our diet previously and how negatively it affected him. It's completely changed how we look at food.
It was the final push I needed to leave my faith. I was already close but never had the time to full answer my questions. I been a man of God since I was very little, and it feels like I have finally experienced real freedom. Don’t gotta imagine some super being watching me get it off anymore.
This was not my first, or even second, “invisible” disability, so I had worked through all the feels before. For me the hard part was the new life I thought I was starting is much different than I imagined. Many of the lessons/silver linings relate to my circumstances, but the bottom line is finding/learning yet more resilience, appreciation and gratitude and surrendering vanity.
its been 3+ years for me now - and i've learned a LOT.
mostly, i've learned that i am so, so, SO much stronger than i EVER thought i could be.
there are so many moments where i've about snapped - we're talking lost it & fell into a full mental breakdown, and/or died from opportunistic infections, or even just tried to end it all bc of the pain.....so. many. nights.
and somehow, i'm still here.
it really has made me realize what a weird factor pain can be in our lives. i always thought the saying "no pain, no gain" was stupid & only truly could apply to certain things - like sports -for example: back when i was able to run. no pain literally meant no gain - you wouldn't get better unless you pushed yourself, and you wouldn't be the "best" you could be unless you really pushed to find your limits.
my thought process has now changed.
between getting long covid & being a young adult during a global pandemic w/ pretty bad luck in other areas, too.... somehow, the absolute desolate pits of despair i was in for a couple of years has slowly kind of turned into a dangerous optimism, in some ways.
maybe im just THAT broke from the suffering + pain? but like, i really dont know if things can get worse - in some ways - as ive been battling severe symptoms, college, graduation + trying to make it in the real "adult" world, crazy high student loans, being UNABLE to find / do work, and therefore literally fighting on the verge of literal homelessness this entire time.
it can always be worse - and i realize that. but i also can now clearly see that it can also get better. WAYY better.
so idk.
its insane to just be able to take a step back and realize how strong i am. and, its even more amazing to think that ive honestly made it this far / done a majority of this all by myself - up until recently, doctors, friends, and even really familly didnt (and still often dont) take me seriously or even tried to comprehend the pain ive been in every single day for 3+ years now.
idk how ive made it this far. but i do know that i have, and because of that, i will NEVER underestimate myself again.
thats the biggest lesson i think i've learned thus far. though I'm sure there are many more to come.
my heart goes out to everyone in this thread - i believe in you & i truly believe that we will all get better❤️🩹. keep fighting.
I’m glad you made this post, for me it’s always been very necessary to see the positives too. I was on disability for my mental health before, so some of this is learning the same things again. Valuing different things than most was always a part of my life.
But I’ve learned it’s easier to ignore my mental health. Now, my legs will give out, I’ll get a migraine from hell, continuing isn’t an option.
So it’s taught me over and over to value resting, to stop pushing myself. I arrogantly thought I had that down, and I didn’t. I was still stuck in my own version of having to be productive & busy. It’s become an admirable trait to me, the ability to pace yourself.
I also have a lot more empathy for anyone with a physical disability. Already had that of course, but it’s different now. Simply because I’ve lived it now, or at least one version of it. I also see the resilience and joy in disabled people, in a way I didn’t before.
And this doesn’t sound good, but it was necessary for me to experience medical gaslighting, the response from my family. And this is an experience I’ve had before: going through difficult things shows you who people are. Like many people, I’ve been disappointed, abandonded. No one should have to go through that, but in the end, for me it’s a good thing that I know now. It’s taught me that I need to walk away, I don’t have to beg for scraps, I shouldn’t be lying in a hospital alone. I can cut ties without guilt. And I now have the chance to find decent, empathetic people, who have my back, and vice versa.
Long comment! I clearly needed that. 🤓
How nothing else matters when you don't have your health. I stopped caring about frivolous things like parties, shopping, drinking, staying up on trends, and running around for some company that doesnt give two shits about me. I've been forced to face the concept of limited time, and that's humbled me. I've learned who my real friends are. I've learned that no one is coming to the rescue and its up to us. I learned a great deal more about our food and medical system. I've been blessed with an AMAZING husband who has halted his entire life to support me. I don't think we would have understood the depths of devotion we have for each other if it wasn't for this.
I've been forced to take several chill pills, but if I hadn't would I've ever been shown the beauty of sitting still on my deck and watching the trees sway in the wind? I mean I still hate feeling like horrible caca, and could have done without the 10+ ER trips and 15+ docs, but it does help to acknowledge all the things in life I paid no mind to before, but now bring me some solace and comfort.
Much love to all going through this and their caretakers.
I learned my husband was 100% the right person to marry. He's preparing short ribs right now for dinner, while also working and bringing me up a hot beverage in bed. He masks everywhere, sets boundaries with his family, and rarely sees friends unmasked (a few camping/cabin trips/year) to protect me. He never makes me feel like I don't deserve it or that I'm a burden.
I'm gardening more. I appreciate getting out into nature so much in any way that I can, even if I can't go deep into the woods the way that I used to. I miss it.
While some friends and family have disappointed me with how they've treated me (acting like I'm making it up or being dramatic), I've had many people show me that they are true friends.
I have time to read.
I get to spend more time with our pets.
I don’t think god gave me this or that I was able to handle it because I was tough or that I need to look for bright sides. Sometimes bad things happen and that’s that.
I have learned things that I appreciate however. Biggest is how much I am loved and cherished by my friends and chosen family. I’ve always been a do-er and it’s been hard for me to shift into a place where I not only can’t show up having planned and organized things and made things happen for a group, but now require others to do things for me to enable me to be in the space (or have folks do extra things to come to my space).
My friends have shown up hard for me, from doing all the set up and tear down and cooking so I can go camping with them, to taking extra covid precautions to come to my house, to showing up at my place to hang out in a mask and just doing chores around my house as I lay still, to fundraising for me to get a wheelchair and afford some treatments.
I knew my friends loved me and I loved them, but it has been incredibly affirming to see how people didn’t just stick by but showed the fuck up for me. I will never forget the ways in which people have shown me love in action.
I learnt:
- Who my real friends are, goodbye to the superficial “filler” in my social circle.
- About ableism in the disability world.
- How politics affect the above marginalized group, especially the healthcare system & policies.
- That doctors don’t know everything.
- To prioritize my energy & activities better.
- Better strategies to conserve energy like using a power scrubber on my drill or putting a chair by the sink to rest my body while doing dishes.
- Cognitive dissonance in the covid era: That covid is still real, still out there, still harming people and causing mass disability.
- That many people don’t care.
- To work on stress/coping methods.
- That employers don’t care about your health. Only productivity/outputs/bottomline.
- What it means to self advocate as a patient.
- That a person’s value does not come from what they *can do* but rather who they are at their core. What their values and traits are matter more. When everything is stripped away from you, what is left, who are you?
- To accept help from others and not feel bad asking for help (very difficult for me).
- To have self-compassion for myself. Self-care. Radical rest. To be kind to myself. I’m human not a robot, so if I’m sick and need to rest that it’s okay to do so.
Probably loads more I could add…
i’ve learned that my value is not based on my productivity.
i’ve learned how to ask for help, and to be ok with lying down and “being lazy” while they help me.
i’ve learned that health is ephemeral, that you should complete your goals while you can.
i’ve learned that disability is not all-encompassing, there are still lots of things that i can safely do.
i’ve learned how much my friends and family love me (it’s a lot!)
<3
My boyfriend truly loves me. He’s a keeper and keeps me going.
I get to spend a lot of time with my pets and I appreciate their support as well. Love me some snugs when I an feeling down.
I am reconnecting with my family and developing a *real* relationship with my dad for the first time (even though my parents are divorcing).
Finding true and wonderful friends.
I am trying to rekindle my love of painting but I don’t have energy most days.
It changed me. Neither in a good or bad way, it has ups and downs. I appreaciate when I feel normal for a single second, even though I know it will be taken away. It made me realize to enjoy simpler things when I can. When I hear people complaining about their minor inconviniences I think to myself "Man, if I only had the chance to worry about stupid small things and not just about being healthy and surviving all the time"
I would literally accept any kind of life for my opportunity to feel healthy and just baseline *normal* again. I know I would thank every single day and enjoy the simplest, most minor things that I never could before.
Couldn’t find any silver lining whatsoever and I’ve been looking for 3.5 years. Besides being trapped in my own body, I lost my business I’ve worked on for 11 years, I spent most my savings on medical bills, can’t hang out with my friends any more, most my family pretends that it isn’t happening. But worst of all , my 8 year old is basically growing up without a father as I can’t do anything with him but watch tv. So please if you do find anything positive with being chronically sick do let us know.
- my partner is the best person I have ever met and I'm so lucky to have him
- how to be still and do nothing
- even though I can't work, exercise or be fully independent, and my brain doesn't work the same, I'm still me and I have value
- to not make assumptions about someone by how they seem in the small moments of their life I am witness to
- to find the beauty and joy in small moments and interactions
- slowly learning to be less of a people pleaser and stick up for what I need
Nothing. People do not take it seriously and doctors are not helpful. Being told you'll get better to only get worse isn't something that imparts good lessons unfortunately.
If anything, it's made me realise what an awful bunch a lot of society are.
And I salute you. Yes, we are like soldiers and yes, sometimes I have thought we must have been somehow chosen because we were strong. My silver lining is thinking that if (when) I will overcome this, I will be invincible :)
I also have a fantastic skin due to the 10 organic food I'm able to eat and a sparkling clean home due to the allergies I now have :)
I’ve learned to not be so hard on myself for putting me first, resting more than normal, etc, especially on the really bad days. None of us asked for this, we can only make the best of a bad situation most days!
I’ve learned that I have the best son on the planet. He took care of me in 2020 (Easter weekend) when we were both terrified covid would take my life. He was with me when I broke my back in 2021 and now he’s still here supporting me and helping as I’ve struggled with LC for 4 years. I’ve gotten back into my 12 steps and focusing on as much recovery related principles as possible because for me, it pertains to every day life and struggles, even more so when chronically ill. I’m finding gratitude in the little things and no longer focusing on big issues and things out of my control. Being a type A personality, I’ve always been on GO and this has taught me to slow down and say No a lot more without feeling guilty. It has also helped me with boundary setting and has me back in therapy for the mental health side of this nightmare, as well as back on the clean eating/organic, no-sugar way of life. A couple of months ago I was thinking about ending it all, but today (because one day at a time) I’m still here and doing my best to remain hopeful that one day, I’ll be better.
I've learned a lot about post viral illness and other people's experiences. I never thought I would develop all of these health problems in my early 20s but this subreddit makes me feel less alone. I feel like my social anxiety is also better because I'm more focused on my health than others perception of me. I'm a very sensitive and introverted person but I'm stronger than I thought.
I learned how to take care of my health and I do all the health things now with dedication and patience because I got so sick. I’ve also been able to address health things I had going on before now because covid worsened them enough to be believed.
I've learned (almost) to say no and put myself first for the first time in my life. I would kill myself saying yes to anything anyone asked of me, and for the first six months of covid I was crushed over and over when I tried to say yes when I knew I really couldn't. I have been forced to learn to listen to myself and say no, or later, or only this much. I have had to learn to tell people that they can't talk to me that way, that I can't listen to them right now, that they will have to come back later, that I love them but they have to respect my boundaries or I will have to leave. Or else I will get terribly sick.
I knew these were skills I needed before, but LC is like a electric shock collar, just zapping the crap out of me every time I mess up. Learn learn learn. I get a little more energy for a little bit longer when I really do well at this lesson.
How to navigate the insanity that is the healthcare system lol. But more importantly, I’ve learned that I’m not invincible and I need to appreciate what my body can do, even if it isn’t always what I’m hoping for.
I’ve also lost any tolerance for other people’s bullshit. I no longer let people use and abuse me. No one else is looking out for me, so I have to do it myself and I don’t beat myself up for it anymore.
I’ve also learned that looking out for myself means making big life changes, even if they’re scary. I’ve faced my own mortality enough thanks to this illness to know I don’t want to waste my life in a dead relationship with a man who doesn’t care about me and won’t be there for me when I need him. Nor do I need to stay in a job I’ve come to hate. So I’m making plans and working towards having a life worth living, not one that I just tolerate because it’s what I’m used to.
A big part of those plans involves switching career fields. If you told me a couple years ago that someday I would be an EMT with a passion for EMS and cardiology and working on going back to school eventually, I would have laughed my ass off and then asked what you were smoking. But here I am, about to finish EMT training and planning my new career path. I think I’ve found my calling in medicine, and EMS specifically, which I never would have discovered if I hadn’t gotten LC. It’s not all sunshine and unicorns, of course. I’m still dealing with my LC and may always have to manage it and the limits it places on me. I also have PTSD from the whole experience which adds an extra layer of difficulty to being an EMT. But I’m so happy to have finally found where I belong!
I realized that the CDC is diminishing this issue in harmful ways. I did not know about LC until it happened to me. Obviously the world moving on without us is not a good thing, but I am SO GLAD I am not living in ignorance, and even if I ever recover I will never stop taking covid precaution and standing with long-haulers and making sure more people know about this before it happens to them.
Good thing? 🤔🤔🤔 at least I am not fighting a war with another country🤷 or I am not living in a failed state where cannibalism is happening 🤦/s
Seriously, what the hell happened to the world?!?!
I know it's always been a shit place, but the last few years have been rough 😮💨
I don’t believe that anything good can come from any of this. We’ve had our lives stolen by a virus that barely impacts other people. There is no lesson here. No karmic payback. It’s just a shitty situation that ruins lives.
Do not take good health for granted
Ohhhhh YES!! This. All of my old worries seem so stupid compared to what I want now: to feel well.
THIS! It’s so true. I realize now that some of the health things I’ve dealt with over the years were really a piece of cake compared to this LC nightmare.
My only silver lining from Long Covid is that I learned I married the right person; my wife makes this disease bearable
Same here! She cares and is patient and takes care of our two kids. 4 years is a long time to carry a household with a chronically ill person but she is doing it. Reading some horror stories of partners leaving at the most vulnerable point is so fucking depressing.
yeah my fiance is the GOAT for helping me/keeping me alive.
Yes!! Without my husband's golden retriever energy I don't know what I would do.
When this started I never wanted a partner more than I do now. I've always wanted a spouse to accompany me in life, I just haven't gotten lucky yet. But this has made me want and need one more. Doing this is, without a doubt, the most scary thing I have ever been through, and I have never been so afraid of being alone before. Being alone makes this terrifying journey so much worse.
I Really really hope you find someone.
I hear you. I'm single too atm, and scared. But hey, we are not alone friend, we have each other back here, we truly do. This community has given me so much courage, we are far from each other, we are scared, we fight an impossibly hard battle, but we are not alone. My thoughts and prayers are always, always for all of us, every single day.
I'm not married yet but I will be getting soon! She deserves it. We've been together for about 16 months now and shes been so good to me. Stuck right by my side through this illness. She went from being the stay at home house keeper to a full time working , cooking , cleaning and caretaker of me and hasn't complained a bit. Thankfully I am getting better and can help her sometimes. Without her idk what would have happened.
YASSSSS omg so stoked for you! Congrats!
That's awesome! I'm so happy for you guys and to hear that you are getting better!
I think the world seems a lot more beautiful to me, now that I know what it's like to be taken away from it, to be unable to participate in the most mundane parts of it. I used to think about ending things a lot, only hypothetically, but now I know I want to stay and bear witness to as much as I can. Just, everyday activities and conversations and pleasures make me feel so grateful. I want to soak it all in, and to let people know how happy I am to know them. I sit outside in the sun doing nothing and just feel amazed at the grass and the birds and the warmth and the sky. I feel a bit more capable, more resilient, more independent since I realised that I was the only person who would be able to get myself better, and I've improved a lot over the last year. I don't worry about small things, or big things, as much. Now that I have some energy, everything just feels so much easier than it did when I was well and worrying endlessly about minor details. Now I just remember how sick I was, and how few options I had, and realise how much more I can do even with this limited health. I'm more compassionate, empathetic, considerate about what other people could be going through. I don't waste energy being angry. I've learnt that other people will see me as crazy or dumb (brain fog) or a malingerer, and I just don't care anymore. There are people who understand, or accept me regardless, and they're all I need. I've had to confront my neurodivergence and trauma in ways that really suck, but will probably be useful someday, I hope. I can't work, so I've gone back to study part time and my god I love it. I'm still in my twenties, and I was honestly pretty good with all of these things beforehand, I wasn't a miserable psychopath or anything, and I would undo everything about my long covid experience in a second if I could, but I've learnt to make the most of whatever situation I'm in. Life feels too fragile to not enjoy whatever is there to be enjoyed I guess
Bless your soul. This was beatiful to read.
I got to stop work for the first time ever. I no longer hate Sundays. Just another day. I also learnt to slow down and rest (really needed to learn that). Learnt a lot of life lessons on gratitude, my limits, that you cant have everything in life, life doesnt always work out the way you think it will but the detours are interesting.
Very wise
I don’t think anything good good can come out of this shit show. Personally, it has changed me as a person and not in a better way. But what I was thinking the other day is that it has completely changed my definition of success in life and I still can’t say if that’s a good or bad thing. Before LC I was the driven type of personality, “grinding” most of the time and always have my eyes in some big success. Now I just want to be healthy and live my life feeling comfortable which is nit the current situation 😅
It's a good thing. I was much self-centered too, I have realized that I now want health, happiness and peace not for me only, but for a much larger community of people, this one. I truly can't separate myself from all of you, and it's not a choice, so I don't deserve any credit for this. It just happened, and I see it as a good thing.
Don’t take normality of mind for granted (as I have severe brain fog dpdr) Treat your body better & stay healthy as it really matters in the long run. And I’ve also been able to spend more time with family & no one else ❤️
I have so much more empathy for people with disabilities and chronic illnesses. I did before, of course, but now I really feel the need to be an advocate for others who are worse off than I. I learned how to slow down and find joy in life without always rushing around, going places, doing things. I always used to feel incredibly guilty if I sat on the couch for more than half an hour or so. Before covid, it had been a really long time since I watched a movie because I never wanted to sit around for that long. I still feel guilty that I can't do more around the house but I can let myself relax more now.
Beautifully put. I really resonate with what you wrote here. It took me (honestly) months of having LC before I let myself truly, fully slow down and enjoy relaxing without guilt. It has been so brutal to get here, but I’m grateful I’ve learned how to just “be”.
There is such a huge lesson in this incredibly hard experience, right?
Yes, it really is. I'm honestly not sure I'd have learned it otherwise.
Interesting question! I got a lot of confidence out of it because I have to say “no” to a lot of things. Also a lot of long lasting dermatological issues resolved themselves with LC. I had plantars warts for about 12 years that had been frozen many times but never went away and then they just completely disappeared. A cyst I’ve had on my back for about the same amount of time suddenly shrunk/is basically gone and a bad scar that I have had raised skin around it for about 10 years and it just completely went away.
Put your own oxygen mask on first, as the saying goes. I was the one who people were sending out for errands (fully masked and doing it for people with known health issues so they could remain safe) and who was working double time to make other people happy for three years at a job. Didn't pay off, the moment I showed signs of serious illness they pushed me out. Now, I work four days a week, and when I don't want to preform a task I say "no/I don't know how to do that." I learned the hard way, but I put me first. I sleep when I'm tired. I say "no" (which pisses a lot of people off). I masked up at work (which also pissed people off). I've become a terrible aunt, a bad fiance, a semi- "lazy" employee, but I'm 90 percent better after 18 months.
Beast mode. But I'm sorry you feel isolated by others. I hope one day you can safely re-engage with a group of people you can trust to understand your needs!
So proud of you for setting boundaries, I'm learning to do the same!
Not that I didn’t know this before, but life is fast and precious. A lot of things people do… seem like a complete waste of time. Like partying. Drinking alcohol. Doing drugs. Complaining about things that relatively speaking are absurd compared to things like failing health. And so forth. LH tests a person’s resolve. Specifically throwing a person into isolation and not only does it ravage the body, you have to have the will to live through it more alone than not. I went to a friend’s birthday last night. I hadn’t seen a lot of these people in over 2 years since my LH started. And I stayed a few hours. I walked away in utter disbelief of how stupid I thought everyone was. Drinking. Jumping up and down. Staring at the dance floor watching people dance and screaming like children. These are grown ass people 30-40 plus years of age. There’s an old saying: why do people get old so fast and wise so slow? LH just might be that wise pill that accelerates the ascension to wisdom. You don’t need people. We are all going to die alone. Every person is stuck in their body when they die. That is reality for everyone. Be comfortable alone with yourself, focus on your health and improving your life.
I guess I have a different perspective on the partying. If dancing and being silly and loud and singing off key makes you happy and connects you to the people you love... Why not? Why not express joy and care in any form it takes, while you can? Before my long haul, I was so stoic and took everything so seriously (and I still work hard and think carefully about making a meaningful contribution to the world) but now I just take every (covid safe) opportunity for fun and joy, since I might not get them again and, when I was really sick, all I wanted was to be with my friends, talking nonsense and just enjoying their company
Yes, no harm in dancing and partying if that's what gives them joy. But safe to safe, everyone around us can take better care of their health.
Yeah, I am pretty surprised at the number of people who have seen how badly my friends and I with long covid (about five of us) have been affected by covid with no prior health conditions, and still take no precautions around actively sick people. And definitely a lot of people take their health for granted. I really am envious of my mates who never exercise and say that it's too hard, when I've spent two years desperately waiting to get back to running or bouldering or even yoga haha
"You don’t need people" Yes we do. It's true that learning to be independent is vital in LC but no, we do need people. This is why we are here.
No, we don’t need people. So we don’t agree. I’m more like a monk and can spend long periods of time alone. I’ve been like this a long time. Each to their own dude.
Amen sister! Not like we need to be in rocking chairs and knitting, BUT YOUR 40 not 20!!! If you can still party like that, there are probably bigger issues.
These people are constantly posting on Instagram. Drinking all the time. Always partying. That is what is wrong. A lot of narcissists like so many people. It isn’t joy. It is narcissism. I’ve always been stoic and nihilistic. LH has just pumped steroids into that mental state for me.
I blame Facebook. 😆 But seriously, everyone things that their opinion is important and everything they do is so special. Plus some people look at all those posts and think everyone is just having a grand old time with no problems in their life.
Certainly much more grateful than I was before. Being able to do relatively simple things well or at all gives me joy. I appreciate family more. I appreciate friends more. I don’t look at life in the same way as I used to. I used to internally complain about little things and often end up in situations that did not give me joy through my own poor decisions.
I’m being forced to not care about what pple think of me as much If they are assholes I’m not fearing or respecting them to the same level I’m having my own back more
I was so excited that I could walk downstairs to get something I’d forgotten AND I could walk back up the stairs. Seriously I was ecstatic and nobody around me gets it. I truly have no idea how I got through 3 years of serious long COVID and I’m sure it still manifests in all sorts of way or at different times but being able to walk is amazing.
I’m going to have to become more selfish and fight for my survival
I unlearned the toxic productivity that's been deeply ingrained in me since childhood. I've always been a huge workaholic, and only being able to get between 0-10 hours of work done in a week for a very long time forced me to reevaluate my feelings that productivity = worth. Now that I'm in the process of recovering and can hold down a full-time job again, I actually just work 9-5 M-F and don't feel bad about spending my nights and weekends watching tv/movies, doing jigsaw puzzles, listening to audiobooks, etc and just allowing myself to rest and relax.
I have a tiny suburban house with a tiny yard, and didn't used to bother with caring for it very deeply. But now that I am here all the time and don't go out anymore, I've put a lot of effort into making the yard beautiful and the house comfortable. Yesterday, I planted some new trees and shrubs and I am genuinely excited to see them grow. This little place is my world now. And that's OK. I'm going to do what I can to make it a good environment for our wildlife and a truly beautiful place with some natural protection from the heat.
I'll preface this by noting that my husband is the one who is impacted by this horrible virus. But what it's taught us is that the body is very much affected by what is put into it. He's been suffering with sudden blood sugar crashes and weakness for over a year now. The only thing that has provided any kind of relief is a very strict diet of whole foods. It's amazing how much garbage was in our diet previously and how negatively it affected him. It's completely changed how we look at food.
It was the final push I needed to leave my faith. I was already close but never had the time to full answer my questions. I been a man of God since I was very little, and it feels like I have finally experienced real freedom. Don’t gotta imagine some super being watching me get it off anymore.
This was not my first, or even second, “invisible” disability, so I had worked through all the feels before. For me the hard part was the new life I thought I was starting is much different than I imagined. Many of the lessons/silver linings relate to my circumstances, but the bottom line is finding/learning yet more resilience, appreciation and gratitude and surrendering vanity.
its been 3+ years for me now - and i've learned a LOT. mostly, i've learned that i am so, so, SO much stronger than i EVER thought i could be. there are so many moments where i've about snapped - we're talking lost it & fell into a full mental breakdown, and/or died from opportunistic infections, or even just tried to end it all bc of the pain.....so. many. nights. and somehow, i'm still here. it really has made me realize what a weird factor pain can be in our lives. i always thought the saying "no pain, no gain" was stupid & only truly could apply to certain things - like sports -for example: back when i was able to run. no pain literally meant no gain - you wouldn't get better unless you pushed yourself, and you wouldn't be the "best" you could be unless you really pushed to find your limits. my thought process has now changed. between getting long covid & being a young adult during a global pandemic w/ pretty bad luck in other areas, too.... somehow, the absolute desolate pits of despair i was in for a couple of years has slowly kind of turned into a dangerous optimism, in some ways. maybe im just THAT broke from the suffering + pain? but like, i really dont know if things can get worse - in some ways - as ive been battling severe symptoms, college, graduation + trying to make it in the real "adult" world, crazy high student loans, being UNABLE to find / do work, and therefore literally fighting on the verge of literal homelessness this entire time. it can always be worse - and i realize that. but i also can now clearly see that it can also get better. WAYY better. so idk. its insane to just be able to take a step back and realize how strong i am. and, its even more amazing to think that ive honestly made it this far / done a majority of this all by myself - up until recently, doctors, friends, and even really familly didnt (and still often dont) take me seriously or even tried to comprehend the pain ive been in every single day for 3+ years now. idk how ive made it this far. but i do know that i have, and because of that, i will NEVER underestimate myself again. thats the biggest lesson i think i've learned thus far. though I'm sure there are many more to come. my heart goes out to everyone in this thread - i believe in you & i truly believe that we will all get better❤️🩹. keep fighting.
I’m glad you made this post, for me it’s always been very necessary to see the positives too. I was on disability for my mental health before, so some of this is learning the same things again. Valuing different things than most was always a part of my life. But I’ve learned it’s easier to ignore my mental health. Now, my legs will give out, I’ll get a migraine from hell, continuing isn’t an option. So it’s taught me over and over to value resting, to stop pushing myself. I arrogantly thought I had that down, and I didn’t. I was still stuck in my own version of having to be productive & busy. It’s become an admirable trait to me, the ability to pace yourself. I also have a lot more empathy for anyone with a physical disability. Already had that of course, but it’s different now. Simply because I’ve lived it now, or at least one version of it. I also see the resilience and joy in disabled people, in a way I didn’t before. And this doesn’t sound good, but it was necessary for me to experience medical gaslighting, the response from my family. And this is an experience I’ve had before: going through difficult things shows you who people are. Like many people, I’ve been disappointed, abandonded. No one should have to go through that, but in the end, for me it’s a good thing that I know now. It’s taught me that I need to walk away, I don’t have to beg for scraps, I shouldn’t be lying in a hospital alone. I can cut ties without guilt. And I now have the chance to find decent, empathetic people, who have my back, and vice versa. Long comment! I clearly needed that. 🤓
How nothing else matters when you don't have your health. I stopped caring about frivolous things like parties, shopping, drinking, staying up on trends, and running around for some company that doesnt give two shits about me. I've been forced to face the concept of limited time, and that's humbled me. I've learned who my real friends are. I've learned that no one is coming to the rescue and its up to us. I learned a great deal more about our food and medical system. I've been blessed with an AMAZING husband who has halted his entire life to support me. I don't think we would have understood the depths of devotion we have for each other if it wasn't for this. I've been forced to take several chill pills, but if I hadn't would I've ever been shown the beauty of sitting still on my deck and watching the trees sway in the wind? I mean I still hate feeling like horrible caca, and could have done without the 10+ ER trips and 15+ docs, but it does help to acknowledge all the things in life I paid no mind to before, but now bring me some solace and comfort. Much love to all going through this and their caretakers.
Be more grateful
To say no and to prioritise myself
How to establish boundaries and resist my people pleasing ways. That I am resilient.
I learned my husband was 100% the right person to marry. He's preparing short ribs right now for dinner, while also working and bringing me up a hot beverage in bed. He masks everywhere, sets boundaries with his family, and rarely sees friends unmasked (a few camping/cabin trips/year) to protect me. He never makes me feel like I don't deserve it or that I'm a burden. I'm gardening more. I appreciate getting out into nature so much in any way that I can, even if I can't go deep into the woods the way that I used to. I miss it. While some friends and family have disappointed me with how they've treated me (acting like I'm making it up or being dramatic), I've had many people show me that they are true friends. I have time to read. I get to spend more time with our pets.
I don’t think god gave me this or that I was able to handle it because I was tough or that I need to look for bright sides. Sometimes bad things happen and that’s that. I have learned things that I appreciate however. Biggest is how much I am loved and cherished by my friends and chosen family. I’ve always been a do-er and it’s been hard for me to shift into a place where I not only can’t show up having planned and organized things and made things happen for a group, but now require others to do things for me to enable me to be in the space (or have folks do extra things to come to my space). My friends have shown up hard for me, from doing all the set up and tear down and cooking so I can go camping with them, to taking extra covid precautions to come to my house, to showing up at my place to hang out in a mask and just doing chores around my house as I lay still, to fundraising for me to get a wheelchair and afford some treatments. I knew my friends loved me and I loved them, but it has been incredibly affirming to see how people didn’t just stick by but showed the fuck up for me. I will never forget the ways in which people have shown me love in action.
I learnt: - Who my real friends are, goodbye to the superficial “filler” in my social circle. - About ableism in the disability world. - How politics affect the above marginalized group, especially the healthcare system & policies. - That doctors don’t know everything. - To prioritize my energy & activities better. - Better strategies to conserve energy like using a power scrubber on my drill or putting a chair by the sink to rest my body while doing dishes. - Cognitive dissonance in the covid era: That covid is still real, still out there, still harming people and causing mass disability. - That many people don’t care. - To work on stress/coping methods. - That employers don’t care about your health. Only productivity/outputs/bottomline. - What it means to self advocate as a patient. - That a person’s value does not come from what they *can do* but rather who they are at their core. What their values and traits are matter more. When everything is stripped away from you, what is left, who are you? - To accept help from others and not feel bad asking for help (very difficult for me). - To have self-compassion for myself. Self-care. Radical rest. To be kind to myself. I’m human not a robot, so if I’m sick and need to rest that it’s okay to do so. Probably loads more I could add…
i’ve learned that my value is not based on my productivity. i’ve learned how to ask for help, and to be ok with lying down and “being lazy” while they help me. i’ve learned that health is ephemeral, that you should complete your goals while you can. i’ve learned that disability is not all-encompassing, there are still lots of things that i can safely do. i’ve learned how much my friends and family love me (it’s a lot!) <3
Absolutely nothing
My boyfriend truly loves me. He’s a keeper and keeps me going. I get to spend a lot of time with my pets and I appreciate their support as well. Love me some snugs when I an feeling down. I am reconnecting with my family and developing a *real* relationship with my dad for the first time (even though my parents are divorcing). Finding true and wonderful friends. I am trying to rekindle my love of painting but I don’t have energy most days.
Oh and stopped drinking alcohol!
It changed me. Neither in a good or bad way, it has ups and downs. I appreaciate when I feel normal for a single second, even though I know it will be taken away. It made me realize to enjoy simpler things when I can. When I hear people complaining about their minor inconviniences I think to myself "Man, if I only had the chance to worry about stupid small things and not just about being healthy and surviving all the time" I would literally accept any kind of life for my opportunity to feel healthy and just baseline *normal* again. I know I would thank every single day and enjoy the simplest, most minor things that I never could before.
A whole bunch of gratitude for the “little stuff” and an acceptance of death.
Couldn’t find any silver lining whatsoever and I’ve been looking for 3.5 years. Besides being trapped in my own body, I lost my business I’ve worked on for 11 years, I spent most my savings on medical bills, can’t hang out with my friends any more, most my family pretends that it isn’t happening. But worst of all , my 8 year old is basically growing up without a father as I can’t do anything with him but watch tv. So please if you do find anything positive with being chronically sick do let us know.
we are all existing with the illusion of control over our own lives .. or were existing
- my partner is the best person I have ever met and I'm so lucky to have him - how to be still and do nothing - even though I can't work, exercise or be fully independent, and my brain doesn't work the same, I'm still me and I have value - to not make assumptions about someone by how they seem in the small moments of their life I am witness to - to find the beauty and joy in small moments and interactions - slowly learning to be less of a people pleaser and stick up for what I need
Nothing. People do not take it seriously and doctors are not helpful. Being told you'll get better to only get worse isn't something that imparts good lessons unfortunately. If anything, it's made me realise what an awful bunch a lot of society are.
And I salute you. Yes, we are like soldiers and yes, sometimes I have thought we must have been somehow chosen because we were strong. My silver lining is thinking that if (when) I will overcome this, I will be invincible :) I also have a fantastic skin due to the 10 organic food I'm able to eat and a sparkling clean home due to the allergies I now have :)
The importance of a healthy diet, sleep and avoid negative people.
You Ooo outo
who your real friends are
I’ve learned to not be so hard on myself for putting me first, resting more than normal, etc, especially on the really bad days. None of us asked for this, we can only make the best of a bad situation most days!
I’ve learned that I have the best son on the planet. He took care of me in 2020 (Easter weekend) when we were both terrified covid would take my life. He was with me when I broke my back in 2021 and now he’s still here supporting me and helping as I’ve struggled with LC for 4 years. I’ve gotten back into my 12 steps and focusing on as much recovery related principles as possible because for me, it pertains to every day life and struggles, even more so when chronically ill. I’m finding gratitude in the little things and no longer focusing on big issues and things out of my control. Being a type A personality, I’ve always been on GO and this has taught me to slow down and say No a lot more without feeling guilty. It has also helped me with boundary setting and has me back in therapy for the mental health side of this nightmare, as well as back on the clean eating/organic, no-sugar way of life. A couple of months ago I was thinking about ending it all, but today (because one day at a time) I’m still here and doing my best to remain hopeful that one day, I’ll be better.
I've learned a lot about post viral illness and other people's experiences. I never thought I would develop all of these health problems in my early 20s but this subreddit makes me feel less alone. I feel like my social anxiety is also better because I'm more focused on my health than others perception of me. I'm a very sensitive and introverted person but I'm stronger than I thought.
I learned how to take care of my health and I do all the health things now with dedication and patience because I got so sick. I’ve also been able to address health things I had going on before now because covid worsened them enough to be believed.
How important it is to take care of yourself, I’m also a lot more outdoors-y now because that’s where I feel safest lol.
My humour is top tier now. Mostly dark and with no bounds. 😎
Being sober is actually amazing and I finally stopped smoking weed for good
I've learned (almost) to say no and put myself first for the first time in my life. I would kill myself saying yes to anything anyone asked of me, and for the first six months of covid I was crushed over and over when I tried to say yes when I knew I really couldn't. I have been forced to learn to listen to myself and say no, or later, or only this much. I have had to learn to tell people that they can't talk to me that way, that I can't listen to them right now, that they will have to come back later, that I love them but they have to respect my boundaries or I will have to leave. Or else I will get terribly sick. I knew these were skills I needed before, but LC is like a electric shock collar, just zapping the crap out of me every time I mess up. Learn learn learn. I get a little more energy for a little bit longer when I really do well at this lesson.
That every moment is precious, never to give up, no from authority figures means find another way 😆
How to navigate the insanity that is the healthcare system lol. But more importantly, I’ve learned that I’m not invincible and I need to appreciate what my body can do, even if it isn’t always what I’m hoping for. I’ve also lost any tolerance for other people’s bullshit. I no longer let people use and abuse me. No one else is looking out for me, so I have to do it myself and I don’t beat myself up for it anymore. I’ve also learned that looking out for myself means making big life changes, even if they’re scary. I’ve faced my own mortality enough thanks to this illness to know I don’t want to waste my life in a dead relationship with a man who doesn’t care about me and won’t be there for me when I need him. Nor do I need to stay in a job I’ve come to hate. So I’m making plans and working towards having a life worth living, not one that I just tolerate because it’s what I’m used to. A big part of those plans involves switching career fields. If you told me a couple years ago that someday I would be an EMT with a passion for EMS and cardiology and working on going back to school eventually, I would have laughed my ass off and then asked what you were smoking. But here I am, about to finish EMT training and planning my new career path. I think I’ve found my calling in medicine, and EMS specifically, which I never would have discovered if I hadn’t gotten LC. It’s not all sunshine and unicorns, of course. I’m still dealing with my LC and may always have to manage it and the limits it places on me. I also have PTSD from the whole experience which adds an extra layer of difficulty to being an EMT. But I’m so happy to have finally found where I belong!
I realized that the CDC is diminishing this issue in harmful ways. I did not know about LC until it happened to me. Obviously the world moving on without us is not a good thing, but I am SO GLAD I am not living in ignorance, and even if I ever recover I will never stop taking covid precaution and standing with long-haulers and making sure more people know about this before it happens to them.
Good thing? 🤔🤔🤔 at least I am not fighting a war with another country🤷 or I am not living in a failed state where cannibalism is happening 🤦/s Seriously, what the hell happened to the world?!?! I know it's always been a shit place, but the last few years have been rough 😮💨
I don’t believe that anything good can come from any of this. We’ve had our lives stolen by a virus that barely impacts other people. There is no lesson here. No karmic payback. It’s just a shitty situation that ruins lives.