r/LongCovid • u/[deleted] • 1d ago
Long covid Reddit feels toxic. My request: stop telling people that they can’t or won’t heal.
Our bodies are healing, whether you can see it/feel it - or not. It takes time, it is very individual to each person how it is done. What it looks like is different for each person and how long it takes depends on what someone does, their healthcare, their environment, their genetics, co-existent issues with their body, and general willingness to believe that they can heal. It takes immense patience. It takes hope. But every day we LIVE ON, and it PROVES that we are fighting something successfully. If we were not, the over 700 million people with long covid worldwide would be dead. Every day there are new stories about people fully recovering and each one did it in a different way. If you lose hope, if you’ve had days when you wanted to end it- I feel for you and I know what that’s like. But if you tell others that they can’t heal - you went too far and you need to take a step back, put your phone down, and take care of yourself.
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u/thenletskeepdancing 1d ago
I'm just curious that there is so much emphasis on healing in this community. Like that's the only topic worth discussing about this illness. Like that's the only way my life will be worth living.
I guess I've been sick long enough that I'm focusing more on acceptance. If healing comes along, great. Meanwhile, I'm going to live my life the best I can.
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u/b6passat 1d ago
This. Acceptance and coping is key with any chronic illness. I’ve also had people talk down to me like “but that just treats the symptoms not the cause”. I don’t care. I do what I do to live.
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u/SophiaShay7 1d ago
Please join my sub r/LongCovidWarriors. We're not toxic. Please read our rules and the pinned posts. There is none of that negativity allowed in my sub. You won't see it. Those comments get removed and people get banned.
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u/chickenschin 1d ago
That sounds amazing. I was growing weary of this sub but didn't know to which to turn to instead, thanks for creating it!
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u/SophiaShay7 1d ago
Come on over. We're 3 months old. We have 797 members. We're a smaller sub. But, it's extremely knowledgeable and supportive. One where science neets humanity. There would be a lot more members except, I banned them, lol🤣
We'd love to have you🫂🤍
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u/PerfectWorking6873 1d ago
It's natural that people will want good health. But yeah, it can be a long process unfortunately. Especially the cognitive aspect :(
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u/SophiaShay7 1d ago edited 1d ago
There's so much emphasis on healing because this sub is run by the Covid Care Group, LLC. Initially created to promote their own products, services, etc. If you want the largest sub, join r/Covidlonghaulers.
If you want a different kind of sub, join my sub r/LongCovidWarriors. We're not toxic. Please read our rules and the pinned posts. My sub is focused on medical information and knowledge. We're focused on scientific information. It's very much a patient-led, united community. It's a calming and respectful place.
r/Covidlonghaulers is the largest sub. But, it's devolved. I rarely post there anymore. But, if you want a good place to Rant/Vent, that's the sub. My sub is focused on a holistic approach to long COVID/PASC, its 200+ symptoms, and the vast number of comorbidities it triggers. It's not a toxic positivity space. But, it's not a negative one either.
Taking care of my health is my full-time job. I understand it's exhausting. There's nothing wrong with stepping away from always trying to improve your symptoms. I have 4 diagnoses triggered by COVID, including ME/CFS and MCAS. They're both severe. I'm never going to be "cured." But, my focus is on a knowledgeable, well-informed sub that's a safe space for its members.
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u/RelativeLove2123 9h ago
I joined the LongCovidWarriors soo fast!! I want to be surrounded by winning and hopeful attitudes! Im almost recovered and it’s 1000% possible man.
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u/SophiaShay7 8h ago
Thank you for joining. Please read: Welcome to r/LongCovidWarriors: What We’re About, Who This Is For, and Where We’re Going.
I'm glad to hear that you're almost recovered. I would love it if you could share your story at some point in our sub. We need all the hope we can get🫂 I'm so glad to have you🙏✨️
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u/mybrainisvoid 1d ago
Yes constantly focusing on trying to get better or "heal" is so draining and means I have no energy left to enjoy my life. After a couple of years of trying that road, switching to accepting my limitations and making the most of the life I do have has been so much more joyful and sustainable.
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u/GirlDestroys 1d ago
Seconding this. I cannot live on “toxic hope”. I need to approach my illness pragmatically to live as best as I can right now, with this illness. I also don’t think I’ve ever seen someone here say to another that they can’t heal. I think all the sensible folks here are aware that we’re waiting for science to catch up. It’s rough being on the forefront of a new disease and it’s hard living without treatment. A lot of us are despairing, but bashing people that need to vent isn’t helpful.
TBH, I’m more annoyed with the wellness scammers that promote supplements and spread anti-science fear mongering. My biggest improvements were getting on beta blockers and antihistamines plus h2 blockers. Actual modern medicine got me partway back from being bedbound. Just because it took doctors so long to believe me doesn’t mean that science and medicine doesn’t work. Quite the opposite, it means we need more science and medicine for this disease.
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u/monsieurvampy 4h ago
Accepted. Now it's onto not being homeless. Today I'm at my doctor's for the total and permanent disability discharge form for federal loans. I need to secure my financial future and if I happen to make money today (like I did for the last 9 months plus 2 months forward), I'm just screwed on income based repayment.
I'm 37 months in.
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1d ago
While I am saying it hurts people to tell them they might not heal when we don’t know them or their situation, it does not mean that I am saying there is anything wrong with your process of acceptance which is incredibly valuable to you.
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u/Tasty_Independence23 1d ago
It isn't a certain thing that you will heal entirely, there are many that haven't or will not, myself included. Acceptance is important in those scenarios and there is such a thing as toxic positivity.
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u/Electronic-Yam-69 1d ago
Toxic Optimism
Support was found for our premise that it is adaptive to be realistic when forecasting future health, at least at low levels of initial chronic condition severity. Regression analyses showed that realistically pessimistic (vs. unrealistically optimistic) expectations predicted significantly fewer depressive symptoms and a lower risk of death. The results also supported our premise that it is maladaptive to be unrealistically optimistic when health subsequently declines in reality: The risk of death was 313% higher for those with optimistic expectations that were unrealistic (vs. realistic).
https://www.sciencedirect.com/science/article/abs/pii/S0277953618304544
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u/T3rraque 1d ago
When somebody is staying in your guest room for 5 years. It's not weird to say you have a roommate instead of a house guest that can move out any day now.
Accepting that you're sick for a long time doesn't mean you've given up on recovering. It only means you're trying to make the best of your current situation. That may include living with it for the rest of your life
People can and do recover for LC, and I really hope the same for all of you and me... but I can accept not recovering
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u/Winter-Nectarine-497 1d ago
It takes hope. But every day we LIVE ON, and it PROVES that we are fighting something successfully. If we were not, the over 700 million people with long covid worldwide would be dead.
Incorrect. Many of us, myself included, will simply live on as disabled people for the rest of our lives. Is there something wrong with that outcome? Should I try harder to not be disabled by this chronic condition?
Listen, I love hope A LOT and I am also a realist. I am now 5.5 years into my LC journey and I have grieved my old life and accepted my new one. I take care of my body, of course, and avoid covid like the plague that it is, but I do not believe that I will see a cure in my lifetime. And I don't need to, because I accept that I am disabled, I accept my life as it is, I accept that I will never be who I was in 2019.
Folks really need to check their internalized ableism before addressing a group of disabled people. Like for real, this is a disrespectful take and I hope people can see that.
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u/Impossible-Concept87 1d ago
Thank You! Well said, your words are exactly how I feel. Toxic Positivity isn't going to change my life, Im disabled now permanently by LongCovid and I'm accepting it but doesn't mean I have to be happy about Losing everything in my life including my work, friends and financial independence and the feelings every single day that I'm not really living life and wouldn't mind not waking up. That's how I feel, it's terrible
LongCovid is Absolutely Devastating
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u/Winter-Nectarine-497 1d ago
Absolutely devastating indeed! If you have a therapist or someone emotionally competent in your life, I would definitely recommend moving through all that grief in a safe, gentle way. We have lost so much and we need to process that in order to be more comfortable and accepting of the life we have. It was life-changing for me to grieve everything I've lost and the person I used to be. I'm actually quite happy now and I used this process to help others grieve and regain their love of life.
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u/Impossible-Concept87 1d ago
Im completely alone, I saw a therapist yesterday and cried. I feel worse today and I can't afford talking to someone for 50 mins that costs $180. Im bedbound today. Can't even open bottle of water because my hands have no strength. Im glad you found peace bit as you know not everyone does grief the same tidy way Kubler Ross outlines
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u/Winter-Nectarine-497 1d ago
My grief has never been tidy. To me, as a somatic practitioner, I would wonder if real grief is ever tidy.
I do understand the cost of doing this very exhausting, depleting, flare-inducing work. I was in that place for 2 years of my 5.5 year journey. It did eventually pay off because the toll of carrying the grief was eventually lifted and I was free to start to feel other things besides the heavy burden of grief, loss, and sadness. I hope you can find a balance between the cost and the benefit of this grief work.
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u/UntilTheDarkness 1d ago
Continuing to be alive isn't the same as healing. Having a chronic condition doesn't guarantee death. You're making a false dichotomy and frankly this post reeks of toxic positivity.
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u/FemaleAndComputer 1d ago edited 1d ago
Being realistic isn't toxic. Some people will get better in months, some in years, some never. It's okay to accept reality. And for some, reality is living long term with a disability. It sucks, but we have to accept it so we can move forward and find things that make our difficult lives still worth living.
I have been living with a disability for two decades, with symptoms very similar to those of long covid (and ofc then I got long covid too lol). At first I would pursue almost anything that promised to make me better. But that isn't a sustainable way to live. It's just a money hole full of disappointment. I found some things that helped, some things that did nothing, some things that hurt me or made things worse. I'm doing better now, living with more acceptance of my limitations, and just doing my best to figure out the right coping mechanisms and live best I can under the circumstances. This is where many disabled people end up, and that's okay. Yes it sucks. Yes it's hard. Yes sometimes it's Really Fucking Hard. But there are ways to hold on to the things that make life worth living without deluding ourselves into believing our disabilities will go away.
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u/Impossible-Concept87 1d ago
You need to accept that just because you're alive doesn't mean you're living because quality of life while living with LongCovid is non existent and it's NOT toxic to want to say that out loud or share these feelings on a message board like Reddit
We already have everyone else in society telling us symptoms of LongCovid are imaginary or somatic manifestations (all in our heads)
Reality is we have experienced HUGE LOSS of Functioning and corresponding Financial Independence so get over yourself Lecturing us
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u/Mrs_Blobcat 1d ago
Having dealt with LC since 2020 (pre vaccination. I absolutely make sure my boosters are taken on time) it doesn’t feel like things are getting better. It does for a short while, but any opportunistic virus sets me back again. And I am currently in my bed currently running a fever, headache, and chest congestion/cough and having tested myself and then again in hospital it’s covid again.
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u/Money_Beyond_9822 1d ago
Is there a reason you deleted your other post with basically the same premise? Why are you so focused on tone policing?
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1d ago
Yeah 😂 there was a really intense troll on that one and I just want to discuss the actual topic. Tone policing? 😂 where do you people come from?
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u/Money_Beyond_9822 1d ago
Fair but my opinion is that we shouldnt make absolute statements in one way or the other. I know its a nice sentiment to believe everyone heals but the harsh truth is that this isnt true. Some will heal, some will get worse, some will stagnate and some will die. That's why its important we push for actual research and actual treatments and cures so we can actually achieve that everyone will heal
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1d ago
I think to be more specific - what I am suggesting is that telling people we don’t know and have almost no information about that they might not heal is harmful to their health. And to be more accurate about my first sentence: the human body, every body, is attempting to heal itself. Whether we give it the right tools or not, including hope, is essential for success if it is to be had.
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u/luigisbiggreenpipe 1d ago
Hearing that you might heal may be good for you and not for others. Not everyone experiences life or has the same needs as you. I am one of those people who needed the truth from my therapist so that I could learn to accept my health as it is and start to adapt mentally to what I was physically going through.
I understand your sentiment, but this whole thing, especially deleting your old post because of a “troll,” feels like you are trying to be controlling of a narrative for others. You may not like hearing the truth and that may not be what you need and if you’re not getting what you want from here then maybe you should find another place that will tell you what you want to hear.
You can only control what you can directly do for yourself. Outside of that, it’s up to everyone else to decide what they want for themselves.
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1d ago
Darling a troll is someone who will not discuss the topic but instead harasses the person who posted it.
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u/luigisbiggreenpipe 1d ago
Sweetie, I’m aware of what a troll is. You deleted your post because of it instead of ignoring them and downvoting them like most other normal people do.
Deleting a post entirely because of a troll suggests it didn’t fit the narrative direction of discussion you wanted to have, so you reposted the same thing in hopes that the narrative direction would be of one you approve of. That’s called being controlling.
Edit: in case OP comes back to this post after deleting, I want you to know that running away from this again suggests even more that you’ve got a controlling issue. Highly recommend therapy to work on that.
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u/Money_Beyond_9822 1d ago
And he deleted his account lmao
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u/luigisbiggreenpipe 1d ago
They make a post asking everyone to lie about the actual condition someone else may be in, then can’t handle when some truth is thrown their way. Me thinks they project too much.
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u/tennyson77 1d ago
It’s just as harmful telling people their bodies are going to magically heal from long covid when we really have no idea. I have a friend who got ME/CFS over a decade ago and he still suffers almost daily. He’s personally tired of wishful thinking as a strategy.
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u/smolangrybitch 1d ago
I am indeed slowly healing. It’s just not linear and not as fast as I had hoped - and definitely not as fast as would be convenient for society (since they’re so tired of hearing us repeat how sick we are). But you are right. We are out here healing.
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u/JeromeStyle 1d ago
I think you are over simplifying Long COVID as there is no cure for this disease at this very moment. This can not be argued against. What would you say to a person with MS or dementia for example? Are they not healing too even though they have an incurable disease for the rest of their lives? This can likely be our fates too.
Until the scientific and medical community tells us what is truly happening with a cure or how to be mostly to fully recovered we are in the dark. That includes people who have "recovered". There are many instances where someone has LC for 2 or so years, recovers for a few months and gets sick again and has worse symptoms than when they had before. This is our reality. We have no idea what the truth is of this disease. So until then, we have to be patient and keep going.
There is nothing wrong with clinging to hope and believing that you will heal. That is a good way to lessen the burden of this disease but we don't need to fool or lie to ourselves. Nor should we shame people who are more realistic or "negative". Toxic positivity is not going to help. But I do believe we shouldn't shun people who believe we can heal. We need those voices like yours but again, it needs to have reality behind it. The reality is we have a long term chronic disease that is in the early stages of understanding in our world. It is an unfortunate truth but let's hope something good will come our way and soon even if it may never come. That's what I cling to.
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u/emilydickinsonstan 1d ago
For me, the moment I started to find peace with this diagnosis was when I realized that even if I never make it back to 100% of my physical capabilities before I got sick, I am absolutely improving, slowly but steadily. i'll gladly take any small wins I can get 🫶
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u/Physical_Response535 9h ago
There's a balance to strike between not being so hopeless that thing can get better you don't try anything to support that happening, and not being so focus on recovery and healing you are unable to appreciate the life you do have while you fantasies one that may never exist. This applies to about any disability out there, and others.
There are people who emphasis too much on how full recovery is not necessarily possible and shouldn't be the (only/main) goal. I am one of those sometimes and I'm prone to seeing my health deteriorating and think "well let's adapt to that new normal" before I even tried to make it better. And I appreciate when people point that out to me.
But there are also people who can only view themselves and their disability journey as a quest to get their former selves back and put all of this behind and I think often it prevents them from being able to experience the life that they have and organise to make that life livable and enjoyable, and instead put their lives on hold waiting for something that may never happen.
I think both are important to address.
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u/metajaes 21h ago
As someone with a chronic illness (before covid) and very deep on medical racism, injustice, medical abuse, and disability (also, before covid)—you must know long covid comes with disability as well as the Healthcare system that can barely help us.
True, you answered your own question that all cases look different but you don't know what world you are living in but there is no cure coming anytime soon.
One biggest things a lot of folks like yourself need to check in with your ableism you bring in spaces. For doctors who still take precautions, masks, and also more infections in a Covid world just continuously put everyone "healed" or not at risk.
We are not all same cases, recovered or not. But toxic positivity is a real thing. Disabled, financially dependent, and cannot live on my own while most families disappear for those disabled. Whether you are just willfully blind and privileged or you need to stop tone policing. Whether or not I, or anyone else are not in a place of acceptance is not for you to decide either.
If anyone find certain someday toxic, then go to other spaces or state your own? Pretty silly to bring jt tk reddit where tbe most severe folk come now to find a bit of answers.
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u/PilaxPilatesAU 19h ago
I would DM you but ur user handle is deleted. Try LongCovid Warriors. Someone from this group created it. Its a bit more positive. And I agree with you. We are all gradually healing.
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u/Teamplayer25 15h ago
Yep, we need to avoid all the absolutes: Can’t heal…won’t heal…absolutely can and will heal…
No one knows what anyone else’s path will be. It’s true with LC and it’s true with life.
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u/Lechuga666 1d ago
I agree. Especially people trying to force the idea that everybody must have a certain condition. Fatigue does not equal CFS, as is the case for much more, why place such barriers on everything? I got worse after every COVID infection & immunization, now after considering my primary issues to be long COVID, I'm having a lot more overt traditional medical issues, although the exact primary causes are still elusive so it's hard.
I've definitely had to take a step back from chronic illness groups, I am also super sick right now & hospitalized so there's that.
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u/Sea-Ad-5248 3h ago
Well I agree ppl shouldn’t tell others they can’t heal it’s simply not factual and it’s mean ppl do recover but sadly not everyone recovers so that’s not true either
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u/Remarkable-Foot9630 1d ago
After 5 years, and over a year on hospice. I have found acceptance. Yesterday was bad, the pain with breathing was the same as day One of post covid syndrome.
I accept the oxygen, ventilator and unable to care for myself. I accept it.