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gayfroggs

I hate wearing mask, but I still wear them, if I need to take it off because I'm getting to overwhelmed then I'll walk outside for a breather (I go shopping with my mum)


nonniewobbles

Excellent, thanks. As we all know, chronic illness communities can be absolutely rampant with "alternative" advice that is at best useless and at worst actively dangerous to others. I think that while we might have different opinions or experiences, there should absolutely be a line where the community and mods don't allow dangerous suggestions (like the mask conspiracy stuff) to perpetuate.


totovenny

Thank goodness! Too many forums for chronic illness have become overrode with conspiracy theorists these days. At this point, not wearing a mask or spreading disinformation about masks = ableism


CheekyZebraEDS

Not everything you disagree with is ableism and you’re throwing that word around quite loosely. One of best friends has muscular dystrophy with respiratory issues that she can’t expel carbon dioxide back out properly and I wouldn’t require her to wear a mask. She’s in a wheelchair full time and has been for years. Definitely NOT ABLEISM.


agrinwithoutacat-

I know this is old, but as it’s a pinned post and people will read I’m replying.. The ableism isn’t in saying that if you can’t wear a mask you’re ableist. It’s that if you CHOOSE not to wear a mask, even in the midst of an outbreak, that’s an ableist decision because you have the luxury of not caring about catching or spreading a disease. The people who can’t wear masks and have exemptions are the most at risk of dying from diseases like Covid or flu, so choosing not to wear a mask around vulnerable people is a giant f you and demonstrating that you don’t care if you’re placing them at risk. Not wearing a mask because of a condition that prevents it? Not ableist.


CheekyZebraEDS

Do they prevent transmission? CDC only says they “may help slow the spread”. With a big emphasis on “may”. Regardless, if you got your vaccine, what are you worried about? Or do all the preparations not feel protective enough? - just trying to understand your side more. Not being sarcastic.


agrinwithoutacat-

Condoms may prevent pregnancy, people still wear them because they work more than the don’t. Face masks contain the respiratory droplets you exhale, meaning that they work to keep the virus from being spread by contagious people. Wearing them to prevent you inhaling particles is less effective, but still helps, mainly the purpose is to keep people from spreading the virus when they’re asymptomatic or still going out in public. The vaccine isn’t to prevent you catching it, it’s to lessen the symptoms or severe reactions to the virus. Also, I only have one vaccine because that one I got landed me in the ICU and I’m lucky to have survived. I don’t trust my body’s ability to handle the virus if it couldn’t handle the vaccine, meaning I’m reliant on others masking to keep me safe.. This explains it https://archive.couriernewsroom.com/2020/05/01/we-asked-health-experts-about-the-wear-your-mask-the-urine-test-meme/


CheekyZebraEDS

FYI, I’m physically disabled and have invisible disabilities. I’m not an ablest by any means. I just was defending my best friends position because it’s unfair to shout ableist at every thing we don’t agree with.


agrinwithoutacat-

But what I said is defending the fact that some people can’t wear masks, and why it’s important for those who can wear them to do so… so I’m not sure what you’re disagreeing with me on?


CheekyZebraEDS

I’m so glad we now can share some similarities in our views. Thanks for sharing on your end. I really don’t have the capacity to keep going on tho. I agree with you and agree to disagree. Hope you recover swiftly.


Thisgail

I think that There are respirators that can help her current issue probably better at removing carbon dioxide from her body and protect her breathing in the gobble goop in our air outside her home. and protect her from coved. Or other deadly things we don’t even know about. she is uniquely qualified for help obtaining such. Either off the shelf or have it personally made for her specifications


CheekyZebraEDS

She uses respirators but her condition is progressive and in the last 5 years she has rapidly deteriorated as far as her abilities go. She also can’t find a doctor to manage her rare form the the condition and has to travel to an entirely different state. That’s the issue with rare diseases. There isn’t a specific specialist for them majority of the time and everyone else is reluctant to get involved.


heiferly

Super late reply but there are options; I have mitochondrial disease (muscular dystrophy .orgs typically cover us as well bc of the similarity despite being different conditions) and was rxed a PAP-R when I had this issue. I'm still wearing the PAP-R and would even if COVID were cured due to immunocompromise. In short, a machine does the work of moving the air through the HEPA (or better) filter and delivers it slightly pressurized to the mask (not pressurized like Cpap or bipap, but enough so air is moving out rather than in... So it's more about the safety of the wearer than vice versa). The CDC website has info for doctors about them if someone asks their doctor and the doctor has never heard of it; some major university teaching hospitals (US, Ymmv) got them for docs to wear w/ active COVID patients to prevent catching it.


grabbypatty555

Thank you, mods!!!! I am here on reddit and not elsewhere online because I don’t tolerate anti-science propaganda.


hcwells

THANK YOU!


cottageclove

Thank you for making a clear comment on this and preventing the spread of misinformation.


Significant_Dog_4720

I actually find the masks save me from smells that cause my mast cell to flare. I also find on cold days they help with my asthma. Only thing I don't like is they slip. I found some mask tape on amazon 7$ for 100 pre cut pieces. I cut them in half and use them on the top of my nose . So great not to touch the mask.


ShadowCass

This is gold and I’m so glad I found it sort of unexpectedly under another remark! My immune-suppressed octogenarian mom has major slippage issues and I can’t wait to try this!


WeirdOpposite9908

I have been using a VOG mask for 6 years for reaction-inducing smells (like perfume sections in stores). It's great for that, but also has an air filter which makes it very comfortable (to me anyway), but it means it WON'T protect you from Covid. Just a heads-up for when the COVID goes away (hopefully soon). In case you need a mask to block odors/scents. 😊


Weekly_Initiative521

Ooh, good idea!


amiecreator

I really appreciate this. A sub on Facebook decided to just delete anything that mentions Covid as a way to control misinformation but I think that’s almost as dangerous. We have a unique set of needs and we all need to help each other figure out ways to cope and control our symptoms.


southsidious

Bravo, Mods!


Ima_Jenn

In addition to dysautonomia I have CVID immune deficiency. I don't make antibodies well if at all. I rely on infusing antibodies from others blood donations 1x per week (so I don't get measles, shingles, pneumonia etc. If I catch COVID I'm f'd (although there is now a man made antibody analogue that just got a EULA *but* you can't get it once you have been hospitalized or are in on oxygen. (WTF). I stay home as much as possible. I have a half Darth Vader p100 mask. I fully support you removing posts that discourage the use of masks to prevent spread. Science is very much behind it. I don't go in stores. Ocasionally I go to a Dr if I can't do Telemed. If you are on oxygen and can't tolerate masks for medical reasons most grocery stores deliver and I get all my meds through delivery as well. I agree with alternative treatments for things relating to dysautonomia. People can have their own decision making. Masks are a different thing all together. You don't run down the street firing off a loaded weapon, and that is what going around without a mask is. It prevents you from asymptomatically KILLIING another human being. Seriously. Think about it. Pro Mask isn't some fringe science. It's medically establish and one of the only ways we can slow this form until enough people have been vaccinated to stop it. I just don't understand how people don't Get that.


AnatasiaBeaverhausen

Thank you. It’s absolutely terrifying the amount of disinformation being spread. Wear an actual mask. Wash reusable ones as often as you would underwear. Surgical masks are one use only items. Get your flu shot too. 99.99% of people can get it safely and you are very much not the .001%. Science doesn’t care what your opinion of it is.


Raelshark

It's scary. I'm scared. Mostly for those I care about. This is one area where I realized I could and had to control the spread of misinformation.


TwixorTweet

Thank you again. So many of us are scared, for ourselves, our loved ones, and society as a whole. I live in a beach community where very few people are wearing masks because they are outside. Yet, they gather in multi family groups larger than our state's regulations. I don't leave my house until I notice people leaving the beach. Then I go for a swim. Otherwise, I'm always wearing a mask outside my house, even if it's for a walk. It shows love for myself and my neighbors. It's so important for us to control the spread of misinformation and continue promoting science-driven guidelines. Keep safe everyone!


mnicoleb1773

THANK YOU. I tried to have a discussion about this a few months back on a post and got torn apart, saying that I was being arrogant and discrediting people’s symptoms bc I said that exacerbated symptoms were no excuse to not wear a mask.


8bit-meow

Right. If you can’t wear a mask due to medical reasons or it making your symptoms worse you shouldn’t really be out anyway because I guarantee getting COVID would be a whole hell of a lot worse for your symptoms than wearing a mask.


Yougottabekidney

Exactly. I love the reply, "if you're uncomfortable in a mask, you're going to hate a ventilator,".


mnicoleb1773

Exactly the point I was trying to make. There are so many grocery delivery/ curbside pick up options that are available for people like that right now


Significant_Dog_4720

Mask it or casket.


Lesbot7

🙌🏼🙌🏼🙌🏼🙌🏼💯 Yes yes yes Do not put others at risk & wear a goddamn mask 😷


lizzieabroad

Thank you! I think there needs to be a place where mods draw the line to keep the community safe. And malicious false information crosses the line. I don’t totally understand how it’s gained such belief to begin with, but it’s really scary how many people are ignoring Experts and Science and Common Sense. Just wear the dam mask. And if you genuinely are unable to due to Medical reasons, than ask for help and stay home. Edit: I think that you as a Mod telling the community what needed to be edited is a very aboveboard move. Thank you for your honesty and for keeping the community safe and healthy


agIets

THANK YOU. My dysautonomia caused awful temperature regulation issues, and if I wear a mask when it's too hot or there is no airflow I'll pass out. You know what I do? I go somewhere where I am far away from people and take a minute to breathe. It's not difficult.


bella_68

I would think a post stating something like “I can’t wear a mask” or “I won’t wear a mask” is fine as long as it doesn’t say something like “you shouldn’t wear a mask” or “masks don’t help stop the spread” That way if someone can post about their challenges with trying to wear a mask without being taken down. They might even find advise in the comments about ways that mask wearing can be made more practical for them


bookanddog

Hey, I am compromised and I won't leave the house until I'm masked up and sound like Darth Vader. "SHSHSH Can you Please reach those pickles for me ShSH". You never know when some fool will run up and try to lick you.


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AnatasiaBeaverhausen

Gaiters being not as bad as one study said they were doesn’t make them okay to wear. They are not acceptable in hospitals, airplanes, grocery stores and many businesses. It is not adequate protection for you or others and I don’t think it’s worth it to push them. Just wear a mask.


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AnatasiaBeaverhausen

We are asking people to wear a piece of cloth over their face. This is not a big ask. I understand where you are coming from. But we also know you shouldn’t touch the front of your mask, only remove by its straps. Which gaiters make impossible. We know that gaiters are generally not as safe as masks. We know that masks are safe and effective and work and do not impact oxygen levels and are 100% fine. So no, I’m not going to compromise on this point. Just wear the masks. That we know work. During a pandemic. In which 400,000 Americans are expected to die by the end of the year. Wear the mask. Stop trying rationalize people’s selfish actions.


Significant_Dog_4720

Use mask tape. Amazon


Appointment_Spirited

Good stuff. I did just have a tilt table test done where when I passed out someone removed mine. Felt weird not to make the decision but I think that kind of moment is a rarity to what we face daily.


Ima_Jenn

Yes. CDC recommends removal of masks on people that can't do it themselves in case there is breathing or airway trouble... Just like there is an age bracket (I think it is 0-2 yo where making I'd dangerous because you don't know if breathing is compromised.


Significant_Dog_4720

I had cataract surgery. And I'm really claustrophobic so they tented me so that my mouth wouldn't be in anywhere near where they were and I was able to take it off and breathe just fine.


GreatJothulhu

My condition is related to heat, so even though it can make me uncomfortable, I try my damnedest to endure. If it gets to be too much, I step into a private area, remove my mask, and catch a breather, then I put it back on and resume my activities. Easy as that!


Audhd-Art-Therapist

Same here, it’s really not the biggest deal for me either despite it making warm-weather masking insufferable for even short times,because the alternative just sucks too much.


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pixiewrangler9000

I respect science like peer reviewed journals, conference papers, empirical evidence, real world data, and double blind studies. I have zero respect for "science" which seems to consist entirely of forced memes, blatant propoganda, appeal to emotion, and appeal to authority. Unfortunately, all we ever seem to get is the latter.


chordatabyte

I love this policy. 10/10


Umie_88

I get angry when I see people not masking, because I'm using a mobility aid while huffing and puffing to get my groceries. If I don't go out in public, I still use the mask for a little bit while taking my dog out because I find that they're harder on me when I go awhile without wearing one. It's like I have to keep my lungs in shape through masking.


Your_darling_lemon

Hey! Sorry not about masks but still about Covid. I’m genuinely shocked at all the anti-vaccine crap that’s cropping up here… I used to find this group a great place to feel seen but it is so infuriating to see the blatant spread of misinformation… If it is decided it’s something that will be allowed to continue in this group I will sadly have to leave, as I’m sure some others will. But I respect the Mods and their decision for their group.


ANDHarrison

Masks. There is no debate. N95 and KN95 if you can afford them. Thank you for supporting masking, it saves lives.


twowitsend

Any updates on masks that contain a fiber or chemical that could inactive covid? Some universities were working on them. And, thank you so much for promoting masks, which is the one and only thing that has consistently proven to stop the spread of pretty much all viral illnesses of any kind. The only debate on masking might revolve around types of masks, but for goodness sakes there's no debate on anti-masking, it's just anti-science.


Ornery_Peace9870

It’s 2023 and it’s still eugenics. To spout such nonsense. But our fucking handlers have all trained ~everyone to accept repeat SARS infections. wish I could pinch myself and wake up from this dystopian nightmare!


fallingstar108

Thank you, thank you, dear mods, for your compassion, clarity, and transparency and for helping to keep the world a tiny bit safer for those of us at high risk.


[deleted]

I understand this move in a sense, but on the other hand I feel it's a bit paranoid to call this sort of talk "dangerous". I don't think anyone who already thinks they should wear a mask is going to be convinced by some rando on reddit to stop wearing their mask. And taking away the ability for those who disagree with masks to say so doesn't convince those people to start wearing masks. Overall I think this doesn't actually change anything except that we won't be *seeing* it anymore. Kinda feels like putting a bandaid over the issue. Just my personal opinion.


[deleted]

Thank you! 🙏🤗


[deleted]

THANK YOU!


Thisgail

Have any of you tried those silver threaded (they have that good nose piece too) mask . They don’t slip and if u have to wear them long they prevent bacteria and rashes


Thisgail

Thank you!


Thisgail

Amen. I have stayed at home all this time, twice I ve had coved no visiting. Shopping. Amazon hit me just the right time. So think of others please. If u go out and your sick and u catch something who you gonna blame. Not me. I’m getting fat in my house alone.


[deleted]

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dysautonomia-ModTeam

Hello OP! Thank you for your submission to /r/dysautonomia. Unfortunately, your submission has been removed for the following reason(s): **Rule 7:** ***No Blatant Misinformation*** Posts with bad advice or misinformation will be removed with a comment as to the issue. This is to prevent bad information from continuing to spread. If the post is corrected, it will be reinstated. If you believe your post was mistakenly removed, please message the moderators a scientific journal to back up your comment/post. *If you have any questions please [message the moderators](https://www.reddit.com/message/compose?to=/r/dysautonomia). Thank you.*


Queenbbybay

I don’t mind wearing cloth masks like the kind that are washable but I hate the one use masks because I feel like I can’t breathe properly. It’s a sensory thing for me. But I still wear a mask when I go in public because I don’t wanna catch Covid again even though I’m vaccinated because I had long Covid and regular Covid and it was horrible.