Great read, I really get where you're coming from, but it does feel like things could be improving here a bit. Recent positives around this for me have been setting up a masked arts and crafts group for chronically ill people and as a result of that another group of mostly healthy people offering to mask at another group I run. This has led to someone else wanting to run monthly masked events at the same place. Other places in the UK are starting to run masked and air purifier music gigs and other events. Some of my masked group are making headway meeting with politicians about hospital masking and air purifiers in schools and decent mask supplies to give out to the public. I don't think it'll suddenly change everything at all but I'm hopeful we can make more safe social things for people like us! X
Thanks for reading, AP. And all that is certainly encouraging to hear! Maybe Iām just in the wrong country to have that kind of hope right now? lol, but also: š« šš«„
There's definitely a move towards more masked events and groups, without doubt a call for it. Are you on any COVID cautious groups? That's how people are linking up. Where in the UK are you? I'm in Hampshire
Iām in Somerset. Definitely havenāt found Covid cautious groups, would be very grateful for some direction! And I wouldnāt mind starting one myself.
If you search COVID cautious community on Facebook it'll bring up some national groups. I hadn't thought to do this until after I set up a group and put it out on a very local Facebook post. Probably best to post on a national group to hopefully find others near you. There wasn't anything when I posted mine but now someone who came to mine has started up a monthly social too, we're getting a good number attending!
It has been surreal to watch this pandemic from the perspective of someone who, in 1994, had an incredible future ahead of them (Stanford Masters degree, position at Stanford in disease prevention research and having been accepted to all of my top picks for my PhD.) and then everything I had worked for evaporated in a matter of a couple months. And then, in stark contrast to the internal chaos and cacophony of my life crashing down around me, silence.
Very few cared, no one understood and absolutely no one with any real power was willing consider that ME/CFS was anything other than the manifestation of some emotional glitch.
At every turn with LC, I've been both horrified and reassured. Horrified that it's happening on this scale and reassured that I in fact had experienced what I had recalled experiencing.
FWIW, I did find the very real and, for me, very treatable physical damage that had been mislabeled as ME/CFS. We even published an incredible study in the middle of the darkest COVID days and ... silence.
So yeah, gathering and being incredibly careful with your spoons is one of the essential life lessons for a person with post-infectious damage.
Being realistic about what you can and cannot do as well as figuring out what it is that you want to do.
I guess this is my long-winded way of saying that this feels like you're on the right track. Take good care of you and try not to let the indifference of others affect what you know.
Shayne, thank you for reading and for sharing your experience as well as the attending emotions and strife. What a profoundly lonely experience to go through alone, unrecognized, unsupported. I have thought about that a lot with regard to ME/CFS sufferers before the pandemic. In many ways, it was surreal to get such a life-altering, novel chronic illness alongside millions of others. But also: instant community, especially online.
Thank you for affirming my right to feel this way. And, Iād love to see your paper, if itās something you can share?
I feel like there's something to be said for recognising how different topics of activism affect you, and when something is more harming than helping you. I'm glad you have realised that this point isn't for you.
There's things in here that I disagree with but understand why you think, I think. I guess I've had the opposite experience with friends and loved ones taking it more seriously over time and not less, and more of my close friends mask (in their daily lives, not just for me) than before. This has been the result of curiousity on their end and compassion on mine, and I refuse to sell people like them short by assuming that ship has sailed for everyone. I think it's factually innacurate to claim many people incapable of understanding simply bc they themselves do not have long covid, or are not also sick, and I'm sorry you've had the experiences you've had with people. I used to believe nobody who isn't also disabled would understand or respect my chronically ill ass, and then my best friend and a few others rolled in and shook my entire worldview. They're the ones that mask now, in public when I'm not around. I have my own opinions how to approach the issue with people and what may be most effective, but it definitely doesn't work on everyone and people process that not working on their closest ones a variety of ways. A lot of us deserve better from them.
I personally refuse to beg for people online to care about me who I know don't, and have focused my own efforts on gentle education. I think about people living in that false reality and what I would want to know if I were them. it helps me conceptualise them not as an endless blob of willfully indifferent people, and I've had some lovely interactions as a result. But that's just my own choice, and I don't see people with different focuses as wrong or bad or wasting energy (not saying u do either).
Thanks for reading, J, and for your thoughtful reply. First off, I am so heartened to hear that you have friends who care enough to mask in public when youāre not around. Thatās pretty amazing! And I think uncommon. I love my friends and many have taken this seriously on my behalf and theirs. And the majority still arenāt masking in public when Iām not around. I donāt resent them for it anymore. I just appreciate what they ARE willing to do for me, and I protect myself.
I disagree that people who donāt have my specific affliction can truly understand what itās like to have it (similar to how I can try to understand what the Black or queer experience may be like, but can never fully understand because I donāt identify as such). I myself would never have even imagined how awful most of these symptoms have been before I experienced them firsthand. But I think in the end, you got my main point - not begging people at large to care for me/us, and keeping the focus on education.
Thank you for the gift you and your babies sent me. Much appreciated š
First things first - love that you included the Dick Van Dyke video. Watching him and Chris Martin on Jimmy Kimmel was one of the highlights of my month. A true treasure and constant source of joy.
Second - thank you for handling this topic respectfully and delicately. Itās such a beast to tackle as many people rightfully have big feelings attached.
Iām someone whoās still banging that drum (as Iām sure you know lol) and have been nearly daily on various social media sites for far too long. Itās discouraging that thereās still so few maskers - and so many trolls.
That said I have changed a few minds - and I want to believe Iāve changed more that I just donāt know about. I also think the window to convince people to mask up is narrowly closing given the spread of mask bans (though I sincerely hope Iām wrong)
I think the key here is knowing how it affects you and whether itās having a net positive or negative on your health. As you said many of us have dysregulated nervous systems and need to be mindful of that.
For me I find advocating for masks is generally a net positive - and I swear Iām immune (pardon the poor choice of word) to the various troll comments at this point. So I continue in the hopes that I reach a few people and that they in turn reach a few people and eventfullyā¦ we have more maskers.
There are other subjects I find much harder on my spoons and nervous system - and those I have to pay closer attention to. Learning which topics are safe and which ones require more self care can be a battle in and of itself!
I hope youāre doing ok after writing this one and Iām sending some extra š„
Thank you for reading and for receiving my words in the spirit in which I intended. This post was a ton of work because I just couldnāt word vomit my feelings; I have so appreciated the spoonie connections I made here (and youāre a big part of that), and I did not want to alienate anyone.
I love that youāve changed some minds! And I love how aware you are that this topic (and its trolls) donāt trigger you as much as others in our disease milieu do. (Though now Iām definitely interested in comparing notes on what does drain you! But that might be a rabbit hole and/or more energy than you want to expend, which I respect).
Keep beating your drum! And Iāll beat mine. And somehow, along with the other spoonies, weāll have a whole percussion section of our own š„šŖš„ š
Aww I love this Amy! A whole percussion section of spoonies changing the world!
We could definitely chat about what drains my energy more - though Iām currently in a huge flare. Christmas always does this to me and I wish I could figure out why. Itās just another day to me - I literally donāt do anything different - yet I get horribly sick every year. I think my neighbours must do something my mast cells really donāt like.
Thank you for all the effort you put into this piece - itās an important reminder of the need to really assess where youāre putting your energy and effort. We have so few spoons - we canāt be putting them places that leave us with empty drawers!
Iām sorry to hear about your mystery flare! Iāve talked with another long hauler friend about how the unpredictability of these illnesses might be the cruelest part. Could it be a subconscious emotional response to the holiday? Or do you share walls with neighbors? Maybe they burn smelly candles or cook something very specific and the smell seeps through the walls.
Oh I share walls. And itās really dense living. Iām right in the downtown core and just surrounded by people. My window looks into someone elseās window and there are over 1000 people in my building. Itās practically a mini city.
So I know thatās what it is because I have an air monitor and my VOCs go really high at the holidays. I just donāt know why. I canāt place which side itās coming from so I canāt even try and talk to them. Sigh.
Air purifiers are great for particulate matter but not so much for VOCs. Spoke to an indoor air quality expert who recommended a VOC specific filter - going to give that a try and cross my crossables it helps because I feel like Iām being slowly poisoned and my mast cells are none too happy about it.
You have to be a full time detective with these conditions eh?
Me too! Itās basically a massive cylinder of charcoal that you attach a fan to - but a number of people have reported success. Plus neighbours on both sides smoke (though that oddly doesnāt seem to drive the VOCs as much as whatever else is happening) and while my HEPAs lower the PMs quickly I can still smell it. So hopefully it helps with that too!
Thanks so much for the mention! It was a happy surprise!
I wholeheartedly agree with you. I donāt have the bandwidth to be upset anymore. Itās also very helpful to remind those of us who maybe donāt realize the toll staying angry has on our bodies. I love that you mention this. My nervous system is too sensitive to handle being upset in any capacity, so picking battles is an important part of managing this illness. The world at large has moved on, that ship has sailed and there are still fights we can strive to actually win.
Thank you for taking the time to write this! š I have found myself in a similar boat - especially when it comes to spoonies judging other spoonies about their amount of mask usage. It feels like the 99th percentile of covid-cautious yelling at the 98th percentile. Everyone has their different levels of comfort for this incredibly complex and difficult illness journey. So itās discouraging to see chronically ill people attacking one another on how exactly they should go about this. We barely have the spoons to live, let alone argue/feel guilty about hitting a perfect score with risk-protection.
From a fellow perspective with long COVID and depression: I personally feel the need to mask enough to feel like I am doing my best to protect myself and others from future infections. I also need to find little bits of normalcy so my mental health doesnāt completely plummet. Getting COVID again would be bad for my health AND so would getting so depressed that I donāt want to live anymore. Itās all very complex and I wish everyone the least-difficult road to finding the right balance in this journey.
Your piece shows nuance and empathy on this subject that is too often (in my option) portrayed as black&white - it's refreshing! Great work!
Wow, Joe - thanks for all that! It means a lot. And thank you for sharing your personal perspective on balancing LC risks with depression risks. I hadnāt considered it in quite that light, although as a before-times extrovert, I realize I am balancing LC risks with my own need to feed what fills my cup too (socializing). I guess Iām warding off the blues in my own way, while admitting I donāt suffer from depression so itās not quite the same thing.
I have such genuine respect and care for the fellow spoonies Iāve met along the way, so it was important to me to take the time necessary to strike the chords carefully here. Thus this post took many hours over many days, but itās all been worth it because of comments like yours and others here in the comment section. This post has gotten more engagement than most of my others; another sign that it needed to be written. Anyway, thank you for recognizing and appreciating that!
I have moved from fighting with people about wearing a mask in 2022 due to stress of fighting with people about masking makes me tired. I am a person who lives with complex disabilities. I would rather put my energy fighting for remote work, telehealth, etc for the disability community which would not have happened otherwise due to COVID. Also, not everyone can wear a mask and masking can create issues of accessibility for Deaf/HoH folks who read lips. And clear masks fog up so they are not helpful.
Thatās an excellent point, Nieta. I was going to make it myself but my piece was just getting too long. 2020 was not a great year for a colleague of mine who is Deaf and reads lips. I remember in 2021, I unmasked at a large event just so I could communicate with her, yet I felt intensely anxious about taking the risk back then.
I feel similar in respect of the energy (and fight) that goes into this understandable argument. Itās a lot for the nervous system and like you say, no healing can happen when weāre in fight mode.
I ended up writing about my reflections on āthe day of diagnosisā this week and Iāve noticed how loaded with anger and blame my statements about my experienced with the healthcare system (nhs) are.
Anger is valid. Iām trying my best to create some space for it with a goal of using it to fuel creativity (thereby bringing about change). But the blame I find, is disempowering. And certainly doesnāt serve anyone. Me or anyone in the community.
Itās deep work we are doing. No known way forward and much to navigate.
As always, I love the way you put this across and stepped out to speak your truth. Thereās space for all of us. Space for opposing views, beliefs and opinions. Weāll all benefit if we can make sure they align with what it is we truly wantš
Thank you Amber as always for your insights. I completely agree that anger can be good fuel for change, but at some point tips over into dysregulation and disempowerment. Excellent point you make.
I get where you're coming from, but I know too much about how COVID functions now to just quietly accept when people I care about obediently line up to submit themselves to the slow genocide of the working class. We should still be advocating for community spaces to be masked because otherwise, people with disabilities and chronic illness do not have equal access to those spaces. There are a lot of people with disabilities who can't afford even the risk of illness, and the the fact that our population has been deliberately misinformed by the government of what this is means we can't just give up. People deserve to live in a world that's accessible, where we can gather as human beings without it turning into a super-spreader event.
I agree with everything youāre saying. People deserve all of that, itās true. And I also know too much; Iāve spent five years obsessively learning about it. Advocacy has its place, as Iāve said in the post. But Iām also a realist. No oneās listening to our cries of injustice here, especially since January 20th. Iām in self-preservation mode, which includes protecting my energy for battles where I have a shot. I wish you well as you continue on.
Thank you for sharing what youāve learned from dealing with horrible long Covid. Iām so saddened for all whoāve experienced extended debilitation and denial from society, and the many more who will eventually. Please hold onto your humor as you continue to live with hope, despite the current societal climate! šš»
It was a bit surreal a week ago when we saw the first pos test between us, ever. A bit of denial at first, because we stay up to date on shots, he has already safely navigated 4 different workplace outbreaks, wears masks on regular airport/plane travel still, and I wear them always inside in public due to significant asthma responses to any virus. I started with those very uncomfortable older N95 masks a decade before Covid for air travel at my specialist recommendation and never got sick 2-3 days after a flight again. About three years before Covid, I started wearing whimsical cloth masks while tutoring students during flu season and in church services if I heard anyone coughing. So, I knew and my husband knew, that those preventative actions helped me be healthy more often! I think it was this history that has helped him continue to mask with travel even if no one else did in summer months, and he only ever sees 3or 4 others now masking on his flights during winter months. But heās given up masking just generally in public, while I usually still do, and given the timing I think a recent indoor event we were both at with people coughing is maybe the source for him.
Back to nowā¦we missed early symptoms he had (busy holiday season??) so didnāt start normal precautions inside our home early enough for me to miss out on the experience. Anyway, itās day 12 for him and heās recovering but not over it yet. Heās 66 this week but no underlying conditions and fit, and since we found out his Covid so late (likely end of day 5) he chose not to try to scramble to get the antiviral. Itās Day 11 and heās recovering well, but heās never been sick more than 3-4 days in 43 year of marriage. Iām on Day 6 (2nd day on Paxlovid) and hopeful. What you shared today on the emotional regulation window was really helpful, especially now when what weāve avoided for years finally caught us. Iām finding that wrapping the grandkids gifts for our now delayed celebration here, while listening to Christmas music or the occasional classic or corny seasonal movie seems to help.
Anyway, Iām sorry this is so personal; mostly I just want to thank you for your honest courage and perseverance throughout long Covid, and let you know many do care and are trying to prevent for ourselves and to protect others around us. Thank you also for the list of sources here for us to learn from. May you keep finding the moments of joy in life on this hard journey.š
Barbara, thank you for reading and for your kind words of support. Ugh, Iām sorry that you and your husband just lost your āNOVIDā status. It certainly does feel like it comes for all of us eventually (my 63yo husband is still a NOVID and Iām just waiting to see what happens).
I know youāre probably past the worst of it (š¤š»), but this post by Nicole has some great advice for long haulers who get reinfected, based on her own recent experience. Itās great advice for anyone who catches COVID - long hauler or not - who want to avoid becoming a long hauler or becoming one with worse symptoms: https://open.substack.com/pub/mylongrecovery/p/so-i-got-covid-again?r=o3zsi&utm_medium=ios
I thought this was well written with lots of nuance. I am also on the same boat. I don't spend my energy convincing people to change their whole lifestyles and worldview, it's not realistic in my life, but I take precautions when I can (ask people to test before we meet, etc.).
I also think, as with any activism, sometimes our COVID activism can be somewhat shame-based, and that usually do not change people mind. I understand the anger. I feel the anger. But telling people (including other disabled people who do not take precautions) they are heartless and choosing to kill disabled people tend to shut people off.
I have many positive thoughts about your post and want to say more but I think you have enough long comments already :)
Thanks so much, Buffie! I appreciate your supportive comments.
Your comment about shaming is spot on. It reminds me of a meme I have saved. It says: āshaming someone into action creates acting. Inspiring someone into action creates change.ā I agree with you; people donāt respond to being lectured at or condescended to. Even if thatās not the intention, if thatās how it feels, then it wonāt work.
Something odd I've noticed (100% anecdotal): some people are more receptive to talking about masking when it's de-coupled from COVID. I like keeping masks on hand for poor air quality (wildfire smoke!). And, gosh, they're useful to wear when cleaning the litterbox or performing other unpleasant-smelling chores! And remember in 2024 when there was that chemical plant fire in Atlanta? They're so useful to have on hand, you never know when you may need one...
I think youāre right - COVID has become such a lightning rod, that itās probably more effective to find a back door in. I wore a mask in my house a few weeks ago while dusting fireplace ash off my furniture. And a mask kept my face warm a few days ago while walking around a chilly NYC. They are definitely handy to have around.
As a LC-er since Jan 2022, I feel similarly to you and it's refreshing to read about a kind of "middle way" in the responses we have to those around us who do not mask. I don't think I know anyone who masks in public places anymore, except on very rare and specific occasions and having shared a few things on socia media which have not been acknowledged by the majority of people in my friend/follower lists, I've decided to spend my energy elsewhere. Thanks for taking time and energy to write.
Thank you for reading and for sharing that. Itās been oddly comforting to know that my own observations of what the world out there is doing or not doing seems to track with many othersā own observations. Weāve chosen realistic but hopeful outlooks in some ways - realistic about what others are no longer willing to do, hopeful about our own lives and how we can take control of our risk mitigation and our energy expenditure. Itās nice to have your company āŗļø
Thank you for this excellent and as always thoughtful post, Amy. So much truth in here.
I very much agree with your take on activismās impact on the nervous system. I canāt speak for anyone else but for myself, but I know itās true for me. It is one reason why Iāve chosen to focus my āgivingā regarding LC and ME/CFS (of time and energy, particularly) on sharing with other patients what has helped me recover, vs fighting for awareness. I donāt have enough bandwidth for both, and helping others recover even the tiniest bit is far more friendly to my nervous system than screaming into the void.
I have deep respect and gratitude for everyone who focuses their limited spoons on spreading awareness and fighting for recognition. It is so needed, and Iāve benefited from your work immensely. So to everyone who needs to hear this (saying this because I know this is an exceptionally kind and selfless community) - please remember it is very fair to postpone the fighting, either for a bit, or until youāre well again, or even forever. And if you do choose to do it regardless - thank you š
What a beautiful comment, Nicole. Thank you for being so thoughtful and supportive, both of me and of anyone who might disagree with me. Fighting the fight is just where some people are right now. I know itās where many wish they could be, if not for fatigue and cognitive issues. Thank you for recognizing all of us š
I appreciate your insights, but, of course, have different life experiences.
You mention, "We already know that a key aspect of our illnesses is dysautonomia, or nervous systems that are stuck in the sympathetic, fight-or-flight, āonā position."
It's useful to recognize that if a person was experiencing PTSD or similar prior to C-19, that they, like those with other vulnerabilities, might be more adversely effected by a viral infection that could attack the nervous system.
I'm familiar with issues of being stuck in a sympathetic state, and most assuredly about how that effects physiology and overall wellness. For me, years of qigong and some great therapy (and also years of training as a trauma therapist myself) have freed me from getting stuck in a sympathetic state. Below I will include links to peer reviewed papers that describe the clinical trials that I ran while at Dartmouth, as well as some other work related to body mind therapies and stress and PTSD.
I still live with various symptoms of Long COVID. They wax and wane with life's tempests and opportunities for tranquility and rest. Your comment makes me realize that I likely need to focus more attention in my posts and outreach on the nervous system.
Thank you for all that you put into these posts Amy. You are so very important to our community.
For anyone interested in bodymind therapies for autonomic dysfunction, here's a list of relevant - open access- papers on how we addressed subjects in studies and with clients.
That I have Long COVID, but am largely free of nervous system complications, may be just luck. Or, training in qigong, bodymind therapies like yoga and meditation may help to rescue some individuals. Below, 'Meditative Movement' is an alternative term for qigong.
Meditative movement for depression and anxiety.
Payne P, Crane-Godreau MA.
Front Psychiatry. 2013 Jul 24;4:71. doi: 10.3389/fpsyt.2013.00071. eCollection 2013.
PMID: 23898306 Free PMC article.
Meditative Movement as a Treatment for Pulmonary Dysfunction in Flight Attendants Exposed to Second-Hand Cigarette Smoke: Study Protocol for a Randomized Trial.
Payne P, Zava D, Fiering S, Crane-Godreau M.
Front Psychiatry. 2016 Mar 22;7:38. doi: 10.3389/fpsyt.2016.00038. eCollection 2016.
PMID: 27047398 Free PMC article. Review.
Digital Delivery of Meditative Movement Training Improved Health of Cigarette-Smoke-Exposed Subjects.
Payne P, Fiering S, Zava D, Gould TJ, Brown A, Hage P, Gaudet C, Crane-Godreau M.
Front Public Health. 2018 Oct 19;6:282. doi: 10.3389/fpubh.2018.00282. eCollection 2018. PMID: 23898306
Somatic experiencing: using interoception and proprioception as core elements of trauma therapy.
Payne P, Levine PA, Crane-Godreau MA.
Front Psychol. 2015 Feb 4;6:93. doi: 10.3389/fpsyg.2015.00093. eCollection 2015.
PMID: 25699005 Free PMC article.
The preparatory set: a novel approach to understanding stress, trauma, and the bodymind therapies.
Payne P, Crane-Godreau MA.
Front Hum Neurosci. 2015 Apr 1;9:178. doi: 10.3389/fnhum.2015.00178. eCollection 2015.
PMID: 25883565 Free PMC article.
Effectiveness of a Novel Qigong Meditative Movement Practice for Impaired Health in Flight Attendants Exposed to Second-Hand Cigarette Smoke.
Wow, Mardi - incredible body of work here (and I know this is just the tip of the iceberg). Thank you for your insights on trauma and the nervous system, and for all of these great resources. I will check them out as I am hoping to pivot my career (someday) in this direction.
Excellent article! Thank you for using some of your spoons to write this!
Is there another establishment I can support you through? I do not shop at Amazon. Jeff Bezos gives money to Trump. Also there is currently a strike by Amazon and Starbucks employees.
I've been shopping at iHerb for my supplements and some other stuff - not affiliated in any way - just attempting to give you one option to Amazon.
Thank you so much for reading and taking the time to get where I was coming from! (I love your username, BTW š). You know, I have grappled with this Amazon thing a bunch over the past year. The problem is, I canāt find another retailer that is ethical and has a wish list function that doesnāt reveal my address to people. I also canāt lead a trail to my name and address because disability has investigators. I canāt risk them learning about this newsletter. I would love any ideas you might have? And thank you for wanting to send something. That alone means a lot!
Great read, I really get where you're coming from, but it does feel like things could be improving here a bit. Recent positives around this for me have been setting up a masked arts and crafts group for chronically ill people and as a result of that another group of mostly healthy people offering to mask at another group I run. This has led to someone else wanting to run monthly masked events at the same place. Other places in the UK are starting to run masked and air purifier music gigs and other events. Some of my masked group are making headway meeting with politicians about hospital masking and air purifiers in schools and decent mask supplies to give out to the public. I don't think it'll suddenly change everything at all but I'm hopeful we can make more safe social things for people like us! X
Thanks for reading, AP. And all that is certainly encouraging to hear! Maybe Iām just in the wrong country to have that kind of hope right now? lol, but also: š« šš«„
I am in the UK and would LOVE LOVE LOVE to connect with these communities and happenings!!
There's definitely a move towards more masked events and groups, without doubt a call for it. Are you on any COVID cautious groups? That's how people are linking up. Where in the UK are you? I'm in Hampshire
Iām in Somerset. Definitely havenāt found Covid cautious groups, would be very grateful for some direction! And I wouldnāt mind starting one myself.
If you search COVID cautious community on Facebook it'll bring up some national groups. I hadn't thought to do this until after I set up a group and put it out on a very local Facebook post. Probably best to post on a national group to hopefully find others near you. There wasn't anything when I posted mine but now someone who came to mine has started up a monthly social too, we're getting a good number attending!
I only saw one group, which I joined.
It has been surreal to watch this pandemic from the perspective of someone who, in 1994, had an incredible future ahead of them (Stanford Masters degree, position at Stanford in disease prevention research and having been accepted to all of my top picks for my PhD.) and then everything I had worked for evaporated in a matter of a couple months. And then, in stark contrast to the internal chaos and cacophony of my life crashing down around me, silence.
Very few cared, no one understood and absolutely no one with any real power was willing consider that ME/CFS was anything other than the manifestation of some emotional glitch.
At every turn with LC, I've been both horrified and reassured. Horrified that it's happening on this scale and reassured that I in fact had experienced what I had recalled experiencing.
FWIW, I did find the very real and, for me, very treatable physical damage that had been mislabeled as ME/CFS. We even published an incredible study in the middle of the darkest COVID days and ... silence.
So yeah, gathering and being incredibly careful with your spoons is one of the essential life lessons for a person with post-infectious damage.
Being realistic about what you can and cannot do as well as figuring out what it is that you want to do.
I guess this is my long-winded way of saying that this feels like you're on the right track. Take good care of you and try not to let the indifference of others affect what you know.
Shayne, thank you for reading and for sharing your experience as well as the attending emotions and strife. What a profoundly lonely experience to go through alone, unrecognized, unsupported. I have thought about that a lot with regard to ME/CFS sufferers before the pandemic. In many ways, it was surreal to get such a life-altering, novel chronic illness alongside millions of others. But also: instant community, especially online.
Thank you for affirming my right to feel this way. And, Iād love to see your paper, if itās something you can share?
It's now freely available: https://academic.oup.com/jcem/article/106/12/e5147/6319899
Let me know if you have any questions ( about the study or how it came together and/ or my role).
Thanks very much, Shayne - will do!
Let me check and see if it is still paywalled. If so, I could email you or perhaps I could attach it to a dm? Let
me do some looking.
I feel like there's something to be said for recognising how different topics of activism affect you, and when something is more harming than helping you. I'm glad you have realised that this point isn't for you.
There's things in here that I disagree with but understand why you think, I think. I guess I've had the opposite experience with friends and loved ones taking it more seriously over time and not less, and more of my close friends mask (in their daily lives, not just for me) than before. This has been the result of curiousity on their end and compassion on mine, and I refuse to sell people like them short by assuming that ship has sailed for everyone. I think it's factually innacurate to claim many people incapable of understanding simply bc they themselves do not have long covid, or are not also sick, and I'm sorry you've had the experiences you've had with people. I used to believe nobody who isn't also disabled would understand or respect my chronically ill ass, and then my best friend and a few others rolled in and shook my entire worldview. They're the ones that mask now, in public when I'm not around. I have my own opinions how to approach the issue with people and what may be most effective, but it definitely doesn't work on everyone and people process that not working on their closest ones a variety of ways. A lot of us deserve better from them.
I personally refuse to beg for people online to care about me who I know don't, and have focused my own efforts on gentle education. I think about people living in that false reality and what I would want to know if I were them. it helps me conceptualise them not as an endless blob of willfully indifferent people, and I've had some lovely interactions as a result. But that's just my own choice, and I don't see people with different focuses as wrong or bad or wasting energy (not saying u do either).
Kitty Amy says hi! I hope I didn't come off mad or anything btw, cause I'm not, I've just had a different experience of some stuff and wanted to share
Thanks for reading, J, and for your thoughtful reply. First off, I am so heartened to hear that you have friends who care enough to mask in public when youāre not around. Thatās pretty amazing! And I think uncommon. I love my friends and many have taken this seriously on my behalf and theirs. And the majority still arenāt masking in public when Iām not around. I donāt resent them for it anymore. I just appreciate what they ARE willing to do for me, and I protect myself.
I disagree that people who donāt have my specific affliction can truly understand what itās like to have it (similar to how I can try to understand what the Black or queer experience may be like, but can never fully understand because I donāt identify as such). I myself would never have even imagined how awful most of these symptoms have been before I experienced them firsthand. But I think in the end, you got my main point - not begging people at large to care for me/us, and keeping the focus on education.
Thank you for the gift you and your babies sent me. Much appreciated š
First things first - love that you included the Dick Van Dyke video. Watching him and Chris Martin on Jimmy Kimmel was one of the highlights of my month. A true treasure and constant source of joy.
Second - thank you for handling this topic respectfully and delicately. Itās such a beast to tackle as many people rightfully have big feelings attached.
Iām someone whoās still banging that drum (as Iām sure you know lol) and have been nearly daily on various social media sites for far too long. Itās discouraging that thereās still so few maskers - and so many trolls.
That said I have changed a few minds - and I want to believe Iāve changed more that I just donāt know about. I also think the window to convince people to mask up is narrowly closing given the spread of mask bans (though I sincerely hope Iām wrong)
I think the key here is knowing how it affects you and whether itās having a net positive or negative on your health. As you said many of us have dysregulated nervous systems and need to be mindful of that.
For me I find advocating for masks is generally a net positive - and I swear Iām immune (pardon the poor choice of word) to the various troll comments at this point. So I continue in the hopes that I reach a few people and that they in turn reach a few people and eventfullyā¦ we have more maskers.
There are other subjects I find much harder on my spoons and nervous system - and those I have to pay closer attention to. Learning which topics are safe and which ones require more self care can be a battle in and of itself!
I hope youāre doing ok after writing this one and Iām sending some extra š„
Thank you for reading and for receiving my words in the spirit in which I intended. This post was a ton of work because I just couldnāt word vomit my feelings; I have so appreciated the spoonie connections I made here (and youāre a big part of that), and I did not want to alienate anyone.
I love that youāve changed some minds! And I love how aware you are that this topic (and its trolls) donāt trigger you as much as others in our disease milieu do. (Though now Iām definitely interested in comparing notes on what does drain you! But that might be a rabbit hole and/or more energy than you want to expend, which I respect).
Keep beating your drum! And Iāll beat mine. And somehow, along with the other spoonies, weāll have a whole percussion section of our own š„šŖš„ š
Aww I love this Amy! A whole percussion section of spoonies changing the world!
We could definitely chat about what drains my energy more - though Iām currently in a huge flare. Christmas always does this to me and I wish I could figure out why. Itās just another day to me - I literally donāt do anything different - yet I get horribly sick every year. I think my neighbours must do something my mast cells really donāt like.
Thank you for all the effort you put into this piece - itās an important reminder of the need to really assess where youāre putting your energy and effort. We have so few spoons - we canāt be putting them places that leave us with empty drawers!
Iām sorry to hear about your mystery flare! Iāve talked with another long hauler friend about how the unpredictability of these illnesses might be the cruelest part. Could it be a subconscious emotional response to the holiday? Or do you share walls with neighbors? Maybe they burn smelly candles or cook something very specific and the smell seeps through the walls.
Oh I share walls. And itās really dense living. Iām right in the downtown core and just surrounded by people. My window looks into someone elseās window and there are over 1000 people in my building. Itās practically a mini city.
So I know thatās what it is because I have an air monitor and my VOCs go really high at the holidays. I just donāt know why. I canāt place which side itās coming from so I canāt even try and talk to them. Sigh.
Air purifiers are great for particulate matter but not so much for VOCs. Spoke to an indoor air quality expert who recommended a VOC specific filter - going to give that a try and cross my crossables it helps because I feel like Iām being slowly poisoned and my mast cells are none too happy about it.
You have to be a full time detective with these conditions eh?
WOWā¦you sure do. Iāll be curious to know if the VOC filter helps.
Crossing my crossables š¤
Me too! Itās basically a massive cylinder of charcoal that you attach a fan to - but a number of people have reported success. Plus neighbours on both sides smoke (though that oddly doesnāt seem to drive the VOCs as much as whatever else is happening) and while my HEPAs lower the PMs quickly I can still smell it. So hopefully it helps with that too!
Thanks so much for the mention! It was a happy surprise!
I wholeheartedly agree with you. I donāt have the bandwidth to be upset anymore. Itās also very helpful to remind those of us who maybe donāt realize the toll staying angry has on our bodies. I love that you mention this. My nervous system is too sensitive to handle being upset in any capacity, so picking battles is an important part of managing this illness. The world at large has moved on, that ship has sailed and there are still fights we can strive to actually win.
Lastly, I always love a good cat in a box shot!
Haha, thanks Keisha! What is it about cats and boxes? No need to buy expensive cat toys š¹.
Thank you for reading and for your words of validation. That means a lot. And, great gift guide! š«¶š»
The best part is watching them try to squeeze into š¦ s that are clearly too small for them. š šš
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Thank you for taking the time to write this! š I have found myself in a similar boat - especially when it comes to spoonies judging other spoonies about their amount of mask usage. It feels like the 99th percentile of covid-cautious yelling at the 98th percentile. Everyone has their different levels of comfort for this incredibly complex and difficult illness journey. So itās discouraging to see chronically ill people attacking one another on how exactly they should go about this. We barely have the spoons to live, let alone argue/feel guilty about hitting a perfect score with risk-protection.
From a fellow perspective with long COVID and depression: I personally feel the need to mask enough to feel like I am doing my best to protect myself and others from future infections. I also need to find little bits of normalcy so my mental health doesnāt completely plummet. Getting COVID again would be bad for my health AND so would getting so depressed that I donāt want to live anymore. Itās all very complex and I wish everyone the least-difficult road to finding the right balance in this journey.
Your piece shows nuance and empathy on this subject that is too often (in my option) portrayed as black&white - it's refreshing! Great work!
Wow, Joe - thanks for all that! It means a lot. And thank you for sharing your personal perspective on balancing LC risks with depression risks. I hadnāt considered it in quite that light, although as a before-times extrovert, I realize I am balancing LC risks with my own need to feed what fills my cup too (socializing). I guess Iām warding off the blues in my own way, while admitting I donāt suffer from depression so itās not quite the same thing.
I have such genuine respect and care for the fellow spoonies Iāve met along the way, so it was important to me to take the time necessary to strike the chords carefully here. Thus this post took many hours over many days, but itās all been worth it because of comments like yours and others here in the comment section. This post has gotten more engagement than most of my others; another sign that it needed to be written. Anyway, thank you for recognizing and appreciating that!
I have moved from fighting with people about wearing a mask in 2022 due to stress of fighting with people about masking makes me tired. I am a person who lives with complex disabilities. I would rather put my energy fighting for remote work, telehealth, etc for the disability community which would not have happened otherwise due to COVID. Also, not everyone can wear a mask and masking can create issues of accessibility for Deaf/HoH folks who read lips. And clear masks fog up so they are not helpful.
Thatās an excellent point, Nieta. I was going to make it myself but my piece was just getting too long. 2020 was not a great year for a colleague of mine who is Deaf and reads lips. I remember in 2021, I unmasked at a large event just so I could communicate with her, yet I felt intensely anxious about taking the risk back then.
I feel similar in respect of the energy (and fight) that goes into this understandable argument. Itās a lot for the nervous system and like you say, no healing can happen when weāre in fight mode.
I ended up writing about my reflections on āthe day of diagnosisā this week and Iāve noticed how loaded with anger and blame my statements about my experienced with the healthcare system (nhs) are.
Anger is valid. Iām trying my best to create some space for it with a goal of using it to fuel creativity (thereby bringing about change). But the blame I find, is disempowering. And certainly doesnāt serve anyone. Me or anyone in the community.
Itās deep work we are doing. No known way forward and much to navigate.
As always, I love the way you put this across and stepped out to speak your truth. Thereās space for all of us. Space for opposing views, beliefs and opinions. Weāll all benefit if we can make sure they align with what it is we truly wantš
Thank you Amber as always for your insights. I completely agree that anger can be good fuel for change, but at some point tips over into dysregulation and disempowerment. Excellent point you make.
I get where you're coming from, but I know too much about how COVID functions now to just quietly accept when people I care about obediently line up to submit themselves to the slow genocide of the working class. We should still be advocating for community spaces to be masked because otherwise, people with disabilities and chronic illness do not have equal access to those spaces. There are a lot of people with disabilities who can't afford even the risk of illness, and the the fact that our population has been deliberately misinformed by the government of what this is means we can't just give up. People deserve to live in a world that's accessible, where we can gather as human beings without it turning into a super-spreader event.
I agree with everything youāre saying. People deserve all of that, itās true. And I also know too much; Iāve spent five years obsessively learning about it. Advocacy has its place, as Iāve said in the post. But Iām also a realist. No oneās listening to our cries of injustice here, especially since January 20th. Iām in self-preservation mode, which includes protecting my energy for battles where I have a shot. I wish you well as you continue on.
Thank you for sharing what youāve learned from dealing with horrible long Covid. Iām so saddened for all whoāve experienced extended debilitation and denial from society, and the many more who will eventually. Please hold onto your humor as you continue to live with hope, despite the current societal climate! šš»
It was a bit surreal a week ago when we saw the first pos test between us, ever. A bit of denial at first, because we stay up to date on shots, he has already safely navigated 4 different workplace outbreaks, wears masks on regular airport/plane travel still, and I wear them always inside in public due to significant asthma responses to any virus. I started with those very uncomfortable older N95 masks a decade before Covid for air travel at my specialist recommendation and never got sick 2-3 days after a flight again. About three years before Covid, I started wearing whimsical cloth masks while tutoring students during flu season and in church services if I heard anyone coughing. So, I knew and my husband knew, that those preventative actions helped me be healthy more often! I think it was this history that has helped him continue to mask with travel even if no one else did in summer months, and he only ever sees 3or 4 others now masking on his flights during winter months. But heās given up masking just generally in public, while I usually still do, and given the timing I think a recent indoor event we were both at with people coughing is maybe the source for him.
Back to nowā¦we missed early symptoms he had (busy holiday season??) so didnāt start normal precautions inside our home early enough for me to miss out on the experience. Anyway, itās day 12 for him and heās recovering but not over it yet. Heās 66 this week but no underlying conditions and fit, and since we found out his Covid so late (likely end of day 5) he chose not to try to scramble to get the antiviral. Itās Day 11 and heās recovering well, but heās never been sick more than 3-4 days in 43 year of marriage. Iām on Day 6 (2nd day on Paxlovid) and hopeful. What you shared today on the emotional regulation window was really helpful, especially now when what weāve avoided for years finally caught us. Iām finding that wrapping the grandkids gifts for our now delayed celebration here, while listening to Christmas music or the occasional classic or corny seasonal movie seems to help.
Anyway, Iām sorry this is so personal; mostly I just want to thank you for your honest courage and perseverance throughout long Covid, and let you know many do care and are trying to prevent for ourselves and to protect others around us. Thank you also for the list of sources here for us to learn from. May you keep finding the moments of joy in life on this hard journey.š
Barbara, thank you for reading and for your kind words of support. Ugh, Iām sorry that you and your husband just lost your āNOVIDā status. It certainly does feel like it comes for all of us eventually (my 63yo husband is still a NOVID and Iām just waiting to see what happens).
I know youāre probably past the worst of it (š¤š»), but this post by Nicole has some great advice for long haulers who get reinfected, based on her own recent experience. Itās great advice for anyone who catches COVID - long hauler or not - who want to avoid becoming a long hauler or becoming one with worse symptoms: https://open.substack.com/pub/mylongrecovery/p/so-i-got-covid-again?r=o3zsi&utm_medium=ios
Thank you so much!
I thought this was well written with lots of nuance. I am also on the same boat. I don't spend my energy convincing people to change their whole lifestyles and worldview, it's not realistic in my life, but I take precautions when I can (ask people to test before we meet, etc.).
I also think, as with any activism, sometimes our COVID activism can be somewhat shame-based, and that usually do not change people mind. I understand the anger. I feel the anger. But telling people (including other disabled people who do not take precautions) they are heartless and choosing to kill disabled people tend to shut people off.
I have many positive thoughts about your post and want to say more but I think you have enough long comments already :)
Good day!
Thanks so much, Buffie! I appreciate your supportive comments.
Your comment about shaming is spot on. It reminds me of a meme I have saved. It says: āshaming someone into action creates acting. Inspiring someone into action creates change.ā I agree with you; people donāt respond to being lectured at or condescended to. Even if thatās not the intention, if thatās how it feels, then it wonāt work.
Something odd I've noticed (100% anecdotal): some people are more receptive to talking about masking when it's de-coupled from COVID. I like keeping masks on hand for poor air quality (wildfire smoke!). And, gosh, they're useful to wear when cleaning the litterbox or performing other unpleasant-smelling chores! And remember in 2024 when there was that chemical plant fire in Atlanta? They're so useful to have on hand, you never know when you may need one...
I think youāre right - COVID has become such a lightning rod, that itās probably more effective to find a back door in. I wore a mask in my house a few weeks ago while dusting fireplace ash off my furniture. And a mask kept my face warm a few days ago while walking around a chilly NYC. They are definitely handy to have around.
As a LC-er since Jan 2022, I feel similarly to you and it's refreshing to read about a kind of "middle way" in the responses we have to those around us who do not mask. I don't think I know anyone who masks in public places anymore, except on very rare and specific occasions and having shared a few things on socia media which have not been acknowledged by the majority of people in my friend/follower lists, I've decided to spend my energy elsewhere. Thanks for taking time and energy to write.
Thank you for reading and for sharing that. Itās been oddly comforting to know that my own observations of what the world out there is doing or not doing seems to track with many othersā own observations. Weāve chosen realistic but hopeful outlooks in some ways - realistic about what others are no longer willing to do, hopeful about our own lives and how we can take control of our risk mitigation and our energy expenditure. Itās nice to have your company āŗļø
Thank you for this excellent and as always thoughtful post, Amy. So much truth in here.
I very much agree with your take on activismās impact on the nervous system. I canāt speak for anyone else but for myself, but I know itās true for me. It is one reason why Iāve chosen to focus my āgivingā regarding LC and ME/CFS (of time and energy, particularly) on sharing with other patients what has helped me recover, vs fighting for awareness. I donāt have enough bandwidth for both, and helping others recover even the tiniest bit is far more friendly to my nervous system than screaming into the void.
I have deep respect and gratitude for everyone who focuses their limited spoons on spreading awareness and fighting for recognition. It is so needed, and Iāve benefited from your work immensely. So to everyone who needs to hear this (saying this because I know this is an exceptionally kind and selfless community) - please remember it is very fair to postpone the fighting, either for a bit, or until youāre well again, or even forever. And if you do choose to do it regardless - thank you š
What a beautiful comment, Nicole. Thank you for being so thoughtful and supportive, both of me and of anyone who might disagree with me. Fighting the fight is just where some people are right now. I know itās where many wish they could be, if not for fatigue and cognitive issues. Thank you for recognizing all of us š
Hi Amy,
I appreciate your insights, but, of course, have different life experiences.
You mention, "We already know that a key aspect of our illnesses is dysautonomia, or nervous systems that are stuck in the sympathetic, fight-or-flight, āonā position."
It's useful to recognize that if a person was experiencing PTSD or similar prior to C-19, that they, like those with other vulnerabilities, might be more adversely effected by a viral infection that could attack the nervous system.
I'm familiar with issues of being stuck in a sympathetic state, and most assuredly about how that effects physiology and overall wellness. For me, years of qigong and some great therapy (and also years of training as a trauma therapist myself) have freed me from getting stuck in a sympathetic state. Below I will include links to peer reviewed papers that describe the clinical trials that I ran while at Dartmouth, as well as some other work related to body mind therapies and stress and PTSD.
I still live with various symptoms of Long COVID. They wax and wane with life's tempests and opportunities for tranquility and rest. Your comment makes me realize that I likely need to focus more attention in my posts and outreach on the nervous system.
Thank you for all that you put into these posts Amy. You are so very important to our community.
Kind regards,
Mardi
For anyone interested in bodymind therapies for autonomic dysfunction, here's a list of relevant - open access- papers on how we addressed subjects in studies and with clients.
That I have Long COVID, but am largely free of nervous system complications, may be just luck. Or, training in qigong, bodymind therapies like yoga and meditation may help to rescue some individuals. Below, 'Meditative Movement' is an alternative term for qigong.
Meditative movement for depression and anxiety.
Payne P, Crane-Godreau MA.
Front Psychiatry. 2013 Jul 24;4:71. doi: 10.3389/fpsyt.2013.00071. eCollection 2013.
PMID: 23898306 Free PMC article.
Meditative Movement as a Treatment for Pulmonary Dysfunction in Flight Attendants Exposed to Second-Hand Cigarette Smoke: Study Protocol for a Randomized Trial.
Payne P, Zava D, Fiering S, Crane-Godreau M.
Front Psychiatry. 2016 Mar 22;7:38. doi: 10.3389/fpsyt.2016.00038. eCollection 2016.
PMID: 27047398 Free PMC article. Review.
Digital Delivery of Meditative Movement Training Improved Health of Cigarette-Smoke-Exposed Subjects.
Payne P, Fiering S, Zava D, Gould TJ, Brown A, Hage P, Gaudet C, Crane-Godreau M.
Front Public Health. 2018 Oct 19;6:282. doi: 10.3389/fpubh.2018.00282. eCollection 2018. PMID: 23898306
Somatic experiencing: using interoception and proprioception as core elements of trauma therapy.
Payne P, Levine PA, Crane-Godreau MA.
Front Psychol. 2015 Feb 4;6:93. doi: 10.3389/fpsyg.2015.00093. eCollection 2015.
PMID: 25699005 Free PMC article.
The preparatory set: a novel approach to understanding stress, trauma, and the bodymind therapies.
Payne P, Crane-Godreau MA.
Front Hum Neurosci. 2015 Apr 1;9:178. doi: 10.3389/fnhum.2015.00178. eCollection 2015.
PMID: 25883565 Free PMC article.
Effectiveness of a Novel Qigong Meditative Movement Practice for Impaired Health in Flight Attendants Exposed to Second-Hand Cigarette Smoke.
Payne P, Fiering S, Leiter JC, Zava DT, Crane-Godreau MA.
Front Hum Neurosci. 2017 Feb 21;11:67. doi: 10.3389/fnhum.2017.00067. eCollection 2017.
PMID: 28270757 Free PMC article.
Wow, Mardi - incredible body of work here (and I know this is just the tip of the iceberg). Thank you for your insights on trauma and the nervous system, and for all of these great resources. I will check them out as I am hoping to pivot my career (someday) in this direction.
Excellent article! Thank you for using some of your spoons to write this!
Is there another establishment I can support you through? I do not shop at Amazon. Jeff Bezos gives money to Trump. Also there is currently a strike by Amazon and Starbucks employees.
I've been shopping at iHerb for my supplements and some other stuff - not affiliated in any way - just attempting to give you one option to Amazon.
Again, wonderful piece. Well done!
Thank you so much for reading and taking the time to get where I was coming from! (I love your username, BTW š). You know, I have grappled with this Amazon thing a bunch over the past year. The problem is, I canāt find another retailer that is ethical and has a wish list function that doesnāt reveal my address to people. I also canāt lead a trail to my name and address because disability has investigators. I canāt risk them learning about this newsletter. I would love any ideas you might have? And thank you for wanting to send something. That alone means a lot!
Throne.com lets u list stuff from other stores like Target and also hides ur address :) I don't even have my last name on mine
Wow - thanks for this, J. After the holidays, Iāll look into it further.
Yep, I'm pissed about that, too. Bezos has been bending the knee to Trump for a while now.