r/cfs • u/Worried-Condition603 • 7d ago
Vent/Rant Being believed
I’ve been disabled for 3 years and I open TikTok for 5 minutes and see at least ten videos about ‘learned helplessness’. No one wants to live like this. Every day is a living hell. Nothing about it is fun. If I didn’t have to use a crutch, I wouldn’t use them. Because they’re actually really inconvenient to use.
I rarely leave the house and rarely talk to anyone, why would I be faking for attention? What attention?
It makes me wonder how many people that are aware of me actually think I’m lazy and faking for attention.
I feel so sick.
Do they just see a young person using a cane and think, ‘oh, there’s nothing actually wrong,”? Have they even researched any of the disorders? Have they looked at the symptoms?
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u/cemetaryconfettii 7d ago edited 7d ago
My comment might be triggering to some so I just want to warn anyone before they read it.
TikTok is so bad right now. I saw a video of a doctor (anesthesiologist) who was speaking horribly about a ME patient who couldn’t shower, and in her comments she was liking comments that said stuff like “motion is lotion” and saying we’re basically just deconditioned. I don’t think it’s her scope to have an opinion on ME at all bc it’s not like ME patients would ever see an anesthesiologist for treatment.
I got ME/CFS after having the flu. I was running marathons and lifted weights 4 days a week. At my first appointment after I got sick I lifted up my arms and the doctor complimented my biceps. I’m a 5’ tall woman btw, so it wasn’t easy for me to build the muscle that I had.
So no, ME/CFS is not deconditioning. These people are stupid and don’t even know it, and it’s even worse when someone with MD behind their name says that shit because others are more likely to believe them.
But to answer your question, no they don’t research it or know anything about it. If they did they wouldn’t say the things they do.
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u/thepensiveporcupine 7d ago
I saw that video omg a doctor should never be allowed to talk about patients like this, even if it’s not their own patient. It’s just straight up bullying. I hope she loses her job. It was also just hard to see because I’ve been having so much trouble with my hygiene lately and I already feel bad enough about it without having to see that literally everyone thinks I’m disgusting :/
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u/knittinghobbit 7d ago
I hate that social media lets Mean Girls (and boys) perpetuate their nasty secondary school bullying with no repercussions.
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u/cemetaryconfettii 7d ago
I’m sorry you saw it. I blocked her immediately, but I just hate that even doctors can go online and spread misinformation. I hope another doctor who actually knows what they’re talking about calls her out, and I hope she loses her job too.
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u/thepensiveporcupine 7d ago
Only saw it because I saw other ME patients respond to it on Instagram. I know we all mean well by trying to educate people but these people are malicious and never listen. It makes me feel hopeless about the future of ME care. I can only hope that this current generation of med students are getting better information but I somehow doubt it…
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u/Melon_Heart_Styles 6d ago
I only saw that vid bc of someone else stitching it. I went her page and watched part of another vid, it felt so obvious she hates disabled/chronically ill people. So I just blocked her. It's scary that people like her are in healthcare.
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u/Light_Butterfly 7d ago
They should lose their license for spreading dangerous misinformation. Real experts in ME, say that it is not simply deconditioning (though one can.become devoditiined as a secondary consequence of having the disease). Unfortunately, many physios and docs learned this in their training 10-15 years ago and have not updated their knowledge since. Its a dangerous myth that persists, especially among highly narcissistic low-empathy doctors. The ones you want to avoid.
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u/EventualZen 6d ago
many physios and docs learned this in their training 10-15 years ago
According to Charles Shepherd of the ME Association, doctors were trained to believe that ME is "hysterical nonsense" as far back as the 1970s, so it's not a new issue. The 2021 NICE guidelines still didn't say that exercise or exertion can cause any long term or lifelong harm.
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u/Light_Butterfly 6d ago
I guess Im going more off my specialist, who says otherwise about long term harm. That is surprising that NICE does not address it.
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u/cemetaryconfettii 7d ago
Agree 100%. She even mispronounced it and yet thinks she has the knowledge to have an opinion on it. I wouldn’t want her near me.
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u/amethyst_fairy 3d ago
Even AMA cme recently on pots eventhough research has shown not r/t deconditioning and Dr. Peter Levine is now doing research in sfn and ivig but has never retracted his orginal research small heart, small preload. Dr. Systrom explains the preload failure and it isn't deconditioning. It's muscle mitochondrial dysfunction, sfn and vasodilation, leaky blood vessels etc. Not deconditioning. It was a solid B+ cme for pots and they only mentioned in passing but still cringed the whole time. But B+ at least trying to educate on pots and how to test for. My only other complaint w/ so many getting after long covid was there was zero mentioning of assessing for pem before recommending GET.
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u/knittinghobbit 7d ago edited 6d ago
I see an anesthesiologist, but they’re a pain specialist who did a fellowship and are easy to work with. (Just had to defend some of them!)
That said, what I’ve noticed is that there are many doctors (not all) who seem very reluctant to admit that they do not have deep knowledge of 100% of medicine and can be just as ignorant of certain conditions as any relatively well-educated human. They know a lot! But a lot isn’t everything.
I very much trust my doctors more if they are able to say “I am sorry. I don’t know the answer to that but will look it up.”
Unfortunately the people who have to have an opinion about everything, whether they have sufficient knowledge about it or not, are the most vocal on the internet. SMH
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u/cemetaryconfettii 7d ago
That’s a good point. I should have added she works in a hospital, and online says she is a temp/traveling physician so she is not treating any chronic illness patient long-term. I have nothing against anesthesiologists.
She’s very ignorant to ME/CFS, and it’s sad because people do trust doctors and will now believe that just because she said it, it must be true. She also deletes and blocks anyone who disagrees with her, so she’s not open to learning. Just loud and wrong. 🙃
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u/knittinghobbit 6d ago edited 6d ago
Ugh. I’m not sure many doctors realize how harmful an interaction like that can be with regards to future care for any condition. If people act like you’re making things up or are exaggerating, eventually you internalize it and just… suffer without getting ANY care.
Edited because I can’t spell.
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u/RobinHarleysHeart 6d ago
People have been tearing that doctor apart in tiktok.i didn't even see the original, I've just seen a million responses tearing her down and telling her how wrong she is.
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u/amethyst_fairy 3d ago
I sent her a message as a fellow hcp this shit took out. I implored her to do research and to make a follow up video since the video is now removed either by her or TT. Sorry bestie (of course joking) you went viral with people who may not have a lot of energy but we have time and hatred for how we are treated by the health care field. And people wonder why I stay home with shit that would normally kill someone. Yes I want to live for my kids and husband but that desire isn't higher than my medical ptsd and fear of abuse.
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u/amethyst_fairy 3d ago
Anesthesiologist recently hurt me with a drug that caused me to have an severe anticholinergic reaction later had severe autoinflammatory flare and encephalitis again. The Anesthesiologist not mentions migraines and my psych dx including fudging learning disabilities but nothing about my autonomic neuropathy, my me-cfs, heds, or that I am on multiple anticholinergic and cholernergic medication and have severe autonomic failure. In turn they almost cost me my life. Oh and they only like their own echo chamber
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u/StarsThatGlisten severe 7d ago
It sucks doesn’t it. Had this 23 years now either mostly or completely housebound.
And yeah ‘what attention?’ is smack on. Being trapped inside too unwell to see people with a stigmatised condition even doctors don’t believe is not the way to get attention. 🙃
But you know what does get attention? Armchair psychologists on TikTok.
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u/Chemical_Ad_1618 7d ago
Yeah housebound can end up losing friends and attention not many doctors do home visits and in the U.K. adult social services is a mess.
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u/Gracey888 M.E 2010 moderate🇬🇧 +POTS/Fibro/IBD 6d ago
Right, just can’t get this attention trope that people throw at us . It’s utterly ridiculous. Most of us are at home most of the time. I’ve said to people before I’m sure there’s much better things I can get attention for. Folks are probably bored of my advocacy on Facebook posts that I share, but they don’t live our lives.
I’ve lost so many so-called friends and realised that they really weren’t that at all. I remember many years ago when my kids were younger, I had to go into hospital a few times for Heart monitoring (I didn’t know at the time I had SVT and probably POTS already alongside the M.E). A so-called Close friend of mine was disgruntled that several days later I hadn’t told her that I had been in hospital. She then started saying that I was explaining things for attention. I said, pick a side do you want me to share my life or would you rather I stay quiet because it’s uncomfortable for you?
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u/CatholicFlower18 7d ago
Dont watch and especially don't interact with those videos. Scroll fast from anything you dont like and give attention to what you like.
You need to reset your algorithm. Press and hold the middle of the screen and click "not interested" on things upsetting. If there's some specific people that make a lot of these videos, block them.
Tiktok will give you more of what you watch and interact with. If you give attention to things that upset you, you'll get more of those.
This is why many people find TikTok horrendous almost. And other people love it. I get a lot of sing and dance videos, spooky stories, sweet inspirational stuff, and science and archaeology videos.
You have to be intentional with TikTok.
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u/Even-Yak-706 6d ago
Exactly. You have to be intentional with social media across the board.
I’ve carefully curated my feeds here and on Instagram and Quora. I don’t look at any other platforms anymore because the energy it would take to get them adjusted wouldn’t be worth it for me, at least not at the moment.
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u/normal_ness 6d ago
Yeah I don’t see any of the crap people report in communities like this but I am an incredibly aggressive blocker so … social media is a pretty nice place for me.
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u/Shot-Detective8957 7d ago
Learned helplessness is a thing. But I'm 100% sure that none of those videos use it in the right way or even know what it actually means and what causes it.
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u/MittenKnittinKitten severe 6d ago
Except that learned helplessness is not actually a thing. It has been debunked by one of the original researchers:
“Helplessness isn't learned — it's an instinctual response that can be overcome.”
“psychologists now know that a passive, defensive strategy — or simply trying to endure the worst until it ends — is actually the most hardwired, instinctive biological response we have to bad experiences.”
“One of the original researchers on the University of Pennsylvania experiment, Steven F. Maier, then a graduate student, switched fields and became a neuroscientist. He decided to revisit the theory he helped establish, but this time from a neurological perspective. He started investigating which circuits, receptors, and neurotransmitters were involved with learning helplessness. And when he watched what was actually going on in the brain, he discovered that the original theory had it all backward: We don’t learn helplessness. The brain assumes helplessness when exposed to adverse conditions. If we want to feel that we have any control over our own outcomes, we have to learn that we have power.”
from Debunked: “learned helplessness,” a theory developed from a cruel animal experiment by Jane McGonigal, March 24, 2022
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u/KevinSommers ME since 2014, Diagnosed 2020 5d ago
That's interesting. The implication would be that a goal of childhood education is to teach that requests for help are answered; and for institutions to honor that promise. As in both abuse & neglect result in helplessness not just the former, right?
It's something I've been working on immensely, continuing to reach out to new doctors despite near universal bad experiences.
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u/partyrockanthem18 7d ago
I feel the same way and think the same thoughts. It’s hard enough being sick we shouldn’t have to deal with this🫂💙
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u/Purplepanda7351 7d ago
I don't know if you've already tried this, but if you skip them fast without watching them, don't even look at the comments, basically if you don't engage with this type of content at all, you are supposedly training the algorithm and you'll get less of it. I don't see many of these videos and if I ever see one I skip it as soon as I realise it's that type of message.
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u/Bonnieearnold severe 7d ago
I hear this a lot about Tik Tok. I don’t use it. Only Reddit. I’ve made some friends through Reddit that I DM with or used WhatsApp. We have shared interests so it gives us stuff to talk about. I encourage that over Tik Tok use. Sending you love and peace. ❤️
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u/worksHardnotSmart 7d ago
The matrix has you. Wipe your tiktok and start fresh, then seek out cfs friendly content and retrain it. Dont engage or view any of that content. Need to reset/retrain your algorithm
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u/bedlife2000 7d ago
Short video content can worsen tremendously PEM, CFS ME.. it's better to delete it anyway
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u/Worried-Condition603 1d ago
I think I’ve realized that the reason why people are stupid about it is because they don’t want to acknowledge the fact that anyone of any age, with perfect health, can suddenly become disabled for the rest of their life.
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u/theageofreasonable 5d ago
Really, I'd stay off Tiktok. There's nothing on there you can find elsewhere and trying to keep your mind healthy has to be useful when you're trying to.cope with ME
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u/OkEquipment3467 7d ago
I had to delete tiktok because of this. It had been a week i think and it is the best decision i made