r/SipsTea • u/sco-go • 14h ago

Wait a damn minute! Bad time for a how-to YouTube video.

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u/sadi89 13h ago

not a doctor, but work in healthcare. I don’t look at Reddit for professional medical advice BUT I do subscribe to several subs for chronic and complex health conditions. It’s really great for hearing what it’s like to live with a condition and help understand the challenges people face when managing their health

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u/Silent_Equivalent965 11h ago

This is a beautiful idea

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u/Upstairs-Extension-9 10h ago

Yeah I’m in r/visualsnow but not a doctor, I have it although like most of Reddit it’s heavy on the memes.

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u/hanyasaad 10h ago

I thought it said Visuals Now.

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u/flooknation 7h ago

I have a structured settlement and I need visuals now

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u/the_Kell 2h ago

Call J.G. Wentworth. 877 Viz-Noww!

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u/Muffin278 8h ago

Learning about visual snow made me realize it isn't something everyone experiences. I thought it was just a quirk of how our eyes worked.

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u/Difficult_Cake_451 50m ago

Same! I learned I had it a year ago when a friend was explaining it to me. I just said “…that’s not how everyone sees??”

Though I guess I have it pretty mild compared to people in that subreddit. Aaaannnnd now I’m going down the rabbit hole of information about visual snow

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u/KarmaPharmacy 7h ago

Oh shit I’m no longer banned from there. Nice.

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u/Punumbral_Noise 9h ago

Damn that’s what the Moscow murderer had too. Sounds pretty terrible.

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u/Superficial-Idiot 8h ago

It is until you realise all the commenters are people just making shit up.

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u/Difficult_Cake_451 11h ago

…I want you to know that I have several conditions that are “invisible” and this comment made me burst into tears.

Thank you for seeing us.

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u/Thereisnosaurus 11h ago

Also not a doctor, but it is not uncommon for specialists to lurk on lived experience forums within their area of speciality. Sometimes it's unempathic curiosity, but there's plenty of specialists who get into a field because they really give a shit about that part of health and have a very patient-centered worldview. 

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u/Difficult_Cake_451 11h ago

I wish I had this experience. The doctors, while helping minimally, seem super indifferent most of the time :(

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u/Gold_Blacksmith_9821 10h ago

Non-healthcare workers have no idea how much emotional energy goes into treating and caring for patients. It seriously takes a toll on our mental health. So next time you think “oh the ‘your choice of provider’ is emotionally detached,” realise there’s probably a very good reason for it.

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u/Difficult_Cake_451 10h ago

I can understand that, but I do not appreciate being treated like my issues aren’t really a concern/they don’t want to actually figure something out/they label me as having a condition without actually doing any digging or tests. There’s a difference between emotionally detached and just not caring.

One of my conditions is been untreated for 3 years because they keep misdiagnosing it as “just anxiety” :( only 2 of my doctors are convinced it is NOT anxiety based on my symptoms. One of them is a psychiatrist, and the other is my migraine specialist. I’m thankful for them, at least.

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u/Thereisnosaurus 10h ago

It sounds like you have similar health challenges to my partner who has had very similar experiences (she rates both her psych and her neurologist as well). It's tough, and I wish I could reassure you.

If it helps any, it may be worth watching some videos on medical training and approprate approaches to consultations. I've found my work (i used to proctor clincial examinations) has helped me connect with my primary care providers by prompting them as to why I'm presenting and what I hope to achieve out the gate, and being ready for the kind of things they need to act. You need to be able to do this in a way that is respectful of their responsibilities, so much of primary care is ass covering more so than patient-centered.

One thing that should always be true is that your doctor should listen to you and respect your input. They may need to make choices you don't agree with, but they should always be able to clearly tell you why. Some doctors, like any profession, are shit. Don't go to them again if they are.

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u/NoHangoverGang 9h ago

In addition: the patients bill of rights.

The amount of patients I tell to go to another doctor and they act shocked that you can do that is insane. Like yeah man whatever you wanna do, they won’t take it personally. And if they do it’s just further proving it was needed to start with.

The other one that people forget is you have the right to refuse any treatment for any reason at any time (exceptions occur in extreme situations). This is a hospital not a prison, you are free to leave at any point. As much as I wish I could make you take your blood thinners s/p stent or valve surgery I simply can’t.

Not a physician btw but I tend to see the same patients two to three times a week so I get a good relationship going and can watch them a lot closer and for a lot longer than most providers.

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u/Difficult_Cake_451 30m ago

I’m sorry that your partner is also going through something similar with her healthcare providers. That really sucks.

I would like to think I’m pretty decent when it comes to talking to my doctors and for advocating for myself, but when they tell me “lol idk what else to do” I feel so aggravated, because it feels like I’M left with this huge burden of trying to figure out what to do next.

I’ve always been left to figure out what my next specialist might be, because all of the multitudes of providers I’ve seen just seem to either not care or genuinely have no clue. That isn’t to say I’m not thankful for what they HAVE tested me for, it’s just frustrating to feel like I’m the one doing all the research, I guess??? I’m not a doctor and I don’t know how much I can trust my own studies.

A big example of what I mean is that until recently I could barely walk because I had severe leg and back pain. I was “too young” for surgery and basically told to suck it up, take shots, or do stretches for 5 agonizing years. I finally found a surgeon to do the surgery and I can actually walk without pain now.

THAT SAID I will take your advice, It doesn’t hurt to be even more knowledgeable!

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u/Justieflustie 1h ago

And lets be honest, lots of healthcare workers are not working on their bedside manner.

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u/TheLongBlueFace 11h ago

I have interstitial cystitis, and several other illnesses, and have legitimately learned so much medical info from redditors while doctors I see are no real help.

It's not like I see a claim on reddit and assume it's true. It just let's me learn about unknown unknowns, then I can go read medical papers about it. I've easily read over 100 medical papers at this point, no idea how many but without redditors I would only know a fraction of what I know now

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u/Away-Boysenberry-584 11h ago

I’m a medical provider in a specialty. When patients have medical condition that uncommon that isn’t in my specialty, I like for them to explain it to me. I’ve learned so much from my patients. Mostly cancers or autoimmune conditions.
As for ER doctors, I can’t imagine how difficult it would be to know a little bit about everything. I’m sure they have to look things up.

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u/LikeIsaidItsNothing 3h ago

where is this magic place that doctors like you exist? my life has been ruined by a lack of trying or caring. i don't know how to cope with the depression over it.

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u/Away-Boysenberry-584 12m ago

Im definitely not perfect but its wild to me how providers won’t just sit and listen. It honestly doesn’t even take that much more time in a visit. The more you rush a patient, the appointments end up actually being longer and the patient leaves unheard. Honestly sometimes I can’t add anything except for the patient feeling heard.

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u/Luscious_rat 3h ago

You're doing great

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u/MissBandersnatch2U 10h ago

Have you ever checked out the site Patients Like Me?

eta you can interact with other people with your same condition and possibly get some info

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u/TheLongBlueFace 10h ago

I haven't but thanks for the info

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u/JulienBrightside 8h ago

A doctor will have to know about many different sicknesses.
A patient will eventually try to learn all they can about their specific one.

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u/Sling-gunner 4h ago

Reddit literally made me realize I have ADHD, and made me talk to my doctor about it.

Reddit also made me realize how much of my weird habits, quirks and flaws are actually super common ADHD symptoms.

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u/EducationalReview237 1h ago

I went to a gastroenterologist for IBS, and I find there's rarely any discussion of causes. It's just "Did you get a colonoscopy? Here's a GERD diet."

So I said, "Could it be related to my vagus nerve? Is that a possibility?"

He said, "Did you go to medical school? "

I said, feeling stupid, "No..."

He said, "Then let me be the doctor."

No more questions from me after that. I clammed up and didn't really get any help from the visit.

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u/shoeless_doh 11h ago

I hope you don't join any subs about lupus. Because it's never lupus

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u/stammer06 7h ago

that's gold, jerry!!! Gold!!!!! LOL

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u/JavelinaPR 9h ago

I am a doctor and I regularly pull up videos or articles on how to do specific procedures prior to doing them. I've done all of them in the past, but for some it's been a while and there are great reminders of specific steps to not forget and just make the whole procedure that much smoother.

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u/Exul_strength 4h ago

It’s really great for hearing what it’s like to live with a condition and help understand the challenges people face when managing their health

That is a great way of looking into complex health conditions. Often it's not only the health condition itself but the whole rat tail of problems which result out of the condition.

I got this shift of perspective since a friend got Myasthenia Gravis. (For non-medical people: a neurological autoimmune condition, which causes weakness and fatigue.)

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u/Hungry_Bluebird_4734 4h ago

Reddit is actually great for things.

If you can get to the interesting subs and away from the crazy political bot filled front page it’s actually good.

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u/ZaileHoutarou 4h ago

This is what my wife does. She also uses something called "UpToDate" for all things medical

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u/sadi89 1h ago

Yup! Journals, UpToDate, elsiver for all of the medical parts. YouTube, Reddit, and TikTok for voices of lived experience

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u/MisterSneakSneak 11h ago

I do this too. I sub to other subs to get more acquainted in that field.

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u/Razarex 10h ago

This should be industry standard as a way to listen to patients

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u/Glass-Nail-6270 10h ago

Not all heroes wear capes. Wish other professionals were as concerned and willing to advocate for people like you.

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u/Original-Reward-8688 8h ago

Basing any of your opinions off of anonymous platforms is not a wise idea. Gotta work on them internet street smarts

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u/Shot_Kaleidoscope_34 7h ago

I'm a psychologist, I've done the same for years for rare psychological conditions. I don't want to sit there during a session and feel like I have no idea what the patient is talking about if one happens to wander in with it. 

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u/No_Situation_2698 5h ago

I'm a psychiatrist and browse BPDmemes all the time for similar reasons 

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u/yellowlinedpaper 4h ago

I subscribe to addict forums (specifically ETOH) to humanize my more difficult patients. It’s really helped.

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u/Uesugi 4h ago

I am a vet and i do something simmilar. It shows me a different perspective on how others prescribe therapy and how the owners handle it.

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u/Long_Reindeer3702 3h ago

My biggest challenge is getting my doctor to believe me that I have challenges despite losing my career, my social life, my hobbies, and being close to losing my marriage due to daily pain and difficulty figuring out how to fix it. I changed my diet, quit drinking, lost 65 lbs, de-stressed as much as possible, saw therapists, saw psychiatrists, saw pain management (they laughed at me during my appointments), it's rough out there. I want to quit doctors altogether. I've even thought of trying for a medical degree but my brain is like a sieve lately. I wish I knew how to find a doctor that wouldn't laugh in my face. But I guess it is laughable to think I could get better after this long. 

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u/Xerderist 2h ago

Same, figure 1 was my go to for awhile.

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u/Maremdeo 1h ago

I did this when my dog was diagnosed with Lupus (SLE). I went to a subreddit to understand the symptoms my pup was having. I told the vet about some of these, and she rolled her eyes. I don't go to that vet now. How can you be so dismissive of other people's experiences just because you personally don't have them?

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u/sadi89 1h ago

I didn’t know there was dog lupus!

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u/SailorGeminiMoon 1h ago

This!! I also work in healthcare, and it’s so helpful to see how people talk about conditions/procedures outside of the medical world. It helps me understand patients better and ask them questions that we haven’t been trained to ask, look for things they might have tried that I haven’t thought of, etc.

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u/sadi89 1h ago

Yup! It’s how I found out that some diabetics who are sensitive to adhesive use the sensitive flonase on their skin prior to inserting their cgm!

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u/SailorGeminiMoon 15m ago

Wait! That’s so interesting and useful to my profession. Thanks!

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u/ellieminnowpee 1h ago

please make sure to also look at the meme groups for folks with various diagnoses and tell your patients! they can make one feel extremely seen and provide levity

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u/sadi89 37m ago

I love the meme groups! The regular groups are where people complain a lot because it’s a place full of understanding. The meme groups are where you see more of the day to day

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u/handsoapdispenser 52m ago

I have a rare disease and there is a very active subreddit sharing research and anecdotes. We live with this all day every day so we likely know much more about it than the average GP. Even with specialists we're better able to advocate for our treatment because we have heard what works and doesn't from other people like us. Obviously there are cranks and liars but mostly it's very supportive. 

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u/zidanerick 9h ago

The thing youtube/reddit would be great for I would imagine would be getting international perspectives on various treatments. As certain countries would have more lax procedures and others would be even stricter.

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u/PlayfulSurprise5237 7h ago

Well YouTube simply might be the best resource in the world.

I don't know if this is true, but if you have like a world renown cardiac surgeon showing a particular technique and explaining it, that literally better info than anything they could possibly summon there in the hospital.

Yea it sounds crazy that it's YouTube, but they do video storage better than anyone in the world, it's free, their website is more stable than any video sharing site in the world, it works on every web browser, and half the people in the world already have an account.

Only thing that's lacking is the bitrate kinda sucks.

Then again they could be watching some doctor creator on YT that's popular for reasons other than being good at their job lol

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u/George_Burdell 11h ago

i bet it’s not fibromyalgia, autism, or POTS communities lol

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u/sadi89 11h ago

Why do you say that?

I do follow communities in those categories btw.

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u/AimAlajv 7h ago

Thank you

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u/BaronVonHugendon 9h ago

I wish more professionals did what you do. Thank you.

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u/suspendmeforthis 8h ago

I know an oral maxillar facial surgeon spent 16 years in medical school who used YouTube all the time. He said no matter how much you've studied, it's always helpful to watch somebody do it first, and just because you've watched a video, doesn't mean you can ambidextrously stitch up a person's face, maintaining bilateral symmetry.

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u/Tough_Brain7982 8h ago

THANK YOU, we reaaaaally appreciate that

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u/Outrageous_Ad_1011 8h ago

Let’s not freaking forget that every medical professional depends on other people information, of course not “unreliable” source information but you get the point, we are not computers and the human body is still complex as hell

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u/KarmaPharmacy 7h ago

Join us on r/migraine

We aren’t okay! :)

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u/-mykie- 7h ago

As a patient with chronic conditions who has lost almost all faith in the medical profession, thank you!

It's nice to be reminded that there are still good ones who care out there.

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u/Abelour 7h ago

You are amazing , thank you

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u/Lolseabass 7h ago

As a hemophiliac thank you. But half the time the info for the doctor is “ask the patient” he can tell you what to do.

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u/Charming-Passage-115 7h ago

What kind of pages? I work and healthcare and I’m interested to follow some

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u/Accomplished_Hour320 4h ago

Which ones? I’m curious to see

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u/sadi89 1h ago

Diabetes is the one that got me started.

I also follow subs about rare diseases, migraines, pots, a general chronic illness sub, UC and IBD, I also follow the hematology sub which is kind of a mess of people posting blood work that fine. That one is interesting because it’s a reminder how laypeople see lab results and how health care professionals see so many cases of results in the extremes that we can be dismissive of people’s worries about smaller changes in their health

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u/ElizerAttikus 3h ago

You are an amazing person

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u/Mr_Sim_ 3h ago

Reddit is terrible if you want factual informations but it's great if you want feedback

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u/as_it_was_written 3h ago

It can be great for factual information, too, but it really depends on what subs you go to and how informed you are already. I think in most cases you need to already know enough to reliably weed out the nonsense.

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u/TheSprigganDragoon 3h ago

You are the exact kind of person we need more of in the Healthcare industry (and the world as a whole). The feeling you get when you're falling apart, don't know why it what to do, and the doctor just seems to not care is horrible.

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u/project-bandit 3h ago

be my reddit doctor

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u/Middle_Historian_199 3h ago

Oh… now I have to ask…. Have you heard of CRPS?

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u/sadi89 1h ago

Yup. Wouldn’t wish it on anyone!

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u/kmgt08 3h ago

What subs? Care to share?

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u/brucatlas1 2h ago

How are you going to approach this when AI is taking up the majority of social media interactions? Ai is especially active in the medical community,

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u/TheShellAnswerMan 1h ago

I wish doctors shared this sentiment.