Anonymous #1 12w

ok this got misunderstood majorly! i don’t dislike people getting diagnosed in any sense other than that it makes me sad and there’s not enough doctors who understand it. it makes me upset with the medical system and not enough research is being done on something that’s affecting so many

2

Anonymous OP 12w

The video is implying that the uptick in POTS patients are misdiagnoses bc “doctors won’t find the real problem” though. Which is just blantantly false bc it’s accurate, and the actual issue right now is many people with POTS triggered from COVID are having their issues completely dismissed as just being “long COVID” instead of getting the treatment they actually need for viral induced POTS

4

Anonymous #1 12w

It’s accurate as in there will be upticks in a syndrome that has well established links to viral infection as a potential cause being diagnosed

5

Anonymous #1 12w

i agree but that’s not how i interpreted the video at all. i think the system itself can’t find the real problem and there’s more factors involved than just covid

1

Anonymous OP 12w

Well that’s what the video is saying…so…maybe reevaluate sharing it for that reason alone. Anyway, right, there’s multiple causes of POTS (all of my dysautonomic problems including POTS were present since birth, and I don’t have EDS before someone says so) and none are greatly understood. But what is very well understood is that viral infections can lead to POTS (why isn’t understood well, but we KNOW it does). So the “real problem” is they still actually have POTS. To say otherwise is…icky.

5

Anonymous OP 12w

Their POTS isn’t any less POTS just because it happened from a viral pandemic, and a recent diagnosis isn’t any less valid bc it’s more well known because of the pandemic

4

Anonymous #1 12w

ok you’re just not listening to what i’m saying. i’m agreeing with you. i interpreted the video differently. pots is a problem and i’m upset with the way the system has dealt with it. especially the other conditions and/or problems that seem to come along with it. you can continue to argue with the wall if you’d like but my POTS literally came from an infection as well just not covid so let’s calm down

2

Anonymous OP 12w

In which way are you upset with how the system is currently handling it? Because the video is literally saying the system is just handing out POTS diagnoses instead of “finding the real problem”, and the real problem is people actually have POTS. The video is invalidating post covid POTS diagnoses

3

Anonymous OP 12w

So when you just keep repeating the video itself, without discussing what differences you actually find in it, it’s very difficult to have a genuine conversation

3

Anonymous #1 12w

again- not how i interpreted it. the system turns away pots patients very frequently if it isn’t mad enough or they continue to be seen by people who don’t know how to treat them. there’s not enough research being done on the connections between pots and other disorders as well like hyper mobility, eds, mcas, and gastroperesis. i feel that the system has invalidated the post covid pots diagnoses and ignored that the wider spectrum of dysautonomia needs to be studied and acknowledged more

0

Anonymous OP 12w

It doesn’t matter how you interpreted it if you’re interpreting it incorrectly, and refuse to acknowledge that when you’re called out on it. Even if it’s an accident you’re still spreading an ableist video. But you’re right, the system has historically done that, but now with the influx in diagnoses the system is starting to pay attention, and so much more research is being published right now because of it. More doctors are aware of POTS and it’s improving care and patient advocacy.

3

Anonymous OP 12w

Believe me we’re far from great but we are improving little by little

1

Anonymous #1 12w

the person who posted the video explained it much better in her comments. she has pots and her intention wasn’t to be ableist and mine obviously isn’t either. pots comes from many different things and doctors aren’t great about figuring out the why before treating it which makes a huge difference. that’s her main argument. wanting to understand its cause to better treat people. i’m “refusing to acknowledge” you calling me out because i disagree with you on the meaning of the video.

0