Things People Who Have POTS Wish You Knew
If this is part of your life story, please share your insights! What would you like the rest of us to learn? What should we know about people in this community? How would you like people to interact with you? Should people ask questions? What’s the best way for people to learn about this? Do you have any resources (books, movies, YT videos, etc) that will give us greater understanding and empathy and kindness toward people who experience the same things you do?
If you’re not on this journey, we welcome you to listen, learn, and ask respectful, good-faith questions! Open-ended questions are highly encouraged, as they give people the space to share their unique experiences in their own words. While this is a safe space to learn about things you’ve never experienced, please remember to be sensitive, and avoid sharing harmful stereotypes or debating someone's lived reality. If you have a question, ask it with empathy. If someone gently corrects you, please be open to learning. Let's have a gentle, fun, friendly conversation where we support one another, because it takes all sorts to make a world!
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I’m adding a taglist to start, but this post is open to absolutely everyone! <3
@jesusredeemedme2425 thank you for tagging me 💗
@jesusredeemedme2425
I don't know what this is honestly 💙
Postural orthostatic tachycardia syndrome (POTS) is a condition that causes a number of symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue. While there’s no cure, several treatments and lifestyle changes can help manage the symptoms of POTS.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
@jesusredeemedme2425 Looking forward to this thread ❤️
@jesusredeemedme2425
Fortunately for me it was a short lived symptom after both pulmonary embolisms but as my immune system broke the clots down it has passed
I have been diagnosed with POTS and I do struggle with it ..im tired ..im off balance in all ways.. you never know if its your POTS acting up or something else ..and that we do the best we can no matter what that looks like
Only recently figured out I had POTS - couldn't place why I was so dizzy every time I stood and why it would make my feet and hands turn blue when I changed from laying to standing and vice versa, plus the whole 'can't stand for more than a few minutes' thing. Honestly never would have occurred to me if not for other people with it going 'hey, why are your feet blue' lol.
I have greater Autonomic Dysregulation and also subset POTS. Other things too like something related to MCas but maybe mastocytosis (idiopathic) and other medical weirdness. What I’d really like for colleagues, friends, and others to understand is that I’m not ignoring your pings b/c I’m being rude. I’m MEDICALLY OVERWHELMED RIGHT NOW. I’m currently in crisis and subject to passing out randomly; constantly on the verge on anaphylactic shock-and knowing that is a quick medical fix I SHOULD always have on hand (Epi-pen) but don’t because I can’t afford it and insurance refuses to cover it; and so so tired. I’m doing the best I can. I show up where and when I am able; I try not to kvetch; I help others if I see a chance. But I don’t have energy for extras and responding to cat Toks and political rants are definitely that.
I wish more people knew that just because I can do something one day doesn’t mean it’ll feel the same the next day. And also just because we push through things doesn’t mean we feel great doing it (despite faking it). Also when we say we’re tired, sometimes that means to me that my arms feel like 100lbs and it’s taking everything in me just to sit up. It feels invalidating when I explain that and people say “oh yeah I’m really tired too I stayed up doing _____”.
Does using the spoon theory help people understand at all?
