PROJECT POTS - Episode 14: Disclosing Your POTS Condition - Postural Orthostatic Tachycardia Syndrome

PROJECT POTS - Episode 14:  Disclosing Your POTS Condition - Postural Orthostatic Tachycardia Syndrome

project pots with NormaLyte


Disclosing Your POTS Condition - Postural Orthostatic Tachycardia Syndrome

Hello everyone its Valerie back with another episode of Project POTS.

This week I want to talk about something that probably all of you have struggled with at some point and that's talking about your POTS diagnosis with other people.

For me this was something I struggled with in the beginning. I either had a habit of telling people everything or telling people nothing and it's been kind of a process to find this fine balance of when, if, and how to disclose this information to other people. So I wanted to briefly talk about some things that I keep in mind and really the main thing that I'd like to say is that not one size fits all and the main thing that I think is super helpful is taking things gradually.

Obviously there are some people, for example professors you're discussing accommodations with, that are going to need to know the full story right off the bat.

That being said, for the majority of people like your peers, your friends, or coworkers it's a good idea for them to know but they don't necessarily need to know all the details right away. For example, when I told my friends that I struggled with a heart condition I left the details pretty vague. I just mentioned ways it would affect me and our friendship.

So talking about, for example, not being able to stand for a super long time, having to have a lot of water, or having to eat certain things. Just kind of letting them know why I acted a certain way sometimes or why I had to do different things sometimes.

As time went on and I got closer, they now know a lot of the mechanics of why I feel that way. Or when I have to go to doctors, different treatments I've tried, and things like that. I do think sometimes it can be very daunting to think about all of the aspects of POTS that we live with and how to possibly convey that to someone. I think the best thing that I can say is to take it one thing at a time.

Again this is going to alter a lot depending on who you're talking to.

The way you explain POTS to a friend will differ from the way you've explained it to a co-worker or even a potential romantic partner but I also really want to stress that it should be on your own terms.

A lot of times I feel like there's a pressure that we have of needing to disclose, especially for those of us that have obvious key signs that we do struggle with some sort of illness, whether that's using mobility aid or having to take a lot of medication or things like that but just because your POTS is visible does not mean that you have to disclose.

Disclosing how and when and why and how much is all 100% up to you and don't let anyone take that from you.

So I hope this quick little video helps some of y'all and I hope you all know that I've been in your boat and I am here for you if you have any questions or would like any support and also just that I'm proud of you all.

Talking about your diagnosis is not an easy thing to do and I hope you all remember that. So I hope everyone has a wonderful wonderful week and I will see you soon!

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