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What to say to a stranger about POTS when an explanation is needed


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Has anyone found a way to explain POTS in a short, concise way without causing alarm?  Anything with the phrase "heart condition,"  apparently sets people off. 

I had a recent experience at a hospital where I was going for some testing. Valet has been closed since the pandemic began. Although I parked right next to the elevator in the garage, it was about a full city block away from the lobby. After waiting in line for my health screening, another line for hospital security, and then over to the self-check-in kiosks I was in rough shape. I had my flip stick with me and took a lot of breaks on the way in, but I still had to keep moving to get to my apponitment.  

The kiosk check-in was so complicated that I needed help with the system. I called for help from the woman working the area. When she came over, she was concerned about my health. She had never heard of POTS, or dysautonomia, and didn't know what tachycardia was. When I said "a sort of heart condition," she started to run off to get a doctor. I called her back and said it was really a blood volume problem and I was okay, but needed to sit and needed help checking in. Finally, I just said that I was okay, that when I stand my heart goes wackadoodle, when I'm sitting I'm okay, "can I please just sit here on my cane and have you help me check in"?

I have answers for nibby acquaintances with whom I don't particularly want to have a discussion. I have answers for friends who are genuinely interested. But it never occured to me I would need to explain something like this in a concise way to a stranger who needed to know enough to understand I was not having a medical emergency. I have found some discussions in the forum on what to say to friends and family, but nothing quite addresses this. 

Any ideas?

Thanks

 

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Could try the i have autonomic nervous system disorder that makes things a bit more difficult for me. Well at least makes sense to me. I usually go with i have leprosy "Haha" sorry i just need some humor today, I am in a bit of pain.

Hope the first statement might work for you.

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Thanks, MikeO. Sorry you are hurting.

That is a bit of a mouthfull when I already am feeling bad. Most people without an autonomic nervous system disorder don't know what the autonomic nervous system is. Part of it being autonomic, I guess.

Got anything simpler? Just a few words that are easy to say and easy for the average person to understand? 

Thanks

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1 hour ago, MeAgain... said:

Thanks, MikeO. Sorry you are hurting.

That is a bit of a mouthfull when I already am feeling bad. Most people without an autonomic nervous system disorder don't know what the autonomic nervous system is. Part of it being autonomic, I guess.

Got anything simpler? Just a few words that are easy to say and easy for the average person to understand? 

Thanks

I don't have a good one liner that most folks would understand. Could try i have Parkinson's that would explain the stick and and needing additional help with the Kiosk as well as any brain fog.

Oh i do have a good brain fog one today. I have been putting in eye drops for my right eye hemorrhage so it was time to put them in went into the bathroom to do it but by the time i got in there i forgot what i was doing "Haha" so i brushed my teeth. Walked back out and it hit me what i was in there in the first place. 

This can be frustrating but i am learning to just roll with it. I would rather get a chuckle out of it than giving myself a beatdown.

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I can relate to the brain fog moments. That is me trying to clean the house every week. I just wander from room to room doing something with half-completed tasks I had forgotten about until I complete them all. Then, just when I think I am done, the dryer buzzes. It never really ends.

My one-liner for people who who are nibby: "a form of gravitational intolerance"

For TSA at the airport: balance disorder, and no I can't stand up. That keeps me out of the body scanner without being treated like a criminal or having my fitness to fly questioned. 

I thought about using balance disorder at the hospital, but I know I really looked like I was about to pass out. The lady there would have gotten a doctor anyway. 

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1 hour ago, MeAgain... said:

For TSA at the airport: balance disorder, and no I can't stand up. That keeps me out of the body scanner without being treated like a criminal

After i had my bypass surgery i did have a bit of a go with the TSA just because of the wire in my sternum but, it was ok. Yeah i was warned that someone might call 911 because of looking faint ((:angry:)). I am sure that is a good thing that folks are concerned.

I so WISH to be able to travel again. I used to fly out every two weeks for my job, i just can't do it anymore. It has been tuff just trying to do just normal stuff that folks do.

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@MeAgain...  I have had this problem many times. I usually just tell people that I have a blood pressure problem that causes me to faint or feel bad when I am upright too long. 

I have a funny story: once I was in Walmart ( when I was still able to go go there ) and as I started to feel faint I went looking for a bench. I was halfway through the clearance aisle when my knees buckled and I fell into the sales rack and there I laid waiting to normalize. Immediately a few people, including a worker, came to check on me. The worker lady said she would call 911 and I said: "No, just get me a wheelchair. I had knee surgery and my legs just gave out." They took the bait. 

@MikeO I still fly ( rarely ) to see my family in germany ( this was preCOVID ). When I do I have to use wheel chair assistance to get around the airport. For the safety check I usually stand up to get pattet down and once the TSA worker siad: if you can stand you can walk. I said there was nothing wrong with my legs but I had a heart condition. The rudeness of people is just mindbending!

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That's a great story about Walmart. I mean, sorry you collapsed, but quick thinking for the reply.

I like the blood pressure idea. It is something people can understand without freaking out.

At the airport, I always use a wheelchair. I found that carrying a folding cane with me helps make an invisible disability more visible. I also laminated a TSA disability card with "BALANCE DISORDER" typed on it. (https://www.tsa.gov/sites/default/files/disability_notification_card_508.pdf) With the cane and the card, I have never been questioned. Telling them that I cannot take off my shoes prevents the pre-syncope of putting them back on. Then they do the "pat-down," swab my shoes, and I'm good to go. On rare occasion I get an overzealous frisk, but never incredulous looks or rude comments.

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2 hours ago, MeAgain... said:

That's a great story about Walmart. I mean, sorry you collapsed, but quick thinking for the reply.

I like the blood pressure idea. It is something people can understand without freaking out.

At the airport, I always use a wheelchair. I found that carrying a folding cane with me helps make an invisible disability more visible. I also laminated a TSA disability card with "BALANCE DISORDER" typed on it. (https://www.tsa.gov/sites/default/files/disability_notification_card_508.pdf) With the cane and the card, I have never been questioned. Telling them that I cannot take off my shoes prevents the pre-syncope of putting them back on. Then they do the "pat-down," swab my shoes, and I'm good to go. On rare occasion I get an overzealous frisk, but never incredulous looks or rude comments.

@MeAgain...Thank You for sharing the info. TSA tips are very helpful!

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11 hours ago, Pistol said:

 I still fly ( rarely ) to see my family in germany

I do have family in germany as well. has been years since i have seen them. It is on my bucket list yet to reconnect.

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On 5/21/2022 at 5:04 PM, MeAgain... said:

My one-liner for people who who are nibby: "a form of gravitational intolerance"

Nice one!  

 

On 5/21/2022 at 1:48 PM, MeAgain... said:

Got anything simpler? Just a few words that are easy to say and easy for the average person to understand?

I often say rather casually: I faint if I am upright for too long, so .... (I'm going to lie on the floor now, I need to sit down, etc.) That usually works--no one wants to see me go down, and although I have never actually fainted, I come really close many times a day so I don't hesitate to conjure up that image. 

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@Jyoti

Omgee, people need to be seriously educated on this! Here is why: When I my daughters POTS is so bad and I can't get her to stay upright, or she starts having POTS seizures I have call 911! Let me say how many times you call 911 and they are "What" so I have to tell dispatch the LONG TERM of what POTS is. Do you think that dispatch would tell EMS? Um, no! 

When they arrive and ask what I'm talking about I tell them what I can before they take her as she usually isn't awake to tell them herself. Our neighbor is an EMT/Paramedic and he didn't even know. Lets say he got well educated quickly one night when we were throwing my husband his birthday party because she ended up having episodes! 

The next day I had to call again, because the treatment they gave here in the hospital wasn't enough. When they arrived they said OH, this is the lady with POTS! I said words travels fast eh. 

These last two times they came - One EMT had been there before and he knew and was educated and explained, the following day.... EH, nope! So I had to explain. I want to spread awareness! 

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