How To Explain Pots

[jkapache]

MY family and friends mean well, and are STARTING to get the idea of me being sick... and what POTS actaully is, and does to the body. However new ppl that I meet- and friends of friends ask about it, and I try to explain- however most automatically go off and assume there own things- that is is a problem with my heart- or the blood, or muscles- but they dont really understand what POTS REALLY is- they just start asumming. What is a quick easy way of explaining POTS so they understand and start to spread true things instead of these off the wall ideas... some of them are as wacky as POTS! I totally realize that rumors are going to be spread ect... but I would at least like to sort of be able to explain it to the ppl that actually do want to learn! I get it- its just explaining it is a tuff one sometimes... specaily when I am trying to deal with memory loss and brain fog anyhow!

[Dizzy Dame]

I usually just tell people that I have a heart condition. While this isn't the real truth (my heart's just fine), it's the fastest, most painless way to explain what's going on. I've learned that most people don't really care to hear exactly what's wrong with me, even some of my friends don't really want to know. I think this is because illness makes healthy people uncomfortable in our society. When a healthy person is around a sick person, it reminds them that they too will get sick and die one day...which is a very unpleasant thought for most.

When people do express an intrest in the mechanics of what I have (which, to be honest, is very rare), I tell them that something (most likely lyme disease) damaged the nerves that control my blood vessel constricton, and I have a hard time with blood pooling in my legs when I stand up. If they want to know more beyond that, I refer them to the DINET site.

I hope that helps!

-Lauren

[futurehope]

I usually say that I have a medical condition that makes it difficult to stand or sit for any length of time. I can tell by looking at them if that is sufficient. If they want to know more, I might say that my blood tends to pool in my legs instead of going up (I point to my head) due to problems with my autonomic nervous system, and it makes me feel bad. Anyone who is still curious gets to read one of my POTS brochures ( which I always have with me) from this site.

In my experience (4 years worth), most people really don't want to hear too much.

[deeplyset]

I usually tell people that I have an autonomic nervous system disorder disorder called POTS and it affects all the things in your body that are suppose to function automatically (ie you don't think about it). Your heart rate, blood pressure, going to the bathroom, chemically. Most people's get that... And those that are insterested ask how the are not functioning right. I'll then tell them each one and how they affect the other.

[jenwclark]

My standard, one-sentence summary is, "The part of my brain that is supposed to regulate blood pressure, heart rate, and various other important systems doesn't work very well." Followed by as many details as seem called for.

[Guest dionna]

i agree with them that most people don't really want to hear about it. it just depends on who i am explaining it to and why i am.

such as: in town i just tell people that i have a medical condition that makes me pass out so they aren't as shocked and wanting to call 911.

or: if it is someone i know i usually say that something in my brain got messed up some how and it doesn't send off the right signals at the right time so my body doesn't know what to do and when.

i always tell them though that i am fine and not to worry, it is just how i am now and i have gotten use to it. that usually satisfies everyone. in fact, no one has really wanted to know anymore about it. sometimes i tell them more though if it is someone i am going to be spending a lot of time with just so they know what to expect.

dionna

[Eli6596]

My most common explanation is "I pass out when I stand up too long" I agree that most people don't want to hear more. If someone seems interested I will explain more.

Most people are polite. However, I had a total stranger (selling me newspapers) last month ask me too nosy questions. He asked me "Have you ever passed out when driving?" Is it genetic? Don't you worry that your children will get it? You should tell your children's doctor to watch your children for it. I wish I had told him that he was being rude, but I was just too shocked at the time.

Karyn

[Sophia3]

Years ago, while shopping for a new mattress, an elderly salesman was being very kind and talking to me. at one point I was weary of standing and partially reclined on a mattress. He asked if I was ok..as I stumbled to explain what was wrong with my body, he ASTUTELY said..."It sounds like your body is allergic to gravity."

YES!! It was the first and ONLy time a stranger (or friend or family member) GOT OUR ILLNESS so quickly.

I wanted to hug this man and adopt him as a grandfather. Anyway...I have used that line on occassion..but simply add, my brain and heart do not communicate well and I must have access to lying down or sitting with feet up. In a nutshell..and go from there. (My HR soars, my BP drops ...or nowadays, my BP spikes.