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thoughts on what to tell people about pots

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I have had pots/cfs for 9 years. I used to try to explain to people who knew me and would ask. I have been trying all this time to help my mom understand, but she still does not get it. 

She and my sister are always looking for a way to "cure" me. Right now, it is with exercise suggestions. I do try to walk in and out of the grocery store, or take a stroll around the neighborhood on good days, and depending on heat and humidity.

I plan to print off some information for mom. I am  thinking of just telling people I have a heart condition. Any suggestions?

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Your mom is a different case.  You can't fight emotion with logic.  A person who is well is won't understand what it's like to be chronically ill.  Try something like "Mom, I appreciate that you're trying to help, but I don't feel helped when people tell me how to get better.  I feel loved and supported when .....".  <-- this is pretty slick, boundary setting, communicating with an "I feel" statement.

An acquaintance? If I'm feeling open I'll say "I have a disorder of the autonomic nervous system so my body can't regulate my heart rate and blood pressure when I'm standing". I have that sentence memorized and rolls off my tongue easy now. 


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  • 2 weeks later...

I have had to simplify it even more by saying-The part of my nervous system that controls my heart rate and BP and other functions is not working correctly

My Mother is sympathetic and is OK with it as long as "she didn't cause it"

The rest of my family along with many friends thinks its all in my head and that I am "lazy" until I explained the TTT results. I have lost alot of friends because you can't plan ahead with this.

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