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hello, i was recently diagnosed with pots and like all of you im sure am having a hard time dealing with how to talk to or deal with other people about my illness. they dont seem to understand very well on what really is going on in our lives since we can seem perfectly healthy when really we feel very sick, i was just wondering if you had any advice, anything would be greatly appreciated! thank you have a great day! ~mary

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hi mary,

welcome to this forum! i am sorry that you have reason to be here, but now that you have to it will be a trememdous help. there is A LOT of information on this site and there are lots of helpful people, willing to listen AND who understand!!! (i remember when my husband found me this site, i kept on thinking: that's ME, that's ME :lol::lol::lol: ).

take care,

corina :)

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Welcome! I know you will find that everyone here can relate to what you are experiencing, and I know for me that made me feel less alone and fearful of my condition. This is a warm bunch of people and you will feel right at home quickly. So, welcome again.

Cheers,

Sheridan

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I use the line, "my body is unable to properly regulate my blood pressure".

And then when they see a particular sympton, it simply is "what happens when your body is unable to properly regulate your blood pressure". I do often say it is not dangerous because I am forced to lay down sometimes and people get scared.

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hey, thank you all for replying i really appreciate it, i am feeling very welcome and happy to be here, its so wonderful to have other people to talk to about all the crazy stuff going on with our bodies. thanks for the advice pat, i think that should work well, hope you all have a wonderful day ~mary

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  • 4 weeks later...

Mary,

You'll find the best friends and support right here! :) People don't understand and often it's our friends and family that are the worst offenders. :( My daughter has referred to herself as the invisable teenager, because your friends often forget about you.

My 17 year old daughter has POTS.....her dad's still in denial that she is sick. When we were at Mayo Clinic in 2005 they kept repeating, Sir you do understand this is real and that she is sick don't you? Four 4 years dealing with the school and staff that didn't believe us.

The best advise is to keep your explanations very simple....my blood pressure doesn't regulate itself.

You'll learn that you need to put your energy into taking care of you and not be so concerned about what others think!

You may not always be able to clearly define your illness to others, but you can choose how you let the illness define you!

In my daughter I see a greater maturity, compassion for others, stronger faith, preserverance and a great strength of character beyond her years.

Wishing you the best,

Paula

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