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I'm stuck with people saying you look great so than what's wrong with you? Everytime I have to answer that I get tounge tied. The responses are you should be glad you don't sweat than you won't stink or you don't digest your food well than eat slower. I get all kinds of ridiculous responses. I now even have anxiety when someone questions me. So the advise I need from you guys is how do you answer the question What's wrong with you and why are you always sick, you look great.

Maybe if I felt more confident about answering those question people would understand or at least try to understand what we all go through on a day to day basis.

It's hard for me to answer myself because it doesn't make any sense to me either. I was young and healthy and somehow I now have autonomic dysfunction.

Thanks

Dayna

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yeah...know what I hate most? people always tell me how wonderful i look on the days i feel the worst.

So, for people who don't really care but are just being nosy I answer vaguely that it's in neurology. To people who care i tell the truth, that it's a breakdown of the part of the nervous system that controls things the body does automatically, mainly that the head and the heart aren't communicating in a great way. Most people respond well, although sometimes people say stupid things like, well thank G-d it's not MS. It took a long time until they figured out the diagnosis, so i'm grateful i can explain it now without getting funny looks. But try not to feel pressured into telling your personal stuff to people who are just not going to be connecting to you in a helpful way. Rather not go into details, but I learned that the hard way.

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Hi Dayna - I hate the "you look great line" I am leaving in an hour for a hair appt, and my hairdresser never ceases to tell me I look really great and not sick at all!

I agree with Ariella - Only my close relatives know the ENTIRE thing.

I dont feel I owe the world an explanation for myself, nor do I feel the need to educate them on my condition. If people persist I say I had Lyme disease that caused Neurological problems and leave it at that....

If I really do not want to talk about it I say its very complex and too difficult to quicly explain.

I have realized that most healthy people do not know how to react or know what to say to someone who has a chronic illness never mind one that is unknown to many...

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Oh yes, the classic "you look great, you must be feeling better!"

On the other side of the spectrum - It really bothers me when people don't ever ask or even acknowledge my illness.

I have a brother and sister-in-law who have never asked a single question or even acknowledged that I'm ill.

Anyways, I usually tell people that I had mono which damaged my nervous system. (I rarely use the term POTS)

Lisa

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Hi Dayna, it is tough to answer that question. I was just asked yesterday and didn't want to go into too much detail so my shortened explanation is that I have a circulation problem that affects my heart and I can't stand for long periods of time without fainting. At least this way I'm conveying that it's something to be taken seriously.... and people seem to understand my limitations better when I mention it's heart related. For example, then it makes sense why I'm taking the elevator versus the stairs.

Pam

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I am a pastor's wife in a large church so I have MANY people ask "Now what is it you have?". Most people confuse the "autonomic system" with "autoimmune" and begin to tell me how to boost my immune system.

I too get a lot of the "Well, you don't look sick at all!" and often on the days I feel the worst. I think it is the only thing they can think of saying.

Here's how my husband described my illness recently... I thought it was really good.

"POTS is a syndrome which means there can be many different causes for a set of symptoms. The basic problem is in the autonomic system as it regulates blood pressure and blood volume. This leaves her with very low blood pressure, dizziness and fatigue, especially when standing along with a variety of other symptoms. The kindest thing you can do for her if you are talking to her is make her sit down."

The thing I find that most people just don't understand is how difficult it is to stand. I will have someone stop me at church and ask me about my illness or how I am doing. As I stand there, trying not to fall down, leaning on a cane, they will proceed to talk and talk. It just shows me how much they don't understand.

Like Jenn, sometimes I just answer that it's too hard to explain. Other times I go into detail of my symptoms, but usually, I just say I have very low blood pressure which is affecting my whole system. Not a complete explanation, but usually enough for most people.

~Roselover

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Guest tearose

I too limit how much I say to "strangers"...those who seem curious more than really concerned.

I need to work on a new statement because saying "my autonomic nervous system does not work properly" has led to many follow up comments about "nervous conditions" and I don't have a nervous condition...so I'm probably going to say "autonomic regulation system" in the future. :P

Roselover, may I kindly suggest you treat yourself to the next step up in a cane? Try a seat cane! This way, whenever and where ever someone starts getting chatty and you need to sit down...you have your chair right in your hand!

take care, tearose

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I just say I have a condition which causes my heart to beat too fast, especially when standing up. I know it's an oversimplified explanation, but at least it's something that people can actually visualize and understand.... :P

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Hand them one of the DINET cards that came with the bracelets. Those are TERRIFIC. I keep one in my purse all the time. If you don't have one handy they read:

"Dysautonomia can affect all the autonomic (autonomic) functions in the body, including the vascular, respiratory and digestive systems. Each day may bring health challenges for those with the syndrom including abnormal fluctuations in hear rate, blood pressure and body temperature. The simplest activity, such as standing up may be a challange!"

Of course if that's a mouth full and it's someone you don't really care about and they say "You look great so than what's wrong with you?" -- just ignore the second part and accept the compliment and tell them you were recently voted America's Next Top Model ...

Hang in there! WE know just how you feel.

EM

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Hi everyone,

This bugs me so much. No-one has a clue that I might have an illness because I look so "young and healthy" I hate the stares when I use a handicapped spot or use a scooter in a store. In Walmart, when a older woman saw me using a scooter, she said to her friend, "Well, I guess EVERYONE is using those scooters now." Some older people are much healthier than me.

People don't have a clue about what a nervous system problem means. Lots of people think a neurologist is a brain surgeon. Lots of people don't even know that neurology means. However, people understand heart problems or cardiac problems and take it more seriously. My short explanation is that I have a cardiac problem while I put my hand over my heart for visual aide! Some cardiologists see POTS so it is not a total falsehood. POTS does affect the cardiac system as you know.

My other explanation is that I pass out when I stand or walk too long.

For those who know me well, I explain in much more detail. Our bodies produce adrenaline when we are about to fight or run from a danger. My body constantly is too revved up with adrenaline. That is why I feel tired all the time. I might also say, my blood vessels in my legs don't return enough blood to my heart, and then my brain does not get enough blood. This causes me to pass out if I stand or walk too long. To try to get enough blood to my brain, my heart then beats too fast. This makes me tired all the time. People don't always pay attention, so sometimes I repeat the explanation years later. For example, I just discovered that my smart brother (a lawyer) thought that I had arthritis as my problem. He got me mixed up with my best friend with rheumatoid arthritis, despite the fact that I have had POTS for several years now!

I absolutely hate it when people want to stand and talk to me too!!!!!! When I am talking to someone I often ignore my body until I immediately have to lie down after talking to someone. I just bought a seat cane which can be used as a cane and then unfolded into a seat. I use it when I go out in public. I plan to wip it out when people want to run their mouths.

Karyn

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I tell people the system in our body that controls all the things we never think about is broken, so nothing works right. When I get the "but you look great" line, I always say, well I guess you need to take a look on my inside... It so annoys me. I lost 50 pounds because I COULDN'T eat and people thought that was great. Can you say, dumb and dumber? morgan

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you have me laughing about the nervous system thing. so now I know what that funny look I get once in a while is. Someone else wrote in about it getting confused with autoimmune diseases...I have friends who called me and said they were going to a dinner/lecture about autonomic dysfunction and I reluctantly agreed. It turned out to be a lecture on autoimmune diseases and how macrobiotics will cure that....well, I was hungry so Ii had a bowl of buckwheat, yummy, and then promptly blacked out!!

Sometimes I explain that most peoples bodies are on automatic pilot, mine is malfunctionong and needs an extra boost.:P

I too limit how much I say to "strangers"...those who seem curious more than really concerned.

I need to work on a new statement because saying "my autonomic nervous system does not work properly"  has led to many follow up comments about "nervous conditions" and I don't have a nervous condition...so I'm probably going to say "autonomic regulation system" in the future.  :)

Roselover, may I kindly suggest you treat yourself to the next step up in a cane?  Try a seat cane!  This way, whenever and where ever someone starts getting chatty and you need to sit down...you have your chair right in your hand! 

take care, tearose

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I am so glad that someone is posting this topic because I am so EEERRRAR! ticked at those comments. People tell me all the time that I look too good to be sick. What am I supposed to look like? Baggy sweats and hay in my hair?! My doc said it to me once because he went to check my ankles for swelling and I had on red fish net stockings (this was before the medical hose revolution of Feb 05). Just because I feel miserable doesn't mean my socks have to be miserable too!

I know that people are trying to be nice. I stole the line off one of the newsletters and I say that if I acted how I felt, it would be a miserable life for me and everyone else and that I just look okay because I am trying to have a positive attitude. That pretty much works.

Then when people ask what I have, I say that it is a failure of the autonomic system to do its job. Regulate pulse, blood pressure and when I stand- blood does not travel well to my head. They are usually at that point still trying to figure out the word "autonomic" and look like blood is not travelling well to their head either.

Then I say- it feels like you have food poisoning and heat stroke all of the time. Then I get the "ahhhs" and they understand. Also, then I explain that that is why I'm always in a ponytail- because I can't lift my arms to do my hair. Then, they conclude that, in actuality, I really do look a little under the weather.

Its a struggle. People don't realize that at any moment I want to throwup/die/faint and running around complaining about it and looking like **** is just so out of the point by now!

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