Things People Without POTS Don't Get

Things People Without POTS Don't Get

There are somethings that healthy people just CAN'T understand. They can feel bad for you, but they won't get it.
For example, with pots, a lot of healthy people won't understand

-why you are so constantly tired, we know it's because our bodies are working twice as hard to keep everything moving smoothly, but to them it might just be laziness

-the fear of normal things like going on a vacation or having a baby. Going on a vacation means being out of reach from your local hospital, it also might entail a lot of travel and going out, which can cause a flare in symptoms. Having a child is a worry for a lot of people with pots. I know it is for me because my blood pressure plummets just from HOLDING a child. My body can't even handle itself. How on earth am I ever going to be able to handle this one and a little itty baby one inside me. Then there is the pots pregnancy horror stories about bed rest for eight months or the severe symptoms that lead many to need to be hospitalized.


-both the yearning and the hatred for outings. For example, I love to go to the zoo, or museums, or art galleries, but I hate the fact that it make  me so sick. Going to a day festival can set me into a four day long episode where I don't even want to get out of bed. I have heard it called the event hangover and thing  like that. The event is fun at the moment but it will come back to get you.


-getting angry about the simple things. You don't know how much you love something or need something or want something until it  gone, or you can't have it. For example not being able to take long hot showers because the heat and the standing will make you lightheaded. Not being able to play on a school sports team if you wanted to. (I have never really been an athletic person, but if one day I woke up and really wanted to be on a soccer team, I couldn't.) Not being able to go up and down a flight of stairs at a normal pace. It annoys the hell out of your friends that they constantly have to wait for you. Having to go to the bathroom all the time from drinking twenty glasses of water. Adding salt to everything you eat so you can retain that water. Having to wear 4 layer  of clothes because your body has no concept of homeostasis.

-hanging out with friends gets to be a problem. Sometimes  I lie and say I can't hang out with people because I'm too sick. Sure if I told them that they might be like "oh it  okay we can just watch movies." But there comes a point where I am tired of watching movies. I know they are too, but I can't do anything else and that kills me. So I lie and say I can't come over, so they can make better, more interesting and entertaining plans with someone else.


-the complaining. Complaining is one of the things that drives me nuts. When I tell my parents about my symptoms, they tell me to stop complaining, to man up and he  over myself.  Then when I go to the doctor my mom comes out crying and says "Sierra, why didn't you tell me it was this bad." Like I never tried telling her that I was taking six pills a day just for chest pain. I did try, and you shamed me for it. Then there is the complaining you do when you're feeling sorry for yourself. I do this a lot. I sit back and complain about this that and every other symptom and cry about it. But I think every once in a while I am allowed to do it. If half the healthy people I know went through some of the stuff I do, they would complain too. I know sometimes I get a little out of hand, at that time please ask me nicely to stop complaining or distract me if it bothers you so much. Or just stop listening. Please do not tell me about how other people have it worse, about how there is kid  out there with cancer who might die tomorrow and I don't even have a terminal illness. That's not going to make me feel any better. That will make me not only feel like my illness isn't bad enough to be considered a problem in your eyes but will also make me feel guilty. I have every right to be said I want to be sad.


- the crazy amount of symptoms. Pots is one of those illnesses where your daily symptoms might as well just be pulled from the index of a medical dictionary because they are as random as that sometimes. One day I could have chest pain, dizziness, stomach aches, headaches, and be really tired. The next day I might be pretty fine with the exception of some pains here and there and a dizzy spell every once in a while. The next day I might be having tremors, anxiety, insomnia, chest pain, muscle spasms, palpitations, low blood pressure, my left hand might be on fire while my right it as cold as ice. You just never know. And sometimes that will aggravate people around you. " Well you never had that before. " " maybe your just a hypochondriac" "is that even a symptom of pots?"if  heard it all. Especially the hypochondriac thing. Trust me. I had a team or twelve doctors tell me that I have postural orthostatic tachycardia syndrome, I'm pretty darn sure I'm not making this up for fun, or for attention, or imagining it. If you call me a hypochondriac I will be  upset. My dad says it sometimes and  I just walk away. It's all I can do since he's my father. I  it were someone from school though, they better apologize within thirty seconds.

-school. This year I think everyone got the impression that I gave up on school. In reality pots cause brain fog, lack of concentration, not to mention the fact that symptoms are highly distracting to studies. I barely do homework because  I have to walk around school a day, sometimes drama club, go home and do my chores. By that time I am out of spoons, as the spoonies would say, otherwise known as out o  energy, will, etc. A lot of kids with pots are homeschooled by parents or online. I want to do this very badly. Teachers at school don't get that I didn't do my homework because I was to busy giving myself chest compressions because my heart was so out of wack or that I couldn't study for my exam because  I spent 16 hours sleeping trying to restore my body from the events of the day before. It's not like I don't want to go to school, I mean sure there's the kid  you don't like and waking up early and the lunches that never have enough food, but it's already hard enough trying to fit in and be accepted into groups as a sick kid. Some healthy kids  I know would die if I told them they had to quit their sports teams, let alone stay home all day and study instead of go to school, actually get taught, socialize, do fun projects, and what not.

And so that concludes my list of things that I have noticed people with POTS just don't get.
Hope you enjoyed.