people just don't understand

[SparkNik]

Just felt the need to post this today. I really have a hard time with people not taking the time to understand this condition. I was at a family outing today and enjoying myself. We got onto a conversation about people getting older and the hosts of medical problems that arise. So I came out and said that I am young and have a host of medical problems. My dad turned around and said that most of my problems are emotional not physical. He knows what I go through yet it is like he is denial that I have this condition. He made me feel like my condition was all in my head. I know he doesn't mean to hurt me in anyway, because when I had my flare up last year he was there for me (although it took the heart monitor results for him to realize how bad my heart functions). He just does not want to accept that I am sick and have a real medical condition. Then when he says things like it's all in my head in front of people that really makes me feel bad. Not only does this condition take away from me physically, but it also does do a job on me mentally because I feel like I constantly have to prove to someone that I have a real condition. I am sick and tired of having to explain myself. I am sorry but I just needed to vent. Does anyone else have similiar problems with people not understanding????

[JacobyD]

I feel for ya SparkNik! I live in my wife's town with none of my blood relatives anywhere in sight. My wife is a WONDERFUL caretaker but her family thinks I'm wacko. Even when I feel I really need someone to stay with me at the house, my wife's relatives just roll their eyes and tell my wife I need a shrink.

Maybe I do need a shrink, but I could also use some support from the family and from my docs. This is the toughest thing about having this kind of illness. You gotta really think and act for yourself most of the time. Hang in there! We know how you feel!

-Dan

[justin]

one time i went to the er with palps, dizziness and ocassional tachycardia on standing, etc.

this was long before i had any kind of diagnosis. the guy who 'treated' me just happened to be the same doc who had seen me before (in the same er) a while back.

he publicly humiliated me, having me stand up and walk about 30 feet while hooked up to a monitor. my HR was only around 100, and he was like see there's nothing wrong with you now go away, or something to that effect. his whole demeanor was designed to make me feel ashamed and small (which i did), that i was wasting everyone's time and that i was clearly a nutjob. he didn't bother to do a history or anything, he listened to me talk for like 10 seconds before pulling his little stunt. i left feeling alternately mad at my body for failing to provide really obvious pathology while in front of a doctor (this was at a time when my symptoms, especially the tachycardia, were really variable and inconsistent) and just enraged at the inability to get any kind of help from the medical establishment.

ironically, i was admitted to the same hospital less than a month later, after being delivered there by an ambulance, with wildly fluctuating BP, tachycardia, arrythmias and unable to feed myself and stayed there for a few days while being taken care of by some REALLY nice doctors who took me seriously (although they nevertheless eventually decided i needed psych meds and was anorexic, and didn't consider chronic dysautonomia).

i guess this isn't the same as being denied support by your family and friends, although i have experienced that too to a lesser extent. it took a long time to get my mom to believe that it wasn't just all in my head, but as soon as she did, she became really good about championing my cause, so to speak...

anyway, i have lost a few friends over this illness, one in particular who was my roomate once, he just does not understand, and i don't think he wants to either. so our friendship has pretty much died.

[MightyMouse]

Yep, I know exactly what you're going through. I was out a couple of months ago with my uncle...and he confided in me that my Dad, although he's never said it to me directly, thinks I'm "doing all this for attention". To which I replied to my uncle, "yes, I'm such a good faker that I was able to trick the NIH into including me in their clinical studies." My uncle felt bad ...and I guess he was telling me in order so that I would not disclose information to my father that would just end up being thrown back at me, or have him call my a hypochondriac (which is apparently what he's been telling the rest of the family).

The other thing that bugs me is that my dad doesn't have the guts to say a single word to me either way...but is quite free to say all this crap when I'm not around. At 37 years old, I thought I was past getting that pissed about stuff that my parents do. Guess you never stop being "their kid" no matter how old you get to be...hence, it really does hurt when stuff like this happens.

big sigh. Got to let it go. Although, I'll turn into a fire-breathing dragon if he (or anyone else) ever has the guts to tell me such things to my face.

Nina

[ethansmom]

I feel for every one of you as well. POTS is definitely an "invisible" condition, becasue we look normal, and once led normal lives, and all the sudden we became "sick". When all the initial medical tests came out normal, I think we've all been told we were crazy by friends, family, and doctors before receiving a real diagnosis. Finding this baord was one of the greatest things I've had happen in a long time, because for the first time I feel like I am not alone!!

My parents have been the only ones who believed I was really sick, because they saw me suffer with various things over the years, and they have always been my greatest support. Even my boyfriend was very skeptical for a long time (and I believe deep down he still is). Having POTS nearly destroyed our relationship, because of my physical condition and the depression I fell into at the beginning. I am thankful for our son, because he is what gave us something to look forward to when things were at their worst. We're doing much better now- but whenever I talk about my POTS to this day, he isn't really into it. And we're talking about a really mature, super supportive man who has been my other half for 4 years. It's hard to explain to him that I may never be able to hold a job, because when he sees me every day I seem fine, because I am living life at my own pace right now. I try not to talk about how bad I feel most of the time! But he is left with all the bills and a major repsonsibility for a 21 year old, and I know in his mind he probably thinks I am just making excuses for not working.

My friends try to understand, but then they'll call me and want me to go shopping or go to an amusement park, or want to do something I can't do, and I get tired of explaining to everyone WHY I can't do anything. Sorry to ramble so much, but this was an appropriate post for the day I've been having as well = ) I signed up for classes on campus this semester (I usually take web classes) and after 2 weeks I could plainly see that it's not going to work (I can't sit still for all those hours in school, I feel sick the whole day and it's been miserable). I decided to cancel the classes and take them online instead, and now my boyfriend has to shell out $1200 to repay financial aid for the courses . . . just a bit of a vent, but this is a good example of the things we have to face. Good luck everyone.

[SparkNik]

I want to thank all of you for responding to my post. I have to say that my mom had been my life saver through all this. She has backed me up and been there for me through it all. Don't get me wrong my father tries but like I said I really think he does not want to face the fact that I am sick. But I thank God for everyday I am able to get out of bed and go to work. And I especially thatnk God for people like all of you that truly understand and helps lift the isolating feeling away. God Bless all of you!!!!!!!!!

[BabieDollHLC]

I know exactly what you are going through! My family has always been there 4 me, and diffently knows it is a physical condition, and not an emotional condition.

They have never questioned it! A couple of times when I went to the Er, they told me I must be crazy...they never even cheeked me out!! They asked me what I had, and I said POTS. They were like..POTS sorry but I've never herd of that before. So i told them about it..all they could say was..well that is very interesting. Then they brought me down to the counceling section. I couldn't belive it! So I told them to contact my doctor..which happened to be in the hospital and he told them about it. Then they let me go. That was a night I will never forget! All the times I went there, the other doctors understood everything, and even picked up on alot of things on the tests they did,and never questioned it! Alother time I went there those doctors that diddn't know about POTS were there again. They wouldn't treat me again. The paramedicts told them something was awfully wrong with my heart rate, and blood bressure. I was even blue that time, and had fainted several times..but They just told me to leave. So my pots doctor and everyone told me never to go back to that hospital..and I diddn't! I think it is the worst feeling in the world to be told that it must be all in your head or that you crazy! No one should ever have to go through that! I think alot of the times people are afraid of what they don't know. I think everyone should know about Pots and all the other related disorders out there. I plain on doing something about it! Good luck!!

[WifeofPotsMan]

I can relate to the feeling of family and friends not understanding this condition. I think that since the doctors have a hard time understanding what this is, it makes it more difficult for our family and friends. People aren't used to a health condition that you can't take a colorful little pill for that cures all of your problems. I mean even cancer, as terrible as that is has treatment options. With POTS, there is still no specific treatment plan that WORKS for everyone. I get so frustrated that in an emergency situation, meaning it's the weekend or what ever and I can't get a hold of his doc., I can't take him to the ER because they just screw it up every time. They can't find a medical test that tells them just exactly what is going on. Reading all of your responses made me wonder about something. How many of you have gone to the hospital because of symptoms that aren't limited to but include tachycardia, palpitations, feeling lightheaded & faint, chest pain and tremors? How many times have you received little or no care due to the doctor(s) who is treating you has a lack of understanding or the fact that they can see what's happening to you physically, but have a medical explanation for what is happening? I'm just curious.

[justin]

i've gone to the er maybe 2 dozen times for POTS-related symtpoms within the past 14 months...not including the times when paramedics came to my house but didn't take me to the hospital because my HR came down while they were there. somtimes i went on my own, sometimes i was driven by my mother, and sometimes i arrived by ambulance.

i was sent away probably 20 of those times without treatment after the usual lab work and ecg...

out of the remainder of my little visits, i was given psych meds, anti-anxiety drugs, pills to aid in digestion....and that's about it.

to heather c. :

your er story...that's terrible! and this was after you were diagnosed!? what ignorant jerks...once i fell off a moving train (long story, don't ask), hit my head, and started experiencing POTS symptoms. the paramedics took me to the hospital with tachycardia, high BP, and syncope. they had me on oxygen and i arrived hooked up to a heart monitor, on a stretcher. they were concerned, in fact they made me go to the er...i didn't really want to go. i couldn't remember what day of the week it was. the nurse who triaged me evidently didn't think i was too bad off, because i then had to wait 3 hours while people who WALKED IN by themselves with minor abrasions were seen ahead of me. the doctor who eventually saw me told me i had a concussion and discharged me. but since i was so far away from my house, my roomate had to borrow someone's car to come pick me up....i didn't get home until late that night, and this happened at like 10 in the morning. what a waste of time...

[Timbo]

My mother is a nurse who has dealt with people with orthostatic hypotension and similar disorders, so she had no trouble believing that I have POTS. I can't imagine why people who have no medical training of any kind think they know all about the human body and mind.

Tim

[JacobyD]

I, like most of us, had the same 'there's nothing wrong with you' speech given to me at the ER. Because their lab tests and scans don't pick something up, there must not be anything wrong with you - unless it is psychological.

The 3rd time I went to the ER with tremors, dysphagia, and tachycardia (165+ bpm) I was getting the same treatment when fortunately an ER doctor who was one of my company's clients came in and had me admitted.

This led to my EKGs, MRIs, Tilt Table Test, and Echocardiogram, which led to the initial diagnosis of autonomic failure. I don't know how many more months I would have suffered and continued to return to the ER if that doctor hadn't stepped in and admitted me...

-Dan

[Crys]

I have struggled so much with this over the years.

I have never tried going to the ER for POTS symptoms, maybe because I was already diagnosed as a teen so I kind of already know what is going on.

Usually when I bring up my PoTS I have my parents and husband being “supportive” but you can tell that on some level, they’re not really sure how bad it actually is. Like maybe I’m making a bigger deal out of it than it needs to be. My husband, who I’ve been married to for over 10 years, actually had the gall to ask me a few weeks ago: this POTS thing, are you like, sure you have it? Do you think you have it because you read about it or do you know you actually have it? 
I had to remind him that an actual doctor did actual tests on me and gave me actual beta blockers (which he knows, but it seems he conveniently forgot).

What is driving me nuts right now though is that I am pregnant with my second child and I’m in the first trimester and my symptoms are rendering me completely unable to function. And this is where the “support” really starts to slip. People are inconvenienced because no one wants to help me take care of my toddler, they’re busy with their own stuff, and therefore it becomes inconvenient to believe I’m genuinely in bad shape. I tried explaining to my family that I’m having a terrible time with this pregnancy and one aunt said “no, this is nothing”, as if I just need to toughen it out, and the other told me that when she gets depressed, she also has a hard time getting out of bed (insinuating that it’s all in my head). The only reason I had to mention it to my aunts at all (which I would generally rather avoid since they’re quite judgmental), is because I need my mom’s help since my husband is always at work, and they keep badgering her about coddling me or enabling me when I should be able to take care of my life by myself like any other adult. 

I wish I could just stop caring what they think. What is so aggravating is that I physically need help so I’m literally dependent on people believing me. I hate this. 

[Pistol]

@Crys I am sorry! I know exactly how you feel! My POTS started after the birth of my daughter ( who is now 18 ). I was completely overwhelmed between caring for a child ( and there was no family I could even ask questions ), working and taking care of a household. My husband thought I was "hormonal", others thought I had post partum depression. I struggled very hard to ignore my limitations and pushed through, in the end that is what made everything worse. When my daughter turned four I started having syncope and seizures, so that is when people realized there actually IS something very wrong. When I finally got a confirmed diagnosis I was able to educate family and friends but there still are a lot of people that think I am somehow at fault, whether it is laziness, attention seeking or mental illness. 

The following link has information about POTS that you can share with your family, maybe that will help them to see that you need help, and that you are not like other people. 

I really feel for you and know what you are going through. Please prepare your family that after the birth of your baby you will need a lot of help. If you explain to them that it is like that because of your POTS ( as outlined in the guide for family and friends ) and they can prepare for it you might get the help and support you need from them. 

Best wishes!